No End In Sight

Mugabi Bienkya talks strokes, international healthcare systems, and medical racism.

Brianne: I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

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Drew: Hey this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, We’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. Today we’ll be talking with Mugabi Bienkya about strokes, international healthcare systems, and medical racism. Mugabi also talks about his book Dear Philomena, which you can buy here. Some content notes for this episode: There’s some talk of food and appetite at the top of the interview and then again around 55 minutes in. There is discussion of electroshock therapy around 30 minutes in. Mugabi and Brianne discuss religion and faith healing from around the 40 minute mark to around the 55 minute mark. There’s some talk of the Vietnam war, landmines, and the Cambodian genocide around an hour in. As mentioned before, medical racism and colonialism are major themes of this interview, and there is a story of racism at the University of Michigan Hospital starting around an hour and 20 minutes in. The discussion surrounding this story includes a non-reclamatory use of the N-word and a mention of a gun. The bulk of this story should be over by the hour and 25 minute mark. Around an hour and 45 minutes in there is discussion of anti-Blackness from white women specifically, and this includes some conversation about Emmett Till. This story should be over by the hour and 50 minute mark. This episode also includes mentions of addiction stigma, forced tapers, the concept of “drug-seeking” and the ways anti-Blackness ties into these. Those take place at around an hour and 45 minutes in and 2 hours and 10 minutes in. And finally this interview includes a detailed description of suicidal ideation and auditory hallucinations as side effects of medication which goes from around the one hour and 30 minute mark to around the one hour and 40 minute mark. Before we start, here’s our disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

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Brianne: Okay. Well, I’m so excited to be talking. I like to start by asking people, how was your health as a kid?

Mugabi: So as a kid from about zero to nine, I would call myself relatively healthy. I can remember like, two alarming health incidents before nine years old, one being that I had jaundice as a baby. I was born in Nigeria, and it’s fairly common in Nigeria. And so it’s like, an alarming health thing, but at the same time, a fairly common alarming health thing. 


Brianne: So like, scary at the time, but not necessarily… like, plenty of people experience it and it doesn’t mean anything further, probably. 


Mugabi: Exactly, exactly. Some people end up developing complications from it, but most recover and go on to like, live healthy, able-bodied lives. And I don’t even remember it because I was a baby. So 


Brianne: yeah. Right. Of course. 


Mugabi: it did not affect me at all. And the other being that I had a tapeworm in my stomach when I was like, six or so. And I just remember that because I remember like, not having any appetite or not really having any desire to really eat food. And my mom was always like, up in my business being like, “Oh, how come you won’t eat?” I was just like, “Let me live my life. I’m not hungry.” 


Brianne: Yeah, “This is fine.” And she’s like, “It might not be yet actually.” 


Mugabi: Exactly. So she took me to the doctor and got me dewormed, and like, this giant tapeworm came out of me, which I was like just super grossed out about. 


Brianne: I bet! You were like, “Bodies! What are they doing?” 


Mugabi: It’s very, very creepy cause I don’t even know how it got in there in the first place. It was probably like, while I was playing like, in the dirt with my friends or something. But I remember after the tapeworm got removed, that was the first time that I discovered appetite. I was like, “Wow! So this is what it feels like to be hungry.” Cause I never really felt hungry before that as far as I remembered, because when you’re six, you don’t really have that much of a memory. My first couple of memories are like, four or five and so like, I didn’t really remember much of eating and enjoying food until the tapeworn got removed. And then I was like, “Wow, I’m hungry all the time, and I love food.” And I realized that the reason that I never felt hungry was because this tapeworm was just sitting in my tummy, making me feel full and eating all my food. So after that I put on a lot of weight because I was like, “Oh my God! Food is amazing.” 


Brianne: You were like, “This is a very different experience.” 


Mugabi: But those are like, the two, which were like, alarming, but not really massive deals. So I became disabled when I was nine years old because when I was nine years old, I had my first stroke. 


Brianne: Okay, so between six and nine, you were eating and doing all of these things. And then I imagine as a nine year old, this wasn’t something that you were kind of… either anticipating or knowing how to make sense of. So what… what was that like for you? Do you have a lot of memory now about what happened beforehand or how things unfolded or is it mostly things that you’ve heard repeated back? 


Mugabi: I remember it… Memory is one of those funny things where like, I think I remember it, but then again, I’ve also heard the story 1,000,001 times, and I also wrote about the story in my book. And so like, I’m not sure whether it’s like, the memory of what I wrote or the memory of what I’ve heard or the actual memory, but I do have a very… 


Brianne: Yeah. You have a timeline that you know about. 


Mugabi: Yeah, and I do remember it clearly because like, there are only three times in my life that I have felt what I felt when I had my stroke. And those three times were the three strokes that I’ve had. It’s a very, very distinct feeling, and so I remember what happened. And it was very, very disconcerting because I had no frame of reference whatsoever. I was nine years old. I was just like, playing with my friends. 


Brianne: Yeah. And I also don’t know much about the healthcare system in Nigeria. So were you still living there and what happened? Could you add that context as you’re talking, I guess? Basically, tell us a bit about the healthcare system, as you’re telling us about how you discovered this feeling, that… why would a nine year old have any context for? You know what I mean? 


Mugabi: So I’m not living in Nigeria. My parents are Ugandan, but my dad used to work for the UNDP. And so before I was born, he got his job. 


Brianne: As it happens. Yeah. 


Mugabi: And then they assigned him to the Nigeria branch of the UNDP. 


Brianne: Oh, gotcha. So when you were nine, I would love to hear about the healthcare system you were also working within because I know they’re so different in every country. 


Mugabi: So when I was nine, my family was actually living in Bangladesh. Because the way the UNDP worked at that time was they really worried about people getting a corrupt and getting in a government’s pocket cause it happened a lot. Bribery is a very common practice. 


Brianne: They were trying some other things. 


Mugabi: Yeah. And so the way that they figured out to like, work around that, is anybody who was like, in a semi… senior-ish position, they moved them to a different country every three or four years, so that you wouldn’t get too comfortable and wouldn’t start taking bribes and getting corrupt. 


Brianne: You wouldn’t be compromised. 


Mugabi: Exactly. According to their studies, it’s around the fifth year mark, when you like, start getting like, “Oh, I should, you know, start taking a bribe.” 


Brianne: Maybe that’s how long it takes for someone to convince you. It’s like, five years is how long it takes a really good corrupter to get into… to get you in their pocket? I don’t know which way that works. 


Mugabi: I mean, it makes sense because if you look at like, a lot of political leaders, most of them start off really like, “Oh, I’m in it for the people. I’m going to do my thing.” And then after a couple of years, they become everything that they were like, fighting against. 


Brianne: There’s a certain grind to it that really has a predictable outcome on a lot of people. Yeah, 


Mugabi: Exactly. So every three or four years they moved us around, so by the time I was nine, we were living in Bangladesh. And the health care system at that time was terrible. Especially for someone like me, who was a child presenting all of these strange symptoms that they didn’t understand. And so they just like… the day that the stroke happened, I was at this… it was one of those like, fairs at the school I went to. They had like, cotton candy and a jumping castle and like, games and stuff. 


Brianne: Yeah, like a carnival? 


Mugabi: Yeah. Yeah. And so I was just running around with my friends having a blast, and then I remember my mom was there, too. She was hanging out with her friends, just like watching over us, and I remember when we were heading home telling my mom… I remember when the fair was wrapping up I like, started developing this headache, and it’s to this day, tied with the other two strokes as the worst headache that I’ve had in my life. I developed a migraine disorder after that. And so like, this was a very, very distinct like, severity. 


Brianne: Like a sudden high migraine. 


Mugabi: High intensity. Yeah. 


Brianne: And an a sudden onset. 


Mugabi: Exactly. 


Brianne: Okay. And that would be really scary if you’re a young kid who has never had like, probably that kind of sudden onset pain before it sounds like. 


Mugabi: Yeah, cause it felt like sledgehammers were just being pounded into my temple at the same time. It was excruciating. But like, I had a lot of toxic masculinity ingrained into me at that point. My mom used to be a nurse. I don’t know if you’re like once a nurse, forever a nurse cause she still calls herself a nurse even though she hasn’t practiced 


Brianne: It’s a calling. 


Mugabi: But I remember having a couple conversations with her prior about like, the dangers of over-medication, and she was telling me that people tend to like, resort to medication as a quick fix when like, medications shouldn’t be the first line of defense, which is a practical and like, fair thing to say. But like, in my child mind, I was like, “Oh, this means anytime I feel any sort of like, illness, I should just tough it out and not take medication because I’m a man.” 


Brianne: Right. Yeah. of course. Yeah. 


Mugabi: Yeah. And like, that was a complete misunderstanding of the message that she was trying to communicate to me, but again, I give myself forgiveness cause I was nine years old. 


Brianne: Yeah. And it’s like, even if you know now, kind of, what her specific intentions were, I think that general idea or like, toxic masculinity in general is so present that it’s like, you’re kind of primed to interpret all advice as reinforcing that in a lot of ways, and it can be hard to unpack that, especially as a nine-year-old who’s having a really terrible brain situation. 


Mugabi: So I was having that terrible migraine and like, it was dreadful, but I was like, “Tough it out. Tough it out. Tough it out.” And then we headed home after the fair, and like, my brothers were like, annoying me as always. And I was just trying to like, get them to shut up by insulting them as always. 


Brianne: Yeah. Normal day. 


Mugabi: Yeah. And then one of their friends came over and we started playing this board game called carrom, which is like pool, but with these spherical discs that you like, flick with your fingers. It’s really fun. And so they started playing and they needed a fourth player. I had gone to lie down cause I was like, “Let me just take a nap. And like, this will wear off.” And then they like, barge into my room and were like, “We need a fourth player.” And I was like, “Okay.” 


Brianne: “This will be the perfect distraction.” 


Mugabi: Yeah, because carrom was a lot more fun than trying to take a nap. 


Brianne: Yeah. 


Mugabi: Then I remember we were playing, and they started arguing because they were trying to figure out whose turn it was next. And I was keeping track of whose turn it was, and so I tried to tell them it’s Nadine, who was my brother’s friend’s turn. I was like, “It’s Nadine’s turn.” And then they just kept on arguing. And I was like, “It’s Nadine’s turn.” And then they continued arguing. And I was like, “Why aren’t they listening to me? Like, I’ve been telling them whose turn it was. And they’re trying to figure out whose turn it is.” And so I was like, yelling, “It’s Nadine’s turn. It’s Nadine’s turn.” And then they all look at me, and I was like, “Why are they all looking at me with like, weird looks on their faces? What’s going on?” And then I realized that that was my first onset of aphasia where I thought I was speaking, but no sound was coming out of my mouth. The only thing that was coming out of my mouth was like an awkward croaking sound. And then they started freaking out cause they were like, “What’s going on with Mugabi? Why is he making this weird noise? And why is he like, spasming? 


Brianne: Yeah, “This isn’t what we would expect him to be up to right now.” 


Mugabi: Exactly. So they went and got my mom and like, because she was a nurse, she like, calmed me down, gave me like, some Panadol. Eventually my voice came back. They took me to the hospital, and the doctors there said that I was dehydrated. 


Brianne: Okay. Of course. Classic. 


Mugabi: And so they hooked me up on an IV and gave me some glucose and were like, “He’s good to go.” And I was like, “Okay.” And then my mom gave me this huge lecture on like, why I shouldn’t be running around with my friends and not drinking water and water is important and dehydration is dangerous. 


Brianne: Yeah. “Keep yourself hydrated.” 


Mugabi: And I was like, “Okay.” 


Brianne: You’re like, “Yeah, this all… of course I… That’s what happened.” 


Mugabi: Yeah, because I had no context. So I was like, “This must’ve been dehydration. I didn’t know dehydration could make me not talk.” And then I was like, definitely afraid of dehydration from then on. And I was like, “I need to drink water all the time.” 


Brianne: Yeah. Or that it could be this painful. And like, not to make light of dehydration, which is like, very serious for many people. It is just fundamentally not the same thing as a stroke. Yeah. 


Mugabi: And then like, I remember everything settling down and then I went back to school. Cause this all happened over a weekend. And I went back to school and like, my claim to fame in school was I was like, the number one in the class in handwriting. 


Brianne: Ooh, is fancy. 


Mugabi: Yeah, my third grade claim to fame. And I remember like, we were doing a handwriting exercise, and like, you know those cursive handwriting things where it’s like dots and you’re supposed to like trace over it? We were doing one of those, and my hand couldn’t trace within the lines and I was like, “What’s going on? This is very confusing. Handwriting used to be my thing, and now my hand can’t do what it used to do.” 


Brianne: Yeah, I’m sure you weren’t thinking in these words at the time, but it’s like, “I have this muscle memory that I am very used to using, and suddenly it’s just gone and that’s not like… holy cow, that’s disconcerting!” Again, I’m sure… your nine-year-old self talking about your muscle memory and then saying, “Holy cow.” But anyway, maybe that’s what you were like. 


Mugabi: No, I feel you. And then I went home and my mom’s like, “What’s wrong with your hand?” And I was like, “What do you mean what’s wrong with my hand?” And then she’s like, “Do not see what your hand is doing right now?” And then I looked down and my hand was like, curled up. I’m not sure how to describe this for the sake of audio. And I was also walking with a limp, and my mom was like, “There’s something deeper to this than dehydration,” in her mind immediately. And in her mind immediately, she was like, “I need to get him to 


Brianne: Yeah. And do you know… obviously this was quite a while ago, but do you have a sense of if they were like, “Oh, of course this hospital wasn’t helpful for this reason. And we know how to choose a hospital that’s more likely to be helpful?” I’m just wondering cause I feel like in American healthcare it can definitely feel like that, right? You’re like, “This hospital is terrible for XYZ reason, and this hospital is better. And if we can get in there, this person will probably get better treatment.” Do you happen to know if that was kind of going on at the time? It’s okay if not, this is just my systems-brain wondering. 


Mugabi: So I’ve talked to my mom about like, that day since then. Now that I’m an adult, she’ll be honest and open with me. 


Brianne: Yeah. 


Mugabi: And she said her and my dad had no idea what they were doing. 


Brianne: They were just like, “We’re going to keep trying.” 


Mugabi: Yeah, exactly. The internet was like, a new thing by then, and so they were just like, Googling left right and center and trying to figure out… and so they took me to a couple of different hospitals and all of the hospitals had no answers for me. And so then one of the hospitals recommended that like, if we can afford it, “You should take this child outside of the country because we think they’ll do a better job of handling whatever he’s dealing with.” And luckily, my dad worked for the UN, which has an amazing benefits package. Like, I’m still on their health insurance and I’m 29. And my dad died in 2005. I don’t even understand how that’s even possible. 


Brianne: You’re like, “This is the world we need to keep building.” 


Mugabi: But like, the UN, like every other institution, they signed these ridiculous contracts in the eighties when my dad got his job, but like, the minute the nineties hit and they realized that they were giving out these ridiculously generous benefit packages, they shut it down completely. And so anybody who wasn’t part of that eighties generation signing on does not have the same benefits as I do. I’m always grateful to my mom because she’s the person who talked my dad into getting that job because she was a nurse, and she saw that UN people always had their healthcare bills taken care of. And she was like, “This is amazing. I would love this for myself and my family and my children.” And so the UN like, flew us out to Singapore, on their dime. 


Brianne: Yeah. Pretty quickly? I would imagine. 


Mugabi: Yeah, pretty quickly. It was within like, a week. 


Brianne: Wow. 


Mugabi: Yeah. And Singapore has like, one of the best healthcare systems in the world, and it was like close-ish to Bangladesh, which is great. And so when I got to Singapore, we did extensive testing, and that’s when they were like, “Your son had a stroke.” And I was there with my dad at the time because I come from a family with five children, and my mom was not about to like, either leave the kids on their own or fly to Singapore for medical care, with four kids in tow. 


Brianne: Right. Yeah. Sometimes that’s what parents have to do in an emergency is divide and conquer. 


Mugabi: So all of my early medical memories, it was just me and my dad. And that was the first time that I consciously realized the crazy benefits that my dad had because they were telling him about all these procedures that they could run, but they were telling him about how expensive they were. And my dad was like, “Don’t worry about money.” 


Brianne: Right. 


Mugabi: Like, “The UN will cover it.” And it’s only now that I am aware of the health insurance package, now that I’m like, dealing with my health stuff myself, that I realize it’s like… what do they call it when it’s like, you can spend up to a certain amount? 


Brianne: There’s deductible and then there’s… that’s like the first amount that you have to spend in American insurance, and then there’s also out-of-pocket max, which is the most that you could spend, and then there’s lifetime caps, which is like the high end, which I think they made illegal? Those, I don’t remember. There’s something complicated about that, that I am not awake enough to get into, but those are like… at least in US health care cause it’s all private, those… well, because it’s such a mess, that’s kind of how they roll out. But it’s still like… cost is still such a factor in public systems too, since I also grew up in Canada. But people like, have the same kind of barriers of, if you’re in a more rural place that just doesn’t have the technology or it doesn’t have the expertise it’s… as soon as you start to put these stories together, you realize how much luck gets into getting the kind of care that our survival relies on, I think. 


Mugabi: Massively, massively. Because like, one of the things that I didn’t realize until relatively recently now that I talked to my mother as an adult, is that the doctors in Singapore told my dad that I wasn’t gonna make it to see 2002, and so that’s something that my dad like, heard, internalized, talked to my mom about, and then went ahead and told me everything was gonna be all right. We’re gonna figure this out. And like, I’m forever grateful to them for that because as a nine year old, I not want to have to deal with the fact that I was not going to make it to see my 10th birthday, you know? But like, I know a lot of situations where that is put upon a child, which is terribly unfair. And it was put upon me as an adult, when I was more capable of handling it, and so I’m forever grateful to them for providing that buffer. 


Brianne: Yeah. And you can see that like, that’s not a free emotional thing to have to navigate as a parent. And also like, so many people who get told information like that who survive longer come to realize that like, these numbers are just kind of off the cuff estimates a lot of the time by doctors who are just like, trying to make sense out of a situation. And I’m sure that there’s research on this that I don’t know about, so I won’t over speculate, but I just know enough people who are like… I get it. It’s a probability game, but like, this isn’t a helpful probability game to play for people. It’s our lives. Yeah. 


Mugabi: They told me I was going to die twice. The first time was then when, like, I didn’t hear it. My parents buffered it for me. The second time was… I had two more strokes in 2014 when I was in Michigan, and they told me I wasn’t going to make it to see 2016. And so like, for me, that’s just really created a concept of like, my entire life after nine years old, I feel like I’m living… I feel like it’s borrowed time because I feel like… if, you know, you’re assigned the death date by somebody in a position of authority, like a doctor, it’s like, anything after that, you’re like, “I’m still lucky and grateful to be here.” 


Brianne: Yeah. Yeah. “How did I get to this part of the multi-verse?” Yeah, so, okay. So that was when you were nine, and it sounds like both pursuing care and then probably treatment took quite a while, right? Like, this must have been an ongoing process after they identified would have happened. Cause there was a… quite a long recovery process, I would guess, whatever recovery even means in the context of disability and chronic illness. 


Mugabi: Definitely. Like, it took a semester for me to get back into school again. I had to like, drop out of school for a semester, which… I’m grateful for the fact that I was in the third grade, cause like, no offense to anyone in the third grade, but dropping out for a semester in the third grade and coming back into school in the fourth grade is a lot easier 


Brianne: Right. No, the recovery period is a little bit better. It’s a little gentler. 


Mugabi: Like, I moved back into the fourth grade… I’ve always been academically inclined, and like, my teachers got all my homework and stuff to me. And so I would keep up with all my like, class assignments in the hospital bed because it was distracting, and it was a way to like, still feel like I was in some sort of a routine still. Cause like, my dad was working when he wasn’t like, running from test to test with me. And like, he tried to keep me company, but like, at the same time he had to also get his work done. And so like, it helped me to be able to be like, “I’m doing my work too,” rather than like, “I’m just watching TV in the hospital bed.” 


Brianne: Yeah. 


Mugabi: For months at a time, you know? 


Brianne: I really relate to that from times when I’ve been in bed after injuries or viral infections and stuff. There’s a weird tension about it, of like, one thing about accepting disability is kind of detaching your worth from productivity, and there’s a lot to be said about that, but there’s this other thing when you are in bed and you’ve lost a lot of autonomy and you just want to feel like you’re doing something like… there’s so related. I don’t know. It feels like they’re kind of the same drive, but like, they’re really different emotional experiences. I don’t know. agreeing with me, so I hope that means I made sense. 


Mugabi: Yeah. I definitely feel you because I… one thing that I like, try to re-iterate time and time again, especially as of more recently is that like, everybody’s worth more than their work. And like, the whole productivity and work ethic is very ableist in so many ways, but at the same time, because we’re all so ingrained in like, capitalism and productivity and like, school… Everybody I know was in school from 0 to 18, and it trains you to think, and it indoctrinates you in a very, very certain type of way. 


Brianne: Yeah. It’s intentional. 


Mugabi: Yeah! Unlearning all of that is difficult. And so like, as much as I believe that not everybody should be required to work, especially as hard as a lot of people do, at the same time, you should be able to do things at your own pace and in your own way because there is some sort of like a joy that you get out of being productive to a certain degree. 


Brianne: Yeah. Yeah. And like, I don’t know, maybe we need good separating language. It’s like, having purpose or finding… seeking fulfillment, and it could be anything. I think that’s part of it, is that often, especially in late stage capitalism, those are intentionally conflated, the like, “Find your purpose, and also, make it your value.” 


Mugabi: Exactly. 


Brianne: Yeah. 


Mugabi: Because, like, I don’t mean making money. I mean like, doing something that like, gives you a sense of purpose, as you said. 


Brianne: Yeah. Purpose and cognitive stimulation when that is wanted. Yeah. It’s a whole other framework. Okay. Yeah. So you’re recovering, and you’re doing your work while your dad is doing his work, which… I think I’ve said this probably more than one podcast episode, but when I had mono in high school, I studied for the SATs when I was too sick to go to school, and I didn’t need to take the SATs. So I understand completely. It was just like, “Here’s the thing to do that gives you a framework for your day that isn’t watching the same TV show all the time.” 


Mugabi: And also hospital TV sucks. Like, we need a lot more selection in terms of like, hospital activities. One of the great things that I benefited from was because I was in the pediatric ward, I was around a bunch of other kids. They had like, a playroom. They had like, activities. They had a bunch of different stuff to stimulate the children, which I don’t understand why they don’t have that for adults cause it’s like, we need it too. 


Brianne: Right. You’re also just kind of there. Yeah. 


Mugabi: Because I noticed a massive shift in my healthcare when I turned 18, when I was no longer in the pediatrics, and I was like, “This is boring. Like, I was having fun back in the pediatric ward with my friends coloring and like, playing connect four and like, running around the playground.” And like, in the adult ward, it’s just a bunch of people moaning and complaining about life. And it’s like, why don’t adult wards have some sort of like an activity center? 


Brianne: Yeah, it doesn’t have to be like this. 


Mugabi: Yeah. Why do we treat the kids completely differently than we do the adults? I don’t get it. 


Brianne: Yeah. And especially, it’s like… when you’re sick, like, it shouldn’t also be your job to find ways to cheer yourself up. When you’re in a place that’s supposed to be helping you, yeah, it would be nice if they also, in fact, helped you with these other needs that are like, essential part of being a person. I don’t know. I’m just going to get mad about everything. That’s what I feel like this podcast is now. 


Mugabi: The healthcare system fails the way too many of us. 


Brianne: Yeah. Yeah. Okay. But they were doing some good stuff for pediatrics, basically, which is always good to hear. So how long were you there for in recovery? 


Mugabi: I was there in recovery for, I’d say maybe like a month or two or three. Because I remember after the doctors diagnosed me with having a stroke, they put me on blood thinners immediately because they said that they weren’t 100% sure on the cause of the stroke, especially because I was nine years old and they were like, “This is the first time we’ve seen this.” 


Brianne: Yeah. “We don’t have a lot of protocols.” 


Mugabi: Yeah. Cause they were like, “Everything that med school teaches us about stroke is 65 plus, smoker for 50 years, diabetes, overweight, like, all of these things that this child does not have.” And they were like, honest about being in over their head, but willing to try and figure it out. And one of the things they noticed is that one of the blood vessels on the left hemisphere of my brain does a like, loop-de-loop, and it’s like, a lot thinner than the rest are. And they weren’t sure if the like, effect of the stroke on the brain caused that blood vessel to like, twist and become thinner because the stroke impacted the brain and that blood vessel like, reacted. Or if that blood vessel was like that all along because I have no brain scans before I was nine, because why would a child have to have an MRI or a CT scan? There was no reason. And so they’re not sure if it was like that all along and something about like, that day set it off, and they’re also not sure if it was like that and if it’s completely unrelated to the stroke. 


Brianne: Right. 


Mugabi: They can’t tell a cause and effect after the fact 


Brianne: Right. And like… like you said, we don’t look at every single nine-year-old’s brain when it’s presumed healthy, to have a baseline. I’m sure that there are studies. I understand all of that, but that’s still, like… we don’t actually know everybody’s body on the inside, so we don’t know what… when something is guaranteed to cause something else. It’s unknowable still. 


Mugabi: Exactly. 


Brianne: Yeah. 


Mugabi: And that’s the one thing that I really appreciated about the initial medical care that I got, which is very, very different from the medical care that I got in the states when I was an adult, and I believe that race factors heavily into that. Because like, in Singapore I was this Black child with a father with some high position in the UN who… the UN was covering everything. And I was treated with a sense of, “We’ll be honest and upfront with you, and we’re not going to gaslight you.” So they were very, very honest about what they knew and what they didn’t, and they put me on blood thinners immediately because they were like, “That blood vessel is like, very suspect and is of concern for us, and we don’t know if without these blood thinners, you won’t have another stroke.” 


Brianne: Right. “This feels like the more conservative option, to manage the risks that we see maybe.” Yeah. 


Mugabi: And it was like, a low dose of blood thinners and after they put me on them, I noticed a massive difference because the stroke, what it did to my body was it completely paralyzed the right side of my body, and the only reason that I was able to regain mobility and I’m able to like, extend my right hand is because I went through nine years of intensive physical therapy. We went to a lot of different doctors at that time, and I remember after Singapore they needed us to do a test that they didn’t have the equipment for. 


Brianne: Okay. 


Mugabi: They needed us to do an angiogram. And this was in 2001, so angiograms were not like, as prevalent as they are now. And at that time, there were very few hospitals in the world that had the capabilities of doing an angiogram. One of the people in Singapore went to med school with some guy in Columbia and he was like, “Yeah, we got an angiogram. We can set this kid up.” And one of the things they wanted to rule out was moyamoya which is a disease named after this, I think, Japanese scientist, but it’s one of the causes of childhood stroke, and it’s fatal, within like a year, you’re dead. 


Brianne: Okay. So high-risk, very much, they want to identify it for this reason. It sounds like, not well-treated at this time. 


Mugabi: Exactly and I was completely oblivious of this as usual. Like, my parents were preparing for my impending death and I was like, “Eh. I’m just playing my games.” 


Brianne: Yeah. Like, “I love these games. Life is maybe not great, but not as bad as it could be.” 


Mugabi: Exactly. And like, one of the great things about being sick is that everybody like, dotes on you with food. And so like, I could get whatever food I wanted. I’d be like, “Yo, dad, can we order a pizza?” He’d be like, “Yeah!” And I’d be like, “This is amazing.” 


Brianne: Yeah. You’re like, “Okay, okay. I get it. I get what the perks are.” 


Mugabi: And so I think I was in Singapore for like, four months or so, and over that four months, I did a lot of like, testing, MRIs, cat scans, a lot of blood work, I was put on my blood thinners. And I started a very, very intensive, physical therapy program because as I said, the complete right side of my body was completely paralyzed. I couldn’t walk, and I used to be right-handed, which made things like 10 million times worse. 


Brianne: Yeah. 


Mugabi: My right side was my dominant side. 


Brianne: Yeah. 


Mugabi: And so I went through writing lessons, like, relearning how to write with your non-dominant hand which was very very difficult, but now I’m left-handed. So it works. 


Brianne: Yeah. It takes time. 


Mugabi: Yeah. And I had to like, relearn all those basic tasks that you take for granted when you have a dominant hand that works, like brushing your teeth, eating, using a knife and fork. 


Brianne: Yeah. Like, just everything. Yeah. 


Mugabi: That was very frustrating. And also because of my right side of my body was paralyzed, like the right side could not even be you, it couldn’t move. So like, I was one-handed, essentially, for a couple of months. And even now that I’ve regained most of my mobility, my right hand is still has no fine motor movement. So like, I can use the hand for like support, but I can’t write with it. I can’t like, pick up a fork and eat with my right hand, you know? I use it moreso as like a support, to like, assist and the left hand pretty much takes care of everything. So I had to go through a lot of relearning and OT and PT, which was intense and which was very painful because I was paralyzed and they were like, moving in ways to like, try and regain motion and movement, but it was very very painful. And then came all the like, wackos, you know, who like, come in and are taking advantage of my parents desperation and are like, “Oh, we know something! Have you tried…” 


Brianne: “We can fix this. No problem.” 


Mugabi: And my parents being desperate, were like, “Sure thing,” you know? And so I got to like, all of them, and one of them I remember was particularly traumatizing. One of my mom’s friends was like, she was an electroshock therapist, and she believed that electroshock therapy could heal me of my paralysis. And so my mom would take me over to her house like, twice a week, and she’d like, hook me up to the electrodes. And then she’d like, shock me. I was like crying like, crying out in pain, saying like, “Stop.” And she was like, “No, we have to increase the voltage because the paralysis is not going away.” Running like, volts of electricity through my body is going to help. But I was a child, like 


Brianne: Yeah. It’s so hard. It’s like… like you say, the desperation that gets taken advantage of, and I think so many people, maybe not this person, but so many people also will like, latch onto one thing where they found a part of it helpful, you know? Like there’s always… not always, but there’s often like, this kernel in there that makes people even more committed to believing it, which frankly, I think is more dangerous than if people were sincerely scamming. I think a lot of people in this space are that. They have to believe that it works in order to make sense of the universe and any threat to that is a threat to their entire life. And it’s like, “This is a tough situation to be in when I just don’t want your treatment anymore because it’s definitely not helping me and probably hurting me.” Whew. 


Mugabi: Yeah. I’m very much a, “to each their own,” in terms of like, treatments and medical practices and like, if something works for you, great! Use it, you know? But like, not everything works for everyone. Yeah. And if somebody’s telling you that something does not work, why don’t you listen to them? But I know they didn’t listen to me cause I was a child, and that taught me very early on that like, I will not be taken seriously in this world until I’m an adult. And then I became an adult and I realized I’m still not taken seriously because I’m Black. 


Brianne: Yeah. You were like, “Wait a minute. That was not the only problem. I feel very bad.” 


Mugabi: And so yeah, we went through a couple months of trying out everything and then went to Columbia for the angiogram. And that was when they ruled out moyamoya, and that was the first time that my parents had the weight off their shoulders of, “Your child had a stroke. He’s going to go through a rough time. He’s going to need a lot of physical therapy, but he won’t die.” 


Brianne: Yeah. Like, “We’ve ruled out the cause that is most likely to lead to a fatality, so we think that this is probably good news, 


Mugabi: And I’d adjusted very well to the blood thinners. They saw the blood moving through my brain with the angiogram, and they saw that the blood thinners were doing their job and the blood was moving smoothly and everything was… there was like, no clots, and so they were like, “Yes, there’s all this damage in terms of the brain damage from the stroke, the paralysis, and I developed a stutter, migraine disorder, I’d occasionally go into convulsions. But they were like, “All this sucks, but it’s not fatal. We can rule that out.” 


Brianne: Yeah. And like with a stroke, they would be looking for like, “Do you have a brain clot now? Is there something else?” Right? Like, “Is there something else that we definitely need to monitor immediately because it increases the risk?” Yeah. 


Mugabi: Exactly. I’ve taken blood thinners every day of my life since I was nine years old, and so they’re like, “As long as he keeps taking the blood thinners, and as long as he continues working at whatever he’s working on and just gets a follow up in terms of testing and stuff like that every couple of years, just to make sure nothing has changed, he’ll be able to like, function and continue just like, trying to figure out how he can do what he can do best.” 


Brianne: Okay. So you went back and you, at home started doing OT/PT and then also getting exposed to like, the seedy underbelly of wellness culture, which is kind of people who offer cures that they are very confident will help based on very little evidence. 


Mugabi: Yup. And a lot of preachers and pastors too, a lot of religion. 


Brianne: Yeah. 


Mugabi: Which like, taught me from a very early age. That religion is a giant scam, you know? 


Brianne: Yeah.

Mugabi: A lot of it. 


Brianne: Yeah. 


Mugabi: I believe religion has a very distinct purpose, and I think that like, if people use it for its purpose, then it can be one of the healthiest outlets possible. And I try to use my religion for its purpose. I use religion as a form of meditation. I use religion as a source of strength. But I never look to religion to take away anything that it is that I’m dealing with. I look to it to provide me strength to deal with whatever I’m dealing with, but I never look to it to like, do a complete 360 on my health, which is what a lot of people looked at religion for, for me. And I noticed that like, a lot of people were very disappointed that I wasn’t healing miraculously. And I was like, “Why are you so upset? You’re not person that has to deal with this. I’m the one who got my hopes up who went to this random…” I went to a lot of people, especially because after my stroke, after the first four months in Singapore, and when my dad was setting up the appointment in Columbia, we came back home to Uganda because the way my dad and mom raised us is even though we grew up moving around a lot and he was posted in Bangladesh at that time, every summer, cause the UN was like, “You and all your kids get free flights back to whatever country of your choice once a year, as part of the benefits package.” 


Brianne: Right. I mean, for the UN that does make sense as a perk, although it does sound like an incredible perk. 


Mugabi: It is! Because there were five of us. There was no way my dad was affording flights for seven people back and forth to Uganda every year on his own. 


Brianne: I know, that sounds very expensive. 


Mugabi: Yeah. A lot of UN kids, their parents would be like, “Oh, we’re going on holiday to the States or France or Australia.” But my dad was like, “No, we’re going back home.” And my siblings were always like, “How come we can’t go to Australia? They gave us a free flight.” 


Brianne: Yeah. “Where’s our fun trip?” 


Mugabi: But like, in hindsight, I see what my dad was doing. He was trying to make sure that we had a relationship with the country where we’re from. 


Brianne: Right. Of course. 


Mugabi: I’d never lived in Uganda. I was born in Nigeria. When I was three we moved to Sudan. When I was six, moved to Bangladesh, and at this point I was nine and like, Uganda was a place that I went for summer vacation, but like, it was not home. And my dad was trying to cultivate that relationship, and so like, it’s all thanks to those trips to Uganda that I have a relationship with my uncles and my aunts and my cousins cause otherwise like, I would have grown up completely separate and I wouldn’t have even had a frame of reference for Uganda. And so we came back home for the summer and that’s where a lot of the preachers and pastors also like, witchdoctors and traditional healers came into the picture because a lot of the family instantly… because there’s a very common practice across the African continent and the diaspora of like, if something can’t be explained, it must be a witchcraft. And like, witchcraft is legitimate, and curses are legitimate. And because my dad was the leader of his clan, a lot of people assume that somebody put a curse on the clan and the way curses operate… 


Brianne: Right. 


Mugabi: I know, like, you know, the theories of how curses operate, but I have no idea if there’s any truth to this whatsoever, but the way they told me curses operate… 


Brianne: Like all things about health, it’s impossible to know. 


Mugabi: Exactly. So curses attack the person who is in charge if you put a curse on the family, and so they thought that the curse went for me, being my dad’s son, as a way to get to my dad 


Brianne: Like, as punishment for your… and maybe punishment might be like, the wrong intent for the verb kind of, but like, punishment for your dad, basically that you would have been impacted. Like, it was about his life as opposed to being about your life in this interpretation. 


Mugabi: Exactly. I’m like, “Why are you decentering me from the equation? Because I’m the one dealing with this!” I understand that my parents went through a lot because like, I cannot relate to having a child have a stroke and having to deal with all of that, and mentally it was like, a nightmare for them. 


Brianne: Yeah. 


Mugabi: But like, why wouldn’t the curse just attack my dad? If it was trying to get to him… I suppose it hurts worse to see your child suffering than for you to go through something because like, I see the way my mom deals with it. She’s always like, wishing that all of my health issues would just go to her cause she’s like, “It hurts me to see you dealing with it.” And so I suppose the curse was smart in that way, but at the same time, I don’t believe in the curse. But a lot of people… because a lot of the family had a lot of bad blood with a lot of people, and so a lot of people had actually actively placed curses on people, on the family. And so they were like, “The fact that I have racked up a $3,000 gambling debt is the reason Mugabi’s sick right now, my bad.” And then like, I had family numbers, like attack those family members who like, put curses or like, had bad blood and like, attack them and be like, “Take the curse away from Mugabi!” and I’m like, “Why are you enforcing in my name? I did not ask you for this. Like, this poor person is just like, an addict to gambling, dealing with their own things or like, going through whatever. They have nothing to do with what’s going on with me.” 


Brianne: Yeah. And like, they don’t need to carry that moral weight and guilt around either. Like, “I don’t want that for them. No matter what they may have thought in the past.” 


Mugabi: I’ve had people physically assaulted in my name and I’m like, “I’m a child. Like, I did not ask for this responsibility or burden.” And a lot of like, witchdoctors with their magic, one of the things they do is they take a chicken, they dip it in like, some water, then they smack you with the chicken. So like, as a nine year old I’m sitting there, shirtless because it only works if you’re shirtless, I’m like, “How does the shirt really affect it?” Anyways, getting smacked by wet chicken and the chicken is screaming because the chicken is alive and like, has no idea what’s going on. And while the witchdoctor’s, like… 


Brianne: This is not the chicken’s preference either. 


Mugabi: No, nowhere near. And then like, a lot of them said things like, “Oh, in seven days, you will be healed,” and that raised my hopes, you know? And then when the seven days happens, and I’m not healed, I’m like, disappointed. It was a lot to go through, and it was very difficult because of the fact that my parents had no idea what they were… what was going on. And all these people were throwing all these suggestions at them, and they took them because they were desperate. 


Brianne: Yeah. 


Mugabi: And I’m grateful to now be an adult and to be able to say, “No.” 


Brianne: Right. 


Mugabi: “I’m not going do this because like, we already went through this.” And like, all these people, no matter how well meaning they might be, they’re throwing all these things at us, but are they paying for them? Are they facilitating the process? Do any of these people who are throwing all these witchdoctors at me ever come to visit me? Ever come to check up on me? No. 


Brianne: There’s something in it, too. I know, for me, when people have like, really wanted spiritual interventions for me, it’s like, “Are you open to this not working when you even suggest it? Are you going to be there to pick up the pieces when it doesn’t work? Emotionally, and as well as financially?” There’s all this other stuff that’s packed into this kind of suggestion that people just have no idea about, and they continue to have no idea about as they go around like, violently suggesting it and not even realizing what they’re putting on people. It’s so complicated, even when I, like, as you’ve been trying so hard to do, I can create compassion for why people make these kinds of suggestions. And at the same time, it’s like, “You guys got to listen to us sometimes.” People come out with these suggestions that they are not paying for, that they are not really taking on the load of. They just want things to be better so that they don’t have to engage with the fact that life can sometimes be difficult, is how it can feel. 


Mugabi: Which is why as an adult, I don’t accept a suggestion unless you’re doing all the work for it. Now as an adult whenever I get a suggestion, I’m like, “Okay, great. You can get this thing for me and send it to me. If you’re not willing to do that, I’m not going to take it because like, what’s the point of throwing me this suggestion and acting like you want to help, if you’re not actually willing to like, you know, put some money or some time calling someone or some initiative into it?” 


Brianne: Yeah. It’s a whole world of unsolicited advice and fringe interventions everywhere and yeah. And the overlap with religion is so hard. I hear from so many people something really similar to what you said. That like, there’s this thing about how faith can be really comforting and faith can be a place where you get strength, and a lot of people who are chronically ill and disabled have that relationship to faith, whatever their faith may be. And then on the flip side, in their faith communities that they might’ve grown up in or with their families or with people who they know, it turns into a weapon of like, “You must not have enough faith or you would be healed by now.” And like, it’s really hard to get that message. 


Mugabi: Yeah. Which, I remember I was at this like, fair at the Uganda museum a couple of years ago to like, promote and talk about my book, and I was just walking around talking to people because that’s how I sell books. And I started this conversation with this guy, and he asked me about my book. And so I start telling him about it. He’s like, “Have you tried prayer?” And I was like, “Of course I’ve tried prayer.” 


Brianne: “In the last like, 10 to 15 years, has it ever occurred to me?” 


Mugabi: Exactly. And then he goes, “You must not have tried the right prayer. I have the right prayer.” And I’m like, “Who are you to have the exact specific combination of words in prayer that will miraculously heal me that like, every single other faith-based healer and every single other priest or pastor or Emissary of God or imam or whatever cause I’ve been to all different religious faiths for healing. Because we grew up moving around a lot, like living in Bangladesh it was like, all Muslim healers, in Cambodia it was Buddhist healers. I’ve literally tested like, all major religions in terms of healing, and none of it has worked. So like, why are you so specific and so powerful? And then he’s like, “You should come to my church, and you can book a session with me.” And I’m like, “So you want me to pay you for the same exact thing that I went through multiple times, which does not work.” And then he goes like, “You see, this is why you are disabled because you don’t believe, and you don’t have faith.” And I was like, “I’m done with this conversation,” and I just walked away. 


Brianne: Oh my God. Yeah. And the part that I find most frustrating, in addition to all of the things that we’ve already talked about, is it’s just like, “I would love a like, demonstration, just like, give me some data to work with. Like, if you shared data or some anecdotes, I don’t need you to have like a full fledged study.” 


Mugabi: But the thing about these people that they always have anecdotes, “This person who was like you, who I healed. Look at that person! They’re walking now, and they couldn’t walk.” And it’s like, “Have you slipped that person 10 bucks to say that, ‘This person healed me.’?” Like, I can see through it. Like, I’ve been through that. 


Brianne: I don’t know what I want. Because now I’m like, “I don’t really want a demonstration,” because I know that there’s literally a history of that, especially in the US. Like, tent revivals, it was a lot of demonstrative faith healing that definitely isn’t real, and I’m not supporting that. So I don’t know what I want, I guess I just want people to not be like this, but that’s a whole other problem. 


Mugabi: I’ve literally had people like, say that, “Oh, I can see the demons in this child. The demons are on the right side of the body.” And it’s like, “Wow! How intuitive you saw the fact that my right hand is paralyzed!” Anybody can 


Brianne: Right. 


Mugabi: Because like, he’s telling me how the demon looks like, it’s a very vivid image. And I was like, “Wow! There actually is a demon.” But they treat disability as a personal failing. 


Brianne: Right. 


Mugabi: Which angers me a lot. 


Brianne: Yeah, absolutely. 


Mugabi: No one chooses this. 


Brianne: Yeah. There’s a whole shift in perspective between like, I don’t… I mean, I like, have been using the language of hauntings and ghosts a lot lately for myself, partly because I’m undiagnosed and partly because like, some stuff just doesn’t make sense yet, but it’s like, me using that language for myself as a way to externalize the problem from my very essence is really different than somebody using this kind of imagery to make a point that I’m just not trying hard enough to expel this from my essence, which are pretty different concepts. Yeah. We’ve uncovered a few of the like, genres of quack who are wandering around looking to take money for healing efforts, and you had also done some OT and PT, so you kind of had like, both of those things going on. 


Mugabi: Yeah. And OT and PT is honestly the thing that most significantly helped. I had a lot of doctors give up on me. I had a lot of doctors telling me that I’d never walk again, a lot of doctors. I remember in Columbia, which is like, my first experience with like, medical racism in the States where I was like, “Huh, these people treat me a lot differently than the people in Singapore did.” Cause it was my first time ever in America like, I went for the angiogram. That was my sole purpose of going to the country. Me and my dad and my oldest sister all went together. 


Brianne: So straight to New York. 


Mugabi: Yeah, exactly. And this was while we were back home for summer holidays cause those appointments take a while to book and so by the time the appointment window was open. It was over the holidays, and so my older brothers were both really angry cause they were like, “How come he gets to go to New York?” 


Brianne: “On the fun trip! We want to go somewhere else.” 


Mugabi: And I was like, “You think this is fun?” 


Brianne: Yeah, 


Mugabi: I’m like, “I’m about to have an angiogram. This is a medical procedure.” But I did eat a lot of McDonald’s 


Brianne: Yeah. Yeah. And I’m sure like, your parents are trying to make it kind of fun for you because they know that it’s otherwise just like, a slightly terrifying medical procedure. 


Mugabi: Exactly. And so like, we went to parades and like, amusement parks and did all the fun stuff, which was great. But I remember when I was in the states, I took a cognition IQ test because they were trying to see if, the stroke had affected my cognition. And I remember the doctor proudly telling me that I would never be able to read anything longer than a few sentences because of the damage the stroke had on my brain, because he was like, “You see where the damage is? That’s in the language area. That’s why you speak with a stutter. And that’s why you’ll never be able to read anything longer than a few sentences.” And I looked up at him and I was like, “I just read the fifth Harry Potter last night.” 


Brianne: Yeah. Like, “I already… this isn’t… where are you getting this from?” Yeah. 


Mugabi: Yeah. And he was like, “What? That’s impossible. You are a medical mystery.” And I was like, 


Brianne: “Is it?” 


Mugabi: But like I only got that in the States, and so I was like, “Huh, this is interesting.” 


Brianne: There’s like, an attitude here. 


Mugabi: Yeah. All these white doctors are telling me that I will be unable of doing all these mental things that I clearly can do. Like, it’s the physical that was affected for me during my first stroke. That’s one of the reasons that I fell in love with reading so much because it was like a form of escape, and I could transport myself to these worlds. And it was something that I could still do with one hand, but they kept on putting all these labels on me of, “This is gonna affect you intellectually.” And like, “Why do you keep on saying this when it has not? And when I’m telling you that it has not. But because of the brain damage, you cannot see my brain possibly not being affected intellectually because of the location of the damage. Even though I’m telling you that it’s not, so you’re not listening to me.” 


Brianne: Yeah. Yeah. Like, “You’re looking at the scan, and that’s it. You are not listening to me. You are not paying attention to my input.” And like, yeah. You’re like, “That’s an interesting thing when this obviously should rely on a conversation about what your actual capacity is.” 


Mugabi: Exactly. 


Brianne: Yeah. 


Mugabi: And they were like, “These are the results of the test. The test shows that… Oh!” They were like, “IQ above average? And how is that possible?” Ay ay ay… 


Brianne: Yeah. You’re like, “Everything about this is wrong.” Like, this system was devised to make your assessments of people’s intelligence correct, and like, having it not meet your expectations because you’re super racist is also breaking your brain, but the device was racist in the first place. Like, there’s just a lot going on here, and it’s all bad. 


Mugabi: The States was the first place where I experienced a doctor calling all of his other doctor friends, and being like, “Look at this! And they’d all be like, “What!? We can’t believe it. What a fascinating medical mystery! How’s he even alive? How’s he even able to function? How can he speak? We don’t understand it.” And I’m like, “Are you looking at me?” Like, in the States, I’m looked at as like, a science experiment and like, I’ve been written up about in medical journals as like, this fascinating medical case. And I’m like, “How about you try to help me get to a better state of functioning like I’m asking you to, instead of like being all, like, ‘We can’t even believe that you’re able to do this, and there’s nothing we can do for you because clearly you’re beyond modern medicine!’?” And it’s like, “Okay, I’ll just go back to my physical therapist because at least they helped me.” 


Brianne: Right. Yeah. You’re like, “This is definitely… I can see what is happening here and the colonial influence on medicine where… everything about the power dynamic was set up for just like, gentlemen who wanted to do casual research on patients that don’t have a lot of say in what happens, in the best case scenario.” My gentle language describes the best case scenario for colonial medicine. 


Mugabi: I remember waking up… because I developed a seizure disorder later on, and I was getting some follow-up care. And sometimes I wake up into a seizure, so like, I have a seizure in my sleep and when I wake up it continues. And I remember being in a hospital bed, waking up into a seizure and realizing that there were like, 10 doctors crowded around me and like, realizing what’s going on, and then like, the lead doctor is like, “You see class? See how his EKG does not have any of the signs of epilepsy, yet he’s experiencing an epileptic attack? Look at this medical mystery.” And I was like, “How did I become a part of your class while I was asleep?” 


Brianne: Right. 


Mugabi: Like, “I not consent to this.” 


Brianne: Right. 


Mugabi: Well, I did technically because by just signing that form for the hospital, you consent to anything, which is like, ridiculous. 


Brianne: Yeah. And yeah, it comes up in a lot of places that like, slowly people discover and get coverage and we’re like, “Oh, that’s a really messed up default, actually that most people would not choose.” Yeah. So that was Columbia. 


Mugabi: Yeah, Columbia was a trip the med students were asking me questions and being like, “So are you able to verbalize?” And I was like, “I’m literally having a seizure right now, do you think I want to like, be playing 21 questions with you? Can you just leave me alone?” 


Brianne: Yeah. Like, “I’m not a specimen.” 


Mugabi: Yeah, but, but I couldn’t say that because if I do, I become an angry Black man. 


Brianne: 100%. Yeah. 


Mugabi: And expressing frustration would only affect my quality of care, so I just keep it to myself and the vent in my writing. 


Brianne: Right. You’re like, “I’ll just lock this down for later. Ha ha.” Okay. So I feel like we’re kind of jumping around, which makes sense, just like, in the recovery stuff. And then it sounds like things were kind of stable or more or less the same for a number of years. 


Mugabi: Yes. 


Brianne: And was that until you actually moved to Michigan or did we have any other things in between that we want to make sure we cover? 


Mugabi: There honestly wasn’t much in between. It was stable, and it was a gradual progression of regaining of functioning. I remember after the first stroke, my doctors banned me from PE cause they were like, “His body can’t handle any rigorous activity.” So like, I went into school with like, a note saying I wasn’t allowed to do PE. And that like, massively affected my social life cause I was in the fourth grade. 


Brianne: Yeah. You’re like, “This is the only fun class… sometimes.” 


Mugabi: Yeah, and especially being a young boy like, so much of boyhood centers around athleticism and sports, and like, being unable to do sports immediately put me in a category of like, “You’re not a boy,” you know? Because during PE time like, I just sat in the library and read books. And like, everybody didn’t understand me cause they were like, “Why is he not playing sports with the other kids?” So that was the first year that we were in Cambodia. This was after the stroke. 


Brianne: Okay. 


Mugabi: Cause the stroke happened February, 2001. I was in Singapore from… pretty much February until May, June. Then we went back to Uganda, where all the fake healer stuff happened, and witchdoctors, and then went to Columbia over that summer, and then the UN reassigned my dad because he’d done three years in Bangladesh, and so they reassigned him to Cambodia, which was actually a great place to be recovering from a stroke in because… I’m not sure how familiar you are with Cambodia’s history, but they were involved in the Vietnam war because of the border, and the US ended up laying a lot of landmines all across Cambodia as like, a tactic to kill people. 


Brianne: Right. 


Mugabi: Cambodia also had its own dictator leader called Pol Pot, and they had the Khmer Rouge, which like, wiped out an entire generation of people. It was terrible. And that only accelerated the landmines, and so the fact that Cambodia has so many landmines across it as a result of wars, means that there are a lot of amputees. And so there was a very clear, visible presence of a lot of disabled people physically around me day-to-day. When I was going to school like, one of the kids in my classes was an amputee with a prosthetic leg. The person at the shop down the street where like, I bought candy from was an amputee. There was a very strong culture in Cambodia of physical therapy because of the landmines, and there was a very strong healthcare system for disabled people because of the landmines. 


Brianne: So it was like, you were kind of after they had to build up an entire infrastructure to support… Yeah. okay, 


Mugabi: Exactly. Yeah, because like, the Khmer Rouge… I mean, the Vietnam war was like, in the sixties and seventies, right? Khmer Rouge happened like, right after that in the like, seventies, eighties. And so by the time we came in, in 2001, they’d already like, built up the infrastructure in response. And they’d been like, at peace and not at war for some time, which significantly helped my recovery process because that was where I got on my muscle relaxants because the physical therapist I was working with was like, “He needs something more to help with the spasticity.” And like, none of the doctors in Columbia said anything about that. 


Brianne: Yeah. 


Mugabi: But like, the minute I started taking them, my muscles started becoming a lot less spastic, improved muscle tone. I was able to like, walk… more efficiently, I guess. Before the muscle relaxants and without the muscle relaxants, even still like, if I forget to take them or something, like I notice that walking is a lot more difficult than it is with them. 


Brianne: Yeah. I don’t know the word for that, but like, impaired gait. 


Mugabi: Yeah. 


Brianne: Your gait changes. And the thing I’m struck by most, just by like, thinking back to the doctors at Columbia as the example, is just like, the difference between medical professionals who think that their job is to make their patient’s life better and medical professionals who think that it’s their job to expand medical knowledge. 


Mugabi: Exactly. 


Brianne: Those aren’t necessarily in conflict. They don’t need to be in conflict at all, but somehow a lot of people treat them like they are. 


Mugabi: Exactly. Like, Cambodia was the first time I got a leg brace because my physical therapist was like, “This will help.” And they already had the infrastructure in place because they’d had tons of people who were victims of mines. And so like, getting a leg brace was super easy. The only thing was like, it was to a Cambodian skin tone, so like, it was 10 shades lighter than I am. I was like, “It’s a leg brace which I only wear indoors for like, a couple hours each day. I don’t take it to school, so like, I’ll allow it.” 


Brianne: You’re like, “I can live with it, but also what the hell?” 


Mugabi: Yeah. 


Brianne: Yeah. 


Mugabi: Like, I would appreciate more diversity in terms of like, race, skin tone, but I mean, that’s the same thing with band-aids. 


Brianne: Yeah. It’s the same thing with a lot of things, yeah. 


Mugabi: Yeah, Cambodia was good to me. And like, it was a slow progression. The first year I couldn’t do any PE. And then by the second year, my physical therapy had progressed me so far that the doctors were like, “No, we think he can get back into PE now because he’s clearly like, capable of a lot more than he was.” And I was getting lot of my primary follow up care in Thailand because Cambodia’s health care system wasn’t the best at the time, they didn’t have like, the right equipment, like MRIs, CAT scans, and all that. 


Brianne: Yeah. Like, the diagnostic stuff. 


Mugabi: Yeah. Yeah. They had couple of CAT scan machines, but they were like, always fully booked. They didn’t have the right diagnostic equipment for me. And Thailand was right next door, which is convenient, and they have some of the best hospitals in the world. It was really great that I was able to do follow-up care there. I think every summer I’d go to Thailand, get my workup done, a lot of McDonald’s. 


Brianne: Yeah. “Here’s your treat, here’s your images.” 


Mugabi: Exactly. And then come back to Cambodia with like, brand new clothes and my brothers would be jealous and be like, “Oh, how come you get to go to Thailand and eat McDonald’s and come back with new clothes?” And I was like, “I got you some clothes too.” 


Brianne: You’re learning. 


Mugabi: Yeah, exactly. So Cambodia is good for me, and it was just like, a slow progression in terms of like, having difficulty walking to being able to run. I was able to like, play basketball and play football with my friends, and my gait improved and became like, better for my body. And my mobility in terms of my hand improved significantly. I was like, angry a lot as a child because I didn’t understand a lot of what was happening to me. 


Brianne: Yeah. Fair. 


Mugabi: But like, I appreciate my parents for not treating me with kid gloves because I’d become disabled. They were still like, “Mugabi, you need to wash the dishes. You need to…” you know? 


Brianne: Right. “You’re still a member of his family.” 


Mugabi: Yeah, exactly. Which I appreciated. And then when I was 13, my father died, which created a massive shift in our circumstances because most of the amazing UN benefits went away when he went away, and I was very accustomed to living a cushy lifestyle cause it’s all I’ve known. And for the first time I was having to like, struggle financially. And I was like, “What is this? This is completely foreign to me. I don’t know what’s going on. This is weird.” He died in 2005, and then the family moved back to Uganda. And my mom was able to find a physical therapist here to continue doing follow up sessions and with him I progressed and progressed and progressed. And I got to the point where I was able-bodied passing, which is very strange. Physical therapy trained me in very, very specific ways on how best to present and pass as able-bodied because able-bodied is like, the norm and the optimum. And so like, they teach you how to sit, how to walk, how to like, do everything so that it’s the most able-bodied seeming rather than the most comfortable for my body. And so as much love as I have for physical therapists, they’re also trained in a certain way, and I really, really wish that there were more disabled physical therapists because we need people who actually get what it’s like. 


Brianne: Yeah. 


Mugabi: More disabled people in healthcare positions in general. 


Brianne: Yeah. Yeah. In every domain cause it really is so similar and like, there’s so many stories that people who get sent to PT with fatigue or side effects or whatever. And most people are like, “Okay. I mean, I’m interested in recovery, but like, ask me about my recovery goals because a lot of default recovery goals are just not related to my life at all. And like, I don’t want to put energy into learning how to sit like in abled person when I could instead be putting energy into like, developing tactics for doing laundry because that’s hard.” The goals are misaligned a lot. 


Mugabi: Definitely, definitely. And I feel like if a lot of PTs realized what PT does to our body, I think they’d be a lot gentler with it because like, they have no idea the ramifications. Especially… cause like, later on I developed post exertional malaise. And like, I remember going to PT and coming back and instantly having a three hour long seizure and being like, “Is this worth it?” But every single health professional that I saw told me, “Push yourself. Push yourself. Push yourself.” 


Brianne: Yeah. And like, I don’t know if you asked the question that time, but I think often when we do ask the question, like, “Hey, this weird thing happened. Should I still be exercising?” The answer from medical professionals is almost always yes, but like, we know from research, especially into M.E. which is where post exertional malaise as the term, I think, is like, the most used is like, “Exercise can be harmful.” And then especially because of like, are you having these reactions? Is it because there’s actually some ongoing damage happening from the like… there are so many questions that just do not get asked, and we need them to. 


Mugabi: And there’s also a way to like, grade the exercise therapy, which like, I experienced later on at the Mayo Clinic where like, they started me off really, really, really slow. Like, they started me off, walking the length of a hallway, like 10 times, and that was it. The next day I walked the length of the hallway 11 times. Instead of PT, which like, forces your body to like, exert itself in certain ways that might not present until later on. I feel like one great thing that the Mayo Clinic did for me was they started really, really slow and they increased very, very gradually, so my body was able to adjust to it, without as much post exertional malaise as I had when I was doing the more intense PT. One of the things that helped with that actually was the Mayo Clinic had people with chronic pain on staff, which was revolutionary. 


Brianne: Yeah. Okay. So let’s get to Mayo. So you are back, while this is happening and then things are kind of stable, but you’re dealing with all of the things. I’m so glad that we’ve talked about all of the things, but yeah, all of this has been happening and then you moved to the states for school, I think you said? Before we started recording. 


Mugabi: Yeah, yeah. I got a full ride to University of Kansas, which was great because I couldn’t have afforded it without it. I went there for university, and that was my peak of like, able-bodied passing. I had so much internalized ableism that I like, hid it and was like, ashamed of it. I remember having to have conversations where people would be like, “So what’s up with your hand. We’ve noticed that.” I was always like, “Why does everyone always ask me this question?” And also there are a lot more sensitive ways to approach that in hindsight than like, “So, what’s up with your hand?” 


Brianne: Right. 


Mugabi: But like, I still remember like, I used to be an RA, and like, one of residents was laughing at me because I walk with a limp. And I was like… 


Brianne: Yeah. “Where is this coming from?” 


Mugabi: I got a lot of this as a child, but like, I was a child, and I was expecting it from children. Cause I hold children to very very different standards than I do adults. This is a 19 year old, you know? And this is the same person who asked to be… cause I consider myself, an occasional rapper, and I used to make music videos for fun in college. This is the same person who begged to be in my music video. 


Brianne: Right. 


Mugabi: You know? Like, “Why are you laughing at me behind my back, yet you’re begging to be in my music video, and you’re like, loving everything that I do on Facebook?” It’s not adding up. And so I dealt with casual ableism here and there throughout Kansas, but I was like, at the peak of my health then. And so I was like, doing all the things because I went so long being unable to do so much, that like, the minute I regained the ability to do some things again, I was just like, “I’m hitting the ground running,” because also, I didn’t know how long it was gonna last. The doctors told me they didn’t understand what happened with the first stroke. They told me that they didn’t know what was going on in my brain. And they told me, “It is incredibly likely that you will have another stroke and that you will die from it.” And so I was like, “Okay. So like, I have this like, impending stroke over my head.” So I’m just trying to live life to the fullest when I’m capable of it. And so like, being unable to do PE for a while, and when I regained my physicality back, I was like, running all the time. Like, I was doing 10Ks, training for a half marathon. Like, “My body can do this. This is amazing.” 


Brianne: Yeah. You’re like, “Now I get to know what running is like.” Like, “Okay. Sure.” 


Mugabi: And also because like, there was this mentality ingrained into me through PT and through all the doctors if I pushed myself hard enough, I could regain what I had before I was nine years old, which I’ve since learned is a complete lie. 


Brianne: People really want to tell people that though, 


Mugabi: Yeah! Like, everyone told me that, and I believed it for so long. And that’s one of the reasons that I pushed myself so hard was because they told me that if I pushed myself, I’ll get it back. 


Brianne: Right. That it’ll be worth it. 


Mugabi: Mhm! 


Brianne: Yeah. So as you were kind of recovering and pushing it as you’re describing it, and also concerned that another stroke could be coming at any moment, but also you’re like, able-passing at this time, how was that for you in terms of identity? Or do you think you thought about that a lot? I feel like, especially moving environments and getting to reinvent so much, maybe it wasn’t that complicated, but were you actively thinking about this? Like, did you identify as disabled? Would that have meant anything to you at the time? Because obviously that’s like, a community term that kind of means different things to different people, too, I think. And language shifts. 


Mugabi: Yeah. I think I always identified as disabled, but I was ashamed of saying it for a long time. It wasn’t until my second and third strokes that I became comfortable saying it out loud, publicly identifying. I was in the closet. 


Brianne: Yeah. 


Mugabi: Yeah. But like a lot of people in the closet for queer reasons, that was partly a safety thing, you know? Because like owning it and being loud and proud about it is only capable if you’re in a certain position. 


Brianne: Yeah. Safety needs to be present. Yeah. 


Mugabi: Yeah. but like I remember feeling very isolated in terms of my disability because I didn’t have any disabled friends. And it wasn’t until after stroke two and three, that I met disabled friends. Cause even like, my friend in Cambodia who was an amputee, he didn’t identify as disabled and he was one of those like inspiration porn type people. Like, he was captain of the soccer team, running, like… you know? 


Brianne: “My disability doesn’t stop me.” 


Mugabi: Exactly! Running a six minute mile. Always like, physically at his best. And I was like, “He can’t relate to me!” You know? 


Brianne: “Our disabilities are very different.” Yeah. 


Mugabi: It wasn’t until after college that I made disabled friends when I was like, “Wow, this is what I’ve been missing my whole life.” 


Brianne: Yeah. Yeah. I’ve just been playing this whole other game. Yeah. So Kansas, it sounds like was very much like that. And then you went to Michigan from there. 


Mugabi: Yeah, I got a fellowship to do my master’s in Michigan. And I went to Michigan, spent one semester there and on literally the day before finals week like, the Sunday before finals week starts, I’m sitting down in the basement of the co-op I used to live in like, typing out one of my papers and all of a sudden I feel the pounding sledgehammers again. And I was like, “Oh my God.” 


Brianne: You were like, “No!” 


Mugabi: Yeah. And it’s such a distinct feeling. Like, I’ve literally only felt that three times in my life. And I was like, “It’s happening again!” 


Brianne: Yeah. 


Mugabi: I was like, “This is like, my biggest fear,” because I was like, always weighing over my shoulder, like this potential other stroke. Because like, they told me, “The next one is going to kill you.” So I was like, “I’m about to die.” 


Brianne: Right, “Here it is.” Oh my God. 


Mugabi: And so I ran upstairs, got my roommate and I was like, “You need to drive me to the hospital. I think I’m having another stroke.” One of the perks of being more comfortable with disclosing as I grew up was my roommate was already aware that I’d had a stroke when I was younger, 


Brianne: Right. 


Mugabi: And so like, me coming up to him and saying, “I’m having another stroke.” He was like, “Crap, I gotta get him to the emergency room.” It wasn’t like, “What do you mean?” You know? Like… 


Brianne: Yeah. Like, if you told that to somebody who didn’t know, they’d be like, “Wait, another?” And you’d be like, “Now is not the time for this story.” 


Mugabi: Exactly. And that’s why I’m a big advocate of disclosing with anyone you live with or anyone who like, would be there during an emergency situation. And only really feeling comfortable living around certain types of people. Like, there are a lot of people in this world who are dear friends of mine or dear family of mine, who I would never live with because like, I know the way they handle health emergencies, and it’s not what I need. 


Brianne: Yeah. Not everybody has the right skillset to be with some people in that circumstance. It’s fine. Limited judgment on the scenario. 


Mugabi: Exactly. And like, by this point, everything was spinning, I had a different type of aphasia where… because I kept on talking to myself, the entire time because I was trying to see if my voice was going to go out again. And it never… I never lost the ability to speak. Something weird happened where like, I was speaking out of my mouth, but the sound was coming out of the wall over there. 


Brianne: Okay. So like, your sensory perception of what was happening was not aligned with what you expected. 


Mugabi: Exactly, exactly. And then I went like, blind in one eye and I was like… I was like, double checking, like, what’s going on? Because like, one eye just tapped out completely my eye was just like, “done.” Like, everything is black, but my left eye was still like, blurry and everything was spinning, and I was like, super confused. I was like, “What’s going on?” And so was like, “We need to get to the hospital.” And the like, right side on my face started drooping and my like, right hand and right leg started getting like, heavy and hot. And these were all things that I experienced during the first stroke as well. And they’re all like, the things that are like, on the list of like, “Is someone having a stroke?” They’re having these symptoms, you know, and we get to the hospital, I get out of the car. My roommate helps me out of the car. The first thing that like, one of the hospital nurses does is they send someone outside and they say, “Stop right there!” I’m like, “What?” They’re like, “Stop right there. Don’t come any closer.” And I was like, “What’s going on?” They were like, “Have you traveled to Nigeria? Burkina Faso?” 


Brianne: Okay. 


Mugabi: “DRC? Over the last six months? You don’t look like you’re from around here.” Then I realized this was during the Ebola outbreak, and they were like, ‘This dude does not look like he’s from around here. He might have Ebola. Let’s like… make sure that…” I’m like, “You didn’t do that for the white person who literally just walked into the hospital right before I showed up. Like this is clearly racial profiling.” 


Brianne: And like, in Ann Arbor, which is… were you at the Michigan hospital? 


Mugabi: Yeah. Which is like, supposed to be number one for stroke care, which was some of the worst stroke care I’ve received in my life. 


Brianne: Yeah. So it’s like, a big institution that has a whole thing, which is also… I mean, I’m sure Ann Arbor sees a lot of people from other countries because it’s a school, but also like, it’s not a hub where like, someone’s first point of contact if they were traveling with… like, the logical leaps are exactly… like, I can’t even construct another alternative thing of like, “Oh, you must have been dealing with a lot of people coming in who were an Ebola risk, and so your Ebola sense…” like, for sure they should be asking the question of everybody when they do the check-in cause that’s the protocol… 


Mugabi: But not the white people. 


Brianne: But like, right. But that’s not what they were doing. They were just doing the racist profiling thing. 


Mugabi: Mmm hmmm. 


Brianne: Thank you, Ann Arbor. 


Mugabi: Yeah. And that was one of the most racist places ever, and I was like, surprised. Cause I was like, “I thought the North would be like, less racist than Kansas.” Like, Kansas was very racist in so many ways, but one thing I appreciate about Kansas is like, people would like to say, “Go back to Africa. You fucking nigger.” But they’d say that to my face, you know? In Michigan it was like, you’d smile to my face but be racist behind my back, which I don’t respect. Like, I would much rather have the person literally showing up with a shotgun because me and my Black friend are driving past. Then the person who’s like, “Oh, have you been to another African country?” You know? 


Brianne: Yeah. You’re like, “This is still… the fact that the words that are coming out of your mouth, as words, aren’t objectionable doesn’t mean that the racist leaps that you made to put those words together right now…” like, there’s two things happening here. Yeah. 


Mugabi: And my roommate is super confused when this is going on, because he’s white. And he was, he was like, just like, “I just saw that person walk in.” And he was trying to explain to them, “Yes, he’s from Uganda, which is none of the countries that you listed. But he hasn’t been back home to Uganda and like one and a half years.” 


Brianne: I’m like, ripping out all of my hair just listening. 


Mugabi: You know like, the sledgehammers are pounding and I’m like, I’m just trying to get some help here. Like, like this is like ridiculous. Like I’m having trouble standing and like, my legs are shaking. Like… 


Brianne: Like I shouldn’t be, yeah. This isn’t where I should be for you to check… like these boxes are probably actually on every form and you probably ask these questions very differently to everybody else. So hello. Yeah. 


Mugabi: So we finally deal with that. Thanks to my roommate leveraging his white privilege, which I advocate for every single white person to do because we need it. 


Brianne: Right. 


Mugabi: So we get in, they put me, rushed me in, a couple of neurologists come in are like “What’s going on?” And I’m like “I had a stroke as a child.” “What?! A stroke as a child?!” And I’m like “ughhhh.” Like, “I think I’m having another stroke right now. Like, can you please just give me some bloodthinners. Just like, put me on something. Like, we can talk about this later!” 


Brianne: “Take action!” 


Mugabi: Yeah. But it took forever to like, get some medication into my system. Eventually I fell asleep. Wake up the next morning feeling relatively better. My roommate, God bless his heart, had like spent the entire night in the hospital with me. And it’s hilarious because like most of my really close friends, like initially, like the relationship was like, you know, like, I’m not really sure what’s going on. And also because like, I just don’t like being assigned a roommate and having no choice over like who, you know, and like meeting this person for the first time as you’re living with them, it’s just a lot to process. But we ended up becoming really close. Partially due to like his solidarity during that, you know, time. And he manages bipolar disorder, and so he could relate to like being manhandled by a health system, which I appreciated. 


Brianne: Yeah. 


Mugabi: And so next morning woke up feeling better ish. And the doctors were like, “Yeah, so, it seems like things have stabilized. We’ll have to do some additional testing, but we need to get you out because we need the bed.” Which is like, you know, something that is also unique to US healthcare. Like in Thailand and Singapore, once you’re in there, like they schedule all the tests, like everything you get the following day and like, you continue to ride it out in the hospital. They don’t rush you out because they need a bed, you know? 


Brianne: Yeah, it’s just like beds don’t bill out at the same rate to insurance. Like there’s like this whole underlying economics to American healthcare specifically that is very different, like, and worse. 


Mugabi: Exactly. And so they say I’ll have to do more additional testing, but like I’m stable enough to go back home. And I was like, okay. So I go back to the co-op. And I had told my roommate not to tell my family because I told him that I do not want to deal with like a bunch of different phone calls of everyone freaking out thinking I’m dying right now. 


Brianne: Yeah. 


Mugabi: Y’all don’t know what this is like, and y’all don’t know how much, how difficult it is to like even speak during that time. 


Brianne: Yeah. 


Mugabi: And I was just trying to pull it to the best of my ability. But my roommate ended up freaking out and called my brother. And so then I wake up to like 10 different missed calls and I’m like, okay, now I gotta handle this a lot sooner than I had anticipated, and a lot sooner than I had wanted to. So then I have to call the entire family. And then somehow, like, because my mom talks, my mom talks a lot. She’s a gossip and a talker. And so it branches out to the extended family. And then one of my cousins posts on my Facebook wall, “Bro! I heard what happened! I’m praying for you! Oh my God, this is scary, like God has got you.” And I was like, “Noooooooooo.” 


Brianne: Classic, right out of Facebook. 


Mugabi: Exactly! And now I start fielding, like calls left, right and center from everyone being like, “What’s this guy talking about on Facebook?” Like, “Yeah, I think I had another stroke” and them being like “Whaaaaa?!” Like, it’s just a lot of emotional labor that you have to do. And like, I’m not, you know, like, this is not the time for this. Like, give me some time, you know, to like deal with whatever I’m dealing with, because I still have no idea what’s going on. Give me some time and then, and then we can talk things out later but thanks to my cousin just outing me on Facebook. 


Brianne: Oh my goodness. 


Mugabi: That could not be helped, so I’m doing a bunch of testing at Michigan, the doctors are pursuing a bunch… 


Brianne: So are you going back in during the day, basically for imaging and then going home kind of? Like as they could accommodate you I guess, or make appointments? 


Mugabi: Yeah. They were actually pretty quick with the appointments, which I appreciated. It was largely because I was a student, cause like, you know. 


Brianne: Yeah. It’s a big hospital. 


Mugabi: Yeah, mmm hmmm. And so I’m doing that. And I’m also trying to figure out how to like, and also having to tell all my professors, because it’s finals week. Literally could not have happened at a worse time. Like it happened the day before finals week. And so, having to like email all my professors to say like, “Yo, I just had a stroke.” Like I’m trying to figure stuff out. But like I’m not about to walk into finals, you know? 


Brianne: Yeah. 


Mugabi: Like I need some… and they were all surprisingly accommodating, like every, all but one of them. And that one was always like the, you know, like uptight professor. So like, I was like, it would be him. All but one of them were like, “No worries. You got an A.” You’ve been amazing. And I was like “Thank you!” You know? Like, because having to worry about that one, that was uptight and was like, he told me that I’ll just reschedule the exam for the spring semester, which I was like, all right. That’s like, you know, accommodating well, which I appreciate, but it also just gives me another thing to worry about potentially in the future. 


Brianne: Extensions are like great. And also somehow worse, usually. 


Mugabi: Mmm hmm. And so, I was like, okay, so I’m all set on classes, which is great. I emailed my boss cause I was a research assistant while I was there, working for this like forestry project. And I emailed my boss, told him what was happening. He was like, “No worries. You’ve done great so far.” Like take all the time you need. And I was like, great! So like, but like I didn’t have income coming in. Because I wasn’t working anymore because I was trying to figure out health stuff. But I was lucky that my family were able to financially help me out. And also the fact that I had the University of Michigan student insurance, which is great. And I combined that with my dad’s UN insurance. And so the combination of the two made me pay like next to nothing, honestly. 


Brianne: Yeah. Which is great. 


Mugabi: Yeah. 


Brianne: Yeah. 


Mugabi: So yeah, just a bunch of followup care. And then a week later, literally a week, like an exact week, like the following Sunday, again, “aaaah!” I was like, “what is going on?!” Because I was literally… 


Brianne: Send it back! 


Mugabi: Sitting down, I was sitting down in the same, cause I hung out in the basement a lot. And I was sitting down in the basement and I think I was like watching a movie or something or like just browsing Facebook. But like, I was like, same like day and oddly like same time, like evening each time, like both. And so then I was like, oh crap. And so I run get my roommate and I’m like, “I think I’m having another one.” 


Brianne: Yeah. Like, “I don’t know, man.” 


Mugabi: Yeah, my roommate drops me at the hospital. And then the doctors are like, “what’s going on?” I was like “I think I’m having another one.” They’re like, “huh, that doesn’t fit in with our testing. That doesn’t make sense. Huh.” And then, they like put me under observation. And then they ended up diagnosing me with dizziness. And they were like, “next time you come back, you have to have more serious symptoms.” And I was like, “I told you I’m experiencing the same exact thing.” And they were like, “yeah, but physically you’re not displaying that.” And I was like, “huh.” 


Brianne: “Interesting!” 


Mugabi: You know, I’m like, yeah, like you’re telling me a lot. I mean, you’re telling me that you know nothing about the brain, honestly. 


Brianne: Yeah. 


Mugabi: Because you’re saying that I have to physically manifest severe, like my eye and mouth have to be like paralyzed to the point that like, I can’t even talk properly for you to say it’s a stroke. You know? 


Brianne: Yeah. Yeah. And that you’re not willing to either one, believe my self reporting, which huge problem overall in medicine and how it works right now that I could not begin to solve in this pointform list I’m trying to make. But like also, yeah, like this is your third stroke. At the end of the day, like they want you, what they are indicating when they behave this way is that they want to just wait until it gets worse, which is how this often works. Like, and it’s like this isn’t a better outcome! Like refusing to listen to someone until you can observe something that they’ve been describing for X amount of time is a bad plan, but it’s cheaper. So here we are, among other things. 


Mugabi: Mmm hmm. 


Brianne: That’s not the only reason it happens. Okay. So they told you you were dizzy. 


Mugabi: Yeah. And then the doctor says, “I think you’re having mini seizures, so let’s put you on anti-seizure medication.” Because I’d also been having convulsions. So, and like this whole time, like after stroke two and to stroke three, like my body was going through it. Like I’d randomly go blind in that eye again, but like, I was like, what’s the point of going to the doctor, if they’re just going to tell me I’m busy again, you know? And so I’d just wait and then like 30 minutes later, my eye would kick back in again. And I was like, I don’t understand what’s happening, but nobody has any answers for me so I’ve just got to wait for the tests. 


Brianne: Yeah. 


Mugabi: I would have like convulsions, a lot of pain, a lot of like weird sensations, like heaviness and like heat through my body, until they were like, “we think you’re having mini seizures.” So they put me on this anti-seizure medication called Keppra. It was one of the worst times of my life, because I put on, I get put on Keppra and then I go back home. I’m hanging out and, I mean, like, I still had all the like sensations and everything and the seizures and the pain. And I was like, I don’t know what’s going on, but I’m just waiting for the test results. And so trying to power through. My sister ended up, like after the first stroke, she took time off work and came up to, like look out for me, which I appreciate. And then she, was like, “you should come down to DC since you’re on your winter holidays anyways. And while you do all your followup work, you can come down to DC for like a couple of weeks, and then I can come back with you and work through a followup work with you.” And so like, and like having her as like an advocate is like the only reason I’m alive. 


Brianne: Yeah. 


Mugabi: But it sucks that it was her because like, she’s a Black woman and they don’t listen to her either. You know? 


Brianne: Yeah. 


Mugabi: I wish I had like a white man friend who I could like drag with me to all little appointments and just be like, “talk!” 


Brianne: It’s a necessary service that needs to exist. Just like, lend out your privilege to people in healthcare! Thank you. Hate that it’s needed, probably would do a lot of good. 


Mugabi: That would honestly be amazing, like a volunteer service that somebody should set up. Like your white friend, white man friend. 


Brianne: Yeah. 


Mugabi: The Keppra eventually after like a couple weeks ends up making me heavily suicidal. 


Brianne: Mm. 


Mugabi: And I remember hearing voices, and there was one voice in particular, it was all hallucinations in hindsight. But like at that moment it was real, you know? Like you don’t know you’re hallucinating when you’re hallucinating. And so like, I remember being in my co-op and like going to make a sandwich, and all of a sudden, like my body’s like taken over, by something that sounded like exactly like Gollum from Lord of the Rings. This is like, terrifying. 


Brianne: Yeah. It’s like, visceral. 


Mugabi: And like, Gollum just keeps yelling in my mind, “kill yourself, kill yourself, kill yourself, kill yourself, kill yourself.” And I’m like, what’s going on? 


Brianne: Right? 


Mugabi: Um, and then before I know it, like I’m trying to make a sandwich, but before I know it, I have the knife up against my wrist and I’m about to slit myself. And I end up calling my sister and being like, “I don’t know what’s going on. But like…” And then like, as I’m trying to talk to her, Gollum is like responding to me. And Gollum is like, “why are you such a baby going and crying to her all the time?” You know, like, “why don’t you just kill yourself?” 


Brianne: Right. 


Mugabi: And like, as my sister is trying to talk to me, Gollum is yelling over her, “kill yourself, kill yourself.” So I can’t even hear what she’s saying. And I’m like, “I’m sorry, I’m trying to hear what you’re saying. But all I hear is Gollum telling me to kill myself. And I’m very confused right now. And I don’t know what’s going on.” 


Brianne: Right. 


Mugabi: My sister is freaking out. 


Brianne: Yeah. This is a new and extremely troubling experience. 


Mugabi: Yeah. She was like, “call your doctor immediately.” I call my doctor. My doctor’s like, “wow! That’s fascinating! That only happens in like 5% of, wow, you’re such an interesting case.” 


Brianne: You’re like, “I’m a person! I’m a person!” 


Mugabi: Is that really your reaction? 


Brianne: Oh my god. 


Mugabi: Like, I have Gollum yelling in my mind to kill myself and your reaction is “that’s fascinating?” 


Brianne: Yeah! 


Mugabi: And so, she’s like, “oh yeah, yeah, yeah, you should discontinue that.” Okay. But like Gollum takes a while to leave my system and it doesn’t go without a fight. Like I remember I was trying to study for that, like extension exam that I had to take. And I was studying on like the 10th floor of one of those buildings on the quad. And like, I remember like studying for my economics exam. And then I remember blacking out, next thing I remember I had one foot out the window and I was about to jump. And I have no idea, like, you know. Like I was not in control when I made that move and I was like, what’s going on? You know? 


Brianne: Yeah. 


Mugabi: And so I immediately like went back to the co-op and I just like told my roommate. I was just like, “just watch me.” 


Brianne: Like, I need a lot of support right now. 


Mugabi: Yeah. And until this medication is out of my system, I can’t trust myself or my body. So I need you to just watch me and make sure I don’t do anything. BEcause if I do, I’m not in control. Eventually it leaves my system. And then the search begins, of every single test under the sun, every single medication under the sun, every single doctor under the sun. And I honestly haven’t really got answers since, and I’ve been progressively worse. 


Brianne: Mmm hmm. 


Mugabi: Yeah. But no, it’s been up and down. It’s been up and down. Cause like 2015, my health was technically better than it is right now, but I was not as good at coping with it because I thought I was going to die. Cause like for the entire year of 2015, all the doctors kept on saying “you’re not going to make it to see 2016.” And so I was like, all right. So I’ve got to start preparing for my death. So I started doing what I had to do to like settle my affairs. But when I made it past that, and when I started like regaining some functionality, I pushed myself as I had been trained to do. 


Brianne: Right. This is what we do at this point. 


Mugabi: Yeah, but then I’d crash and then I’d try to figure something else out and then I’d crash and then I’d try and figure something else out. And it’s been the boom and bust since. 


Brianne: Yeah that’s very relatable. And so, yeah. So there were two strokes and at the beginning it was like, your symptoms were kind of unpredictable, it sounds like, sporadic, et cetera. And so it’s like, there’s two things going on, which is like one, can we understand and maybe anticipate and maybe manage the symptoms to like find a baseline. And then also, yeah. Like, is it possible to find a baseline? There’s like a long game and a short game kind of happening at the same time, I feel like, in recovery situations. So. Okay. And so that was, and that was in Michigan. And then did you move back from there? I know, cause it sounds like this was in the last, I feel like I have no sense of time. Sorry. It’s 2021 right now. So this was in the last five-ish years, five or six years ago, is that right? 


Mugabi: Yeah. The two strokes happened at the end of 2014. 


Brianne: Okay. Yeah. 


Mugabi: Yeah, yeah, yeah. And so, I was in Michigan from like August/September-ish until February of 2015. Cause in February 2015, like I’d done all the tests and like the doctors were not helping me. And my sister was like, “why don’t you just move in with me and we’ll continue your follow-up care, rather than you like having to deal with all this BS on yourself.” 


Brianne: Right. Cause it’s so much to handle. 


Mugabi: Yeah, exactly. And I was like, appreciate you for that. And so I moved in and took a leave of absence from Michigan. And I like, as much as like hate on Michigan’s sense of elitism, I will forever like accredit and like stan and stand by the school for what they did for me. Cause one of my professors told me about a grant that was available for students who have medical issues. I applied for it and they gave me like $6,000 just straight up. No questions asked. 


Brianne: That’s great. 


Mugabi: But yeah. And so like that, that went a long way to medical bills. Because like, even with those two insurances, my copays were pretty high. Cause I was doing a lot of expensive imaging and testing. But with that $6,000, I was able to like pay for like every Uber to the hospital, rather than having to try and navigate the subway in DC with all my disability. Because being like invisibly disabled and trying to navigate public transport is a nightmare. 


Brianne: Yeah. 


Mugabi: And I started using a cane partially as an ambulatory aid and partially to just signify to people that, you know, like… 


Brianne: Yeah. 


Mugabi: Like give me some, like, you know, space. 


Brianne: Yeah. And like it’s hard, cause it’s like, “Hey, you might not know how to interpret my gate or some things about me.” And instead of having an interaction, if I carry this cane, you’re going to make a bunch of assumptions and they’re going to be much closer than the assumptions that you make if I don’t have the cane, so let’s use it. Yeah. 


Mugabi: Exactly. One time I was on the Metro and this… pregnant women annoy me because they feel like they have an authority. I mean, they feel like they have like a, what do they call it? Like, they’re the only ones dealing with something. 


Brianne: Yeah. 


Mugabi: This pregnant white woman, like walks up to me. I was sitting in like the disabled seating. She walks up to me and she literally like, just stares at me and barks, “can you move?!” And I was like, I look up at her, and like a million thoughts racing through my mind. Like, do I even want to try to explain? And like, the entire train is staring at me, like turned around and staring like, “what’s going on here?” You know? 


Brianne: Yeah, “what did you do to upset this lady?!” 


Mugabi: And she’s pregnant. So she’s playing all the sympathy cards. I’m a Black man. I’ve got none of the sympathy cards, you know? And I was like, if I even try to explain, like, this might get out of hand. And honestly I might get arrested and I don’t want to deal with that, I’ve already had more than enough racist run-ins with the police. Like I’m not trying to, like… Like, I was just on my way to like, what was I doing? I think I was doing like some volunteer gig. And I was like, this is too much. So like I just stood up, walked to the side and then she goes [big sigh] and then like sits down. And I’m like, I’m feeling some type of way about it, but I can’t speak about it because she holds all of the power in the situation. Like, there’s been more than one too many instances of white women, like utilizing their privilege to like kill Black men. don’t want to be another Emmett Till. And so like I just shut up, look down, and stand for the entire journey, which was hell on my body! 


Brianne: Right. 


Mugabi: It wrecked my body. And it’s like, why do I have to put up with this, because of the way racial dynamics work and the way privilege works. So I started moving around with the cane from then on, because I was like, this is too much. 


Brianne: This is not a safe situation. Yeah. And it’s like, you can see in interactions like that, it’s like how many things have gone in to construct this? Because it’s like, aha, there is this dynamic where this white woman is trying to use her power… because if the problem is that she’s pregnant and she’s uncomfortable, then a reasonable person who is pregnant and uncomfortable and not enacting any other bullshit might approach and just be like, “hello, do you need this seat? Or do you happen to be sitting in it? Might I sit in it because I’m uncomfortable?” Like, a really easy way. 


Mugabi: And why did you pick the one Black person in the disabled seats? The five white people, you completely ignored. 


Brianne: Right. 


Mugabi: You came and singled me out. 


Brianne: Right. And like, it’s like, there’s the whole thing happening. There’s the approach. And then also it’s like, what’s so… that you described that fucking sucks about the dynamic is it’s like, and then you’re in a position where you’re like, “okay, well I know that I’m disabled and that I would really benefit from this seat, but my only option is now to perform not being disabled in order to be like externally safe in this environment, which is obviously not a safe choice when I needed the seat in the first place.” Like these things really go… I mean, oppression goes hand in hand, right? Like, ughhhh. So, Uber! 


Mugabi: When I told that story to my brother like, he was like, “why didn’t you just say something?” And I was like, “you don’t understand what it’s like, you know, like you’ve never had to live in my body,” you know? And like that situation could have easily ended up with me dead. You know? 


Brianne: Yeah. 


Mugabi: This has happened time and time again, throughout history in the United States where some random white woman says something about a Black man and the Black man was completely innocent and the Black man ends up dead. I don’t want to end up dead. 


Brianne: Right. And like, yeah. And it’s easy for anybody outside of that position – anybody who’s not disabled, anybody who’s white, anybody who is at the intersection of both of those things – to be like, “well, why wouldn’t you behave this other way to make things better in the future?” And it’s like, because there will be no future. Like that’s not, that’s not the calculation in this scenario. It just isn’t. 


Mugabi: Yup. 


Brianne: Yeah. 


Mugabi: Like Emmett Till was disabled. That’s why he tripped, you know, like that’s a part of the story that gets left out time and time again, like he was going through the same exact thing that I’m going through. 


Brianne: Yeah. 


Mugabi: But people always say, oh, Emmett Till is Black. And it’s like, yeah, but he was also disabled and that’s the reason that he tripped. And that’s the reason this white woman got him lynched. 


Brianne: Yeah. 


Mugabi: It was because of his disability. That needs to be included in the conversation. Being Black and disabled is very, very different from being white and disabled. 


Brianne: Yeah. Yeah. And there, yeah, I don’t even need to add to that, but if this is news to anybody who is listening, it is a great thing to learn about how systemic racism and systemic ableism are just inextricable from each other, especially in the history of this country. This country that I am in right now, I guess, we’re talking about, but you are not in at this moment. Yeah. 


Mugabi: Nah, I left them. Like literally three months before Trump got elected. 


Brianne: Okay. We’re opposites because that’s when I moved back from Canada and that was a mistake. 


Mugabi: Oh. That’s when I moved to Canada! 


Brianne: There you go! Yeah. I left in yeah, August or September of 2016, right before. That’s funny. Well, we switched. 


Mugabi: I moved to Toronto in September of 2016. 


Brianne: Yeah! So Canada is a slightly different place than the United States. Healthcare is definitely well, healthcare is both very different and very similar, I think, between the two countries, if you had any time there. Yeah. 


Mugabi: Yeah. Yeah. I was in Canada, for like three years on and off. And like, it’s very different, because I’m not a PR, I’m not a Canadian citizen, so I don’t have access to all of the benefits that like Canadians who are citizens or permanent residents do. And by the time I moved to Canada, I had been through like an intensive, three week program at the Mayo Clinic where like, I was able to like, get the graded exercise and also just like be surrounded by other people dealing with chronic pain. Cause it was a pain rehabilitation center. And that had a lot of problematic narratives and a lot of problematic stuff that they viewed. Like they were very, very, very anti drugs of any sort to help manage the pain. Like they tried to take me off my muscle relaxants and I was like, this is really helpful with my muscle tone, they help me fall asleep, they help with my spasticity. And they were like, “but they’re an addictive substance! Look at what they do to people. Look at how people die.” And all this stuff. And I was like, “I’ve been on this since I was 11 years old. It’s literally never had a problem.” Just because like you have these statistics doesn’t mean, you know. 


Brianne: Yeah, again and again. And again, like your probability statistics probably don’t account for all of the outlying circumstances in my body. Like it’s fine. 


Mugabi: And also they were freaked out over the dosage, but like, like I’ve been on them since I was 11, you know. Like my muscle relaxants, like, if I was to give them to an able-bodied person, who’d never experienced them ever before… like I remember my brother was having trouble sleeping cause he has bad insomnia and I gave him one. I mean, knocked out for like 14 hours and he woke up, he was like, “oh my God. That was amazing.” 


Brianne: We have different bodies. 


Mugabi: Completely! Because that’s what the Mayo Clinic were expecting me to like, you know. But I was like, like I’ve been on really strong like prescription stuff as a child. Like my body is very, very different and has a very different degree of tolerance. Like I remember I was listening to this Drake song and like Drake was talking about taking the same muscle relaxant that I do to get high while he was on a plane. I was like, I don’t experience any high from this! 


Brianne: You’re like, “this is the thing that makes us different, Drake. Our lives are different. This is why.” 


Mugabi: Drake cannot relate to me. 


Brianne: Yeah. Drake who played an iconic, disabled character in his pre rapping career. So… 


Mugabi: Like the many, many able-bodied people who take away roles from us. 


Brianne: Yeah, many able-bodied people who played wheelchair users before him. 


Mugabi: it. It’s so annoying, like goodness. Or they got Oscars for being queer, or for like, oh… 


Brianne: Yeah. Performing, performing what it must feel like. Hypothesizing about oppression. Yeah. Yeah. Okay. I think we’re also, we’re getting close to two and a half hours, so I want to be kind to both of our brains too. It sounds like we’re kind of more or less up to the present cause we’ve hopped around so much. Are there any big things that we haven’t talked about about disability and healthcare and just like all of these things, how they intersect, whatever it is, anything we haven’t covered that you know you want to say? And it’s okay if the answer is no, cause we’ve covered a lot. But I do want to hear your book, to be clear, also. 


Mugabi: Yeah, yeah, yeah sounds good. Yeah. No, nothing is coming to me. And honestly like like my brain operates better with direct questions. 


Brianne: Yeah yeah, that’s fine. I just, sometimes people come in with notes. They’re like, make sure you say this thing. 


Mugabi: Okay. No, no, no, I don’t 


Brianne: Yeah, no. So that’s okay. People usually don’t, but I think it’s like, our brains are all different, like you say. Okay. So that is like, it sounds like kind of the health narrative, but also you’ve been talking about writing the whole time, from your handwriting to your love of reading. And so at… not at some point, I’m sure you’ve been writing the whole time, but at some point you begin writing professionally in some way. How did that transition happen around your health? 


Mugabi: happened because of my health, honestly. 


Brianne: Okay. 


Mugabi: Yeah, it was directly because of my health, because writing was always plan B, my entire life. 


Brianne: Yeah. 


Mugabi: And it was always, it was always in my mind side hustle. Because like both my parents came from homes with like nine siblings, in rural Uganda, with like subsistence farming backgrounds. And both of them were able to get scholarships and work their way through school to be able to put themselves in a better, like financial situation. And they all supported all of their entire siblings, paid for all of their entire siblings’ educations, put them up like while they were like job hunting, and like put everyone on their back. And they were able to do that, due to the opportunities that were afforded them and their hard work and dedication. And so they were always of the mindset that education is what got me out. Therefore, I have to stress to my kids, education, education, education, education, because I wouldn’t be where I was without it. And my dad was always telling me that like, cause my dad was very aware of the racial dynamics that he occupied. Because he was a Black man in a senior position, in a place where there were next to no other Black people. And he saw the way people treated him, day to day, at all these conferences and stuff where like, people would be surprised that like, you know… his name did not help things. Cause my dad wasn’t, my dad’s name is Ladislaus. 


Brianne: Okay. 


Mugabi: Yeah, because he was named after the Polish missionary that converted his dad to Catholicism. 


Brianne: Yeah. 


Mugabi: And so like everybody sees Ladislaus and does not expect this Black bearded man to be walking in. Like so many Polish people would get so confused. Cause they’d expect like, “oh my God, there’s a fellow Pole here.” And they’d be like, what is going on? 


Brianne: Yeah. 


Mugabi: And he married my mom, whose name is Levocardia named after a separate Polish missionary who converted her dad. 


Brianne: Oh my goodness. It looks like there’s a pattern here. 


Mugabi: Yeah. Shout out colonialism. 


Brianne: Yeah, really. Whew. Thank you Poland, in this case, but all the same instinct. 


Mugabi: Mmm. And so my dad was always like, very aware of the way that he moved through the world. And he tried to pass on to us like the world is unfair, and you’re gonna like, you know, be set up against it, just due to the color of your skin and nothing else. And like that sucks. But you can use some things to help, like fight against that. And his tool was education and he tried to pass that onto us. So very early on, both my parents stressed that like, we see that you’re doing the writing thing, writing your stories and stuff like that. And like, that’s great. Keep on doing that. But that can’t be a full-time job. 


Brianne: That’s not a real job. 


Mugabi: Yeah, exactly. Like do that on the evenings, do that on the weekends, have fun with it. But you need something practical to actually pay the bills. And my mom stressed that it should be STEM, because she came from a STEM background and she was like, “STEM is the way to like secure yourself financially.” Because she always wanted one of us to become a doctor. Which like, [laughs]. After everything they’ve done for me, no thanks. 


Brianne: You’re like “my mind, uh… soured on that idea.” 


Mugabi: And so writing was always the plan B for me. And it was always seen as a side hustle. And so like all those like short stories and stuff, and like poetry that I’d write as a kid would like be for fun. But like I, and I always dreamed of being an author and dreamed of like being published and stuff, but like I always saw it happening, never being my primary career and always like having a nine to five and then I’d write on the evenings and the weekends. 


Brianne: Right. 


Mugabi: But because of my strokes, I was limited in so many ways that that nine to five was no longer accessible to me. 


Brianne: Right. And the idea of having a nine to five and then a second job on top of it… 


Mugabi: Yeah! That’s a lot. 


Brianne: It’s like, oh. And I know people do it, but often not people who have damage or like TBIs or other kinds of cognitive impairments. It’s a whole other thing! 


Mugabi: Yeah, no, it requires a certain level of ability. And so when I saw that, like, like when I was doing my leave of absence and going through all my recovery, I was like, I don’t think I’ll be able to go back to school. Because as much as I wanted to, like my body, I knew the level of ability that graduate school and working part-time as an assistant would necessitate. 


Brianne: Right. Yeah. 


Mugabi: And I knew that my body wasn’t capable of that. 


Brianne: Yeah. 


Mugabi: And so I was like, maybe it’s something I can build up to eventually for the future. But right now it’s not a feasibility. 


Brianne: And do you think it made a difference that you had obviously a very different, but a past experience of recovering from a stroke? So you had like some idea about what might be involved even though of course, like nothing is predictive? 


Mugabi: Yes, it did help. Because I find myself doing a lot of flashing back and like, trying to like, see like what worked then versus what works now. And like, realizing that they were completely different incidents and affected my mind and body in completely different ways. And that was, I think, one of the most difficult things. Because it would have been so much easier to deal with if the second and third completely paralyzed the right side of my body and and it was the same exact recovery process, because like I already did that, you know, like I could easily do that. 


Brianne: Then you would have known. 


Mugabi: Yeah. And so I think the differences was what was so difficult because the things that worked before weren’t working now, and it was like a difficult learning process. 


Brianne: Yeah. Yeah. And it’s always hard when things don’t work because it’s like, did I do it wrong? Probably not, but it feels that way. Like, yeah. So, yeah. So you realized you were like, I don’t think that full-time school or full-time work is necessarily going to be a good idea for the body that I have. So plan B. 


Mugabi: And so one of the things I did when I was trying to like work my way up in terms of like, trying to regain functioning during recovery was I started volunteering at a couple of different organizations in the DC area. Just to like try to put my body out there to see if I could build up the hours that I was capable of leaving the home and doing some sort of task. And I hit 20 hours and I could not, I could not do any more than that. Like 20 hours was my peak. And I tried so hard and I pushed myself so hard and my body was just like shutting down, going into seizures. And it was telling me, no. It was telling me like, this is my limit, you know. 


Brianne: Yeah. We’re not doing this. You can listen or you can not listen, but it’s not going to change anything. 


Mugabi: Exactly. And so that was when I was like, all right, nine to five is 40 hours, so I don’t think that’s going to be feasible. So I need to figure something else out. And during this whole time that I was in recovery, I started writing a book. And the book was like sorta like, you know, like a project, a way to pass the time, get some writing done cause I enjoyed writing. But also it was like very much a form of catharsis, and just like a way to process everything I’d been through over the past. Because it’s designed as a series of conversations between myself and a character called Philomena, who is representative of the woman that I was supposed to be. Cause when my mom had the ultrasound and was like gender reveal, the doctors told her to expect a baby girl and she was super happy, super excited and chose the name Philomena for that baby girl. And she’s told me that story in my whole life, where Philomena is who you’re supposed to be. And so I just thought it would be interesting. Yeah, exactly. She dressed me up in all those… 


Brianne: Yeah, I did a gesture of like a parallel person kind of, for people listing. 


Mugabi: Exactly, exactly. And, so like I did a thought experiment of like how differently would my life have been? Like if I was born a girl, because like everything would have shaped me completely differently than it has now. And like I went down exploring, like would I have had a different like… and also what would happen if I was born able-bodied as well? And like what sort of career path I would have gone down, and how the world would have shaped me differently. And so, the development of like a series of conversations between myself and Philomena. And I chose to center it starting December 2014 when the second stroke happened and then ending in December 2015 on the one-year anniversary of my second stroke. Cause there was a lot of ups and downs during that time. And there was no miraculous recovery and there never has been. And I see so many disability stories like centering around that narrative of overcoming and being like, you know, like, yes, this person had cancer and was going through it, but now they’re healed! And they can run marathons! And they’re amazing! 


Brianne: It’s over! 


Mugabi: And I was like there are a lot of us who don’t overcome, you know? There are a lot of us who don’t like get back to whatever our prior baseline may have been. And I don’t see that story being told enough. And I don’t see, especially being told by someone who looks like me. 


Brianne: Yeah, we need so many more stories about this. And it’s like in the chronic illness space, in the disability space, there are people writing, of course, but most chronic illness memoirs especially are written by like a certain kind of white woman. And I really appreciate them. I’m a white woman. I relate to them a lot, but there’s also a really strong pattern in what is, and is not available and easily find-able for people who don’t get better, like you say, it’s like such a small genre, so thank you for contributing to it. And also, yes! What a huge problem, publishers who are listening. I don’t think any publishers are listening, but maybe they are. 


Mugabi: Yeah. Because like, I don’t think I would’ve got published… I don’t think the book would have got published if I’d taken it to a major, honestly, because I ended up publishing with this tiny little indie press, which was amazing for me. But like, I get so much feedback from so many disabled people about how, like the way that I designed the texts. Because it reads like a text message conversation. You see Mugabi, Philomena, Mugabi, Philomena, and we’re just chatting. And then going into like my diary entries and my tweets, and it’s like, very like millennial, but like, that’s what I am. And like a lot of people who are chronically ill and who do manage various different disabilities have told me that like, it’s the first book they were able to read in years because I designed it accessibly. And I was like, yeah, that’s because that’s the only way I was able to write it. 


Brianne: Right. 


Mugabi: You know? Like, I was incapable of writing the like heavy literary prose that like, you know, with all the jargon and like the really dense texts. And I didn’t want to write that because I wanted people like me to be able to read my work and like non-English speakers to be able to read my work. You know, like I deliberately set out to design as accessible of a text as possible within my means. And a lot of times, a lot of like, people, like I’ve had a lot of people and a lot of bookstores and places telling me like, oh, this isn’t writing, you know? Or like, or like, what is this? This is like something, a child would write. 


Brianne: Like it’s not serious. Yeah. 


Mugabi: But then it’s like, but then I was nominated for this award for speculative fiction by African authors. And so it’s like, clearly there’s something that you’re not seeing, you know. 


Brianne: Yeah. And like your evaluation metrics are optimizing for something that I am not optimizing for. Like whoever you have in your mind as a reader isn’t who I wrote this book for. So think about that. 


Mugabi: Exactly. But it’s been interesting watching people flip and like, now that I have achieved some success with the book, people are like, “oh wow, it’s amazing.” And it’s like, you’re the same person who said that, like it was something a child could have wrote three years ago. And now that I got all these accolades, you’re like “oh, wow!” 


Brianne: Yeah. Yeah. There was external validation. I always knew! Yeah. Yeah. And it’s like, I feel like, so I had a… I’ve talked about this on the podcast, so anybody listening, if they listened would know this, but like I had a pretty major crash right about a year ago now. And it’s like, I lost a ton of cognitive function for a few months, at least. And it was like, I’m done with screens, I’m done with long form reading for whatever reason. 


Mugabi: Did you have a crash right around the time COVID popped off too? 


Brianne: Yeah. It was, I had it in April. So it was a month after. I’ve had… 


Mugabi: Yeah, cause I had one in March. 


Brianne: Yeah. I think a lot of people, it’s like no matter, kind of how things ended up playing out in your region. Everything was so stressful last March, as we were trying to anticipate what was going to happen that like, I think a ton of people had crashes or flares and obviously life did not get easier for a lot of people in this time so it’s been like external stress, risk stress, whatever. Right. But yeah. So yeah. It hit you in March, it hit me in April. Yeah. And it was like, all of this stuff is happening and all of this big news was happening, and I couldn’t watch the news, which I think is common for people who have cognitive symptoms. And it’s like, I can’t watch the news, I can’t read long form reporting because it’s too complicated. Like my main source of news this last year was probably a US reporting site called Axios. And I’m like, I’m not even sure what all of your political biases are, because I don’t know you that well, which bothers me as a site, but like they do mostly bullet point reporting. And I think they’re like, we make news for like busy execs and politicians who don’t have time to read long and complicated things. And like, that’s the angle. But as I’ve been like paying attention to kind of what sources seem to be available to me and people in my community, because we all have this kind of, or many of us have this problem. It’s like, oh, there really aren’t a lot. And there’s a huge attitude about it that’s like, “well, why don’t you go read a book?” It’s like, because books aren’t accessible to me right now. Like, why don’t you make your content digestible? That’s my question. 


Mugabi: Mmm hmm. It’s not that hard, I have to say. Like it’s not that, but like the thing with like able-bodied people is they don’t care until it affects them. Like COVID was like the biggest slap in the face because it’s like, how many times was I like, trying to figure out a way to work remotely because I can’t come in every single day. And then all of a sudden, now that it’s affecting everyone, it’s like a given. And it’s like, like jobs, which literally said you must be able to come into the office every single day, or you must be able to lift 30 pounds when it’s like, I’m not going to be lifting anything in this job. Like, why is this a part of the job requirement? Those same jobs are now completely online, work from home. And it’s like, you just showed that you don’t care about us because you only care about it when it affects you. 


Brianne: Yeah. 


Mugabi: And the minute it stops affecting you, you’re going to switch back to the same old behavior and that’s going to be sad to see. 


Brianne: Yeah. And I think then that’s kind of started happening. Like, I know with some telehealth in some places even, it’s like, oh cool, now we just have to go be at risk again. Which this is another one where like, one, I don’t know when this will come out, so circumstances will probably have changed a little bit globally, but like right now in the United States, it is still… healthcare does not feel safe to go to in most places, I think. And like every country and every region is so different for this right now. But the common theme is what you just described, I feel like. It’s like, yeah, you accommodated able-bodied people and then you’re taking them away again. As soon as you don’t feel pressured to do that or something. 


Mugabi: Exactly, exactly. Like I’ve been putting off healthcare for the past like year. Just because like, I was supposed to, like, I was trying to like get back to this hospital in Thailand that did a lot of my initial follow-up care after the first stroke. Because things were getting worse, health wise and I was trying to figure it out and I tried everything under the sun and nothing was helping. And so I was like, maybe I just need to go back and like, ask them a bunch and get like two weeks in front of doctors uninterrupted to ask them every single question that I have and be in front of doctors who will actually listen to me as a Black man. And then COVID hit. And since then I’ve just been like, you know, riding it out Yeah, the border was closed for like nine months, you know, like I couldn’t have even gone if I wanted to. And then once the border was opened, I’m like, do I really feel safe flying into a hospital, for like a couple of weeks with my mother who’s 60 and diabetic, you know, like as my primary caretaker? Like, no, I want a vaccine in me before I do that. 


Brianne: Yep. 


Mugabi: Cause I’ve seen way too many people go in for like routine things at the hospital and walk out with COVID. And I’m like, yeah, that’s cause that’s the number one place where COVID is, in a hospital! That’s where everyone with COVID is congregated! Like that’s the riskiest place to be as as a high-risk person. 


Brianne: Yeah. Yeah. There’s a lot. I’ve been tweeting about this a bunch lately, so you might’ve seen it, but I’m like, I just have this feeling that in like 2024, I’m going to finally start to process how just angry this last year has made me. Both because of stuff this and like the impact on my own health and then the impact on the health of the community, because I’m seeing stories like this like every day, because of the void. So it’s like, I just, I know what people are running into. And I know I keep saying different countries, but it’s because like, literally it’s like, there are people in every… not every continent, there are people on four or five continents sharing their stories all the time on Twitter. And it’s like, we’re in different places, they’re being managed differently. But like the theme is that high-risk groups are being left behind in whatever plan. And maybe somewhere is doing this really great, and everyone there is so happy that I just don’t see anyone from that country on Twitter, in which case like much respect to whatever country is taking really good care of their disabled people. But it’s been a real theme and it’s been such a hard year for a million reasons. 


Mugabi: Definitely. One thing that I do appreciate though, about being in Uganda, is that we do have the pandemic far better contained than the majority of the world. We have like 10,000 cases 350 deaths across a population of 40 million, which like that’s the same population as Canada, you know, and like compare our numbers to Canada’s numbers. And like, you can see that we’re doing something right. And like all these, like Western scientists are like scratching their heads and being like, “how is Africa doing so much better at this than Europe and North America?” 


Brianne: “What a novel case!” 


Mugabi: It’s obvious. Yeah! And like, people say that like, Africans have higher immunity and I’m like, that’s not… Like, first of all, that’s racism, because that goes back to the whole, like, I mean… that’s the reason that it took me eight months to get anything stronger than tylenol prescribed, because they were like, oh, you’re Black, you’re a drug seeker, you have a higher sensitivity to pain, you know? Like, that just goes into so many racist myths. But it’s like, like I can see clearly why we’re doing so much better, and it’s because we have experience handling epidemics. And y’all don’t! When’s the last time the United States got hit by an epidemic? Ebola and the whole country freaked out and didn’t know what to do. I was like, what is going on? Because Ebola outbreaks happen in Uganda like every other year, and the whole country moves into motion. Quarantine the area, everybody has no physical contact with anyone. Like, even in church, the minute there’s an Ebola outbreak. You don’t shake who you’re saying like “peace be with you” to. 


Brianne: Yeah. Like it’s serious. Yeah. 


Mugabi: Yeah. Like everybody moves differently until the outbreak has been, you know, dealt with. And then you can go back to moving the way you used to. And it’s like, there’s not a culture of that in the US or Canada or Europe, because you’ve never had to deal with an epidemic. It’s like, you know, like, it’s just like, this is all new to you. 


Brianne: Yeah. 


Mugabi: So many people are surprised, but it’s like, we just have experience. And y’all don’t. Like, what you should be doing is learning from us. 


Brianne: Right! 


Mugabi: But you’re like, “oh, how did these people, like, how could we learn from these inferior people?” You know, like, it must be genetically… 


Brianne: Yeah. It couldn’t possibly apply to our situation. 


Mugabi: Exactly. 


Brianne: It’s amazing how much it’s the same instinct of just like, “oh no, we are the ones who know the most. So anytime someone appears to be demonstrating knowledge that has outpaced ours, we must assume that that was a weird fluke that we can find an explanation for.” Instead of just like taking the more obvious answer that yeah, people have had an experience and learn from it and that we could also learn. And it’s so wild, I guess, watching like the UK and the US where it’s just like these two countries are imploding because of this attitude of like, “no, we know best, we can’t take any input. Like why would we do that? Let’s just continue this attitude into the position that we’re in now.” I could rant about the US for a long time, but I was going to say that earlier. I’m sure it must, it’s like it… the pandemic happening impacts everything and daily life must be really different if local risk factors are lower. And then also as a disabled person, the impact is still so present when you know that your risk is higher and you have to think about that in every single one of your decisions as long as there’s a pandemic happening. Yeah. 


Mugabi: Exactly. Like I haven’t been outside in like, outside of this house, in like close to a year. I think it was like March, late March of last year. That was my last time, like being able to leave the house because my health has deteriorated so much that, like, I can’t walk any more than a couple of steps now. So like I can walk to the bathroom. I can walk to the kitchen, you know, but like, I can’t just like go outside for a walk or I’ll crash and like, my legs will start shaking and would give out from under me. I’ll go into a seizure. So like, I just have to limit activity and stay within my energy envelope. 


Brianne: Yeah. 


Mugabi: So like, I don’t know what the actual situation is like physically outside because I see it on the news or something, or like on Twitter. 


Brianne: That’s how it’s been for me too, with the April crash. 


Mugabi: Yeah, it’s a weird experience. Or like, you just rely on like feedback from people in your life who do go outside. 


Brianne: Yeah. You’re like, “how is everybody out there?” 


Mugabi: Mmmhmm. But like I heard on the news that like, if you’re seen without a mask in public, you get warned, and then if you continue you’re arrested. Which like is like a massive consequence, but it keeps people in line. 


Brianne: Just escalate. 


Mugabi: Like that’s one of the perks of having an authoritarian in power is like, they can handle stuff, you know? Cause like… 


Brianne: they use their authority. 


Mugabi: But like, it keeps people in line, which I appreciate. 


Brianne: Yeah. 


Mugabi: Cause that’s why the numbers are so low. 


Brianne: Yeah. Yeah. 2021. I hope that things improve or continue to improve for all of our access to healthcare’s sake, among other reasons. Okay. Thank you so much for taking the time to talk to me! I’m glad that we found a time to connect, bodies. 


Mugabi: Yeah, thank you for having me.

[guitar riff]

Drew: Thank you for listening to episode 78 of No End In Sight! You can find Mugabi on Twitter @mugabsb, and on instagram @mugabs. You can find me on twitter @fibrofuckboy, and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on twitter and instagram @bennessb, and you can find many more conversations about chronic illness on twitter @RTsFromTheVoid. And don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple Podcasts/iTunes. Thanks for listening!

The post 78 – Mugabi appeared first on No End In Sight.

Krystal Vasquez talks hypermobility, mast cells, and CSF leaks.

Brianne: I’m Brianne Benness, and this is No End In Sight, a podcast about life with chronic illness.

[guitar riff]

Drew: Hey, this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on Patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, we’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. Today we’ll be talking with Krystal Vasquez about hypermobility, mast cells, and CSF leaks. A couple of content notes for this episode: There’s a mention of food tracking around 32 minutes in, and COVID is mentioned a couple of times throughout the episode with a discussion surrounding infection risk at the 45 minute mark. Before we start, here’s our disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: So I like to start just by asking people, how was your health as a kid?

Krystal: So I always thought that I was like, a super healthy child.

Brianne: Yeah. “Really?” But like, perhaps it happened to your mom.

Krystal: Right. Like, it was probably normal for her, but it wasn’t normal for like, the general public. I also had a lot of like, weird presyncope spells, which they usually say like, you get as a teenage girl for some reason. But it didn’t really go away. It’s gotten to the point where I… so I never actually faint, but I can… when my vision blacks out, I can still like, migrate to my next destination pretty well. And I feel like that’s a skill.

Brianne: Yeah. There’s like a level of stasis that you can find where you’re like, “Okay, well, my eyes aren’t working anymore, but my legs are still… like, my arms and legs are still responding. So if I can just get myself to a safe location, I don’t need to see for the next…” But it’s like, you’re right. It is a little bit of a gamble.

Krystal: Yeah, but like, I thought that was normal. Like, people just do that and I’m like, “Oh, it’s not.” Also like, sitting in the shower isn’t a normal thing. I’ve sat in the shower, like the floor of the shower since I was little. Like, showers are exhausting if I don’t sit.

Brianne: Right. Yeah. And they are. But like, as a kid, especially stuff like bathing, I think, where like, you probably only know your immediate family’s habits and like, maybe somehow a couple other close friends or something. We’re not all talking about our shower postures every day, like at public school or something. You just wouldn’t even know.

Krystal: Yeah I’m just like, “Why wouldn’t people sit in the shower? It’s so much more comfortable and easy.”

Brianne: “Don’t they get dizzy?”

Krystal: “Don’t they get tired? Like, isn’t the water like, too hot for them?” Yeah. Those things.

Brianne: Yeah. Yeah. So you had like, what we would maybe say like, idiosyncrasies that at the time you didn’t know were perhaps unusual or meaningful, sounds like.

Krystal: Right. And I also sit really weird. So you can’t see it now, but I’m like in a ball.

Brianne: Yeah, me too. I’m like, this is my knee right here at the bottom of the camera.

Krystal: Yeah. So I’ve always sat really oddly, I guess. Which, I don’t know, people just thought, “Oh, Krystal’s just weird. It’s fine.” But I’m learning that that’s probably to help my hips feel comfortable and to help my body stay upright.

Brianne: Yeah. Yeah. I’ve been learning so much about that, the last few weeks even. And it’s like, “Oh, people who may or may not be a hypermobile, like, our postures are really going to be correcting differently.” And like, some of these habits might anecdotally turn out to be really big patterns and people with this body stuff. Tell me if you relate to this or not, but I feel like being a fidgety sitter when you’re younger, people just think that you’re annoying. They’re like, “Why can’t you just sit still? And it’s never like, “Oh, I want to annoy everybody by moving my feet a lot to keep circulation.”

Krystal: I’m just uncomfortable. Like, I wrap my legs around chair legs. I’ve crossed my legs like, two times sitting cross legged or whatever. Yeah.

Brianne: I noticed yesterday that I was like, jiggling my calf a lot, just like, tensing and un-tensing. And I think my husband asked me about it, and I was like, “Oh, I do that all the time. I just never…” If someone had asked me and I wasn’t doing it, I would’ve never thought that I did that, but he was like, “What are you doing right now? Is that on purpose?” It’s like, “Oh yeah, I think I do that all the time.” And now I’m like, “And I bet it’s for circulation.” I just didn’t ever realize that it made me feel better.

Krystal: Right. My hips are probably one of the most hypermobile parts of my body for whatever reason, and I’ve definitely noticed that that’s the area that hurts if I’m sitting like, properly. So I’m just like, “Oh, bodies are weird.”

Brianne: Yeah, yeah. And chairs are weird.

Krystal: Chairs are weird.

Brianne: But so as a kid, these are all other kinds of signs that are starting to pile up. And was there a point when you were younger, when anything started to look suspicious or kind of changed or did that trend last through school, kind of?

Krystal: It lasted for a while. The first major thing that had ever happened to me was in college. I was training for a 5k and so running on the street and cement. And suddenly I got this really like, painful feeling in my pelvis. And so I went to the doctor, and they were just like, “Oh, your hip’s misaligned.”

Brianne: Oh!

Krystal: And I’m like, “How did that happen?” They’re like, “I don’t know. It’s misaligned. We’ll realign it.” And I’m like, “Is this a normal thing that happens?” In the same appointment I also asked about my knees cause they’re the ones who always hurt. And then they’re like, “Oh, that happens sometimes.” And I’m like, “To like a 20…” what was I? Like, 21 at the time?

Brianne: You’re like, “Okay. But do all of these things happened to the same 21 year old very often?”

Krystal: Right. And like, I never really ran again after that. Cause like, it would come back a little bit, not as bad as the first time. And I’m just like, “Well, I guess running isn’t for me.”

Brianne: “I just have a funny hip.”

Krystal: Yeah. It was really confusing.

Brianne: Yeah. Yeah. It’s so weird once you start to like, put pieces together, and you’re like, “Oh, that doctor just didn’t know.” Like, “The questions that I was asking were the right questions.”

Krystal: Looking back, I think my doctor actually was quite confused, but they just didn’t admit it.

Brianne: Right.

Krystal: But I also wasn’t like… I didn’t know how to press them like, properly, so I just let it go.

Brianne: Yeah. It also feels like, I think, “What are they going to do?” Like, you have an injury and the injury… like, they’re treating it or they’re not treating it, but they’re… the underlying thing… there’s nothing to know yet. Not that that’s really a defense. That’s terrible. Okay. So you had a running injury while you were in college. And you stopped running, but you were like, “Okay, well, that’s a weird thing, I guess.” And then, did you more or less go back to normal, but without running?

Krystal: Mostly. Like, I just always deal with headaches. That’s a thing that has always happened to me. But for the most part, my health went back to baseline until grad school, which is when all of the stress and whatever made my body into a disaster, and all of the EDS and all of its friends came and was like, “Hi, nice to meet you.”

Brianne: Yeah, there was like a perfect storm. It’s interesting knowing about EDS a little bit, how people are like, “It’s weird that chronic illnesses like, so often have a stressful onset. Is it the stress?” And it’s like, “Well kind of, but also like, the kindling was already there. Like, it didn’t come from nowhere.” Okay. So what were you aware of first?

Krystal: Like, symptom-wise or?

Brianne: Yeah, like when that was starting.

Krystal: There was a huge change to my mental health first. That was the first thing that came. And I went to see a therapist who, this plays a role later, but coincidentally, also has EDS. It was amazing. So I had this whole like depression/anxiety, and I was talking to her and at some point during grad school, I offhandedly mentioned to her like, “Oh, I was walking from my train stop to school, which is like a mile, and for some reason I felt compelled to sit down halfway. Like, I just didn’t have the energy to continue going. I must be really depressed or something.”

Brianne: Yes. That’s like, what I was like exactly. Like, “Why can’t my brain keep up with anything?”

Krystal: And she’s like, “Oh, that’s interesting. You should go see a medical doctor and make sure like, your hormones are fine. Your thyroid is fine. Like, you don’t have like, a auto-immune disease.” And so that kind of started my medical journey of going to doctors and them being like, “You’re probably depressed. You should see a psychiatrist.” And I’m like, “I don’t really want to.” Also, cause I had a lot of weird reactions to medications when I was going to a psychiatrist, which I guess is normal for people with EDS and such.

Brianne: Yeah. But at the time you were like, “I have bad luck with medication,” right?

Krystal: Yeah.

Brianne: Yeah. And also you now realize, you’re like, “Also there’s mental health history, and mental health medications I’ve always had trouble with.” So then, did things start to kind of pile up slowly or did things go real quickly?

Krystal: It started slow. So it then started with like, aches and pains when I woke up. Like, my legs and arms were just super tired all the time, and like, there was this like, overwhelming fatigue. And that happened maybe through one summer, and then towards the fall, when I started revamping my schedule a little bit more, I started having nerve pain. So, nerve pain in my arms. And then I was like, “Oh, this is really not good.”

Brianne: Yeah. It’s like, so more… it’s electric. It’s like, a whole other thing than fatigue, where you’re like, “Well, am I tired?” I feel like you never wonder if you’re having nerve pain or not.

Krystal: Right. If I’m tired, I’m like, “Oh, I’m just stressed,” or, “Oh, I’m just depressed or I’m just anxious.” But nerve pain, I’m like, “Oh crap, is there something wrong with my brain, my nervous system?”

Brianne: Yeah. “This feels serious.”

Krystal: Yeah. What happened one time is at school I was working, and I just felt really out of breath, and I felt really tired. And I was like, “I’m kind of scared. I’m going to go to my health center at the university.” And then they were like, “I don’t know. Let’s send you to a rheumatologist. Why not?”

Brianne: Okay. Yeah.

Krystal: Yeah. They’re like, “There’s nothing wrong with you. Your temperature is fine. Like, you don’t seem sick, I guess.”

Brianne: “The two things that we know to check for.”

Krystal: Yeah. And then I think this was the same visit or maybe a followup visit was like, “I think you have fibromyalgia. We’re going to send you to a rheumatologist.” The doctor at my school sent me just this packet of like, “This is what fibromyalgia is,” and handed it to me. And I kind of was sitting there and I’m like, “You just kind of told me I had this chronic thing that can’t be cured.”

Brianne: Yeah. Perhaps a little bit more conversation is necessary.

Krystal: Right. And then they’re like, “There’s nothing else I can do to you.” And then the specialist was like, “Yeah, you probably have fibromyalgia.” So I have this really bad history with rheumatologists. Like, I cannot stand them right now. The first one was like, “Oh yeah, well, most of my fibromyalgia patients feel like they want to die,” which was confirming, but also kind of messed up to say, when you first meet someone.

Brianne: Yeah. Like there are so many ways to try and be like, “Just so you know, you’re not alone in experiencing this as difficult.” There are much gentler ways and different things to say that are not that because that is jarring.

Krystal: She was also not really fond of medicine for some reason. Like, taking medication. So I think I just had a couple of muscle relaxers, which I also react really badly to, for some reason.

Brianne: Right.

Krystal: My history continues. But eventually she left the practice, and I got switched to another one. But at this point I’m kind of like “Fibro doesn’t seem like the whole picture.” I also have this really weird relationship with fibromyalgia because just throughout my diagnosis history, it’s been one of those things where like, “It’s just fibro. Like, there’s nothing else wrong.” And I’m like, “There’s obviously something else wrong.” So even if fibro is something that I have, which I still don’t know, I’m kind of like, “I don’t want to touch it.”

Brianne: Yeah, that’s so valid. It’s such a complicated thing that like, fibro is a symptom cluster really. And there’s research into causes of that symptom cluster. Like, it is a real experience and a real diagnosis, but it’s not a diagnosis with a known underlying cause, or even really a single unifying theory. It’s like, probably a whole bunch of people with different underlying causes and the same symptom cluster, but a lot of doctors don’t treat it that way for some reason. They like, either just like, “Fibro’s fake, and that means that you’re not sick at all.” Or they’re like, “Everything you have is caused by fibro.” It’s like, “Well, nothing’s caused by fibro. It’s descriptive.” It’s not anything. Like. This whole linguistic mess. It’s become a lot clearer to me the more I’ve talked to people, and the more that I hear people especially with fibro, who turned out to have an underlying condition, which is like… again, doesn’t mean that fibro is not real. It means that fibro is secondary to the underlying condition and not everyone with the underlying condition have fibro as a result. Okay. That’s like, all of the disclaimers for everybody listening about diagnostic validity. It’s complicated and understandable.

Krystal: It gets even like, more messed up when all of your blood tests come back negative. Well, at least within the range, and I’ve learned recently that the range is kind of crap. Like, even if you’re within the range, but you’re like, on either end, it could still mess up your whole system.

Brianne: Yeah. Yeah.

Krystal: I went from rheumatologist to rheumatologist to try and figure out what was wrong, and they’re all like, “Fibro!” There was this one rheumatologist that I went to who was supposed to be really really good. And they were off of my insurance, so this was out of network. And it was probably the worst experience in my life.

Brianne: Oh, no!

Krystal: Cause I like, met with her, and I had mentioned the EDS cause at that point I was like, “Oh, I think that this might actually be a thing that I might have.” She was like, “Well, even if it is EDS, there’s no cure. You just have to go to PT or something, or like, they just have to like, learn how to like, position themselves properly.”

Brianne: Yeah.

Krystal: She also… I followed up in an email, and she was like, “You’re not hypermobile.” And I’m like, “You didn’t like, test, you didn’t do the…” what’s it called? The Beighton score. She didn’t do any of that to me. And I was like, “You don’t actually know, and it’s on my chart from my other doctor.”

Brianne: Yeah. Like, “You’re just not even… this isn’t About me. It feels like you’re not looking at my info.”

Krystal: Also the fact that she said that EDS can’t even be cured, but like, she was still like, “It’s probably fibromyalgia.” And I was like, “That also can’t be cured.”

Brianne: Right? Yeah. Like, “What is your enthusiasm here?” And with EDS, I’ve probably said this like a million times in this round of podcast episodes that are going to come out, but it’s so frustrating because yes, it’s true that there’s no targeted treatment or medication. But like, one, it is absolutely true that learning about your body mechanics can make a big difference for a lot of people, and two, it informs all of your other care. Like, it should inform cardiology. It should inform, I mean, literally everything. So it’s so ridiculous for doctors to be like, “You don’t need to know if this applies to your body or not.”

Krystal: Right.

Brianne: So there’s a rant.

Krystal: Yeah. I think long story short, like, I ended up finding this primary care physician who… I think his daughter has EDS, so he’s really familiar. And he handles a lot of EDS patients in the area. And I finally got my diagnosis: hypermobile EDS, surprise!

Brianne: You said you had mentioned it to your previous doctor, so by then you were like, looking for care for EDS to be evaluated for it specifically, right? You weren’t like, “What could I have out of anything?” You were like, “Who can actually help me with this thing that seems to be at least part of what’s going on?”

Krystal: Yeah, I think a few people had mentioned it was a possibility to me, a few people who at least know of medical things. And I was like, “Well, I do kind of pass this like, weird arbitrary Beighton score thing, and I also have all these other symptoms that I guess kind of match.” And then I got that diagnosis, and then with it… I don’t have to have an official diagnosis for dysautonomia or POTS, but it is like, a thing that I know I have.

Brianne: Right. I mean, other kinds of dysautonomia are more complicated, but POTS like, when you check at home, you’re basically getting the same information as when the doctor checks. And that doesn’t mean that a doctor isn’t valuable for managing it, but it just means like, it’s not a lot in question. Your autonomic nervous system is dysregulated, you can tell.

Krystal: Yeah. I know early on, when I first learned about dysautonomia, I brought it up with an older primary care person, and they were like, “Oh, do you have like, a Fitbit or something? Like, do you check this?” And I’m like, “Why aren’t you… isn’t this your job?”

Brianne: Yeah. “Can you check it?”

Krystal: Like, “How do you know if I can afford a Fitbit?”

Brianne: I think about it that all the time too, which is that like, Fitbits and other… I know some people who are very deep into tracking tools like, Garmin has a fancy watch. There’s like, a bunch of them, and they’re so helpful for dysautonomia, but they’re… none of them are considered medical right now. And they absolutely should be. You should get a Fitbit as soon as someone thinks that you might have dysautonomia, and you should get to keep it. Like, they are a medically necessary tools, but they’re not priced or acquired that way right now. That’s like, everything that doctors think about, what might be helpful, “Have you tried this expensive intervention that I think you might like if you can afford it?”

Krystal: Yeah. It’s a mess. I’m really privileged. I can afford a Fitbit, and I can afford a lot of tests, and I have reasonably good insurance since I’m still a grad student.

Brianne: As soon as you’re in a community like, you know where the barriers are with other people too. It’s not like, “Oh, cool. I ended up being okay, so now it doesn’t matter that it’s a problem.” okay. So you were diagnosed with EDS, and you live with dysautonomia and POTS although you have not had a tilt table test, which is… plenty of people who are diagnosed that way also, like without one. So it’s kind of arbitrary.

Krystal: Yeah. Yeah. When I did go to a cardiologist, they were kind of like, questioning my EDS diagnosis and they’re like, “You should get genetic testing.” I was like, “If it’s hypermobile EDS, that doesn’t really matter, so…” But I don’t know… that ended up falling through. I also ended up figuring out that CSF leaks were really related to EDS.

Brianne: Yeah. So you were like, “I have EDS, and now I must learn all about it,” probably, as a grad student. And you recognize POTS right away, or like, kind of pretty soon. How did you start to uncover the other co-morbidities or complications? Were you like, paying more attention and you could feel it?

Krystal: Yeah. So, the CSF leak in particular was like, the weird one that I had no idea about. I took a medical leave for maybe five months, maybe like a year ago, and during the medical leave, I was basically horizontal the whole time. And I was just attributing it to like, “Oh, I’m in pain, and everything sucks. So I’m just going to lay down.” When I went back to work, which coincidentally happened at the same time the pandemic hit, so at least I was at home. But I noticed that I couldn’t sit at my desk for very long without getting like, this whole like shoulder pain and like, a headache and a migraine eventually. And I was like, “Oh, this is weird. What does EDS have that could cause this?”

Brianne: Which again, this is one of the reasons that it’s so important. It’s fine that there’s no magic drug. Being able to Google that is already so helpful, or wherever you do your searching.

Krystal: Right, Yeah. And so first was like, instability, any cervical spinal instability, but like, all my MRIs and imaging are always normal, like frustratingly normal.

Brianne: You’re like, “I would love to have a healthy neck, but if I have the symptoms of an unhealthy neck, it’s not very comforting.” Same as any other test.

Krystal: Right. I think also my therapist, coincidentally also had a CSF leak in her lifetime at some point. And so she was basically like, “Well, it could be like this, this, or a CSF leak.” And I was like, “Oh, what’s that? Let me Google it.”

Brianne: Yeah.

Krystal: I ended up finding a specialist, I think that was recommended to me. My imaging was still pretty normal, so they were like, “It’s probably nothing. But if you want to, you could wear this abdominal binder for like, a couple months, and see if your leak symptoms get better. Cause if they do, then that means that you probably have a leak because you’re raising your spinal pressure by having this constriction.”

Brianne: Okay. Is it like around a chunk of your torso, kind of?

Krystal: Yeah, it’s basically around most of your torso. I think people also wear them after like, abdominal surgery to like, kind of keep everything together. But it also happens to raise fluid pressure. I don’t know terminology.

Brianne: Yeah. And I will say, like, I don’t know as much about CSF leaks because they’re like, too close to the kind of thing I get squicked out about. But so cerebral spinal fluid, which is like… what it sounds like brain and spine goo. And if your connective tissue isn’t optimal, it’s possible that the lining of your whole situation that keeps that goo inside can be punctured or kind of… I’m like rubbing my hands together as if people can hear me and know what that means. Yeah, and so obviously if it’s not sealed, then the pressure will go down, and if you’re vertical, your brain is going to feel that first. This is just for people listening, the really technical explanation. So that’s what the CSF leak is basically. And so now what you’re describing would be… it’s like, obviously you can’t put pressure on your brain. I look ridiculous, but people can’t see me. I’m like thinking about the words for head, but you can put pressure on your back by putting pressure on your whole body. I think. I know that I didn’t explain it any better than what you’ve said, but this is like context for people who aren’t used to this corner of the world.

Krystal: Right. I’m also going to adopt spinal goo into my vocabulary. It’s a great phrase.

Brianne: Yeah. Yeah. All of my words are just, “How can I talk about this not anatomically to trick my nervous system into not thinking that I’m talking about nervous systems?” because it makes me faint.

Krystal: Yes. Please tell me if I’m getting too like, detailed.

Brianne: Yeah. No, and you’re fine right now. Cause it comes up a lot like, in these conversations, and so sometimes I do start being like, I’m going to listen slightly less to some of these words. And if that happens, that’s why, but so far so good.

Krystal: Okay. Cool. But yeah. So when I put the abdominal binder on… as a side note like, I absolutely hated the binder. For some reason it like, makes me feel really like, depressed and like, ugly and gross. Like, I don’t know. It’s like, this weird psychological thing.

Brianne: Yeah. Like, a type of dysphoria, but yeah… cause dysphoria obviously, there’s gender dysphoria, but there’s other experiences. Like weird body not the way it wants to be thing.

Krystal: Yes. Weird chronic illness related dysphoria, but I can’t really put into words what exists in my brain.

Brianne: Yeah. That’s valid.

Krystal: And then I ended up talking to the nurse, so the nurse was really great. The specialist himself was kind of like, “Your imaging is normal, so whatever.”

Brianne: Yeah. “So why are you here?”

Krystal: Yeah. The nurse followed up, and the nurse was really great. And she was the one who suggested the abdominal binder. And after like, I think a few months of trying it, I was like, “I got better, and I’ve had like, almost no migraines and very few headaches.”

Brianne: And were you able to be upright more often? You were kind of doing more of your normal activities with it on?

Krystal: Yeah. For most of the workday I could. Nighttime always got worse because you’re upright for so long. Like, not even the binder could help you at that point.

Brianne: You noticed a difference, but it was not the same as not having the problem.

Krystal: Right. Yeah. So then, they can patch it up, and I eventually got that procedure. I had to have it twice because the first one didn’t take.

Brianne: Oh no!

Krystal: Apparently that’s normal. I would assume that it’s more normal for people with weird connective tissue.

Brianne: The injury is more normal for this population and also poor wound healing is normal for this population. Yeah.

Krystal: Yeah, right. The first time, I got up from bed, I guess a little too fast, and I was like, “Oh, that doesn’t feel right.” And then like, all the symptoms came back like, almost immediately.

Brianne: Oh no! You must’ve been so frustrated.

Krystal: It was so frustrating, and then I had to wait another like month and a half or something. And then with the pandemic, obviously things are slow and hard to like, schedule. And then like, my partner couldn’t come with me, either time. And I hate doctors.

Brianne: Right. Understandably.

Krystal: Yeah.

Brianne: And so the most recent one… obviously you said they were both during the pandemic, but the second one then, was relatively recently to when we’re recording, right?

Krystal: Yeah. I think it was in the end of October maybe. That one took, and so right now I’m sitting up.

Brianne: Yes.

Krystal: Like a human.

Brianne: Yes. It’s so exciting to be able to sit up sometimes.

Krystal: I told my primary care that when I saw him a few weeks ago, and he was like, “It’s amazing the things that you get excited about.” And I was like, “I know, right?”

Brianne: Yeah. You’re like, “You don’t understand what it’s like to have your brain be like, ‘Vertical is not happening.'”

Krystal: Yeah. I mean, EDS sucks in general and all the stuff that comes with it, but I think the CSF leak was definitely the most disabling symptom that I’ve had so far. And then of course, cause I’ve been horizontal for months, my neck is now a mess, and it hurts. But at least it doesn’t hurt because of the CSF leak. So I can like… I have pillows that I conveniently place around my body.

Brianne: Yeah.

Krystal: Yeah. And then I’ll get PT, probably next year, and that should help more.

Brianne: Yeah, I was going to ask you about that. You’ve probably seen me talk about this, but I just started PT this year, in October, I think. So I’m like a month and a half in or something, and I can’t do it every day. Like, I’m trying to be so gentle about it, but I already… on the days when I do it, I can really tell that my body is like, aligned better and so much happier. And then I kind of get mad that it’s like, “Why didn’t I start this 20 years ago? Why didn’t… Why wasn’t anybody looking for this? Blah, blah, blah.” But I let it go. PTs is really helping for me.

Krystal: Right. My first round of PT, which is before all this leak stuff happened, like, I was like, “Why does my body feel so much better with these random stretches that I’ve been told to do?” Like, it makes no sense.

Brianne: Yeah. All of my exercises are very gentle, and she’s given me some ways to make them a little bit more… like, more resistance or more difficult, but they’re still all lying on the ground. I have like, three sitting up exercises and one standing stretch, but I got to be like, “Hey, can you give me some modifications for, if I’m lying on my back all day?” She was like, “Yes, here’s your lying on your back all day workout.” Regular care does not stand up to this, to people who understand hypermobility. Okay. So that was in October. And then, it sounds like… this year must be really hard or to kind of, untangle if you were like, adjusting to the pandemic. You had come back from medical leave. I guess a while ago now, but like all of these things are kind of stacking on top of each other.

Krystal: Yeah. I came back from medical leave April. I found out about the leak early summer. I think my first patch was July. My second one was October. I also was like, I think a few weeks ago, put on anti-histamines, so both H1 and H2 receptor blockers. I don’t know. I haven’t really looked at terminology that much. And that has been amazing also.

Brianne: I started, just taking them at all with like, safe over the counter doses back in April, I want to say. Because I had been… I had a big crash in April. I don’t really know what happened, but anyway, I was like, “I feel terrible, and I’m sleeping terrible. And I need to do something, and I know people are talking about this.” And it was like, it didn’t make me not crashed, but it made my sleep so much better. And I was like, “I need to learn more about this later,” because I’m sure it’s not… it doesn’t work for everybody. Not everyone has the same underlying patterns, but like, it’s too much of a coincidence to ignore that a lot of people with connective tissue problems also have mass cell activation problems and also their sleep is impacted.

Krystal: No, your tweet from a few hours ago, I was like, “Oh my gosh.” Since I’ve taken it, a few days after, I’ve been sleeping so much better.

Brianne: Yeah. Yeah. It made a big difference for me. And then I like, just this week… after starting them in April, this week I’ve been really dysregulated again. And I was like, “I need to like, do some of the research to find out what the actual sleep histamine thing is.” And I had decided to do that, and then I got to interview Alex for a podcast episode. So, probably it’ll be like, right before or right after this one. Hard to say, but it’ll be in this batch. So there’s an episode, and it’s three hours. And Alex shared a lot of the research that they’ve done into this stuff because they had been diagnosed with narcolepsy and like, went really deep into sleep architecture and like, histamine cycles and all of this stuff. And I was like, “I have to do much less research now that I’ve been lucky enough to listen to this, so great.”

Krystal: I am excited to listen to it when it comes out, because I need to know.

Brianne: Yeah. Yeah. So I’m really excited to share that. What I really would love is for us to be able to see doctors and allergists who know about this cross-system problem, but that’s not the world that we’re living in right now.

Krystal: Right. At some point I see a neurologist who’s also kind of a sleep specialist, and basically they’re just like, “You have idiopathic hypersomnia. You’re always tired, but we don’t know why.” and I’m like, “That’s not helpful, but okay.” Now I kind of know why

Brianne: Right. It’s so hard when you’re like, “Okay, well what’s dysautonomia, and then what’s just like, ‘My body hurts because it’s taken so much abuse,’ and then what’s maybe a mast cell reaction or like, some other kind of immune problem?” It’s tough.

Krystal: I think dysautonomia is interesting because it can be caused by so many things. So I’m like, “What’s the pots? What is the mast cell? What is the CSF leak?” Cause that definitely improved my dysautonomia when that was fixed.

Brianne: Oh, yeah, I bet. And it’s so hard untangle. Okay. So since the running incident, which is when you became kind of more aware that like, something interesting was going on, did you go down any weird, unrelated research holes, or like, weird experiments that weren’t typical or kind of any of that other stuff during that time, while you’ve been also investigating and also a full-time student?

Krystal: So after the running incident, I… well, cause everyone always told me, “Oh, you’re so healthy. Like, it’s amazing how healthy you are.” So I didn’t really think it was anything major.

Brianne: Right. Or that it would mean… like that it meant something.

Krystal: I’ve gone down rabbit holes of auto-immune issues because I have all this inflammation that I’ve been trying to track, hence all the rheumatologists. I think it ended up being mast cell because it’s definitely gone down a bit since I’ve started taking the anti-histamines. But yes, I’ve looked at a lot of auto-immune stuff, so I’m quite educated about that now for some reason.

Brianne: That’s how I feel, too. It was like, I was in this middle stage for so long where it was like, “Something’s going on. What do I need to learn about so that I can get tests? Like ask the right questions or whatever,” but it was not like, any of those.

Krystal: Yeah. Yeah.

Brianne: And then, especially as you’re starting to look at mast cell, have you thought much or looked much into environmental triggers and diet triggers? Like, is that something that you’ve had to think about or has it been not a priority because it just hasn’t been the biggest fire?

Krystal: It hasn’t been the biggest fire. I also have this issue with tracking food. For just reasons that food is such a big part of my life and like, my social life, that like, anything that would make me think that I can’t eat a certain thing, just throws me into this spiral of like, anxiety.

Brianne: Yeah.

Krystal: Yeah. And then environmental triggers, I haven’t really tracked that much, mostly because it’s just too much work.

Brianne: Yeah. I feel like it’s the kind of thing where like, the position that you were in before you knew that you had a CSF leak… it appears to me anecdotally, that it’s like, if you’re that sick and you don’t find the information… so it’s like, if the binder hadn’t helped, I guess, and then you were like, “Okay, well, back to the drawing board.” I feel like that’s when definitely for me and other people have to be like, “Okay, do I really have to do this work of like, thinking about all of these other things?” It’s so much. And if it’s not the main problem, it’s like, an expensive time waste. God, I just want healthcare to know more about us already. That’s… is too much to ask?

Krystal: Same, yeah. So you’re putting out fires, so you put out the main fire. But then when you put out that fire, a bunch of other fires appear cause your body’s like, “I can focus on these other things now.”

Brianne: Yeah. “We have enough awareness for you to notice this thing that was probably already going on, but you didn’t feel it or whatever.”

Krystal: Right.

Brianne: Yeah. Sometimes it feels like it never ends. So since diagnosis, how has school been? Up until that point, you probably were just like, “I’m a student. Nothing to think about here.”

Krystal: So school… just school and research was not the worst. I was pretty lucky that my advisor and my lab are pretty supportive. And so like, it’s… I mean, it took a long time for me to use mobility aids around them, but like I eventually got there and it was fine. And now I’m just the girl with the cane.

Brianne: Yeah. Yeah.

Krystal: My lab is not accessible though, which is quite frustrating, and I wrote a whole article about lab accessibility, like a few weeks ago. What has been an issue… or what was an issue was, I also do field work on occasion. And field work for me, in my lab is you either go to the middle of a forest somewhere on top of the giant tower and put an instrument up there and you climb up and down, that’s one, or you gut out an old plane from the sixties that is now owned by NASA, and you put a bunch of instruments and a bunch of scientists fly around into… I think the last one was fire plumes or something like, smoke plumes.

Brianne: Okay.

Krystal: The second one, so this the plane one, I almost couldn’t go because you had to fill out a medical questionnaire and the doctor denied me participation access. It wasn’t like a, “Okay, let me talk to you as a doctor and see what your needs are and…” you know. It was just like, “No.” It was outright like, discrimination. Like, “You’re not allowed because you have some kind of thing wrong with you.”

Brianne: Yeah. And like, probably something that the doctor didn’t really understand. Like, “You have a scary-looking thing.”

Krystal: Yeah, I think I mentioned my medication, which at the time was an SSRI that also worked for fibro, I think. I mentioned that I can’t lift more than 40 pounds because I would hurt myself, and I mentioned that I use a mobility aid on occasion, not even all the time, just sometimes. And they’re like, “You’re a danger to the whole mission.”

Brianne: Yeah. You’re like, “Okay?”

Krystal: And I’m like, “Am I though? Like, nothing changed. Like, I can still… like, I don’t need to do any of the, like… I don’t need to walk. I don’t have to carry things. I have teammates who can do that, and they know my needs. We ended up fighting it, my school and I, but it was this whole thing where like, I had to jump through so many hoops. At one point they were mad that I was taking medication, even though they didn’t bring that up the first time.

Brianne: Yeah.

Krystal: I don’t know. I think we eventually won. I probably called them out on Twitter. That probably helped. No one confirmed this for me, but I remember making a post on Twitter. And I remember someone commenting, “I’m going to contact this person.” And then the next day, all of a sudden they’re like, “Oh, things are moving again, and we’re going to try and fight this more.” Cause we had given up like literally two days before that. And they’re like, “Someone called someone and was like, ‘What the hell is going on?'” And I’m like, “Did I cause something?”

Brianne: “Oopsie.”

Krystal: Yeah, that was one of the biggest things that has happened since all this chronic illness stuff is just being denied access to my work. This was a big project that could end up in my dissertation. Like, I was responsible for stuff. I dunno, it could have like, set me back depending on where this project fell in my like, priority list of research projects. And then just like, I can’t stay in lab… like, grad school is just like, you work 24/7, and I can’t do that.

Brianne: Yep. Yep.

Krystal: I can’t skip meals to run an experiment cause then my body gets all shaky and everything gets thrown off. Yeah. Grad school’s a mess when you’re chronically ill. I think that’s the takeaway.

Brianne: Yeah, that’s a very fair takeaway. You’re right, the hours are ridiculous, and there’s like, a presumption that the work is your first priority over your own body. Not just like, “You should care more about the work than your friends,” which is also weird, but yeah. Yeah. It’s intense.

Krystal: Also, people don’t really know how to talk to you, like asking how you are.

Brianne: Yeah.

Krystal: They’re like, “Are you doing better?” I was like, “Define better.”

Brianne: Yeah.

Krystal: And like, I can’t really complain because then they’re going to like, start feeling sorry for you. If you come with a new mobility aid, that’s a whole thing.

Brianne: Yes, it really is. You’re like, “This doesn’t mean anything.” You know, one of my friends who I’ve known a long time and who has definitely had some like, adjustment learning curves around like, chronic illness and stuff cause it is hard to wrap your… like, nobody knows anything about it until they get exposed to it because of other like representation problems, blah, blah, blah. But one of my friends was like, “I’ve realized that you just don’t want to have to explain it to people.” Like, I want people to understand, not that I don’t want them to care, but like, those kinds of questions of like, “Oh, something’s different. Tell me about the difference today.”

Krystal: Sometimes I just want to complain. Like, I think my latest Twitter post was like, “Oh, my rib is out and I have to wear a wrist splint today.” And people were like, “Oh, that sucks.”

Brianne: Yeah.

Krystal: That’s so much better.

Brianne: You just want a calibrated response that’s not like, panicking about things that you’re like, “I can’t panic about this anymore. I don’t have the energy for it.”

Krystal: Right.

Brianne: Take your panic energy elsewhere.

Krystal: I’m just like, “Oh yeah, my ribs do weird things. No need to worry. It’s fine.”

Brianne: Yeah. Yeah. It’s annoying, but it’s not like, an emergency. This one thing isn’t.

Krystal: I think this also trained my partner to like… he like, looks at my face before he freaks out. Cause he’s like, “Okay, you seem okay and calm about it, so I’m not worried.”

Brianne: Yeah. And like, usually that’s a good one. I know my own like, capacity to interpret whether or not something’s in emergency is also not very good, just because I’m like, “Oh, I’ve lived through a lot of things that might’ve been emergencies, and I didn’t know it. So maybe everything is.” But you’re right. People should definitely trust us and our own level of worry. I specifically run into that. My husband will be like, “Wait, describe it again. I would be worried if I was having that experience. I’m concerned that you’re not.” And it’s like, “There’s a medium in here between catastrophizing and medical trauma, I guess.”

Krystal: Right. Yeah. He’s like, “Are you sure you’re okay?” And I’m like, “I promise I’m fine. It’ll eventually go back into place at some point. I don’t know.”

Brianne: Yeah, “I need you to trust me that this one, we just have to wait out.”

Krystal: I also like… so many bad experiences at the ER. This is a universal issue with chronic illness.

Brianne: Have you been since you knew or some before?

Krystal: So I think right before the initial fibro diagnosis, I had like, this huge flare, it was a lot of nerve pain like, chills and dysautonomia and the whole ordeal and like, difficulty breathing, I think. I don’t remember. I went to the ER, and they basically like, gave me a chest x-ray and like, made me go. They’re like, “I dunno what to do with you. It’s probably fine. We’re not even going to bother with your nerve pain. We think you’re anxious.” One of the doctors who did the intake was like, “Oh, you seem really anxious.” And I’m like, “Yeah, because my arm really hurts from nerve pain, and I can’t really breathe.”

Brianne: Yeah. Yeah. You’re like, “That’s not… that’s a normal reaction to this situation.”

Krystal: Right. And then I think they probably gave me a chest x-ray to like, say they did something, and then that was it. And then the second time was… I was weaning off some medication, and I guess I weaned off too quickly. But it also came with a whole bunch of triggering other symptoms. And so I went to the ER, and I’m like, “I think this is what it is, but also I’m having all of these other things. Here’s my medical history.” And like, I was all prepared. It was great. But my… I think it was a physician’s assistant. He didn’t appreciate my preparation. He saw some old test results because it was in the same medical group. And he’s like, “Oh, your, your blood tests look perfectly normal. How do you know you have this EDS thing?” And I’m like, “I went to a doctor, and I showed the nurse who brought me in all of my medical forms, printed out from this doctor. Like, excuse me?” And then he was also like, “You’re listing too many things that are wrong with you. What are you actually concerned about?” And I’m like, “All of them.”

Brianne: Yeah, like, “That they feel related because they ebb and flow together. Like, it’s not possible to… it’s never that just one of them needs to be fixed. It’s this whole weird pattern is not great.”

Krystal: Like, it’s a systemic illness. So if one thing is wrong, everything else is wrong. And I don’t know which one I should be more concerned about hence, I’m in the ER.

Brianne: Yeah. We need like, an entire other pathway to care for that kind of thing where it’s like, “I mean, it’s not an emergency in the sense that, like, I don’t know that I have an acute wound that requires attention. But like, it feels very urgent because I didn’t used to feel this way all the time, and I suddenly do. And I thought that doctors were supposed to care about that, but they often don’t…” also don’t have like, time, frankly. I know this is not just an individual doctor issue. The system is literally not designed for patients like us, and we’re the ones who feel the brunt of that, but oof.

Krystal: Yeah. Yeah, this is why I don’t go to ERs if I don’t have to. I don’t go to urgent care if I don’t have to like…

Brianne: Yeah.

Krystal: The more I can stay away from any type of like, medical place is fantastic.

Brianne: Yeah. Especially now when it’s like…

Krystal: Yeah. Well, especially now I’m like, “I’m not going anywhere near them.”

Brianne: Yeah. And then how… how has that been, to be visiting so many medical facilities this year when obviously infection risk was a big concern for everybody, and like, it is kind of difficult to evaluate risk factor for this EDS, dysautonomia, MCAS trio because people don’t usually include it on risk lists?

Krystal: Right. Yeah. So obviously, I don’t know if I’m high risk. I know that it’s probably not a great idea to get COVID because something’s going to go wrong.

Brianne: Yeah.

Krystal: And then I could possibly trigger something else to happen. Who knows? I have been going to in-person doctor’s visits, but they’re pretty sparingly. They’re like, once every few months, so I don’t think that’s too high of a risk. Sometimes when it was like, peak COVID numbers, I would kind of like, push them back a few weeks. But aside from that, like, it’s probably the same risk as getting takeout for me.

Brianne: Yeah, definitely. And for procedures and stuff, did you find… I guess that was in the summer, so the hospitals were in pretty good shape?

Krystal: Yeah. So that was July and October. So before… obviously before Thanksgiving mess. I don’t know what else to call it, but a mess. Yeah, so it wasn’t that bad. I don’t think… I mean, I think there was reduced capacity, so like, I had to wait a bit, and they were understaffed. So like, it took a little longer to get a bed and all of that.

Brianne: Yeah.

Krystal: It wasn’t the worst.

Brianne: But it like, felt safe?

Krystal: Yeah. It felt safe, but it just sucked because I couldn’t have like, my partner with me for any appointment. I really hate going into appointments by myself because they don’t listen to me as a woman, a woman of color.

Brianne: Yeah.

Krystal: Even if I pretend to be like, scientist grad student, Krystal, like… they’re like, “Oh, you’re a hypochondriac because you know too much.”

Brianne: “You’re using too many fancy words, and the only reason people use fancy words is to lie about their health to doctors.”

Krystal: Right. So I often like, play… I don’t know. I’m trying to kind of think of a different word here.

Brianne: I think like, ignorant or like…

Krystal: Yeah. I undermine my intelligence a bit

Brianne: Yeah.

Krystal: To not seem too, quote, unquote, smart, because then they get weirded out by that. But I also can’t seem too… I don’t know. Like, there’s a balance.

Brianne: Yeah. I think one thing that’s so hard about that, especially to me now, having done so many interviews where people talk about their kind of like, approach to doctors. I think it’s so clear to so many of us that like, “Yeah, being kind of tailored to that person does make a big difference in how they respond to me, and that’s unfortunate.” But then there’s also so much luck involved. Some doctors are just never going to help you because of whatever bias they have, and there’s nothing that you can do to fix it. And it’s like, “Okay, so I have a lot of control and also no control. Good, good.”

Krystal: Yeah, it’s really a crap shoot in what biases to these doctors have? What are they applying to you? What do they think of you when you walk in the room? I’ve had so many doctors, if I’ve come into an appointment with a cane, they’re like, “But you’re so young.”

Brianne: Yeah.

Krystal: That doesn’t mean I don’t need a cane.

Brianne: Yeah. And like, “My goal isn’t to like… not using a cane isn’t a primary goal of mine.”

Krystal: Yeah. Or they kind of like, undermine it. They’re like, “Well, if you think you need it.” And I was like, “If I didn’t think I need it, I wouldn’t have used it.”

Brianne: Yeah. “I’m actually not interested in your opinion on this issue. This isn’t why I came here. Cane’s not about you. It’s about my balance and/or joints and/or injury and/or whatever.”

Krystal: Right.

Brianne: Yeah. Yeah. There’s like, the normal crap about dealing with people who just don’t want to believe you. It’s unreal how widespread it is. And like, you were just talking about the intersecting biases that can really… and they’re… sometimes they’re strange. It’s like, there’s some things that you kind of know to expect bias, like gender or race or class, especially in medicine, and then there’s also this other thing of like, “Well, do you sound like, like you should be using medical terminology because I’ll let it slide if you like, took a nursing class once, and can explain that to me. But like, if I think you learned those words on the internet, I’m not going to listen no matter what else I know about you.”

Krystal: Yeah, it’s so frustrating too as like, a PhD student cause like, that comes with an enormous privilege of like, once I get my degree, I can be like, “I have this degree, so obviously I can research.” But like, that intermediate stage where like, you don’t have a title, and they’re just confused as to why you know all this like, scientific terminology or, “How can you read medical literature?” And I’m like, “Cause I happen to be trained in this stuff.”

Brianne: Yeah.

Krystal: And if you’re not trained, like, you develop these skills really quickly.

Brianne: Cause you have to.

Krystal: Yeah, it’s a necessity.

Brianne: Yeah. I mean, some doctors really are open to people bringing stuff in, which is awesome, and it’s great when it happens. But it’s like, when you bump into a couple of doctors who you can tell, just don’t believe you, because they’ve decided like, first thing, that you have nefarious intentions, like, it’s a really distinct feeling, and it’s obvious. Yes. Okay. Well, since we’re caught up to the present, and I know we’ve covered a lot of the main topics that I wanted to get to, is there anything that you wanted to talk about that we haven’t gotten to today? It’s okay. If the answer Is no.

Krystal: I’m not sure. Oh, I want him to complain really quick that I think it’s frustrating that emotions are so related to your symptoms. I can’t get upset without everything else falling apart. Or even like, talking to you now, just cause it’s a very heightened emotional state. I’m like, shaking a bit, which… it always confuses me. Like, I get hot and shaky and I’m just like, “Why, body, are you doing this?” It’s very frustrating.

Brianne: Yeah. Something that happens for me now… because I definitely get twitchier as I get more emotional, too… is that like, also, if someone’s not used to it… this hasn’t happened much this year, because I haven’t really seen many people, but you know, people who don’t see me all the time. If it’s like, “Oh, we’re having an impassioned conversation, and now it looks like I’m just magically falling apart.” And so people like, get distracted and sometimes stop listening. And it’s like, “If I had been twitching the whole time, I would be upset that you’re being distracted by it all of a sudden and not listening to me, but like, I understand why it would be concerning for someone like physical state to change this much.” It’s just how it is.

Krystal: Yeah. Like, a few times when I’m having a serious conversation with someone, and I’m just like, “I can’t stop like, twitching and the shaking, and ugh, this is just making this conversation so much harder.” Because then you get like, so… you’re like, hyper aware of it also. Because you’re like, “I’m trying to focus on this conversation, but I can feel my body losing its mind, essentially.”

Brianne: Yeah.

Krystal: Yeah. And I don’t know, it’s just very frustrating, but I also learned that’s a thing that happens to some people with chronic illnesses. And I was like, “Oh, it’s not just me.”

Brianne: Yeah. I think it makes sense to me now in the context of like, dysautonomia is your autonomic nervous system is disrupted and it’s like, your nervous system is… when you’re crying, that’s like, not… crying is an intentional thing. I know that we can choose to cry, but like, it’s also a body reflex to intense emotional… whatever. And so it makes sense that like, there would be other crossed wires in between, but it’s still like… especially after maybe a lifetime of having a lot of people imply that all of the pain was emotional. It’s really difficult to be like, “Okay, well it’s not caused by it, but it is triggered by it. And those aren’t the same.”

Krystal: Right. Yeah. Speaking of dysautonomia, I actually didn’t learn about it until I researched stuff and probably until Twitter. Cause like, when I got diagnosed with fibro. They were just like, “Fibro is pain, and so you just feel a lot of pain.” But they don’t like talk about… or my rheumatologists didn’t talk about any of the nervous system stuff that can come with it and also with EDS. I was just like, “Why is my nervous system acting up? Like, this doesn’t match with fibro.” And then I learned about the word dysautonomia and how it can be related to like a billion different things. And I’m like, “Why did no doctors tell me about this?” it’s quite frustrating.

Brianne: Yeah. Dysautonomia and hypermobility… they’re not… they could be caused by many different things. They’re not like, 100% meaningful. But just like, if you’re diagnosing someone with something like fibromyalgia, which is a symptom cluster, you should be checking if they have all of these symptom clusters, that usually come along with it. Everybody who gets diagnosed with fibro should be screened for hypermobility and dysautonomia, not because everybody has it, but because everyone that has it deserves to get it identified.

Krystal: Right. And then like, when you don’t know the name of something, it’s so much scarier.

Brianne: Yeah.

Krystal: I’m like, “I feel like I’m going to pass out and I get these hot flashes, and oh my God, do I have, like… I don’t know, something scary, like, a brain tumor or something?”

Brianne: Yeah.

Krystal: Or like, something that is like, terminal. These are things that I like, feared early on. Cause I was like, “I don’t have words to describe what this is, and I don’t know if other people have it. And what’s the outlook?”

Brianne: Yeah.

Krystal: Hence why Twitter’s so amazing.

Brianne: Yeah, no, Twitter is incredible for this. The internet in general. It’s amazing to just think like, how many people have found the better words and treatment options and probably diagnoses just from talking to other patients on the internet. Because all of a sudden, our only point of reference isn’t just like, a person who’s never felt what we’re feeling.

Krystal: Right. Cause like, it was just me. Now I know disabled and chronically ill people, both in my life and online, but like, originally I didn’t. I had no exposure to chronic illness or disability before anything. And I was just like, “My body is acting up. It’s scary. Am I going to die?” Immediate thoughts.

Brianne: Yeah. And then it’s like a, “How do I prioritize those? How do I talk about it? How do I get people to care that it’s a problem without being too upset, but also being upset enough?” It’s weird how… I feel like having to interact with other people around something that’s so scary and life altering can cause it to filter weird, too. That’s how it is for me.

Krystal: Yeah. I also feel like I just relate to non-disabled non chronically ill people a lot differently now. Maybe it’s just life experience at this point, but we’re on like, a different plane, I guess. I’m using hand movements, but no one can like, see what I’m doing. It’s fine.

Brianne: Yeah. No, it’s fine. But it is, there’s so many things about like, just living in a body that you have to pay attention to in this way, that if you’ve never paid attention to your body in this way, you wouldn’t have cause to be aware of kind of. And I’m not saying that like, chronically ill people or disabled people are the only people who know about their body, I’m just saying that like, the way that we have to know about our bodies is really specific. And I sometimes feel like… it impacts everything, and so trying to interact with other people, you’re like, “Oh God, what do I… what am I… what can I say that I know they’ll understand? What do I have to explain if I want to communicate these like really basic… things that now I feel really basic?” Like, there’s a whole vocabulary barrier that I didn’t know existed when I didn’t know about it, I guess.

Krystal: Right. And it’s like, “Who can I confide in about this? Who’s not going to freak out if I say… I don’t know… ‘Something subluxed today, and it hurts.’ Who’s not going to give you that weird pity look?” I hate the pity look.

Brianne: Yeah.

Krystal: I rolled up in a wheelchair once for like, an outing, and the look of someone in the group was just like, “Ooh, I don’t like you right now.”

Brianne: Yeah. You’re like, “I need you to just work on this somewhere else.”

Krystal: “I can’t handle your emotions and my emotions at the same time. Please leave.”

Brianne: Yeah. Yeah. Especially, I think, mobility aids are one where people have mixed associations with them because they’re associated understandably with like, acute injury, and if that’s your only… I know ableism is a big part of this, and I’m not pretending that that’s not a part of it. But there’s also this extra level where it’s like, if you’ve only ever used crutches or a cane or a chair, when you were like, having your own emergency, I think in addition to all of the bullshit that people project about how terrible it must be to need a mobility aid, which is like, in the culture and everywhere. I think people are also like, “Oh God, you must want to stop using that because when I was using it, I wanted to stop.” And it’s like, “Yeah. But when you were using it, you like, broke your leg. I’m using it because my pelvis is unstable. Like, we’re just not the same. It’s fine.”

Krystal: Right. I think people also project. Like, if they have family members who have dealt with… I dunno more… like, acute illnesses, but serious illnesses. And then they’re like, “Oh, you must feel horrible about your life because now you’re dealing with this thing.” And I’m like, “I’m not bad. Like, I’m fine for the most part. Like, I go to therapy, but like. That’s to deal with everything else that comes with chronic illness,” like, all the other stuff, but like, yeah. I feel like I’ve had to balance a lot of people’s emotions since… I dunno, everything started, and it’s quite frustrating, especially when they’re older than me. I think that that also sucks just being younger and chronically ill, like, adults that are older than you don’t know how to relate or deal with that, and they have like, their own existential crisis when they meet you. Cause they’re like, “But I’m old and healthy, but you’re young and not. I don’t know how these two things match.”

Brianne: Yeah. Like, “I don’t know what I owe you or like, what tone I’m supposed to approach you with.” And it’s like, “Maybe just don’t start by thinking about this. Just start by thinking about the things that we would talk about normally.”

Krystal: Right. Like, “I’m just the human being. Please treat me as such. I am not your therapist. I’m also not like, the cause of your existential crisis. It’s fine.”

Brianne: Yeah. Yeah. Like, in that circumstance or with peers, when it’s like, “If this is the first time that you’re realizing that somebody can become chronically ill, I’m gonna need you to work through that on your own time and not with me. Thank you.”

Krystal: Right. Yeah, there was ugh, I don’t remember the name of the book, but there was this book that basically described this. I can look it up while I’m talking. It basically describes this phenomenon of like, when you’re young and chronically ill that people just can’t… their mind can’t wrap around it. It’s called Invisible by Michele Hirsch. Invisible: How Young Women with Serious Health Issues Navigate Work Relationships and the Pressure to Seem Just Fine. And I highly recommend it cause like, I think maybe they have MCAS. They have MCAS and other like, different chronic illnesses, and they’re just talking about how… basically what I just mentioned, this existential crisis that young people and older people have when they meet someone who is not, quote, unquote, healthy and how they like, suddenly realize their health is finite. It’s not always going to be there, and it may not be there for the expected amount of time.

Brianne: Yeah.

Krystal: Yeah. I need to read that book cause I was in a weird space when I read it the first time, but it was really helpful to like, understand how I was interacting with people.

Brianne: Yeah, yeah. To like, know that it was a pattern that you weren’t… it’s like, at the beginning, you’re like… not you, anybody, but it’s like, “I feel really hurt or frustrated or terrible, by the way people are interacting with me. And because I’ve never been in this position before, and I’ve never seen it represented in media, I don’t even know how to describe the dynamic.” And it makes such a difference to just be like, “Oh, this is a thing that happens. Other people experience this. This person probably behaves this way around other people, which is too bad, but also means it’s not personal.”

Krystal: Yeah. Yeah. I think society just doesn’t know how to deal with… They know how to deal with acute illnesses, terminal illnesses, but the in-between is just a mystery and there’s no representation and there’s no manual as to how to like, navigate the world as a chronically ill person.

Brianne: Yeah. It’s all missing.

Krystal: Yeah, we just need more information.

Brianne: Yeah. I wonder, like… not to get too either optimistic or pessimistic about it, but I really do wonder how long COVID is going to change, just representation for this community, because we know that so many people who contract COVID just are going to end up with complications of a connective tissue/mast cell disorder, because so many people are undiagnosed until something like this happens. And like the visibility of synchronicity, I guess, even though it’s happened before, but it just feels like it might change some representation, something, but it might make it worse, I guess is the other problem.

Krystal: Yeah. I don’t know where I fall on long COVID yet. The way that my partner and I operate is like, not only do we not want to get other people sick, if we get COVID like, we don’t also want to become like… well, me, more chronically ill and him, chronically ill.

Brianne: Right.

Krystal: We’re fine with our health levels right now.

Brianne: Yeah.

Krystal: I don’t know. It’s heartbreaking, but I don’t know if society is going to shift its views yet.

Brianne: Yeah, I don’t know that it will like, transform other people. I wonder if there’s like, a critical mass that will create some kind of self-representation or like… that’s what I’m really curious about. I definitely think a lot more people are just getting the same gaslighting BS that most of us have gotten on independent timelines for years, unfortunately, but they have the internet.

Krystal: Yeah, I think… I’ve definitely seen a few articles talking about the gaslighting, which I think is a good step in the right direction. Like, it sucks that it’s happening, but like, now it’s reaching more like, mainstream media outlets, and that’s really great. Speaking of long COVID, I also find it funny that when people think about getting COVID, they’re like, “I don’t want to get sick.” But like, they don’t think about the long-term effects that could happen. And I’m like, “It’s not just, you get sick and like, you know, the immediate, like horrible stuff happens. You can get kind of sick and then things happen later.”

Brianne: Yeah. Yeah. It’s one of these things where it’s like, some stuff that I think seems really obvious to people in like, chronic illness communities, disability communities, mostly about that are like, “Okay, well this is a viral infection, and we know that post viral illness is like… a kind of poorly defined segment of the population is very vulnerable to lifelong disability from post viral illness. So we know, and we’ve been thinking and talking about that this whole time.” And it just like, doesn’t permeate the consciousness of people who think that it’s either you’re healthy or you’re dead. I guess

Krystal: Right. Like, even before long COVID became a big conversation, like, just watching the ME/CFS community speak about it… and I was like, “Oh, this is a thing that I probably should like. Start thinking about.” And like, I told my partner. We already, like, were taking good care and like, you know, making sure we were social distancing, but like, it was like, “Oh, this is really like, important to not get us sick, but also not get other sick cause they might have worse outcomes,” kind of thing. But like, I feel like, that doesn’t resonate with a lot of people.

Brianne: Yeah. It’s like, it hasn’t even landed. There has been media on it. I know there has, but it’s like, people think like, “Long COVID, huh? Has it?” I feel like, to my mom, I’ll be like, “Yeah, a lot of people are experiencing this. Like, high percentages.” And people will be like, “Oh really? I haven’t heard about that.”

Krystal: Yeah, I think a bad thing about how the medical system talks about some chronic illnesses is that they’re like, rare or it’s like, a low probability. Cause I know when I was first thinking about EDS, I was like, “Oh, but EDS is rare. And so like, why would it happen to me? And why are there so many people on the internet that have it?” Or like, also fibro I’m like, “It’s kind of common, but like, not common enough where I’m like, ‘Why me?'” kind of thing, like, “How could this have happened to me?” And I feel like there’s that disconnect of like… it’s not small numbers. I don’t really know how to put that into words. difficult.

Brianne: Yeah. Yeah. And then like, most people don’t make a risk assessments about their health every day. So, most people aren’t constantly thinking about like, “Is this going to make my long-term health better or worse?” like, on a day-to-day basis, especially the worse part, I guess. And I think like, especially with connective tissue disorders where the day-to-day stuff for a lot of people is extremely manageable, and it’s the complications that could happen at any time and are extremely disruptive, and that’s kind of the problem.

Krystal: Right. Yeah, I think it’s helpful for us, who need to make calculations every day of like, “What can I not do to make sure that I like, keep my baseline?” Cause like, there’s always that fear of like, if you flare up, that your baseline is going to shift again, and that’s a horrible feeling. So I don’t want to do that. So I’m just going to be really, really careful and like, do all these calculations of like, “Okay, which mobility aids do I need? How long can I stay upright? How long can I stay in the sun? Where’s the nearest AC building?”

Brianne: Yeah. Yeah. And I think like, when you’re used to thinking about the world that way, it’s like, “Oh God. Now the world’s put another new limitation of like, stay more than six feet away from everybody, wear a mask if you ever leave the house, just don’t leave the house if you can help it.” And we’re like… so many of us have just been like, “Yeah, this makes sense. It makes as much sense as anything else I’ve ever had to completely turn my life upside down for.” But other… like, people who haven’t had to turn their life upside down, maybe many times, to prevent the worst case scenario are like, “I’ll just risk the worst case scenario.” We’re like, “Don’t do that. Stop risking it.”

Krystal: Right. It’s not… it’s not worth it at all.

Brianne: Yeah.

Krystal: Yeah.

Brianne: Well, 2020! It’s almost over.

Krystal: Yeah. Hopefully. Hopefully things come, and vaccines are tested on people that represent us.

Brianne: With people with mast cell disorders so that we know who can take the risk and who needs other people to take the risk for them. Yeah. Well, and we’ll see where that’s at when this episode comes out, but yes, here’s hoping for a safer outside world soon. This year has been so freaking hard.

Krystal: Yeah.

Brianne: I think also another thing that’s been so interesting doing these interviews, because I have one more after this, but so I’ve done like 10. And so many of us are like, “Yes, this… everything that’s happening has impacted me, and I am so worried about our communities,” and like, all of those things. Nobody is not sensitive to that. And also, most of us have still had our own standard, personal health dramas that are like, pretty all consuming a lot of the time.

Krystal: Yeah. I keep telling myself, “Don’t do anything that will put you in the ER or urgent care.”

Brianne: Yeah. That’s your job.

Krystal: “Body, your job is to be like, baseline normal.”

Brianne: Yeah. Protect as much as possible, as much as that’s ever in any of our control.

Krystal: Right.

Brianne: Well, thank you so much for taking the time and the energy to talk to me today. I know that it is not free.

Krystal: Yeah, it’s great. I actually really enjoy talking about chronic illness stuff to people because it’s something that I don’t get to do very often in like, real life.

Brianne: Yeah.

Krystal: So yeah, this is great. I really loved it.

Brianne: Yay. Thank you.

[guitar riff]

Drew: Thank you for listening to episode 76 of No End In Sight! You can find Krystal on Twitter @caffeinatedkrys. You can find me on Twitter @fibrofuckboy and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on Twitter and Instagram @bennessb, and you can find many more conversations about chronic illness on Twitter @RTsFromTheVoid. And don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple Podcasts. Thanks for listening!

The post 76 – Krystal appeared first on No End In Sight.

Kayle Hill talks arthritis, medical trauma, and hypermobility.

Brianne: I’m Brianne Benness, and this is No End In Sight, a podcast about life with chronic illness.

[guitar riff]

Drew: Hey, this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, We’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight.

[guitar riff]

Brianne: Okay. Well, I like to start just by asking people, how has your health as a kid?

Kayle: Not good. It was never good. As early as I can remember, I’ve always had a chronic illness. My relationship to it has definitely changed over time because I’ve acquired more and more and more chronic illnesses, but yeah. It was never really that great, especially because my major disease back then was rheumatoid arthritis, and I was on methotrexate, which is a chemotherapy drug, and I was just so sick all the time.

Brianne: How was that diagnosed? Like, how did you end up getting diagnosed with juvenile RA basically, right?

Kayle: Yeah. So, I know this only from the stories that my mom has told me, but basically, it was my left ankle to begin with. And it was just red and swollen. And she’s a nurse, so even as I was growing up, she was always like, “Okay, let’s just wait. Let’s not freak out and go to the doctor.”

Brianne: Presumably from pain, I get that it’s anecdotal. Yeah.

Kayle: And so she took me to the pediatrician. And he took some images, and he was like, “This is not good.”

Brianne: “There is damage.”

Kayle: Yeah. “There’s damage, and it’s not the kind of damage that can heal.” So I was brought over to Boston children’s hospital, and there’s a whole side story about the first rheumatologist we saw who was apparently absolutely terrible. But then the head of the rheumatology department… my case kind of got pushed up to him, and I was with him until I was 18.

Brianne: Yeah.

Kayle: From like, one year old to 18 years old.

Brianne: So like, as long as you can remember, basically.

Kayle: Yeah, yeah. He was like, the doctor. We practically worshiped him growing up because he would just… you know, he was more of a primary care doctor to me than my own primary care was, but also my feelings about him have changed over the years as well.

Brianne: I believe that that could happen. Okay. So yeah, it was always kind of a part of it, and you’d been in treatment this whole time, as you said. So with methotrexate, which is obviously not a gentle medication, as far as these things go, but if you’ve always been on it, you’ve probably always kind of been aware of the trade-off. Do you feel like that was something that you thought about at all? Like, what was medication side effect versus what was symptom, I guess.

Kayle: Yeah. Yes. Sort of.

Brianne: Yeah, it would be different. I would think

Kayle: Yeah. And it’s something that I’ve almost had to figure out in therapy a little bit because I just… growing up I always had chronic pain, but the severe nausea and just feeling lethargic all the time. And you know, I really couldn’t keep any food down. I couldn’t go play outside with my friends. My immune system was next to nothing, so I would… I was in the hospital when I was very little for like, severe bronchitis, all that jazz. And I always thought… cause I just self analyze a lot, so even thinking back like, I definitely… in therapy right now, we’re working on like, trust issues with my parents giving me this medicine as a child. And even though I know logically, it was the thing that they had to do, it still felt like a betrayal because I definitely associated all of my negative symptoms with that injection.

Brianne: Right. And of course, I’m sure as a physical experience that it felt that way because that was the cycle. Yeah. I feel like something that’s so present for me, and has been for a long time, is this thing of like, they just didn’t have the same information that we have now. And that’s… there are so many complicated feelings in that. I feel like I’m now having this conversation more with people, especially as it relates to, spoiler alert, hypermobility that like, the people who, if they had known might’ve made different decisions, often just didn’t know. And I think that kind of translates to so many healthcare decisions that our parents have to make where it’s like, “Well, do I think they were acting in good faith? Yes, I do. Does that impact how hard it was to live through it? No, not really.” Like, it’s a lot to hold

Kayle: Yeah. Yeah, definitely those feelings got a lot more intense with my surgery. Yeah.

Brianne: Okay. So that was kind of the status quo for quite a while, was all the things that you’re describing, both the actual chronic pain and then the medication and the side effects and the medication and the complicated interplay of those experiences. And so, at some point something happened and did something happen suddenly or gradually would you say now?

Kayle: Physiologically gradually, but in my life, suddenly.

Brianne: Right. Yeah. It’s interesting how often that happens.

Kayle: Yeah. Yeah, I do want to back up for one second, cause I want to preface… later on I’m sure I’ll talk about POTS. When I was like seven years old, I had an incident where my heart rate shot up for no reason, had to see a cardiologist, he was like, “Pfft, I don’t know what’s wrong with you.” And that was just like, another thing that my parents were like, “This is odd.”

Brianne: Like a blip.

Kayle: It was a blip, yeah. But then, fast forward a few more years. I was 12, and I failed my scoliosis screening at school, and they were like, “You know, it looks really mild. It’s probably not a big deal, but you should go get x-rays to check it out.” And I did at my primary care, and when she came back, she looked horrified.

Brianne: Always what you’re hoping for.

Kayle: Yeah. It was a lot worse than anybody had anticipated two major, major curves, and they compensated for each other. So for the most part, I looked straight. I didn’t bend. I actually bend more to one side now after my surgery than I did before cause they could only fix one of the curves. But yeah, I had zero pain in my back. I had the joint pain still, but I had zero back pain and zero symptoms of scoliosis, and they were like, “It’s really, really bad. Like, you have to get a back brace or surgery, like now.”

Brianne: Yeah.

Kayle: So.

Brianne: Something that is so loud about that now… about just being told something like that, is like, I feel like if I didn’t know anything about chronic illness, so like… I don’t know, five years ago for me, if someone was like, “Hey, we found out this structural thing about your body. It causes a ton of pain. If you’re not in that much pain right now, then you’re lucky because if we intervene, we can prevent it from escalating to the point that it will get to.” But like, that entire logical premise is faulty since it didn’t check in with how… like, it didn’t confirm that your experience aligned with that interpretation. Did that make sense? It happens with other stuff too. Like, it’s a pattern.

Kayle: Yeah. Yeah. It was definitely… that whole experience is where my PTSD diagnosis comes into play, and a lot of it is from feeling that lack of control of my own fate, especially because it went so horribly wrong.

Brianne: As we will get to.

Kayle: Yeah. And you know, my mom still holds a lot of guilt about it. She… of course, she didn’t do anything, but of course, with hindsight, she’s like, “But If I knew, I could have done list, I could have done that.”

Brianne: “If I had known everything I know now…” Hardest statement ever. Yeah.

Kayle: Yeah. Yeah.

Brianne: Okay. So at the time they were like, “Your imaging tells us that this is actually a really big problem and so either a brace or surgery are your main options, because like, the scope of this problem is severe, and intervention is urgent,” kind of, was the message that you guys got. Yeah. However that happened, I’m sure you’ve thought about it a lot, so that doesn’t… the details don’t matter as much, but ultimately you decided to get surgery. Did you decide kind of quickly or did you go through bracing first?

Kayle: I did go through bracing first, and it was miserable.

Brianne: Like, it was painful?

Kayle: It wasn’t even super painful. It was just really uncomfortable. It was clunky. It took up my whole torso and then some, so like, when I sat down on a chair, you could feel it clang against the bottom of the chair. I had to get like, an entirely new wardrobe, so it could fit over it. It’s not the type of wardrobe shopping that I enjoyed, to be honest.

Brianne: Did everybody ask you if you had read Dina by Judy Blume.

Kayle: No.

Brianne: You’re younger than me, so this isn’t… I’m young for Judy Blume. Anyway, the lead, she wears a back brace. I don’t remember… It might be a terrible book in other ways now. Like, it might not have aged well in a variety of ways, but it’s a dated cultural reference from probably the eighties. So that’s great. Sorry for the diversion. Okay. You’re wearing it. It was a hassle. My cultural reference for that is Dina.

Kayle: Mind you. I was in eighth grade when I was wearing this back brace. I was a child.

Brianne: Yeah.

Kayle: And it was… I don’t even remember how long. It must’ve only been a few months. I went back for a checkup, and they took another x-ray and they were like, “It’s getting worse. The curve is getting worse. So the brace isn’t working, so we have to do surgery.” So ultimately the decision was kind of made for me because before that, when I was day to day with the brace, I was like, kind of fantasizing about having surgery because they told me I’d have to wear this brace for two plus years for like, 20 hours a day.

Brianne: Yeah. And you were like, “It sounds like the easy way.” Not the easy way… but like, yeah.

Kayle: But yeah, it sounded like the easy way. Especially cause back then, other than the arthritis, everyone was like, “You’re young. You’re healthy. You’ll heal well.” You know, I was like, “This sounds great. I can just go in…” I mean, of course I was terrified even thinking this, but I was like, “I can just go in, get it done. I’ll be recovered in six weeks, and I can move on.”

Brianne: Some people probably have retained this, I know you’ve retained it because we’ve kind of talked about this before, but I just get really faint really easily. So I might participate strangely in this conversation, but I’m going to just tip my headphones so that I have the option of giving my ears, a break if I need to. So as much, or as little you want to say about it? Definitely like, I think kind of the technical explanation, probably people definitely appreciate, and I’m just… my like, syncope triggers are all over the place. So they’re… It’s impossible to tell someone how to work around them because then you’ll be doing it and I’ll be like, “No, not that! Don’t compare your spine to a banana!” Anyway. Okay. So that’s just the warning if I get weird.

Kayle: All right. I’m prepared.

Brianne: Okay. So, things appear to be progressing quickly, surgery is highly advised, like, now’s the time.

Kayle: Yeah. Yeah. So we scheduled the surgery for that summer, so I had a few months to finish out eighth grade with a bang and get ready for surgery. My parents even took me to see Lady Gaga in concert for the first time like, a few weeks before my surgery.

Brianne: Yeah.

Kayle: So they tried really hard to make sure I had like, good memories tied to it. Yeah. I don’t, I don’t know what you want me to say about it. The day of the surgery came.

Brianne: So what was the intention of the surgery, one? What is their intention when they go in to fix scoliosis? What is the like, logic of what they’re doing? As much as you want to talk about it cause I also don’t want to make you like, dive into the worst parts.

Kayle: Yeah. I guess the most gentle way to put it is they try to straighten out your spine with hardware reinforcements.

Brianne: Okay. Yeah. So that’s what they are intending to do. And how were you like, immediately after the procedure itself? Or how did… what was your experience? As much as you would like to talk… caveat, caveat, caveat. I want to move through without getting too into any of the things that we could get too into.

Kayle: Yeah, so it was terrible.

Brianne: So like immediately?

Kayle: Immediately. It was absolutely terrible. Yeah. They originally gave me morphine, and I ultimately had an adverse reaction to it. It gave me like, the worst migraine I had ever experienced in my life and did not touch my back pain at all. Just to give everybody kind of an idea of how much I was stretched, over the course of a nine hour surgery, I grew from five foot, two inches to five foot, six inches.

Brianne: That’s a lot. Yes.

Kayle: It’s a lot. So my center of gravity was off. I lost a lot of things that should not be lost, and it made recovery very, very difficult. It’s eight years later. I’m still not… Oh my God. Has it been 10 years? 10 years later.

Brianne: Was it just the 10 year anniversary? Yeah.

Kayle: Yeah. Yeah. It’s been 10 years. Okay.

Brianne: Time.

Kayle: It was eight years between my two surgeries. That’s… yeah. Because what ultimately hit the recovery very hard was that the hardware broke, so it just didn’t heal properly.

Brianne: Yeah. And so, it didn’t make your life more comfortable, to understate it just really incredibly, as it was intended to.

Kayle: It completely, you know, my PTSD brain still gets in there, and I’m like, “It just completely ruined my life.” I had difficulty finishing high school. I really kind of got depressed because I just felt so shitty all the time. I was on hardcore medications while going to school, all in honors classes for the first time because it was high school. And it just… that’s really when I started to like… my relationship with my health got a lot less healthy.

Brianne: Yeah. A lot more… even more fraught. Okay. So that would have been a lot in all kinds of ways, as you have said. And of course like, your pain would have been much more, the drugs are interfering in all of these ways that you just described. Were you having… do you, in retrospect think that you had any other drug reactions during that time? Like, do you think that there was a component about that going on?

Kayle: Well, I will say that my liver has been not the happiest camper throughout my life, and this is something… I actually forget about this part sometimes. After my surgery, they actually had to stop all of my arthritis medications because my liver enzymes started rising, and my team felt like it was more pertinent for me to have my pain under control at that time. So they kept the pain medicine, dropped the arthritis medications, but then I started getting the arthritis fatigue.

Brianne: Right. Yeah. So all of a sudden like, you’d already been… I don’t know if managing is the right word when you’ve been literally managing it your whole life, but you’ve already been managing this one thing and all of the kind of cognitive overhead that it takes up, even if you’re not making all the administrative decisions. And now you have like many more layers of that, of like, thinking about how medication impacts you, thinking about how what’s going on in your body impacts you. Paying attention, ignoring it. Like, it takes up of space. Okay. And so that obviously was hard. Do you feel like it was kind of stable for awhile, if that makes sense? Like, you were… I don’t know how you would have even phrased this. I’m not trying to like, miscategorize it, but like, you were recovering from surgery at one point. Was there a time and a transition from thinking of it as like, “I’m recovering from surgery and it’s hard,” to like, “This might be hard for a lot longer?” I guess if you found out that the hardware was broken, that probably really sped up that process.

Kayle: Yeah. I think that… I don’t know. It was definitely like… I had a bad feeling for a while. Even back then, we entertained the idea of like, “I wonder if we could even sue for…” the word’s escaping me, Brianne. What’s the… malpractice!

Brianne: Malpractice, medical negligence. Yes.

Kayle: Yeah. Because I kept going back to my surgeon and saying, “I have back pain every day. I’m missing half of school. My grades are dropping. I just lie in bed all the time. Like, I can’t do this.” And he would just kind of be like, “I don’t know what to tell you.” And he would just leave it there. He would try telling me that I’m having some sort of inflammatory reaction because of my arthritis, but my rheumatologist would be like, “He has no idea what he’s talking about. No.”

Brianne: That doesn’t make sense.

Kayle: Yeah.

Brianne: One thing that’s so hard about that context too, is like, realizing that systemically, that doctor is probably at that point, more worried about covering his own liability than he is about just helping to find the root of the problem as quickly as possible, and like, this is a problem for so many reasons. I don’t think that it’s excusable in any way, but like, the system is set up to prioritize that. So that I imagine that doctors who like, really care and feel deeply about this, also don’t have like, legally covered ways to support people. And that’s such a big, huge problem because like, bodies do weird things sometimes, in general. I’m not saying that as like, what I would want to say to your surgeon specifically.

Kayle: Yeah. At this point in my life too, I still tried. I was starting to lose faith in doctors, but I still… I wasn’t quite at the point where I was like, “I don’t trust any of you anymore.” So I would take what my surgeon said with a grain of salt and be like, “Maybe it is just my immune system being weird.”

Brianne: Yeah. “Maybe my arthritis is related to the injury in some mysterious way that we’ll learn about later.”

Kayle: And that’s kind of every like, weird blip that I had my entire life, that was kind of the go-to answer. Like, “You have rheumatoid arthritis and your immune system is wild.”

Brianne: “It’s wacky!”

Kayle: Yeah. That’s when I started to think like, maybe, you know, “If I’m going to have arthritis for the rest of my life and this is from my arthritis, maybe I will have back pain for the rest of my life.”

Brianne: Yeah.

Kayle: And I started to think about it a little bit, but still hold hope. And then finally three years after my surgery, he took an x-ray and saw the broken hardware. And I think that’s kind of where I lost it.

Brianne: Yeah.

Kayle: Yeah.

Brianne: Yeah. Not to like, project onto your experience, but it’s a really classic example of there being a mechanical problem that you were feeling and verbalizing over and over again, and nobody would look. And it’s like, usually… not that this is a good thing, usually it’s not that like, on the nose of a metaphor.

Kayle: Right!

Brianne: Yeah.

Kayle: Right?

Brianne: Yeah.

Kayle: It was just amazing to me and to my parents that it took that long. We were happy to finally have a little bit of closure, so to speak because you know, the story continues. But in that moment we felt like we had some closure. Like, this just happened and, you know, shit happens.

Brianne: Right.

Kayle: And my parents and I continued on for years after that, just like, “Kayle just has like, the worst luck when it comes to health stuff, and these are all unrelated. And it just kind of sucks, and it is what it is.”

Brianne: Yeah. Yeah. Which I think is an alarmingly common outlook. Just like, “What a weird series of coincidences that you would have all of these interesting unrelated experiences.” Yeah. And it’s like, “Just make peace with it.” Now that you know, sort of, you can kind of… one thing that I really relate to about that idea that I’m thinking through again right now is like, when there are individual incidents kind of, like, after the incident, you’re like, “Okay, I’m back to stability, and I think of that as an isolated incident. So I can focus on framing my life that way.” And that kind of acceptance, when you expect like, whatever baseline you have to be your continuing baseline forever. Like, “All those blips are in the rear view mirror. No blips in the future. Why would I expect that?” That’s a really specific feeling, is what I’m trying to say, that I recognize now. It’s weird in retrospect.

Kayle: Yeah. It’s… also the hindsight… with therapy, I just also realized that like, I was deep into like, PTSD at this time. I still would have panic attacks. I would have nightmares about that surgery specifically. And I… it was probably amplified too, that I was still carrying some prolonged trauma from the methotrexate. I couldn’t look at the color yellow for close to 10 years because the medication was yellow, and I’d look at the color yellow and I, yeah… I couldn’t.

Brianne: Yeah, your body recoils, our nervous systems are freaking complicated.

Kayle: So it was just a lot, and part of me definitely shut down at that point and just like, went into survival mode.

Brianne: Yeah.

Kayle: Yeah.

Brianne: Yeah. I think like medical PTSD, surgical especially, but medical PTSD in general, it seems pretty clear, is so under diagnosed, under acknowledged. This is why I’m like, always thinking about time travel jokingly, because it’s like, we need so many better resources for people 10 years ago, 20 years ago. And also people now, obviously it’s still worth working on. But like, yeah, so many things about it are like, poorly contextualized by people who haven’t experienced it and have no way to be like, “Oh yeah, some of this shit is really hard to place in your head, and that is traumatizing as hell.” Like, how do we make that a normal part of conversation? You don’t have to have the answer though.

Kayle: You made me think about the one time I did like a partial hospitalization and intensive outpatient program, and that’s where I was sort of officially given the PTSD label. And I remember being on a phone call with one of the counselors and my father… because my mom was always more involved in my medical stuff because she was a nurse and my dad… he was there, but he never really understood the gravity of it, I don’t think. And he definitely is not the most informed when it comes to mental health. So he was just kind of like, “Isn’t PTSD for people who go to war? Like I don’t… I don’t really understand how this works.” Yeah. It was… it’s a learning process, I think is what I’m trying to get at. Understanding that like, it’s okay to like, recognize these things as being traumatic because they are traumatic.

Brianne: Yeah. And there’s like… there’s something so true about that, that we kind of… or for so many of us, our initial education about PTSD is through the media, and it’s about veterans. And yes, absolutely, war is a very traumatizing experience. But like, our bodies and our nervous systems don’t always know the difference between types of threats, for one thing. So like, it’s possible to be traumatized in a situation that may not have actually been threatening, which does not relate medical trauma, and also like, many other experiences are actually life-threatening in ways that kind of never gets tracked. And of course that would be traumatic, but we don’t learn to think about it that way. It’s hard. This thing that you’re talking about right now is a big process of like, “But I’m not a soldier! Could this really be serious enough that I should be treating it like the serious thing that it is?” It can be an overwhelming process too, kind of. By the time that you got the diagnosis, were you like, “Yes! A diagnosis!” or were you like, “Oh boy, I have a big paradigm shift coming to kind of integrate this into my understanding?”

Kayle: I was kind of relieved. I had been diagnosed with anxiety, just generalized anxiety for years before that, and while I do have generalized anxiety, I could always tell that it stemmed from something, and being in treatment for PTSD for the past… God, two years, three years? You know, you really break it down into those core beliefs of losing control, literally feeling like I’m going to die after the surgery, distrust, not trusting other people, not trusting my own decisions because I had the narrative in my mind that if I was better with my back brace, I would never have had to get the surgery. And that colors just everything.

Brianne: Yeah.

Kayle: Yeah.

Brianne: Yeah. I feel like hyper… hypermobility, whisper cause we haven’t gotten there yet. There’s such a strong theme of like, so many people can look back at all kinds of choices and like, they could kind of be recreational or they could be medical or they could be whatever, and be like, “Oh, I now understand why that was a bad choice, but that doesn’t actually give me a lot.” This is the time travel thing. “That doesn’t give me a lot of agency.” Like, that analysis is sometimes helpful, but sometimes like, adds to the complexity of letting yourself off the hook a little bit, if that makes sense.

Kayle: Right, Yeah. It was definitely difficult. Actually what I was just going to say kind of transitions into hypermobility, so might as well just segue there. I was also hypermobile my entire life.

Brianne: As it turns out.

Kayle: And I remember the rheumatologist… it was on my medical records since day one, hypermobility. All of my clinical notes, he mentioned that I’m hypermobile, everything starting in 1996.

Brianne: Yeah.

Kayle: And ultimately, after I left high school and I went to college, different new environment. And I met somebody there who had EDS, Ehlers-Danlos syndrome. And what was really weird about it was that I also knew somebody in high school with EDS, and I was like, “Oh my God. Like, I know somebody else who has that.” And we would talk a lot, and I would relate to their symptoms a lot, but Brianne, even then, I was like, “Really weird how much I relate to these things.”

Brianne: “We have so much in common! People with RA, people with EDS. That’s what it is.”

Kayle: It’s so funny thinking back about it. And you know, I’m actually one of those rare people who had a doctor say, “Have you ever looked into EDS?”

Brianne: That’s unusual.

Kayle: Yeah. It’s really unusual. I had another fluke in my blood work, another blip, for some clotting factor. So many blips in my blood work that will come back normal like, a week later. Long story short, had to see a hematologist, a blood doctor, and just going over my medical history with her, she was like, “Wait a second, like a lot of these symptoms…” in fact, I’m not even sure… I don’t think we even got to the hypermobility part yet. And she just asked me like, “Are you hypermobile by any chance?”

Brianne: Yeah. “You have a lot of these other complications that tend to orbit this one thing. Interesting. Interesting. Yeah.”

Kayle: Yeah. I was like, ” Oh my God,” because even then like, I knew two people by this point who had it. I knew what it was, and I hadn’t really entered the disability community on Twitter yet, or anything, very much on my own.

Brianne: Can I pause that for just a second to did you have… up until you found the disability community, was there any media representation that you did find that resonated with you? It’s okay if the answer is no.

Kayle: So, yes, but also like, recognizing that they’re not good.

Brianne: Yeah. Yeah, I know, totally understand there. I just watched Everything’s Gonna Be Okay, literally this week, which has autism recognition, which I do not have an autism diagnosis, but anyway, I was in gifted, blah, blah, blah… it’s a type of special ed. And so watching it, I was like, “Oh, God, this is somehow like really great to watch as much as I can evaluate that as a person who grew up differently, and also like, they use so much ableist language still, they’re still talking about functioning labels. Like, you know what they’re getting and what they’re missing.” Anyway.

Kayle: Yeah, for me it was The Fault in Our Stars. I related a lot to the chronic illness part of it. I’m like, “Oh, they’re chemo makes them puke, my chemo makes me puke.”

Brianne: Yeah. So many of the things are there.

Kayle: Yeah. And just like, having the dynamic between the friends in the support group, just being completely… like, I could not imagine having that type of relationship with a non disabled person. Yeah, but obviously that has a whole other set of problems. But I was very much, besides my friend at college, I’ll even give a shout out, Rabbi Emet Tauber. He actually passed away, but completely changed my life, my direction, everything. So he was kind of the person that I went to with all of this, and he helped me through the diagnosis. The hematologist ultimately gave me a number for a geneticist, and I had to wait like, seven months for an appointment. And finally the day came and it was like, a three hour long appointment, complete full exam, spending hours in his office, just telling him about my medical history. And it was kind of funny because he came back and was just like, “Okay, so yep. Here are your results.” And like, “Here are all the doctors I’m going to send you to.” And so I was like, “Wait, so do I have EDS?” And he was like, “Oh yeah. I’m pretty sure.”

Brianne: And you’re like, “This is a weird diagnostic process! Like, shouldn’t you be clear about what that means?” Can I ask the questions about that then? You probably know more now than you did at the time. So it was a three-hour exam. Was it someone who like mostly only works with EDS people or was it just like everyone?

Kayle: He was an EDS specialist.

Brianne: Did you have genetic tests done? I said that weird cause I forgot all the words in the sentence while I was talking.

Kayle: Yes. I did have genetic tests done, except for obviously hEDS doesn’t have a genetic marker yet, and also classical-like EDS, while it does have a genetic marker, it is very super duper rare in terms of testing. The testing for it is really rare, and so I couldn’t afford to do that one, but I tested for the other ones just to rule them out. And of course, they all came back negative. I was still very comfortable going on with my diagnosis though because even before I did the genetic tests, he said to me, “Based on your symptoms, I think you have either hypermobile EDS or classical-like EDS, the two ones I can’t test for.”

Brianne: Yeah. And I think it’s important to say that I think that none of the genetic testing is totally conclusive because even when they’ve identified variants, like for classical or for vascular, they’ve identified some variants, but like, they’re still finding people who have the symptom profile that they used to define the subtype who don’t have a known variant. So like, the genetic stuff is so interesting, but also like, such a mess for patients at the same time.

Kayle: It really is. I did have a few results that came back as like, a variation but not of clinical significance. And I’m like, “What does that even mean?”

Brianne: Yeah. I have not had a genetic testing done, but I did… I don’t care about privacy, I guess. This is not advice. Don’t do this. But I got 23andMe and then like, ran the raw data through couple of different sites that let you do that LiveWello, I think, yeah. And LiveWello has like, an EDS thing, and it’s not diagnostic obviously, but I’m like, “Okay, that’s a lot of variance on one relevant gene. Like, is that relevant information? I don’t know. We’ll find out one day maybe.”

Kayle: Exactly.

Brianne: Okay. Basically, he was like, “Cool, so you don’t have any of the known variants, but like, definitely you should pursue care for this because this is also a clinical diagnosis.” And this was when you were in college, did you say?

Kayle: Yeah. I would have been 20

Brianne: Okay. And then were you able to start specialized care relatively quickly? I mean, I know that treatment is kind of like a concept more than…

Kayle: Yeah, the main thing I stuck with was the cardiologist, because at this point like, the POTS was completely just out of control. I still didn’t have a name for it.

Brianne: Right. Standing was bad.

Kayle: Yeah, standing is bad, just bad all the time. I would talk about it feeling like I’m walking through like, glue or something like, I just feel bleh, so I went to see the cardiologist. He wanted me to see a few other specialists that I may have had like, one or two appointments with, but, you know, I was also still in school at the time.

Brianne: Yeah.

Kayle: Yeah.

Brianne: Yeah. And also like, now this is going to be a, such a hypermobility-heavy batch that I’m like, not getting as explanation-heavy as I might otherwise. But like, the thing about EDS is that there aren’t targeted treatments at this time. Like, PT is applicable for some people and very helpful for some people and POTS management or pain management. Like, it’s all management related.

Kayle: And I think that the biggest gift it has given me, because, you know, like you said, an EDS diagnosis doesn’t necessarily mean adequate treatment for EDS, but what it did help with was the way my doctors approach my care in other areas. I finally felt somewhat comfortable going in for my second surgery to fix my hardware because I had an EDS diagnosis and I could say like, “I don’t care if you think I’m doing fine, give me fluids all the time.

Brianne: Yeah.

Kayle: And, you know, it was a much smaller surgery, but it went a lot smoother.

Brianne: Yeah, I believe it. I mean, without getting too into details about surgeries because I try not to, in my own research even, like, EDS has a lot of impacts in surgery. I mean, it impacts wound healing. It impacts how you process anesthesia for a lot of people. Like, it impacts how you process pain medication for a lot of people. So a lot of standard surgery practices are going to be a very bad experience for someone with EDS, and that is like, since so many people are undiagnosed, under the radar. So in between those two times when you were thinking… when you decided to get a second surgery or however that unfolded, had you started to think back about more of like, “Oh, this might explain a lot about why the first one went poorly?”

Kayle: Oh yeah.

Brianne: That majorly clicked into place to make it so that you were like, “Okay, and also a second surgery might fix some of these problems in a way that like, we can plan for.”

Kayle: It was actually… even before the appointment with the geneticist, his assistant had sent me a questionnaire, and it was like 15 pages of questions. And just going through it, that was kind of my initial like, education about what all of this really meant, was going through this questionnaire. I think that might’ve been the first time I really even had an introduction to POTS because I was just thinking about hypermobility and pain, and then this questionnaire started asking me, “Do you feel dizzy when you stand up?” And I was like, “Yes.”

Brianne: “All the time. Fun question.”

Kayle: “Do you bruise easily?” And I looked down at my legs, and I had like 10 bruises on each leg.

Brianne: Yeah.

Kayle: So, yeah, and it really started between that questionnaire, talking it over with Emet, and also talking to my mom, it really started to all sort of fit in together.

Brianne: Yeah. It’s paradigm shifting, like with POTS as an example. Like, if you’ve never had a POTS related super crisis, you’ve still probably been really heavily impacted by it for a long time and getting like, the lens to see that, it shifts so much. It’s wild.

Kayle: Yeah, the POTS. Oh my God. The POTS especially, being seven years old and having a cardiologist tell me like, “You’re absolutely fine.”

Brianne: Yeah.

Kayle: And that happened more than once because I had another episode. This would have been before my scoliosis diagnosis. In gym class, we were doing a lesson checking our pulses, and I was like, “My pulse is like 130.” And they were like, “You’re wrong.”

Brianne: Yeah.

Kayle: “I don’t know why you’re here.”

Brianne: Yeah. It’s weird with the blips when you know in retrospect, and you’re like, “Oh my God, this is mediated by so much other weird stuff that like, now I would control for, for a test of like, ‘How hydrated am I? How much salt have I had? Like, if mast cells are a factor, how well managed are my triggers?'” We have like, no control over dysautonomia, but we also have a lot of control over it like, when you know about it. And so it’s weird too, to just think back and be like, “Oh my God,” like, “an informed doctor would have known those things and would have understood that an isolated incident and then me being fine in the office isn’t disqualifying in literally any way, and in fact is defining of the condition.” Like, “What was going on?” Yeah.

Kayle: Yeah. At this point with the EDS diagnosis, like, it was very bittersweet. I definitely felt a lot of relief, finally. Like, having something to be like, “Okay, this is it.” Like, I had always had the arthritis, but something else was always there. But at the same time, the anger really started coming out then because I was supposed to be seeing some of the best doctors in the country.

Brianne: Right. Yeah. And when you had been in Boston, even at that time, like, seeing people for one condition… I know that’s not where you went to college, or I think that’s not where you went to college, but like, moving between major hospitals would be pretty formative for this, right?

Kayle: Yeah. It was. I moved from the Boston area to New York for college.

Brianne: Also known for its medical facilities.

Kayle: Yes. Yes. It was the new set of eyes is what my mom and I would talk about. It was the new set of eyes on my body. I didn’t always accept that explanation. I remember after I got the EDS diagnosis, I actually called my old rheumatologist, and I spoke to his nurse and I said, “I just wanted to let you guys know that I was just diagnosed with Ehlers-Danlos syndrome and like, I wanted you to know. So if you see any other patients with these symptoms, like there you go.”

Brianne: Yeah.

Kayle: And her response was like, “Really? We serve a lot of people with EDS.” Like, “Wow, I never would have known.” And that just pissed me off more.

Brianne: Yeah.

Kayle: Like, they knew. It had nothing to do with having a fresh set of eyes. They had patients with EDS. They knew the symptoms.

Brianne: Yeah, they weren’t looking.

Kayle: Yeah,

Brianne: Yeah, it’s hard. EDS in it’s own very specific way, as it is becoming like, more well-recognized, relatively speaking, we’ll say, and like probably will be diagnosed a lot in the next couple of years if those diagnostic pathways get like, shaken a little bit… like, there’s so many people, and most of them have so many major blips in their history. Like, what is going on in the medical field that this isn’t… nobody’s tracking this. I see so many conversations about this now among patients and like, not just in my circle around No End in Sight, like, a lot of people are talking about this. But not a lot of like, healthcare decision makers are talking about it, and it’s like, an entire systemic problem. It is really rage inducing

Kayle: It is. It really is. Looking back now, I understand how this is a little bit of lateral ableism, but I would think to myself like, “How could they think I was faking?” Because I already had a diagnosis. They knew me as a sick person. How could it be so far fetched that something else was wrong? I would get frustrated at people who had been healthy their entire lives, but suddenly have blips and get a diagnosis and I’d be like, “What the hell?”

Brianne: Yeah.

Kayle: “Why? Why?”

Brianne: Yeah. A really weird injustice that I’m now more aware of is like, the longer you’ve been sick, the less likely you’re able to articulate how difficult it is. If you’ve been sick your whole life and un… not undiagnosed, but if this symptom cluster has been undiagnosed, so you don’t have a name for it, or a vocabulary for it, or a management plan for it. If you’ve been living through it for 10 years, one, it’s probably pretty normal to kind of catastrophize about it, but if you actually try to describe it, you’re probably going to not describe it very well, because you don’t know which part of it is like, abnormal anymore. You’re just like, “I think that this is normal, but the weird…” like with POTS, you know, it’s like, “Standing up presumably feels terrible for everyone, so the only symptom that I report is if I black out.” But like, the blacking out is the POTS, the whole thing is the POTS. And so if someone developed it suddenly… this is something that strikes me about post viral ME, not in a good way, but like, there are some people who don’t recognize symptom patterns if they develop ME, occasionally, and it’s like, that must’ve been really different for you to be like, “Standing is terrible now, and it never was before. And I like… even if the doctors don’t believe me, I have no trouble believing myself.” Like, there’s a thing about that. I’m very long-winded right now as my sleep isn’t terrible.

Kayle: Yeah. I go back to the arthritis and how growing up, everything was always just pushed under that. Even when it didn’t make that much sense, like, “The POTS fatigue? That’s just fatigue from the arthritis. The joint pain? That’s just joint pain from the arthritis.”

Brianne: Right. And the joint pain would be very easy to categorize… like, that would make a lot of sense, except that it probably didn’t make sense.

Kayle: And like, even the stuff that didn’t really make sense, my doctor would just write about as if it was completely normal. And it was like, a little gaslighting because years later, years after my EDS diagnosis actually, I went through old clinical notes, and I mentioned this earlier, but like, hypermobility is mentioned in every single one, every single one. And talking about like, my range of motion and just talking about how overly flexible I am and how I have joint pain. And he thinks that’s because of the hypermobility, because my lab work is okay. And it’s like, all the dots are there, but like…

Brianne: Yeah. “Just connect to them. Please. Please connect them.” Yeah, that’s a hard thing.

Kayle: Right. And so growing up because you know, my mom would always encourage my involvement in my health. He would send the clinical notes, and we would read over it together. And it just became like a fact, like, “Yeah. Kayle’s hypermobile.”

Brianne: Yeah. Yeah. I think like, the earlier versions of like, people who were told they were a double jointed, like that’s definitely, when I was a kid, I was like, “Yeah, I’m double jointed.” Like, that’s not a thing!

Kayle: Yeah, my parents to this day will laugh about how I used to win twister competitions at barbecues.

Brianne: These were flags. They were flags the whole time. Okay. So, yeah, so like, diagnosis comes with all of this stuff, and you’re like, navigating this. And then you also decide to get another surgery, and it was much improved because it was like, informed by all of this stuff, this information that you now had. And was the surgery also while you were in college?

Kayle: The summer between undergrad and grad school. I did it. Yeah.

Brianne: Okay. That’s when I got my wisdom tooth out, which is a much less serious surgery. Yeah. So you were like, “Okay, now’s the time to deal with it while I have like a little bit of space.” And how… cause I know there’s like a problem in here somewhere… how was navigating school while you were going through… I mean, kind of the diagnostic process and the surgery process, like with a disability? At what time did you really start thinking more about how your conditions were impacting your kind of relationship to academia or how you were able to participate?

Kayle: So like, Maybe 50% was from my experiences with diagnoses, but the other half was definitely having the influence of Emet in college.

Brianne: Yeah.

Kayle: I can’t even overstate that enough.

Brianne: He’s your disability doula.

Kayle: Yeah. It was in college that Emet had founded the disabled students union at our school, and he really introduced me to like, the fact that disabled people have a history, and like, I genuinely like, 19 years old… I had used wheelchairs in the past like, while on vacation, but for some reason I would still think to myself, “Why would I use a wheelchair?” Like

Brianne: Like in normal life.

Kayle: Yeah, I can walk, like, “Why? I don’t need a wheelchair.” Also didn’t have the best language back then, largely from internalized stuff, but that education and the space that he gave me to sort of process the diagnostic journey I was going through, that’s when it really started to blossom in my mind.

Brianne: When you like, start looking around you and you’re like, “Oh no, this is terrible too.”

Kayle: Exactly. You know, I filed my lawsuit against my undergrad in sophomore year, and Emet had actually helped me with that as well. And in school for media studies, I ultimately did my senior project on like, disability and cyborgs and technology and all of that stuff, so having the chance to like, absorb all of this information that I had never done in the past, it was amazing.

Brianne: Yeah. And you’re like, “Cool. Some of the stuff about how school is, is terrible, but like, access to this information and community is really like, great, generative.” Yeah. And we don’t need to talk about the lawsuit a lot, because that is definitely like, very both topical and not topical, but will you explain it just a little bit, because I know there are so many people who just have trouble with chronic illness in school. So how did that come about, or kind of what are the like, top points that your brain can put together at this moment?

Kayle: Yeah. So, it was a nonprofit law firm, disability rights law firm. And they were already… they had years of like, testimonies and documentation about the lack of accessibility on campus. They were getting ready to move forward. And they had plaintiffs, but they needed like, a student representative cause it was a class action lawsuit and they had no one to represent the student body. So that became me because I was going through some trouble with the administration accusing me of faking my disability, so even though that was not really part of the lawsuit, I would definitely say that the anger from that situation powered me through to actually do it. But yeah, it’s mostly for architectural barriers on campus because it’s very not ADA accessible. When I met Emet for the very first time, it was because he was having trouble pushing himself up one of the hills in his wheelchair and I helped him.

Brianne: Yeah. You were like, “I see. This is definitely going to be a problem.”

Kayle: Yeah. It’s been going on for four and a half years, and it’s just been in and out of settlement discussions, in and out of the courts, lots of motions, lots of delaying things.

Brianne: Yeah. That’s the part where I’m like, legal stuff that we definitely don’t have to get into, but still happening.

Kayle: I do want to say that like, I was definitely very lucky. It is so hard to file a lawsuit. And these people literally came to me. They came to me cause I was causing a stir, sure.

Brianne: Right.

Kayle: But they came to me. I had no intention. I don’t want to say I didn’t have any intention cause I did think about it, but I thought it would be really not possible for me to actually find or afford a lawyer.

Brianne: Yeah. And so like, as a relevant aside, like, if anybody listening talks to a student who has access problems in university like, suing the university isn’t a first-line step that most people have access to, even though it would probably be great if they did. I’m not putting that down, but like, it’s not a typical situation that there’s like, kind of a lawsuit waiting to happen. Unfortunately?

Kayle: Right. And here, this was a lawsuit waiting to happen. And I was just in the right place at the right time, depending on how you look at it.

Brianne: Right, right.

Kayle: In terms of the lawsuit, I was in the right place at the right time and talking to the right people, and it just kind of happened. And it’s still something I’m really proud of. I don’t want to detract from the fact that like, I’ve spent four and a half years.

Brianne: Right. And I don’t mean to say that you were not a part of it. Yeah, yeah.

Kayle: And it’s very… being deposed and questioned about the validity of certain experiences is very hard. Especially when you know, you get questioned about that stuff a lot.

Brianne: Right. Especially when that’s like, central to what has been one of the things that’s been so difficult about the experience, not academically, like, about the medical experience too. Yeah.

Kayle: Right. And yeah. It hasn’t been easy but, like, I don’t want people to also think like, “Well, if she can do it, I can do it.” I want to encourage people to like, exercise their legal options where possible, but like, it’s really hard to do it. And like, don’t yourself up if you don’t have access to those options.

Brianne: Yeah. Yeah. And that makes sense. It’s hard because sometimes… whenever we see success stories, it’s motivating as it should be, but it can also be kind of sad. Yeah. Like, “Why can’t I get this much leverage behind…” And I think this applies to so much disability related stuff and it’s like, you know what, unfortunately right now, not defending the status quo, but like, unfortunately right now it’s a lot like diagnosis in medicine. A lot of it is luck. A lot of it is like, being in the right place at the right time for traction to happen around you, that you are involved in, whatever, whatever, but like, there needs to be both. Yeah.

Kayle: Right.

Brianne: It’s hard. So that’s still happening, but we are sort of approaching the present, and I know you’ve kind of been like, reflecting as we go, which is wonderful. So have we missed anything… so you had the surgery after undergrad and then you started grad school. How was that transition and kind of, how have things been since then? If that’s a good question.

Kayle: I still have blips. I… sometime in the past few years, don’t even remember what year it was diagnosed with autoimmune thyroiditis? Something… Hashimoto’s and you know, fibromyalgia, and ovarian cysts and like, random things that can still feel overwhelming from time to time. But doing pretty well, finishing up grad school this… next week, actually.

Brianne: Oh, wow. That’s exciting.

Kayle: I’ll be done. Will have my degree in disability studies. Switching from undergrad to grad school was great. It was great. I don’t know how else to say it. Switching from high school to college was an improvement because there was a little less structure. I didn’t have to go into class every day. Switching from college to grad school was even better because my grad school was completely online. Completely online and doing only disability studies and yeah. I just… I thrived.

Brianne: Yeah, you were like, “And all of a sudden one, I know more about what my body needs and like, perhaps the choices I can make to manage discomfort and two, this environment is much more supportive.” And I’m sure the disability studies departments are not always great at accommodation, but one also hopes that they will be slightly more aware about accommodations.

Kayle: Definitely. It’s actually great. There are quite a few disabled professors in the program, so it has made life a lot easier.

Brianne: Yeah. Yeah. Once you uncover that like, people have found a way to live in the world that’s just very different than how you were taught to live in the world, you’re like, “Oh, I could just make different choices, and it wouldn’t fix everything, but it would like, make a few things a lot less stressful.”

Kayle: Yeah.

Brianne: Yeah. Yeah. So you’re about to finish grad school in a week, and this will come out after, so you’ll be finished grad school. Congratulations in the future past when this episode comes out. And then are you looking at, because it ties in so much, like, disability studies, of course, is rooted in both theory and personal experience. Are you looking to kind of merge those as you move forward? How are you thinking about work right now? As much as that is like, a nice thing to talk about and not a stressful thing to talk about.

Kayle: I definitely put my personal life into like, everything. Kind of funny, at work we just took a leadership quiz and that was like… one of my top traits was the context of things. I like to know contextually, and I like to provide context. “I think these things because of these experiences that I had.” And my motivation starts with wanting to make sure that people haven’t experienced the same level of what I’ve experienced. I say it starts there because people experience things worse than I do, and I’m also motivated to help them. But I’ve thought about law school, but I largely just want to work somewhere in public policy, non-profits, just that general realm.

Brianne: Yeah. You’re like, “Who’s doing this work and how do I find them?” The work is changing very quickly right now, as the government’s been changing so quickly here in the US. So, yeah, obviously that is an area of active transformation in your life right now.

Kayle: Yeah, constantly trying to just absorb more and more information, not just about disability stuff, but just like, how the government works.

Brianne: Yeah. “What do I need to know to do something that makes a difference about things that I care about?” Yeah.

Kayle: Right. Exactly. So, Yeah. That’s kind of where I’m at.

Brianne: And is there anything that you wanted to talk about today that we haven’t gotten to somehow in the muddled conversation? It’s okay if the answer is no.

Kayle: Yeah, I think we actually got to talk about more things than I was expecting.

Brianne: You can cover a lot in an hour and about 45 minutes, like a lot happens. Okay. Awesome. Thank you for sharing your energy to talk to me and precious brain power to share your story. I know it is not free.

Kayle: Thank you for having me. I was so excited for this.

Brianne: I love it. It was so much fun.

[guitar riff]

Drew: Thank you for listening to episode 77 of No End In Sight!

The post 77 – Kayle appeared first on No End In Sight.

Alex Haagaard talks narcolepsy, mast cells, and inclusive design.

Brianne: I’m Brianne Benness, and this is No End In Sight, a podcast about life with chronic illness.

Drew: Hey, this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, We’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. Today we’ll be talking with Alex Haagaard about narcolepsy, mast cells, and inclusive design. A few content notes for this episode: There’s some COVID vaccine talk around 45 minutes in and lockdown comes up around 2 hours and 20 minutes in. There’s a mention of Vyvanse at around the hour mark, and a mention of cannabis around an hour and 45 minutes in. There are oblique references to suicidal ideation at around an hour 25 and an hour 35. And there’s a mildly graphic description of a bleeding time test an hour and 50 minutes in. Before we start, here’s our disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: Okay. Well I like to start just by asking people, how was your health as a kid?

Alex: Oh. Oh God, that’s a complicated one. So yeah, I was a sickly little kid, and at the same time, my doctors and my parents really liked to reassure me that I was a healthy little kid. Never… never heard anyone talk about that before on the void.

Brianne: Very unusual.

Alex: Yeah, my whole health journey started when I was four, and my mum took me into urgent care, and they discovered that I had petechiae, which is like a pinprick kind of bruising that’s most normally associated with bleeding disorders. And they freaked out because for them it was like leukemia. That was their big association, and so that started me on the whole thing. And I didn’t have leukemia. I didn’t have AIDS. I didn’t have lupus. I didn’t have any of the other really scary things that they tested me for. So it eventually got sort of downgraded to idiopathic thrombocytopenic purpura and they just sort of left it there for another 20 years.

Brianne: Okay. Were you aware, at that age, that they were looking at… considering serious health stuff? Did that imprint?

Alex: It did because my mom does not handle stress or trauma well cause she’s… she’s got a lot of trauma. So yes, I was the emotional regulator for my parents. So yes, I was very aware of all of that and it was amazing. It was… it was honestly… it was weird cause I was aware, but I also don’t think it really like hit me because they ruled out the really scary stuff sort of within a span of three months. So there was sort of this period of very scary stuff, but the stuff that was most scary for me about that was the actual physical stuff that I experienced in the hospital, which we can get into cause that was a whole thing, too.

Brianne: It’s hard cause like you say, when you’re that young, the context for so much of it is like, you can pick up the emotional cues of the people around you and interpret them however you interpret those things at that age, which is widely varied. Of course.

Alex: Yeah. So much. And it is odd too. Cause there was like a little bit of context. Six months or a year before I was going through that whole thing, another kid in my class had been diagnosed with leukemia. So I remember sort of like… I had that context. And like also as a kid I didn’t see it all that much differently.

Brianne: Yeah, it’s so weird. I’ve been thinking about this so much lately,

Alex: Oh my God. Yes.

Brianne: And people are like, “Kids… you shouldn’t need to lie down, get up.” And you’re like, “Okay. But that other kid who isn’t about to faint, but something serious is wrong with them… you recognize that they need to sit stuff out.”

Alex: Yeah.

Brianne: That’s really present for me right now.

Alex: Yeah, it’s a really weird feeling. You know, I talk a lot about how we distinguish between medically visible and medically invisible disability. And I mean, I think that foundation was laid, like as a kid, as I was seeing how differently adults responded to some of these illnesses and conditions. So there was literally this one time… I did swimming lessons. And whenever I had to have an endurance test, I’d get sick. That was like the, how you leveled out of whatever badge you were in. And they did the endurance test where you had to do like 20 or 40 laps within a certain amount of time, and I would always get sick. I’d always start wheezing. And then one time I like fully collapsed in the change room, and apparently I was like screaming about how I was dying and stuff. And like somehow not one of the adults in the change room was like, “Hey, maybe we should phone 911 or something.” I don’t know.

Brianne: Just like call a lifeguard.

Alex: They just sort of like stood around laughing, and like, eventually someone got my mom, and I like told her she had to take me to the toilet cause I was like incontinent by that point. And then I told her she had to get me into the shower and cool me off. Like I somehow knew this. I knew I needed to get cooler. And like looking back, I’m like, “Someone should have phoned an amulance. Why did no one phone an ambulance? What?”

Brianne: Like just, how did everybody interpret that scenario? I don’t know. I like, I fainted in public, more than once at this point too, and I’m just… it’s weird. It’s weird how people react, especially to like… everything that they think is going on in the circumstance and whether or not they think that you are somebody who needs help in that moment, because I feel like I’ve had both reactions.

Alex: Totally. Yeah. I’ve close to fainted once in public. And that was in high school, and this is the thing, I’ve never full on fainted, but I’ve gotten to the point where like I semi consciously laid down. Right? Like I still… I would consider that fainting because it was like, I laid down at the point where I knew if I didn’t lie down, I was going to hit my head. But like, technically I was still conscious cause I could hear things. And I remember it. This was in high school, and I was in the hall in the middle of lunch, and I sort of like crumple laid down on the floor. And I heard people stepping over me and being like, “Ooh, she’s really sick.” I mean like, “Okay. So like, could someone get a teacher maybe?”

Brianne: Yeah like, “What is the protocol for this?” God! Yeah.

Alex: Yeah. And then, I remember one time, I was like… when I lived in Toronto, I stopped doing it because I figured people were going to figure I was drunk or something. This is the other thing too. I sort of learned very quickly that people would just assume I was drunk or high or something. So like one time I was on my way to an exam, and I got overheated on the TTC cause TTC in winter… like coats and everyone, and then it gets delayed, and I had to run off the train and go lay down on the floor of the bathroom, which is just like… floor of subway bathroom is not a place you want to lie down. And I had to go to like write a three hour exam after that. It was just not great.

Brianne: You were like, “I’m covered in bathroom, and I do not want to be.”

Alex: Really don’t want to be here right now.

Brianne: Yeah. Yeah, no, definitely. Transit is the worst. Okay. I could think about that a lot more, but okay, so as a kid, you’re like going through this and you’re very… you are becoming increasingly aware of like the dynamic between your health that you’re like… Maybe you have good words for this. There’s just dissonance between what you are aware of your body doing and the way everyone else… I mean, that’s what you were just describing. There’s a huge dissonance as you’re moving through the world like, “My vision is spotty. I can’t make full sentences because there’s no…” I mean, obviously also you probably don’t know that this is why it’s happening, but, “My vision is spotty. Blood isn’t getting to my brain, and I’m trying to like move through the world like a biped and it is not happening. And everyone around me is just like, ‘ha ha good luck with that.'” And then this isn’t like an oppression Olympics thing. It’s just that like, as an experience, you’re like, “Oh, there’s distinct things going on here.” Yeah.

Alex: Totally. Yeah. And it was also so interesting because there was this dynamic where I think because I had that experience of potentially serious sort of medical issues as a kid, there was also this interpretation that as I kept complaining about health issues and talking about the things I was experiencing, I think a lot of the adults in my life interpreted it as like anxiety born of those experiences I’d had, that I was worried… cause I remember one time they tested me… this was when I was a little bit older. I was in my teens, and they tested me again for the markers of lupus. It was the ANA test. And I remember I’d asked them, “You tested me for lupus when I was like five. Does that mean I could still develop lupus?” And they were like, “Yeah, it’s a possibility that you could still develop it at some point.” And I remember sort of talking to my parents after the fact, they were like, “Oh, you’re still anxious about getting lupus?” I’m like, “No, I’m just curious.” But there was this assumption that I was sort of like experiencing anxiety, and that what they were trying to do was reassure me. And I was like, “No, I literally just want answers. Like, why does my leg feel like it’s popping when I go up the stairs?”

Brianne: Yeah. Yeah. It’s like, other people are trying to answer the question, “Will something serious happen?” And you’re actually asking the question, “Is this thing that’s happening now serious?”

Alex: Yes exactly.

Brianne: Yeah. And they’re like, “No, no, don’t worry. Like, you don’t need to worry about your health future. That’s in the future, you know, live in the now.” And you’re like, “No, I’m talking about the now. That’s what I’m talking about.” And do you feel like… something that I think is really interesting is how that can affect different people. Do you feel like you yourself were pretty confident that you were having physical sensations or were you starting to be like, Huh? Do I just interpret my body in a very,” I don’t know the right word here, like, “concerned way?”

Alex: I would say I was like pretty confident in how I was interpreting my body, like right up until my late teens, like in undergrad, and then… it’s like complicated because I was always the weirdo freak outsider. I didn’t have friends. I was also autistic and undiagnosed with that too. I literally did not have a friend group that stuck around for more than like maybe a year at a time, at which point they’d sort of get sick of me and/or realize they could get more popular by hating me. I was just sort of in my own bubble, and like, there was something to that. And then I got to university and I made friends for the first time, but it was also very… like, I was masking. I was making friends through masking, and they’d tease me, in a good natured way, the way that friends do about like, “Oh, you’re such a hypochondriac.” And like, because they were now my friends, I started to like internalize that more. I was also in pre-med. And so I was getting exposed to that culture of, “Patients always think there’s something wrong with them.” So there was that. And then I also started dating my ex partner who was also a pre-med. We were in the same program, and who came from a family of doctors who had very specific ideas about patients and illness and what those things mean. And all of those sort of through my late teens and early twenties, I started to shift and stop believing myself, and lost touch with what I was feeling in my body. Even as… that was exactly what my illness was sort of ramping up.

Brianne: Yeah. I also think… I know at least for me, like, one thing about moving to a new environment at that age, is like, there’s so much distracting junk going on. There’s so many different things influencing your body. It’s easy to just be like, “Oh cool. This new environment feels different. I have a different bed. I have a different bedtime,” so many factors that are like, “Cool. This is what it feels to be here now.”

Alex: When people ask me when my narcolepsy started, I straight up can’t answer because for such a long time I thought it was just, “Oh yeah, everyone’s tired in school, and everyone has a fucked up sleep cycle.” It wasn’t until I was literally sleeping like 14 or 16 plus hours a day and like, missing meetings because I’d fully slept through my alarm that I was like, “Oh, something is like definitively wrong here.” There’s like maybe two or three years, maybe even four years before that, where I don’t know to what extent that was like, “My brain was starting to have issues literally,” or it was just like, “I’m someone who deals with fatigue and was also in like a very sleep disordered environment.”

Brianne: Yeah. Yeah. I find it very hard to look back at school. I went to architecture school, which is… I did not know, but like, notoriously basically abusive as an environment. It has a huge hazing culture. And as a profession, it has a huge hazing culture. And it was just like, “Oh, this is really difficult.” And everyone around me would be like, during finals, right before reviews in studio, would be like, “I haven’t slept in five days.” And I’d be like, “I slept for five hours last night, and I’m in so much pain. What are you talking about?” They’d be like, “Oh, ha ha. You can’t stay up all night. What’s that about?” Like, I think I was the youngest person in my year in my program just because my birthday’s at the end of December. You know, a couple people were like a few years older, like, “What do you mean, you can’t stay up for three days? Like you must just be flawed.” And you’re like, “Yeah, my desire to succeed in school is the problem here. That’s right.” So at some point, were you like, “Huh…” or did you not have a choice?

Alex: So basically I had an existential crisis in my final year of undergrad, but I didn’t realize exactly why I was having it. I was also fully determined to go to med school, and I applied. I got in, and I was like, “I can’t do this.” I was like… just freaking out. And so I decided to apply to design school instead. I actually, I applied to RISD for their undergrad in… can’t remember which program. I applied there.

Brianne: Yeah, “Sorry.”

Alex: They were like, “I’ve never heard of school costing that much.” I was like, “Okay.” This is like in North Durham, like rural Ontario.

Brianne: And Ontario in general, I mean, graduate degrees in Ontario… graduate degrees at U of T can be pretty expensive, but like undergrad in Ontario…

Alex: Not like, cost of a house expensive.

Brianne: Yeah. It’s never that high. Yeah.

Alex: Not for an art degree. They’re like, “You want to spend it on what?”

Brianne: You’re like, “Listen, it’s a good school, and that matters.” Which it does, but also one thing that I’ve learned is that chronic illness really interferes with your ability to maximize a network.

Alex: I… in hindsight, I spent a really long time feeling guilty for not, but when I was sort of living in poverty as like a designer who couldn’t get my career off the ground, I spent so much time feeling guilty for not going to med school, but also in hindsight, I’m like, “I would have been $200,000 in debt and not able to do residencies.” I would not have made it through. I am so, so glad I had that existential crisis.

Brianne: Yeah, no, I 100% hear you. And it’s weird when you’re still undiagnosed, and you’re like, ” Some parts of school are hard, but it doesn’t seem to be the parts of school that other people struggle with. So like, how do I anticipate… Is this grad program a good choice? Like how could I possibly make that decision? Because I don’t know what my body needs or why it seems to be different than other people.” Yeah.

Alex: I also didn’t love my master’s program. There was a lot of ableism. My thesis was on design for healthcare, and it was not nearly as critical enough of the healthcare knowledge practices that I now spend all my time critiquing, and it could have been so good. And I regret that so much, but the one thing it did give me was like critical theory and the language to realize why I was so deeply uncomfortable within my undergrad, which was… the ableism of the culture and the ways of knowing and the ways in which they erased patient knowledge like systematically. And so it gave me that, and I finally had the language to be like, “Oh, this is why I like, could not survive in medicine.’ And also… it’s really weird cause I still love medicine. It’s still like my favorite topic, but I like it as an observer and a critic, and I cannot be in that space. So.

Brianne: Yeah. And like, it’s so complicated how, like, there’s the difference between medicine and healthcare. A really big difference. And it’s hard to be like, “How could medicine be practiced within our community in a way that would be generative?” And then you’re like, can that happen within a healthcare system?”

Alex: Yeah. So I took one year between my undergrad and my grad, cause I had decided at that point to pivot into design, but obviously I needed to apply somewhere that I could actually afford to go. So I spent like a year working in retail in a yuppie dog store near High Park in Toronto. It was on Bloor. It was literally like right beside the park. So it was just big houses, lots of very well taken care of dogs with collars that cost more than my rent.

Brianne: Yeah. When I first moved to Toronto, I actually moved into one of the, like very tall high-rises near High Park, which are not expensive, but are like… it’s a weird land use thing, but that was my first neighborhood. And I was like, “This is the weirdest neighborhood ever.”

Alex: I love like, honestly, those high rises are so nice, and the park was so gorgeous. And then yeah, then there was just like the huge, huge houses and yeah, literally one time we had a dog come in that was wearing like an Hermès collar. It was like, “Okay. My rent is $500, and I can barely afford that, but sure. Fine. That’s great.”

Brianne: Yeah, yeah, yeah, Toronto’s weird. Separately. Yeah. Cause I lived like North of Bloor, but like, across from the park. And so I was just like,”Aha! I can see your beautiful neighborhood from the edge of my balcony.” And I was good. That’s just my important fact to add to this designer dogs in Toronto discourse. Okay. Yeah. And you’d been having an existential crisis, you were thinking more about design. Do you feel like… were you consciously thinking about what was going on with your body at that point? Or was that still very much like… maybe you’re aware of it in retrospect, but it wasn’t… you weren’t thinking those words at the time?

Alex: I was sort of repressing it until probably like the end of my first year of my master’s. I had sort of a moment of clarity when… I was also doing a research assistantship, and like, my boss was actually like really cool, but the other students, I was doing the research assistantship with got furious with me because I had flaked out, quote unquote on a morning meeting because I slept through my alarm for three hours and I was like, “Okay, this is not right.” So I like went to the campus clinic. And I was like, “I think I need a referral to someone.” And it was at that point they referred me to a sleep specialist, and I sort of started going through the process of getting the sleep disorder diagnosed. It was with the sleep disorder because it was so overwhelming. It was not something… I could neither ignore it. And I also could not control it, no matter how hard I tried. So it was at that point, I started realizing like, “No, there is something deeply wrong here.”

Brianne: Yeah.

Alex: Yeah.

Brianne: And Toronto… I mean, this is loaded for a variety of reasons, but Toronto is a good place to be all things considered, if you have a medical issue. Depending on what’s going on with your body, one of the best places in Canada, if not the best. Plus it’s covered.

Alex: Yes. That is helpful. Anyway, so yeah, I got referred to the sleep clinic and honestly, the sleep clinic was… it was not good. They did the first sleep test, and they diagnosed me with idiopathic hypersomnia, which that doctor told me that it meant what it sounds like. Essentially, “You sleep a lot, and we don’t know why.” They’d ruled out narcolepsy somehow. I don’t know how they managed that, but… they’d ruled out sleep apnea. They still insisted on trying me on a C-PAP machine for a month, despite the fact that I had lower than average apneic events, which was wild, but that is also sort of the health care cycle. Like, they have to rule out the common thing cause that’s the thing they can get funded for. They can get funded for prescribing you the C-PAP. They can get that partially covered, whereas an off-label drug, a little bit dicier sometimes.

Brianne: Yeah. Like, no mechanism.

Alex: Yeah. And so like, I tried the C-PAP. I literally could not sleep with C-PAP, and I think for sensory reasons, because again, undiagnosed autism. I could not sleep with it.

Brianne: Yeah, like, “This is what we were talking about before.”

Alex: “This is why I was not using it this month.” So it was obviously not sleep apnea either. So idiopathic hypersomnia, they prescribed me Modafinil. It was not working well for me. So they cycled through a couple other drugs, and they were not working. And then after about like four or six months, that doctor told me I just wasn’t trying hard enough to control my sleep cycle, and it was probably also because of my depression. And I found out a few years later that he’d written in my file that I’d agreed to continue working through this with my therapist. I didn’t have a therapist. So like not sure what…

Brianne: When did this conversation happen?

Alex: Yeah. So I sort of gave up again then for a few years. At that point I knew there was something wrong, but I also just… it was so frustrating, and that was sort of where I had gotten with my chronic pain and my bleeding stuff around university. I sort of gave up cause through high school, I kept being like, “Okay, but so why am I bleeding so much?” I was still trying to find answers. I was doing my baby version of my research, where I was like, “Hey, have we tested me for this?” And I sort of gave up once I hit university, cause like I can’t deal with this and it’s too much. And then I sort of started repressing it. And then the same thing happened with the sleep thing, which was like, I realized there was something wrong, but I also didn’t feel like there was any way for me to get help, and it was too stressful and awful. So I just sort of managed it as best as I could, which was by sleeping on again, the bath… I have a really good relationship with bathroom floors, sleeping on the bathroom floor at work during my lunch break and sleeping for literally 23 hours on my days off. And then just like waking up long enough to go down the street and get McDonald’s.

Brianne: Yeah. You’re like, “I am thriving.”

Alex: Yeah. Doing well.

Brianne: Yeah. And also, I think it’s worth noting compared to now is that certainly in high school and then kind of in university, there was no social media and there was certainly like… The modern internet didn’t exist. I personally was using Live and DeadJournal in high school, but I was not like, “Hello, where are the scientific med communities?” which very well, may have existed, but I was not looking for them at like 15.

Alex: It’s so funny you say that because that is literally… that is the moment when I started actively identifying as disabled, and like, I switched into chronically ill, fighting for answers mode. I think I was just Googling “idiopathic hypersomnia” to try and learn more, like, see if there were any other options, and I came across this Medium article that was profiling someone who had it. And who was one of these sort of first patient activists with idiopathic hypersomnia and talking about how there was research going on at… blanking on the name of the school. Emory! That’s the one. Okay. It turned out at Emory, they were doing research, and they’d found that some people with IH have this novel peptide in their cerebral spinal fluid that essentially acts like Valium. Like, it literally works like they’re under constant twilight sedation, and it was talking about this one patient who they’d tried administering a drug that is normally used to bring people out of anesthesia, post OR, and it had been like miraculous for him. And it wasn’t perfect because I think he was able to take it for like four weeks on and then would have to do a two week med holiday. Otherwise it would lose efficacy, but he was talking about how he was able to be conscious sometimes now. He was able to exercise again, and I was like… it wasn’t even so much that there was a hope of a treatment, but it was like, “Okay, so there is something real.” It’s not just, “You’re sleeping a lot, and we don’t know why it is.” It’s not just, “You’re depressed.” Like, it was, “Okay, there’s something real and physical going on here.” And the article mentioned that there was a Facebook group for other people with idiopathic hypersomnia, and that… it like started the whole thing. And I sort of started out… it was like very much a chronic illness only, not like disability-oriented space. But after reading that article, I started identifying myself as invisibly disabled to friends and family, and pushing back when they’d be like, “Hey, maybe you should just exercise.” Or like when my classmates were like, “Hey, have you tried this algae supplement?” Cause I was in art school, and of course everyone was like, “Have you tried gluten-free? Have you tried like drinking algae every morning? Have you tried like going to Pilates?”

Brianne: Yeah. “There’s a lot you can do. Is your diet raw?”

Alex: Hot yoga! That sounds perfect for me! Heat and bending your body in odd ways.

Brianne: I’ve never been to a hot yoga class, but like there’s a significant time in my life when I very likely could have. And I now feel very grateful that I did not do that because it would have been a very bad idea.

Alex: I remember like reading about that when it became a trend and being like, “Why is everyone not passing out in that?” And like that also probably should have been a hint.

Brianne: Yeah.

Alex: Just the idea of exercising in the heat. I’m like, “Why are people not actively dying when they do this?”

Brianne: Yeah. Yeah. “This is relaxing for you. Hmm… I have a very narrow band of comfortable temperatures, and I suspect this will be outside of it.” Yeah.

Alex: But yeah, so I joined that group and I started just posting and like being somewhat active there. And that was like my first exposure to just like chronic patient communities and the fact that this thing that I’d been told was literally psychosomatic was not and could not be. So in the three years after my masters, I basically just worked at the dog store and like, did short-term little research contracts? Cause this is the thing too, if you’re trying to make it as an artist or designer, so much of that is about like building your portfolio with spec work or work that you can submit to shows and like networking and like inviting the fancy curators into your studio for a studio visit. I think the students who got the most of our program were the ones who were like producing stuff and inviting the people who were connected to the department in for like critiques and making connections to get invited to gallery shows. And I was just there like, sleeping on the couch that I’d hauled up from the basement and put in my studio.

Brianne: Yeah.

Alex: Just sleeping in the studio. And so, yeah, I was like struggling to build any kind of career because I couldn’t do any of those things that you need to, because no one will just hire you off of a degree in that field. And working, working retail, sleeping in the bathroom. And then I started tutoring students in Forest Hill, which is like the other rich area, so for very good money for about six months. That was like, the most financially comfortable period of my career. And then I got offered a job in the UK for a research contract, and I jumped at it because I’d sort of always wanted to go see the UK and like travel a bit. And it also felt like finally building towards something more permanent in my career. I hadn’t really thought about what immigrating means as someone who takes like restricted class medications. So like, I got there and they’re like, “No, we can’t prescribe you this. We have to rediagnose you within the system.” And I was like, “Okay. So can you refer me to a sleep doctor?” And like, “Well, we can put you on the list, but it’s a three-year wait list.” My contract was 12 months. So my first six months, there were like fighting to try and access someone eventually. Thankfully, I had parents who could afford to send me to a private clinic, and six to eight months in, I got in to see that private clinic. I ended up essentially disappearing from work for a week, like AWOL cause I… I’d finally went out of my meds and like, I could not even muster the movement to call them, and be like, “Hey, I can’t come in.”

Brianne: Yeah.

Alex: And so my mother actually had to come and care for me because I was like… I just didn’t call work. I didn’t go to the grocery… I… I had a block of marzipan in my cupboard. That was what I ate for a week.

Brianne: And it’s so hard to explain. There aren’t words for the feeling of it. I definitely don’t have them. I mean, I experience it too, to be clear, but like, I hear people describing this state of like, basically like at home, not able to feed myself. We barely have a language for it because culturally and contextually that only could be a mental health problem.

Alex: Yeah, totally.

Brianne: Either you have an injury, so like, you’re in a full body cast, or you’re so depressed that you can’t feed yourself. And I’m not maligning depression, that is a real thing that can happen, especially as executive function breaks down. But like, that’s not the only thing happening here. And also when it’s happening to you and you’re like, “Yeah, I’m tired, but I should be able to just turn it on, right? Why isn’t that happening?”

Alex: Yeah. That’s it’s exactly… yeah. It’s exactly it. You know, saying you can’t do something, it’s either like mechanical, as you said, like you’ve broken your leg or you’re paralyzed, or it’s psychological and there’s no space for like, “My brain literally won’t send the signals to like…” Yeah, there’s no language. There’s no sort of conception of what can’t means when it’s not just like a mechanical issue. It’s like, “Oh, you don’t want to, and you can’t will yourself to.” But that’s… that’s not even what it was. It was literally like sleep doesn’t work for your body. So essentially you’re in a constant state of sleep deprivation and like, you know, you look at like, “What are the stages of sleep deprivation like in a normal brain?” And I was operating around, like, if I’ve been deprived of sleep for like 72 hours straight. That was like my baseline. So I’d look out the window, and I’d see trees walking around. I was actually psychotic and not in like a colloquial way.

Brianne: Yeah. Not a euphemism.

Alex: Sleep deprived psychosis for like several years.

Brianne: Yeah.

Alex: It was cool in a way, like in a weird way, I kind of miss looking out the window and being like, “Oh, there’s an ent.”

Brianne: My dream world!

Alex: Literally, and it was like really cool in some ways. I think my brain was never more creative than at that point, and I had so many creative ideas that I’ve never done anything with because I couldn’t do anything, also, other than like lie there and think dreamily. And yeah. Like, I couldn’t bring myself the motivation or the energy to go shopping, but also even if I had been able to, I couldn’t do it safely cause by the time my mom got there… I’d sometimes go out with her grocery shopping, like, just to sort of get out and get fresh air. And then like, one time I remember we were waiting at a stop light and a car honked, and I just automatically started walking into the road cause it’s just like… sensory thing. Like, I was literally sleepwalking, even though my eyes were open, and my mom had to yank me back from the intersection. I could not do anything safely. I couldn’t turn the stove on cause I’d forget cause it was effectively like you wouldn’t sleep cook. That’s not safe. Everything I would try to do was effectively like I was doing it in my sleep.

Brianne: Your short term memory is not actually like remembering the chain of tasks that you’ve been doing, so that you can be like, “Okay, what is next based on what has happened before?” Nothing has happened before.

Alex: The short-term memory thing is a whole other thing cause like during this period of a few years, sort of before I moved to the UK and it got like really noticeably bad to everyone, like I would lose things constantly. And I remember like, my dad would helpfully be like, “Well, you just have to put your keys in the same spot every time you come in.”

Brianne: “My habit-building mechanisms are not active.”

Alex: Yeah, I’m not conscious of anything.

Brianne: Yeah. God, bodies. Can I also take a quick diversion, just because you kind of mentioned UK healthcare and Canadian healthcare as you were transitioning in between them? So having lived in both, what was that like? I think because yeah, people, in every country, I will say, like… now I’ve interviewed people the most from Canada, the US and the UK, and I’ve lived in Canada and the US, so I know those two systems better. These three systems are all very different, and most people in those countries know very little about their own system, and also their ideas about the other systems are like usually flat out wrong.

Alex: Yeah. I think maybe the NHS used to be different the got it. I will preface it with that.

Brianne: Before austerity.

Alex: Do you know the show, The Prisoner, from the 1960s or seventies with like Patrick McGoohan? Okay. So he’s like an ex MI6 agent, and he like got on the wrong side of the government for some reason. And they imprison him in this like surreal village in North Wales, and he keeps trying to escape and like he can’t, and he keeps getting caught. I felt like I was in The Prisoner, trying to navigate that system. No matter what you did. They had an answer for you, and it was not… no matter what you did, you could not make any progress. And it felt literally surreal, and that also possibly was partly due to the fact that my brain was like in sleep deprivation mode. Nothing felt real, but it was just everything I tried. When I was trying to get access to the meds initially, and then trying to get a referral, first, they just sort of wouldn’t give me an answer. They’d say, “Okay, well we’ll sort that out.” And then like two months go by, and I’d call them back, and they’d be like, “Oh no, nothing yet.” And so finally it started getting urgent, and I was arguing with them, and I was saying like, “I need these meds to stay conscious.” And so I was asking, “Can I get an urgent referral to the neurologist?” And they’re like, “Well, no urgent referrals are only for things that are serious.” was like, “Right. I literally can’t stay conscious without these. Like, I feel like that’s serious.”

Brianne: ” How do you legally define serious?” is actually a really great question for every healthcare system, frankly, but in this moment…

Alex: Definitely. It was this utterly impassive response to absolutely everything I brought to them. Then I finally did actually get in to see… they did like a semi-urgent referral, which could be at the clinician’s discretion. And so I got in to see him, and he did agree to prescribe me the Modafinil, but was sort of disinterested in any of the other cognitive, physical things I was describing because at that point, my mast cell symptoms for asserting themselves. So he did agree to write me the note for the Modafinil, and two weeks later, my GP surgery still had not received it. So we kept trying to phone back to the neurologist clinic, and they weren’t answering. And then several days later, we finally heard back from him. He’d fallen off his horse literally the day after my appointment, injured himself, and was on indefinite medical leave, and had not yet transcribed the note for my appointment.

Brianne: I have a lot of reactions, and I just can’t put any of them into a single sentence.

Alex: In hindsight, it’s so hilarious cause that is the most British middle-class bullshit I’ve ever heard in my life. I’m sitting here like, “I cannot feed myself or go to work, and you fell off your horse.”

Brianne: And like, you deserve great medical care, but also the system needs to have like a little bit of resilience for when shit like this happens, in addition to how absurd it is as an activity.

Alex: And it was just like utterly impassive. And so my mother argued with that clinic for like two or three days, and they finally agreed… the receptionist or nurse or admin finally agreed to type out the note that he’d written during my thing to send to the GP. And exactly it’s like…

Brianne: That should happen automatically.

Alex: When it breaks down that easily, like… this is an issue. There was always this attitude that we were being the unreasonable Americans. It was always like the slight, like, “You’re being overly emotional about this,” and like this stiff upper lip. I feel so much for other chronically ill people there because the stiff upper lip thing is real. It is real, and it is not good when you’re chronically ill. And then I was able to access the private system. It was not easy. My parents went into lot of debt for that, but that was a nice sleep clinic. And they diagnosed me finally correctly with narcolepsy.

Brianne: What are the diagnostic criteria for narcolepsy?

Alex: You do an overnight sleep test, and basically the overnight sleep test is to rule out any other issues with your sleep, like apnea or restless leg, that could be disrupting your sleep and therefore causing you to be tired during the day. And they also do just look at your sleep architecture to see if there’s any indicative abnormalities. I had like higher than normal sleep efficiency, obviously. I had an oddly elevated level of N3, which deep sleep, which no one has ever been able to explain or seemed particularly interested in, but that… I remain interested in why that was. I suspect it was because… so elevated N3 sleep usually happens in what’s called recovery sleep,

Brianne: Keep your brain on.

Alex: Exactly. And they see how quickly you fall asleep. So you get up to five trials throughout the day space at even intervals, and if you fall asleep within 20 minutes within at least three of them, that’s considered a positive MSLT.

Brianne: Okay.

Alex: So then you’ve definitely got something wrong.

Brianne: Okay. It is not expected for you to fall asleep that fast under those conditions.

Alex: Exactly. Anything less than sort of falling asleep within 20 minutes is considered pathological, if you do that routinely, and then they also check what stage of sleep you hit, and that’s what distinguishes between idiopathic hypersomnia and narcolepsy. So narcolepsy is characterized by hitting REM very quickly, rapid eye movement sleep. And so if you… I think it’s within 10 minutes, if you also on at least three of the tests hit REM within 10 minutes, possibly 15, then that’s considered positive for narcolepsy. If not, it’s idiopathic hypersomnia.

Brianne: Okay.

Alex: I started sleeping within an average of 30 seconds, and I hit REM within an average of the minute.

Brianne: Yeah, that’s fast.

Alex: So it was narcolepsy. Yup.

Brianne: You were like, “Okay. Yeah.” So did you know very much about narcolepsy at that point? Because you’d been in IH groups, was there like kind of some cross discussion or misdiagnosis discussion? How much awareness did you have at that time?

Alex: I had a decent amount of awareness, and it was exactly that. I had joined a narcolepsy group just because there is a lot of crosstalk too, between issues in accessing care. Narcolepsy is marginally easier to access care for just because there are a couple of on-label treatments, whereas for IH, there is absolutely nothing. But in terms of like the average sleep specialist knowing, they know next to nothing about either. Like, the average sleep specialist, they’re an obstructive apnea specialist because they also don’t know anything about central apnea.

Brianne: Yeah. They’re optimized for like identifying and treating one problem, which is a systemic thing.

Alex: And notably the common and also mechanical problem. We’re back to the mechanical. We are good at treating mechanical issues.

Brianne: I want to also just flag this with a fun fact that I know from another interview. So people might know this from having listening, but somebody who I interviewed Randy, who has EDS, who did have apnea also, she couldn’t wear the C-PAP machine because of her skin. So the C-PAP wouldn’t keep a seal around her EDS skin.

Alex: Yeah. That’s the thing, like, even when you’ve got the common thing, unless it’s the textbook version of the common thing, it’s… yeah. So I did know, and it parallels to a lot of like what we’ve seen and talked about with hypermobility because one of the distinguishing things with narcolepsy is also what’s called cataplexy.

Brianne: How is it supposed to and/or thought to work?

Alex: It got a lot of hype, like around 10 years ago, I guess because they came out with a study that found it was really effective at improving wakefulness, and I remember the big thing that they hyped it about was that it has minimal to no side effects. That may be true for healthy people who take it for like, nootropic reasons, like, you know, the mental capacity improvements. It may have no side effects for them. It made me hypomanic. It made my tachycardia worse. It made my mast cell symptoms worse. It made my thermodysregulation worse. It made me have muscle spasms and horrible muscle cramps, to the point that I couldn’t unbend by leg for three days and I had to use a crutch cause I literally just couldn’t unbend my leg. They don’t know exactly how it works. They really love to emphasize that it is not a stimulant. It’s a wakefulness promoting agent. They don’t know exactly how it works, and at least one of the pathways by which they think it works is the same way that stimulants work. So it’s all a lot of rhetoric.

Brianne: Yeah, yeah. It’s like a lot of intentionally misleading technical language.

Alex: Yeah. It’s thought to work sort of through dopaminergic pathways. It’s also thought to have some serotonergic action, which in hindsight, I realize is probably why I was having so many side effects because A, I was also on Prozac at the time because shockingly, I was dealing with a little bit of depression by then, but also I also do not tolerate serotnergic medications well at all because, which I did not know at the time, my mast cell disorder… one of the things mast cells release is serotonin. And once I learned that, it explained why I’ve always had symptoms of mild serotonin syndrome whenever I’ve gone on a serotonergic med. So I was basically experiencing like mild to moderate serotonin syndrome on Modafinil for months.

Brianne: Yeah, Yeah. And with no context for all of these changes, right?

Alex: And like the psych side effects were scary. My mum was like, “Your personality and your whole affect changed on a dime when it kicked in.” It was wild.

Brianne: Distinct. Yeah. It’s so hard in general, like, med side effects… I mean, this episode will come out later than right now, so the discussion might have moved on. But at this exact moment when we are recording in early December, COVID vaccines are like a hot topic. And so I feel like this exact thing that you’re talking about about like, “Yeah, this drug is like really good for a lot of people, and I had every single system impacted.” And it’s like, “Oh, right. We don’t have good side effects data on anything.”

Alex: I feel so deeply nervous about the COVID vaccine. I’m not even talking about on Twitter cause I do not want to deal with what my mentions will look like if I do, but I don’t know if you know about this, but one of the H1N1 vaccines in 2009 is thought to have caused narcolepsy in a lot of people. I don’t think it did in me in hindsight. I thought for a while it might have because my symptoms started getting a lot worse. It’s all complicated too because my mast cell symptoms started getting so much worse. I did get swine flu. I also got the vaccine. Really lucky. I literally was probably pre-symptomatic when I got the vaccine, and then about two days later, I came out with full blown swine flu. And it was in the months after that, that my mast cell symptoms started getting unignorably bad, and it was over the following five to six years that it just progressively got worse and worse and worse.

Brianne: We jumped because of me talking about vaccines, but time-wise did much happen between like, “Aha! It is narcolepsy.” And then like, “I’m living my sort of regular life.” And then like, “Now I have swine flu.”

Alex: So actually the narcolepsy, I found out well after the swine flu.

Brianne: Oh yeah. You were talking about it for that reason. Yeah.

Alex: The swine flu was in first semester of my last year in undergrad.

Brianne: Okay. So yeah. And then you took a year off for your, “Catching up, PS…” Yeah. Okay. Got it. Yes. You did say that, but I did not timeline it properly.

Alex: Yeah. So this is the thing, too: for several years there, the sleep just overwhelmed everything else. I didn’t even notice the chronic pain. It was just in the background. So anyway, I got swine flu, and it made my illness so much worse. So that has been a thing that I’ve been very aware of through this whole COVID thing, but there’s also the fact that so many people… and this, it predominantly happened in the UK, so it was a discourse that I was seeing a lot of while I was in the UK. There are quite a few people who are thought to have gotten narcolepsy as a result of this one swine flu vaccine from this one manufacturer.

Brianne: Yeah. And to be super clear because I know that you know this, but like this isn’t about like vaccine conspiracy. This is literally, like, the easiest example that I can give for context, for anyone listening who isn’t in this conversation, is that like the flu vaccine has… not has egg in it… is technical language, technical language, egg is involved, and so they make an egg-free flu vaccine because egg is such a common allergen, but egg is a common trigger or like one of the proteins in eggs or whatever it is, and so a lot of people who don’t know that they have a mast cell problem or who have like… are having an unidentified mast cell flare because of a viral illness infection may have really serious or like, longer or unexpected mast cell side effects that aren’t being labeled that way by the patient, that aren’t being labeled that way by the doctor, that aren’t being labeled that way by the pharmaceutical company, because it’s just not… saying that it’s not well understood enough is inaccurate, but it’s not distributed well enough would be a more accurate way to say it. And so it’s like, there’s so many conversations about the vaccine coming out, and there’s one like, “They’re not telling us about the side effects. They’re lying. They’ve done it too fast.” And we’re like, “Oh no, no. I believe that the process that they do has been done properly. what you don’t know is that we then have to see what our community experience is because they’re not targeting tests for us. They’re just not.”

Alex: Exactly. And this is also the thing, people talk about evidence-based medicine, and the whole thing with evidence-based medicine is it has the hierarchy of quality of evidence. And the most high quality evidence is the large scale, double-blind, randomized control trial. People say, “The plural of anecdote is not data,” which is, first of all, a misquote, and I can get pedantic. I can get so pedantic about that, but they forget there’s also a thing called the ecological fallacy, which is that large-scale statistics are never capable of predicting an individual outcome. That’s literally not what they’re meant for. They’re meant for population level trends, and I don’t know how so many scientists completely ignore this. So what happens too is when you’re experiencing a side effect of something and you’ve got a relatively rare or poorly understood or poorly recognized condition, and you’re maybe one of the only patients that your particular doctor sees with that condition, you go in and you say, “I’m experiencing the side effect.” And they say, “Well, I’ve never had anyone else tell me about that, and it’s not anywhere in the literature.” So they ignore it. They never send it to the manufacturer. They never write it up in a journal, and so it’s never anywhere else. And so then the next person goes to their clinician who also only has like maybe three or four other patients. And they’re like, “Well, I’ve never heard of that happening before.”

Brianne: Yeah.

Alex: And then meanwhile, you get into the Facebook group with all the people with your condition, you see like 20 to 30% of the people in the group are being like, “Hey, anyone else experienced this?” And like, by the standards of what’s considered a common side effect, within that subgroup of patients, it is a very common side effect, but because those patients are so uncommon within each of their clinicians practices, they never get funneled into the literature.

Brianne: Yeah. And with stuff like vaccines, I know in the US there are like, numbers that you can call to report side effects, to report adverse events, which is great. But it also, I think, frankly, falls into the same hole, which is that if you’re someone who’s had weird reactions to every single thing in your life, and you’ve been told your entire life that you should ignore those weird reactions, you’re not going to be like, “This is the one that I should report because they’re going to take me seriously this time.” You’re going to be like, “Why am I so cursed?” And then move on with your life.

Alex: We’re jumping all over the place, but this is also the thing that I observed when I was in those initial Facebook groups. They’re so individualized, and this was what ultimately led me to sort of… moving towards the disability community once I sort of found out about it on Twitter, was that everyone was asking like, “Why am I so cursed? Why can I not find a doctor to take me seriously?” And I was like, “This is not a you problem. This is a systemic problem.”

Brianne: It’s weird when couple of people are cursed. It’s very weird when there are enough thousands of people in orbit who this isn’t a curse anymore. Yeah. This is still all over the place, and it applies to a lot things, but it definitely applies to chronic illness. As soon as you start talking about it, and then you talk to a couple of people, and you’re like, “Oh, anecdotally, I’m starting to realize that some of these experiences are really typical.” And so you start talking about your typical experiences, and then you find like… that ring keeps expanding of people who are like, “Oh, I have that. Is that typical for you?” And then they see the rest of the ring and they’re like, “Oh shit.” Social media is doing this in so many places for so many experiences and`it’s incredible. And also very sad.

Alex: Yeah.

Brianne: Yeah.

Alex: I mean, I think it’s part of the erasure that happens too, because the whole thing is that, you know, you spend your entire life being told, “This is weird. I’ve never heard of this before. This is only you.” And so of course you learn to think about it in terms of like, “Why am I so cursed?” These individual terms. So it’s a complete shift in perspective when you start realizing, “Actually, no. It is very much not just me.”

Brianne: Yeah. Very much. Okay. So that was an important current events conversation/historical review. So anyway, you were having a ton of side effects to this drug for narcolepsy. You’re in the UK.

Alex: Yeah. And so by this point we were coming up on the end of my contract in the UK, and I basically managed to push through, like I got the re diagnosis in January. I was able to get the Modafinil, and it was awful side effects, but it kept me conscious for like… enough hours a day. I could go to work, push through. Honestly, take some codeine or some Ativan at night so that I could sleep because I could not sleep when I took Modafinil.

Brianne: It has like, sub basements.

Alex: And it sort of started coming back and I was like, “Oh shit, the stuff with my knees when I was a kid. Oh my God.” And this was all just around the few months when I had finished up my contract. I very honestly did not get my contract renewed because I didn’t get any of the work I was supposed to do done. And like, I couldn’t get any other jobs because I had no publication record. I was very undesirable to employ at that point. Let’s face it. I’m still really, I could not get a corporate job to save my life anymore. So yeah, I had to move back home with my parents in rural Ontario. That was a whole thing because my relationship with my parents is a fraught one. And I also, like… I had an awful time growing up where I did. I was the queer neurodivergent kid in a very racist, very homophobic small town in Ontario. So I just like… I was super depressed with the prospect of having to go home. It was like, awful. And my narcolepsy was still not well managed. I was still sleeping a ton. This was the thing too, Modafinil would sorta work for me for like, about a month, and then it would just stop and making paradoxically more sleepy. Which in hindsight, again, it was triggering my mast cells. It was making my mast cells worse, and I was getting like a rebound reaction from it. So I got home, and my focus became trying to get some answers, trying to get some alternative treatments for the narcolepsy and trying to figure out what all the other stuff was. And I did not have anyone else in that town other than my parents. It was like, 800 meters to the nearest bus stop. And also I could get to the library, but there was no bus route that would actually take me home. So like, I literally could not go anywhere unless my parents took me. Cause also by that point, I’d lost my license because of the, narcolepsy, so like I literally could not leave my parents’ house unless they took me. And I mean, they were willing to, but also, like, you’re limited by when they’re available and also by when you’re conscious. And that also does not feel amazing as like a 28 year old, to be chaperoned everywhere by your parents.

Brianne: There’s a lot to it.

Alex: So, yeah. So by that point, I was on Twitter for like, just casual, professional reasons, and I can’t even remember how I found the disabled community, but I remember one of the first things I found was Crip the Vote cause this was 2016.

Brianne: Yeah.

Alex: So I just sort of like dismissed it out of hand. I was like, “No, no, no. I’ve heard of that before, but like, I definitely don’t have it.”

Brianne: I would definitely know if I was hypermobile because I live in this body.

Alex: Yeah. Like, “I definitely… like, my doctors criticize me for not being flexible enough. I’m definitely not hypermobile.” But what was interesting was actually this doctor who reached out to me, she mentioned the mast cell, and that was sort of the thing that made it click because we didn’t even mention this, but I’d have really intense gut issues for a very long time.

Brianne: Yeah. Interfering, right?

Alex: Yeah. And it’s like, honestly, that’s been one of the most distressing sort of symptoms I’ve dealt with because it’s mortifying. A, if you’re out with friends, especially in your twenties, being like, “Hey, I’ve just got to like, go to the washroom,” and then you disappear for 20 minutes, and everyone knows what you’re doing.

Brianne: Yeah. And everyone’s weird about it at that age, I feel like, too. And maybe at any age, depending on their relationship to disability, I guess.

Alex: Honestly, one of the things I love the most about disability is how we can just like, talk about shit, literal shit and people are just like, “Okay, it’s just like part of life.” It’s freeing.

Brianne: There are a lot of bodily fluids that we just have to talk about more, as it turns out.

Alex: I remember like, I had the bathrooms on campus memorized, which were the ones that had the

Brianne: Yeah. Yeah.

Alex: doors, because I dealt with harassment. Like, people would come in and start being like, “Oh my God, why does it smell so bad in here?” And it’s like, mortifying sitting there like being like, “Oh my God.”

Brianne: “This wasn’t an intentional thing where I’m like taking secret joy from your discomfort.” Yeah.

Alex: “I really wish this were not happening right now. I’m with you.”

Brianne: Yeah.

Alex: And I was like, “The bathrooms in the Trinity College library have heavy wood floor to ceiling doors. That is the best bathroom. Let’s go study there.” But yeah, so she sort of mentioned that, and like, that sort of made things click. And so, this was the start of my experimentation. I talked to my family doctor, and she was like reticent to refer me for diagnosis. She was like, “Well, there’s not… just take some anti histamines.” And I was frustrated with the dismissiveness, but I’m also grateful in hindsight because the fact that I started taking anti-histamines and was responsive to them were what helped me to get a clinical diagnosis. Cause this is the other thing, when I finally got in to see the allergist, he was like, “So do you get hives?” And I was like, “Well, no, not really.” And that’s… the symptoms that he was most interested in were not the symptoms that were most disruptive to my life. And this is what I’ve been thinking about so much lately, which is, how do symptoms change over the course of a disease that’s been undiagnosed and untreated for literally 25 years? Your body is going to adapt and respond, and your symptom profile is going to change. And there’s no way to accommodate that within clinical diagnostic criteria. Also somehow, I’ve never had like a positive test result for anything meaningful. I don’t entirely trust that. Cause I’ve also found out later that some of the tests that apparently came back normal did not, so I would love to see my blood panel results for everything at some point. But anyway, essentially I did not have any positive tests, and I didn’t have some of the most stereotypical things like hives, but based on the respiratory stuff I’d had, the gastro stuff I’d had, and the fact that I was starting to respond to the anti-histamines I was taking, I got a clinical diagnosis, and that meant so much because like, six months before that… this is also the thing when people are like, “Why do you care about getting a diagnosis so much?” Six months before that, I’d had an allergic asthma attack because the air conditioner was broken in my parents’ car, and so I was essentially getting like blasted in the face with aerosolized pollen for three hours while we drove to another doctor’s appointment. And so I started having this very slow… it felt like when you got pneumonia, like that burning, on fire feeling in your chest, and it progressed over the course of about five days when I finally called tele-health Ontario, and they were like, “You should probably go to the ER.” They called me an ambulance, and I tried explaining to the paramedics that we suspected mast cell disorder, but I was not officially diagnosed yet. And they decided instead that I’d overdosed on the Vyvanse that I was at that point taking for my narcolepsy, which is a substituted amphetamine. It’s a slow acting amphetamine. I remember they got there and like, I came out to meet them because the thing is my parents’ house is weird. We have a front door, but it was blocked off because they were using that room for storage. So I had to come out around the garage. So I was just watching for them and I came out. I guess they thought that was weird. But I was like, “You’re not going to be able to get in,” you know.

Brianne: Yeah.

Alex: I guess that was suspicious for them. So they started interrogating me about my symptoms, and it’s like 30 degrees out. I have temperature dysregulation.

Brianne: Which is hot, if you’re in America.

Alex: Sorry. Yes. Yeah. It’s not pleasant.

Brianne: Yeah.

Alex: And you know, I have issues with standing at this point, POTS wasn’t diagnosed yet.

Brianne: So were you only looking at… you were only looking at mast cell to begin with also, this was your primary?

Alex: I’d asked for referral to the EDS clinic. I was sort of wondering about POTS, but it was sort of like on the sidebar. That was a thing that no one was even willing to refer me. So I was like, “I’m going to deal with that once I get to the EDS clinic, and hopefully they’ll refer me.”

Brianne: Okay. So yeah, so you were like, “Mast cell, EDS, other shit later.”

Alex: Yeah, and I sort of was like generally aware that I struggled with upright posture, but that was on the back burner.

Brianne: “I prefer to be horizontal all the time. I was not aware it was medical. I’m starting to think it might be.”

Alex: And so like, I’m in tripod pose. I have my legs spread, my hands on my knees. And they’re like, interrogating me. And I’m like panting. And they’re like, “You seem a little agitated,” and I’m like, “Yes.”

Brianne: “This is a very distressing experience. Thank you for noticing.”

Alex: I was like, “Well, I’m struggling to breathe, and it’s made worse by both the heat and by standing.” And I tend to get kind of mouthy with I’m in distress.

Brianne: Yeah.

Alex: Like, this is an autistic thing. I get mouthy and articulate when I’m in distress, and people do not recognize that for what it is. They think I’m like just being an asshole.

Brianne: Yeah. Like, “You must not be suffering that much if you have this much articulation.”

Alex: “If you have the capability to be that sarcastic, you can’t possibly…” I’m like, “No, no. Like, being sarcastic is what happens when things are an emergency for me. I get really sarcastic when I’m struggling.”

Brianne: Yeah, “This is distress.”

Alex: So yeah, they finally like, loaded me into the truck, and I like, because I’m a chronic patient, I brought my little pouch of meds with me. And I gave them to them, and they pull out the Vyvanse, and they’re like, “Why do you have this?” And I was like, “For narcolepsy.” And they were like, “Are you sure you didn’t take a little too much of that?”

Brianne: Yeah, but it’s just like… you’re like, “What are you trying to say?” I mean, and you know. You’re like, “You’re saying you don’t believe me. I know what you’re saying, which is also why I’m fucking agitated right now.”

Alex: And also like, “How do you have this fundamental misunderstanding of what narcolepsy is? Like, literally the problem is I can’t stay conscious. That would be why they gave me a med to keep me awake.” So, yeah. And so I was explaining that like… I also, I told them to count the pills in the bottle. They didn’t. It was great. They literally took me to the hospital, they made me pee in a cup, and then they left me without ever checking my breath sounds, which was just amazing. My parents finally got there, and I was like, “You have to drive me to a different hospital,” where it turned out, yes, I was very bad asthma attack. And they like, gave me so many doses of salbutamol that I lost count and some steroids, and then I was better. The point of that whole detour was because I had a suspected diagnosis and not a real one, that contributed to them thinking that I’d overdosed on, in their words, my, “meth-like” medication, rather than like, I was having an allergic asthma attack that was worsened by the mast cell condition. So anyway, so I finally got the mast cell diagnosis, and this was sort of what started putting the pieces together for me because while I was in the UK, I remembered that some of the patients had been talking about the drug called WAKIX or pitolisant, which was a type of histamine receptor blocker. And it’s an H3 blocker, which is a very specific type of histamine receptor, and it actually acts in opposition to the ones we more normally think of, the ones that Benadryl blocks, which is the H1 receptor. They form a negative feedback loop, and so essentially neurons in your hypothalamus release histamine throughout the day, they bind to the H1 receptors, which causes waking up symptoms in your brain. And then throughout the day, the amount of histamine that’s being released and filling the intracellular space builds up, and so some of it starts to attach to the H3 receptors on the upstream neurons. And the H3 receptors tell those neurons to stop producing histamine as much, so then the histamine levels gradually go down, over time start detaching from the H1 receptors and the wakefulness signals stop, and you go to sleep for the night. And that’s part of how you have a 24 hour sleep-wake cycle. Histamine builds up, attaches to the H1, you’re awake, builds up, attaches to the H3, stop producing histamine, dissipates, you’re asleep. And so what had happened with this group of narcolepsy patients was they’d found that some of them had constitutively less histamine in their brains, and so they blocked the H3 receptor, and that encouraged the neurons to keep spewing out more histamine. It turned off the off signal, essentially.

Brianne: H3 blockers prevent the H3 receptors from realizing that it is time to stop.

Alex: Exactly. Exactly. Yeah. It deactivates the off switch, so you keep producing histamine, and then that histamine keeps attaching to the pro-awake receptors, and that seems completely the opposite of what you’d expect in someone with mast cell. But I was like, “This is too much to be a coincidence, right? There has to be a connection here.”

Brianne: Yeah. If there’s a relationship, this feels relevant.

Alex: The fact that histamine plays a role like, there’s gotta be something going on. And so I just started researching how these receptors work. Like, I didn’t know this was exactly how they worked at the time. This was like months of research. And finally I was like, “Okay, but like, maybe what’s happening is,” there are also mast cells in the brain. “Maybe the issue here is that when these mast cells are spewing out histamine erratically, it’s just disrupting the sleep-wake cycle entirely.” It made sense, too because I had no sleep cycle to speak of. I was also, towards that time, starting to wonder, “Do I have non 24 hour sleep-wake disorder?” Cause it wasn’t just that I was sleeping a ton, and with the Vyvanse, which is a much slower, gentler stimulant, I was doing better. I was able to sleep for like maybe 13 hours a day and not also take an extra three hour nap. And so it was like better, but it was still like… I couldn’t go to sleep and wake up at the same time every day. So there was still something weird, and I was like, “So maybe what’s happening here is that the histamine that’s getting erratically dumped out by my mast cells in my brain has just completely destroyed my sleep-wake cycle, and then as a result…” Even when I was getting sleep, I wasn’t getting quality sleep. And so over time, over the years, it set up this dynamic of utter sleep deprivation in my brain too, which was then the narcolepsy symptoms. I was like, “Okay, I need to artificially reestablish this histamine cycling.” And around that time I asked my allergist, I was like, “Hey, is this possible?” And I told him about pitolisant stuff. And he just sort of was like, “I’ve never heard of histamine being involved in the sleep-wake cycle.” And I was like, “Okay, dude, my research skills are not the ones that I’ve just lost confidence in here, but okay.

Brianne: Yeah. Yeah. Like, “What you think you’re telling me and what you have in fact told me are not the same thing at all.”

Alex: Yeah. And like, it was right around that time I had started taking Benadryl cause that was like, the easier thing to get. And so the Benadryl blocks pro-awake histamine receptor.

Brianne: As I hold up the Benadryl immediately beside me. Yes.

Alex: It notoriously makes you sleepy, right? And that’s because when histamine binds to the H1 receptor, it makes you awake. So it blocks that H1 receptor. So I started taking it at night to restore the nighttime half of that cycle. And this is the other thing, too, so it works the same way… This is me now info-dumping about brains.

Brianne: I want it. I’m so into it.

Alex: As opposed to other anti-histamines like cetirizine or loratadine, so Allegra, Claritin, Reactine, those are the newer generation anti-histamines, and they’re designed so that they are worse at crossing the blood-brain barrier. The whole thing with the first-generation H1 blockers is that they cross the blood-brain barrier really easily, which is why they make you sleepy, because they can then bind to the H1 receptors in your brain. And that’s exactly why they developed these newer ones, making them specifically worse at crossing the blood brain barrier, so that you can get the H1 blocking within your body without having it happening in your brain, which is great if that’s what you need, but also sometimes you need it happening in your brain. So I started taking Benadryl at night. And WAKIX at that point had been approved in the UK and the EU. It had not been approved in the US. They’re now in trials in the US, which is amazing news for so many people. It is probably not going to get approved in Canada anytime in the next 10 to 15 years because, this is another thing about Canadian healthcare, our low drug prices are very good for getting access to common first and second line drugs. Awesome. Very good. Drug companies suck. They also have no impetus to test new drugs in our country, so we do not have nearly as many drugs as you all do.

Brianne: I would like to add… people get mad at me when I say this because it offends people, but the Canadian healthcare system relies so heavily on the American healthcare system.

Alex: Oh yes.

Brianne: Obviously it’s so much more complicated than this, but one reason that Canada can get away with just like never improving… There’s a ceiling on the care that you can get in Canada, and it is much higher than the ceiling of the NHS has… Which is like one of the things, right? Cause in the UK, you hit that ceiling pretty soon, and then you’re like, “Cool, do I wait forever? Or do I go private?” which is a problem. In Canada, you hit the ceiling, which is higher, and a few people are like, “Cool. Do I go to the States?” It’s not as many people because it’s significantly more expensive. It is not designed to serve that purpose, but like, a not insignificant amount of chronically ill people who need LDN, who need Lyme treatment, who need EDS treatment, who need endometriosis treatment, to the States, and they don’t talk about it that much because they get yelled at.

Alex: Yup.

Brianne: This is a real thing.

Alex: I love that you brought this up cause this is one thing I wanted to mention about the UK, too. There was an attitude I ran into, too, which was, “Well, if you don’t like how long the wait times are, go private.” And it’s like, “Okay, but I mean like, not everyone can do that.” On the one hand, there’s this risk with supplementary private systems that, that’s sort of the dismissive attitude you’ll get. They’ll be like, “Well, if you don’t like waiting, then you have an option.” And then meanwhile, here in Canada, when I was like… I was for a time concerned that possibly I had vascular EDS because of the severity of my bleeding issues and because of a couple other medical incidents I’d had that involved scary bleeding episodes. And I was asking about genetic counseling, and I was like, “Is there an option to go private?” Like, maybe I could do a GoFundMe or whatever. They sort of smugly were like, “We’re very proud of having an entirely public system.” I’m like, “I mean, great, good for you. I still would love to know if I can get this care anywhere.”

Brianne: Yeah. There’s so many good things about the way the Canadian system operates. Like, sincerely, extremely sincerely, but the fact that there was just not a pathway for things that don’t like… there’s not a like direction to point people in. That’s like, “Hey cool.” Even if the way… I know this is changing with EDS, but it’s not like, “Oh great. We do have a pathway for people who are difficult to diagnose, complex cases, whatever, whatever. It’s just shitty.” They’re like, “Oh no, we don’t have that pathway. Thank you for coming.”

Alex: I would argue that it’s not even changing with EDS because the thing is we have the clinic here now, and this is my personal conspiracy theory, I think the clinic… it’s not, I’ve heard other people articulate it. I think the clinic exists so that when those people who can afford to go to the States, go to the States, and go to the news about having had to go to the States, they can say, “Well, that was your choice. We have a clinic here.” Because the number of people who I know who have actually gotten meaningful care from there is less than a handful, and I know so many more people who have had experiences that were like… They sent me into a depressive episode with how invalidating they were. They didn’t want to refer me to POTS diagnosis cause they said, again, “Well, there’s nothing you can do for that other than drink water anyway.” And I was like, “Okay but again, I need the diagnosis.” And so like, I had to fight really hard for them to even refer me to the POTS diagnosis. I initially asked them to refer me to the allergist for mast cell diagnosis. They flat out refused, and finally, I went to my family doctor. She finally agreed that time.

Brianne: It’s obstructionist.

Alex: Yeah. They offered me one session of physiotherapy. I declined because I was in such a bad head space because of that experience. I’ve since heard that that physiotherapist has injured several people. So I’m really glad I didn’t go. And they offered me an appointment where we’d have to pay out of pocket to get insoles made for my shoes. That was the extent of what I got from that clinic.

Brianne: That’s not great. Where is it?

Alex: It’s at Toronto General.

Brianne: Okay. It’s in Toronto.

Alex: They have the accompanying clinic at Sick Kids, which I have heard not much better things about. So yeah, it exists in name, but I think in large part, it actually exists just to be like, “If you go to the States, we can say that was your choice now.” I think everyone thinks the grass is greener, and having experienced two out of the three of these systems, and you having experienced two out of the three, they’re all terrible in slightly different ways. You can’t get good care under any of them. If you’re chronically ill and disabled, none of them exist to offer good care for people like us, and the ways in which they deny us care just change very slightly in each.

Brianne: Yeah, like it matters a lot that people go bankrupt seeking a diagnosis in the US and may not even get one. This isn’t even whataboutism. It’s just that, like, that is like the sub-basement, again.

Alex: Yeah, the fact that I was able to like, have an ambulance called for me, and like, we had to pay $45 for it, as opposed to like… I’ve seen people on Twitter crowdfunding cause a stranger called an ambulance for them, and now they’re out of pocket, like a thousand dollars. That’s a meaningful difference for sure. But like, then at the same time I have people from the States being like, “Oh, have you tried this drug?” I’m like, “I can’t.” Even if it’s approved here, there’s no pathway for me to ask for it from my doctors because it’s third line, and they’re just simply not willing. You can only get first and second line drugs here. Unless you go through the five years to get to the specialist-specialist within your field, there’s like no chance that you’re going to be able to get that third line drug and like, experimental and off-label? Forget it.

Brianne: This is actually a really interesting thing because one of my… aside from how it impoverishes people on an immense scale, which is definitely number one, my number two beef with the United States healthcare system that doesn’t get discussed enough is the administrative burden on patients is just enormous. So like, most patients, even most chronically ill patients, if you’re not looking at this level of care in Ontario at least, healthcare is practically frictionless. You have your card, you give it to them. I know it’s not everybody, as a regular person, when you’re seeking diagnosis, it’s pretty frictionless. In the States, as a regular person seeking diagnosis, you are already putting just an incredible amount of cognitive overhead into like, the very basic administration of care and that still blows my mind… how much time it takes up. But then it’s one of those things that in Ontario, for example, that escalates very, very quickly if you have complex needs. So if you need specialized drugs that not all doctors know how to make the case for cause it’s not just a matter of prescribing. If you need funding for your drugs because also drug care is confusing in Ontario. Drugs aren’t covered, but they’re cheaper, but really expensive drugs are sometimes covered by Trillium.

Alex: this is a whole thing. my God. Yeah. But yes, I totally see what you mean there.

Brianne: You don’t hit the friction until much higher up with OHIP.

Alex: Exactly until you need those… I’ll talk about in the same terms as drugs. First tier care which is like your family doctor, whatever, and like second tier which is like maybe the local specialist clinic. Once you get to the third care which is like, the person who’s at Sunnybrook in that one clinic who actually knows about narcolepsy or whatever and that’s the friction.

Brianne: Yeah, it escalates very quickly.

Alex: Yeah, exactly. God. Yeah. The drug thing. We’ll get back to that. But yeah so the H3 blockers… so essentially I was just reading, and like eventually I found that there is a chemical called conessine, which is also an H3 antagonist, H3 inverse agonist, marginal difference in case any biomedical scientist are listening and want to get anal retentive with me.

Brianne: They were about to like, send you a message on Twitter about it.

Alex: “It’s actually not an antagonist. You’re clearly just a quack. Clearly. Self-diagnosing is not very effective.”

Brianne: “None of this language makes any sense because of that one misuse of a single word.” I love it.

Alex: Anyway, so inverse agonist. And it turns out that it exists in some plants. One of which is thankfully used in Ayurvedic medicine and therefore can be bought through Ayurvedic medicine websites. So I bought the syrup and that’s now my daytime medication. And literally, so I started taking the Benadryl and literally the next morning after I had that, I woke up after eight hours and I was like, “Holy fuck. This is doing something.”

Brianne: So just Benadryl first, like Benadryl before bed.

Alex: Yeah.

Brianne: Sleep quality notably improved.

Alex: Yeah. And I started it cause I was like, “You know what? It’s worth a try.” And like, it took a few weeks to order the other one because it was coming from India. So I was like, “Might as well try it, see if anything happens.” And I woke up after eight hours and I was like, “What?” And I didn’t feel great, but I didn’t feel more tired than I had when I went to sleep, which was huge. I’d literally never woken up feeling as tired or less tired… I would wake up feeling like you do after you’ve been on like a bender.

Brianne: Yeah.

Alex: Waking up feeling hung over literally every day. So I woke up after eight hours which… I’d been sleeping. 13 hours straight for several years at that point. I was like, “Whoa.”

Brianne: “Benadryl!”

Alex: Yeah! And then about like a month later the kutaja, which is my Ayurvedic herb arrived, started taking that in the day, and I had energy. I still dealt with fatigue, but I was like awake. I could eat, and I wouldn’t immediately fall asleep after. I could sit in the car and not fall asleep. And it was incredible. It was like mindblowing, and yeah, I had a sleep cycle, and I could predict when I was going to… It was just magical. It was like just unbelievable.

Brianne: Literally life-changing.

Alex: Yeah. I was thinking about this, too, last week cause I’ve also hacked my chair with some snow tires and gotten appropriate winter clothing cause I can wear the clothing cause it’s not too heavy now that I have a chair. And I was outside in the snow, and I was like, “This is…” you know, those videos when you see babies like try cochlear implants for the first time, and everyone’s like, “Oh my God, this is so inspiring,” except it’s not because what they’re actually showing is like distress from sensory overload. But I’m like, “This is the feeling that those people watching those videos think that they’re experiencing.” I’m like, “This is like the most inspirational garbage that you could possibly imagine.” And it’s also funny cause I would tell my doctors about it, and none of them ever really explicitly said it, but they would A, focus in on, “You know, it’s dangerous to take supplements. Who’s your naturopath?” Or allude to the fact that, “Oh, maybe this was all just hypochondria in the first place.”

Brianne: Yeah, like this is the placebo effect from medicine.

Alex: Yeah. “So clearly this was all psychosomatic to begin with.”

Brianne: What really, really strikes me also from your comparison is like, this moment of joy that you’re describing is not a story about medicine coming to help you. It’s a story about you finally like, seeing past all of the crud that medicine has put in your way for your entire life. Literally you’re in this moment like, “I’ve been trying to fix this externally forever, and it hasn’t worked. And so I’ve done something else.” It’s inverted in every way.

Alex: Yeah. This is the thing, too. It wasn’t even about fixing a problem in my body. It was about learning to listen to my body and understand… I love what you said last week about learning your body’s vocabulary. Like, that’s literally been it, and now I feel like I’m working with my body rather than constantly fighting against it. And it’s a fundamental shift from what medicine tries to do, even though in a lot of ways, it seems like there’s no difference. I’m treating a thing. I’m looking at the molecular interactions trying to figure out, what are the building blocks, but it’s literally… I’ve been learning the language of my body and what each of these things means. If I’m flushing, I’m like, “Okay, like, what are the triggers that are happening? I maybe I need to rest today.” I now feel like I’m working with it rather than fighting against it, and it still has limitations. It’s still kind of like a screwy body, but like now I know the ways in which to not fight against that and not make it get worse.

Brianne: Yeah. This is where like, where I’m at in my head of trying to untangle some medical model stuff too, so just get ready for some language. I feel like this is a place where cure discourse really becomes meaningless very, very quickly. You’re like, “Okay, I want research and treatment options and better medicine because it is so clear to me how I have been hurt by the lack of those things in my life.” Literally this entire conversation is like, “Here are all of the times that doctors didn’t know how to recognize the serious thing that was going on.” So like, it is so clear… This is an invisibility thing. When it’s medically invisible and you become aware of that a couple of decades later, it is so clear in retrospect what the impact of that was. And also, I don’t know, now looking back, it’s like, “Oh, as I can read the patterns,” which is kind of like what you’re describing right now, like, “Oh, that was mast cell. Oh, that was the dysautonomia.” You’re like “Suddenly I’m a lot less invested in the idea of getting cured and a lot more invested in the idea of just like stopping before things get that bad.” But that was never an option before. It’s not like, “Oh, before I was an asshole who wanted a cure.” It was just like, “Before I was miserable with no explanation and I wanted to not be, and now I have an explanation, and so my entire perspective on like what a good life looks like has evolved. but it’s not because I was an asshole before.”

Alex: Yeah.

Brianne: I don’t know, there’s something in there that I am not quite at, but I feel like it’s there.

Alex: Honestly, this is one of the main things that my business partner, Liz, and I are trying to unpack in our own work. Cause this is the thing, it has underpinned so much of… we’re like totally pivoting now to the design side of things, but like, it has underpinned so much of the way we think about design, too cause this cure, visible/invisible dichotomy applies to design, too. When you think about the things that are designed for disability, those are always things for medically visible disability, and they’re structured in a very particular way. They’re about overcoming. And we’re just… invisible disabilities… invisible, it’s just not there. And I’ve been like, “I can’t keep erasing myself in the work that we’re doing. We need a model that accommodates that.” And this is a thing I’ve been trying to unpack for myself, too with regard to cure because in a lot of ways, functionally, I would say my narcolepsy is cured. Functionally, I am not narcoleptic anymore. It is still absolutely a part of my identity, but it’s not a part of my day-to-day life. And I would also never want it to be. I would never begrudge anyone with narcolepsy wanting a cure because… like, this is the thing too, you know, Liz and I have talked about like… the thing with cure, too, is that it’s so appealing to the abled gaze that it diverts all the money that could exist for accomodations and for research and for treatment… research and treatment that aren’t cure oriented. But at the same time, there is no accommodation that could have made living with the narcolepsy that I had, and maybe some people with narcolepsy find it more bearable, for me, there is no amount of accommodation that could’ve made that bearable. I could not have survived much longer. Like, I was contemplating not living any longer. Cause it… when I say I was living a half-life, I feel that certain disabled people get really uncomfortable with that, it was a literal half-life. I was sleeping upwards of 16 hours a day. I was literally conscious less than half the time you all are, and when I was conscious, my brain was functioning as though it had been sleep deprived for at least three days, which is literally how they torture people in Guantanamo. It was a perpetual state of torture. There was nothing about that existence that was bearable. So like there’s no amount of accommodation… and I mean, even sort of setting aside how we’re bad at accommodated things like time. One of my favorite design problems to pose to people is like, “How do you design an accommodation for asynchronicity or for non industrial time?” And I love that as a design question, but even putting that aside, that would be great for people with non 24, you know, or delayed phase sleep disorder, but…

Brianne: It assumes that you have a few… There’s not a good language for this because it’s like functionality language, which we already know is not really that helpful. It’s like, “Okay, cool. Let’s accept that, and then only use it personally.” But if we use it personally, the relativism messes it up. But…

Alex: Yeah.

Brianne: You’re just, you can’t use your brain.

Alex: Yeah, exactly. There is no level of accommodation that could make existing in that brain not awful. And that’s such a hard thing to talk about within disability spaces. And so anyway, this is like… the model that we’re developing which hopefully… we’re applying to some grants so that we can hopefully buy ourselves a few months to write cause this is the other thing too, like, turns out we can’t teach and consult and also write at the same time because we’re disabled.

Brianne: Who would’ve thought that would be overwhelming?

Alex: Yeah, we need to buy ourselves a little time. So hopefully, hopefully we can get some grants and actually finally write this paper or whatever it turns out to be. I dunno… I don’t necessarily want it to be a journal article cause I want it to be for the community.

Brianne: That line’s a hard line to navigate: what is for the community and what is for the academy or whatever.

Alex: Exactly yeah. And so I’m calling it the phenomenological model, which sounds very much like it’s going in the academy, but I liked it. So what we’re saying is, the medical and social model are named in deceptively simple ways, and they’re actually… there’s a lot of complexity. We’re hoping that we get all the complexity out of the way in the name.

Brianne: Yeah. Problem solved.

Alex: But essentially we need a model that captures both what’s shared between these categories of disability and what is really genuinely distinct within them. And so where I’m at is that disability, I think, is the state of living within a bodymind that society seeks to erase, but the thing is there are very different ways in which it seeks to erase different disabled bodyminds. And so in some cases, it seeks to erase them by preventing their existence, and that’s gene editing, prenatal screening, abortion. And that is very often people with intellectual and developmental disabilities .That’s sort of where the majority of that is aimed at. Then you have the medically visible, somatic disabilities, and they erase through overcoming and cure, right? So they try to cure you, and if they can’t, they build you a standing wheelchair so that functionally you’re not disabled anymore. And then you have the medically invisible disabilities which they erase by telling you that you’re not disabled at all. And you know, it’s not three neat categories. There’s overlap between them, obviously.

Brianne: Ton of permeability. Yeah.

Alex: Yeah. And like, there are other disabilities that may fit more or less into other categories. There are probably other mechanisms that I haven’t noticed yet, but those are sort of the three key ones that I’ve noticed. And they give rise to incredibly different embodied experiences and relationships to disabled identity. And so when you’re someone who has experienced that refusal, you want to know what is going on your body in a material way. There’s something validating about knowing about the materiality, and you relate to that materiality of disability in a way that I think is very different than if you’re someone who has only ever had your body treated as something that needs to be fixed. And yeah, it’s meaningful. And it, it has such an impact with regard to like policy and stuff too. Like, I keep going back and thinking about the 21st Century Cures Act, which I think was in 2016 or 2017, and the disabled advocacy community was for the most part, very against that. And I remember I was so frustrated because one of the things that was doing was to try and sort of like lower the threshold for approval of drugs that are already being used as off label treatments, and the medically visibly disabled advocates were saying, “This is dangerous. This is going to lead to like really shoddy approvals and them coercively pushing drugs that have been under studied on people.”

Brianne: One thing that also is like… that I know you’re aware of, cause you’ve talked about it, but I just want to like make it explicit, is that not all conditions are primary, and that is not a part of a lot of conversations about healthcare and medicine. And it’s kind of what you just said about your narcolepsy, is you’re like, “My narcolepsy is functionally cured.” But like, the kind of reality of it is that you’re probably never not going to have a connective tissue disorder or a mast cell disorder. But all of a sudden, by being diagnosed properly and like, with access to some of the tools and treatments that can manage this, you’re still disabled, but all of a sudden, all of your like secondary conditions that had previously been labeled idiopathic are comprehensible and manageable and sometimes cured. And it’s a huge thing in our community because like, as we’re seeing that there are more and more structural causes of ME, for example, how do we talk about this? If someone has EDS and they have ME, and their ME was diagnosed first, and their EDS isn’t diagnosed until their ME has been cured…

Alex: Yeah.

Brianne: That’s not a bad thing, and it’s so often framed as like, “They just want to get out of the disability community. They’re abled, blah, blah, blah, blah, blah.” No, a lot of people with medically invisible conditions literally are like, “I am so disabled. I have no interest in not being in this community. I’m like into this identity.” And as you just said, “I cannot live under these conditions anymore.” And I think an important thing to add is that no amount of social support would make this situation livable. Here’s a thing that I don’t want to get into, but that is also relevant around end of life, is that there are two problems if you are disabled. I mean, obviously there are many more, but I’m trying to talk about one. There’s like, you can’t take care of yourself because you don’t have the resources to do it because the government has eroded the safety net or did not create it or whatever it is. That is a societal problem. Also, you could be optimally supported in every way and so sick that that does not impact… it maybe impacts your baseline stress levels if you’re not impoverished, and you’re cognitively functional enough to care about that. But you also might not be if your capacity to be awake, which is like… ME functions differently, blah, blah, blah. But like MCAS creates a lot of these same things. That is a really important nuance and I to rip my hair out when I see people not acknowledge it or like not be aware of it.

Alex: Yeah. One time I almost started a kitchen fire because I went to make tea, and then I forgot within like two minutes. And I went back downstairs, and then like an hour later, I was like, “Fuck, why does the house smell like smoke?” And I went upstairs, and I had literally, like, my mum had one of those really nice enamel painted kettles from like Le Creuset or whatever. The water obviously had all burned off, and I’d melted the fucking kettle to the stove. And it was like, it’s funny in hindsight, but at the same time, I was like, “I can’t make myself a fucking cup of tea safely.”

Brianne: Yeah.

Alex: That’s just so it’s… yeah, it’s like, dehumanizing and horrible. Like, you can’t do anything safely on your own. It’s like, again, like, you know, infantilizing disabled adults… but you feel like a toddler, like nothing… You can’t do anything for yourself, and it’s awful.

Brianne: And when it’s in the middle stage… so for so many people, right? There’s like, when you actually realize there’s so much of a problem that you can no longer pretend to live in the world anymore and then when you find out the name of that problem, and that gap can be… have a lot of different sizes. But like, in that time you’re like, “Nothing is working. I don’t know what it is. And I don’t have the tools to evaluate what’s safe and what’s not.” All the time when you’re trying to have these conversations, people will be like, “Okay, but in an optimally supportive environment, your kitchen would be accessible to you.” And you’re like, “Yes, I want that. And also, I want to know what would make a kitchen safe for me because I don’t know right now, so even if I had $5 million for the best kitchen reno in the world, it would not be a more accessible kitchen.”

Alex: Yeah.

Brianne: So I have a lot of feelings about that.

Alex: Yes. Same.

Brianne: Yeah, cause it’s like, it can hit the first thing where people are like, “What you think we just don’t need support then, because you should just be well enough that you don’t need it?” And you’re like, “No, I think we should have support, and I think we should have the tools to identify what kind of support we would benefit from.”

Alex: Yes. Yeah. And that’s the thing like, for me, diagnosis was the start of finding that language. It was having a framework to understand. And also I think it’s important to acknowledge the fact that I found that language through diagnosis did not in any way come from the clinic.

Brianne: Right. You brought it to them.

Alex: They affirmed the things that I brought to them and put it on paper so that I could apply for benefits and also like gave me a slight sense of official validation that, “Okay, I’m going down the right road here.” But once I had those diagnoses, those answers, through my own research, through other chronically ill and disabled people, I was able to start being like, “Okay, well, this is why this is happening. And therefore, these are the things that I can do to support myself in them.”

Brianne: Yeah. 100%. Yeah. And like you just said… okay, I do want to get back to our main track, but like you just said, like, when you ask people to brainstorm asynchronicity, it’s so difficult.

Alex: Yes. Oh God. Yeah. It literally felt magical, and it was like, the first time I sort of had a glimpse of like, “Okay, I’m going to be able to like, move out on my own eventually.” I have a difficult relationship with my parents, let’s put it that way. And I could not fathom the idea of being there for the rest of my life, and so I was increasingly desperate to find some way to allow myself to move. And this is again, what we were talking about, I literally could not. Like, even setting aside money and affordable housing, I physically could not live on my own because I could not make a freaking cup of tea without setting something on fire potentially, so, difficult. So like, it was when I fixed my sleep cycle that I finally sort of started to have a glimmer of hope that like, maybe I could have some kind of future. Not just like in a, you know, again, in a like productive abled gaze sense, but like literally just like, “I can continue to exist in a way that’s tolerable. This is great.” It was like, it sort of like gave me confidence in the fact that, “Okay, I can do this. I can continue finding ways to treat myself. This is a valid way to go. I’m not just completely grasping at straws here.” And that was sort of like, that’s been the next couple of years. Right around that time, I finally got my POTS diagnosis, and that is like, the only thing where I’ve ever actually had a positive test result. It’s not just been like, clinical. Like, “Sure. Okay. You have HSD or MCAS.” And I actually got that, and that meant a lot cause like, finally I have a thing on paper. So then I was able to apply for disability benefits, which nearly enough money, but I’d been getting $450 a month. So I got $400 to pay my parents for room and board, and then I got $50 for everything else.

Brianne: That’s It’s like $1.10 a day or something.

Alex: Yeah. And I mean, this is the thing, too. This is going back to the complicated Ontario drugs thing. So like the main drugs that I take are anti-histamines, which are available over the counter, and I could get them prescribed. I could get them prescribed, and I get the Ontario drug benefit.

Brianne: Like, “This is working.” Are OTC meds taxed in Ontario? I don’t know that. Or like, I don’t remember. Like, do they have HST?

Alex: That is a good question. I don’t think they are.

Brianne: Just cause… this is a weird thing here, probably also there, about like weed. Stuff that’s sold both recreationally and medically, I know that OTC meds aren’t recreational, but let’s pretend for a second that they are, is it’s like, if you go to the dispensary to buy… I’m in Massachusetts. So a lot of them are… there’s medical dispensaries, and then when they made recreational use available, medical dispensaries basically applied for a license and then started selling recreationally.

Alex: Oh, interesting.

Brianne: And maybe there are rec only now, but I don’t think so because they also got shut down in lock down for a while. Anyway, the point is you go to the same place. If you have a medical card, you don’t pay tax. And if you are buying recreationally, you do pay tax, and it’s taxed at 20% because it’s like a sin tax. Like, alcohol, if you go to the LCBO, and you go to buy vodka, and you’re like, “Why is this three times as much as it would be in the States?” It’s because it’s Canada, and it’s because it’s taxed. And so it’s the same thing. Like, sales tax in the States is much lower.

Alex: Yeah, totally, totally.

Brianne: But it doesn’t matter. The answer doesn’t matter.

Alex: Yeah. I mean, I am extremely not for free market capitalism, but it also does mean you got like a lot of generic drug manufacturers, and you can get off the shelf drug for 10 cents a pill, which can be helpful. It’s fundamentally a policy failure, too. This could be addressed within policy. It’s just, they’re not bothering because they think, “This affects like five or 10% of the people. Who cares?” And they don’t bother to think that those five or 10% are maybe some of the most vulnerable people in our country.

Brianne: Yeah. It’s like, “You don’t realize this, but you’re advocating for a luxury market.”

Alex: Yeah, it doesn’t need to be that way, but.

Brianne: It already is.

Alex: Yeah,

Brianne: We’ve seen it in so many other things. When they become available commercially, they’re available commercially in such a way that they are only available commercially, and they are only available to people who can afford commercial rates.

Alex: Yeah. And I mean, it’s such a weird thing cause I’m like… I want every drug to be non-prescription. Like, I am not for medical gatekeeping, but also you need to understand what you’re doing when you do this.

Brianne: Yeah. Yeah. Like, I don’t know what the is, but this one working well.

Alex: I am all for everyone being able to decide what medications they need to take, when, and just having the doctor there for guidance. But at the same time within the systems we exist in…

Brianne: Yeah. Within the system that we exist in and the number of cracks that you can fall through, it is easy to see how those might not have been accounted for in this particular initiative. Perhaps all of them. Yeah. So yeah. So drug prices for you were also a factor. You’re just aware of it.

Alex: Yeah, exactly. I can not even remember, once again, how I got on this tag. Oh yeah, I continued doing my research and doing my experiments, and like, I just started finding out more and more stuff. It all started to come in together in a way that, if you were like, writing this as a book, you’d be like, “This is all coming together maybe a little bit too neatly.”

Brianne: Yeah. “And?”

Alex: And then they’d just turn and walk out of the room. I remember one time he just was like, “Mm,” and just sort of like turned, and they never explained it. They don’t do them anymore, but they used to do something called the bleeding time tests, which like they do like a little automatic scalpel, and it’d do like a little, like, one centimeter long, standardized depth and width cut in your arm, and they’d time the bleeding. And that would be to identify like, essentially, how effective your clotting function is.

Brianne: Like your coagulant? Yeah. Okay.

Alex: Yeah, exactly. I’d been tested for everything. Beyond the lupus and the AIDS and leukemia I was also tests for like Von Willebrand, for hemophilia, like, just everything they could think of and it was nothing. But I did have a couple of bleeding time tests, and they would always do the spiel at the start where they’d be like, “You know, we’ll let it go for up to 20 minutes. If it goes for longer than 20 minutes, we’ll apply pressure to stop the bleeding so that you don’t bleed too much. Don’t worry. We never have to do this.” And I’d be like, “Don’t worry. You’re going to.”

Brianne: Yeah.

Alex: They’d sort of laugh and be like, “Oh, you’re being cute. Like, no, no, no, no, don’t worry. We literally never have to do that.”

Brianne: Yeah.

Alex: So it turns out that one of the other things that is contained in mast cell granules and which they release when they’re overactive is heparin. And of course, heparin is an anticoagulant, but also, if you have the opposite problem of me and you have a clotting disorder and you’re on it long-term to prevent clots, one of the things that it can cause is drug-induced low platelet count. So I was like, “Interesting.” So yeah, so I honestly, one of the things I desperately want to try some day is to find a doctor who will… there’s… is it protamine? There’s one drug that is a heparin antagonist, and I like, desperately want to try it just cause I want to see. I want to like know for sure, but I also found some like really admittedly, very poor quality old in vitro studies from like the seventies that had found that vitamin C can antagonize heparin. So I started taking a high dose of vitamin C, and I have actually found that… and it’s probably also contributed to by the fact that I take mast cell stabilizers now as well. But, yeah, I don’t get spontaneous hematomas anymore. I could shave my legs and nick them, and then five hours later, not notice that I have like a giant streak of blood down my leg. And then be like, “Oh, that’s why people have been freaking out when I walk past.” I remember one time I was like playing badminton, like in undergrad. And someone’s like, “Oh my God, what did you do to your leg?” And I was like, it was this huge smear of blood. I was like, “I was shaving earlier.”

Brianne: “It was a long time ago. It’s over now as far as I’m concerned.”

Alex: And so, yeah. And like, I don’t get spontaneous hematomas. It used to be, the cat would sit on my chest, and then I’d have an egg on my chest. Or like, I was wearing a watch, and I’d have an egg on my wrist, and that does not happen anymore. So pretty sure, but also I’d really like to try protamine one day cause I just, I want that win, you know?

Brianne: You’re like, “I just want the data.”

Alex: Yeah. I want the protamine, I want the platelet count, and I want the bleeding time tests just to know for sure. Although, it was really funny cause my… the hematologist I was seeing at the time lectured me about the vitamin C and about how, “It’s dangerous to take supplements because you don’t know exactly what’s in them. And you know, we’ve had patients come in, in liver or bone marrow failure.” And I was like, “Okay, well then what can you offer me otherwise? I acknowledge what you’re saying, and I’m open. So what are you offering me?” And she just repeated, “Well we can’t endorse you taking supplements.” And that was just like… it was a circular conversation. We kept going back forth. I was like, “Right. But okay. You understand that I’m saying I can’t tolerate living this way anymore. I’m going to need you to offer me an alternative.” “Well, we can’t endorse you taking supplements.” So I was like, “Good talk. Thank you.”

Brianne: I hate how often and how many medical professionals have been so trained to completely reject… and like, I get it, people look for connections where they don’t always exist. Fair enough. I understand. You probably get a ton of weird theories every day, but at the same time, it’s wild how often doctors will be like, “Well, the thing that you’re doing, that’s working for you. I don’t support.” And you’re like, “I’m confused what you mean by that.” Because it happens sometimes with diet, too, right? Where they’re like, “Well, studies show that diet doesn’t have an impact. So do that if it makes you feel good, but really it shouldn’t.” And you’re like, “Why am I trusting you with anything? It’s fine if you don’t have an explanation, this isn’t your area of expertise, not a big deal.” But when they’re just like, “Hmm, I don’t think that that’s true.” You’re like, “Okay.”

Alex: The allergist, too, the one who had never heard of histamine being involved in sleep-wake cycle, which is like, Chronobiology 101, but whatever. I told them I was taking the Benadryl, and he’s like, “I would not recommend that. I mean, it makes you fall asleep, but it doesn’t give you good sleep architecture. And there have been studies that have found that it causes cognitive decline with long-term use.” And I’m like, “Right. But I mean, it doesn’t give normal sleep architecture to people who have… not mast cell disorders. So when I have an abnormal sleep architecture that appears to be caused by my mast cell disorder. So… you think maybe it might actually work for me in a way it doesn’t work for people who have a different sleep issue?” I don’t know.

Brianne: Yeah. It’s amazing how often that continues to come up, where you’re like, “Yes, I hear that a typical body responds to this in this way, and I believe I’ve been trying to tell you for decades that my body is in fact, not typical. So this information may be irrelevant, even if it is very helpful to people with typical bodies. I don’t know. Maybe.”

Alex: Yeah. There’s like, so little criticality in their training and in what they do. It’s just, it’s absolutely wild.

Brianne: It’s so interesting. I think now, too, as like a thought exercise that is fruitless, to just be like, “What would it look like if we were starting from scratch right now?” Because I can see how much of this is just rooted in a history that is no longer relevant. We know different things than we knew when medical schools were founded to keep women and black people out of medicine. We know different things than we knew then, when the entire medical board was established like, for that purpose to shut down other medical schools and only let white men be doctors. That has shaped all of our care. This is a United States example, although I know that that didn’t only happen here. Our medicine in North America, in the UK, in a lot of Europe… like, we’re all kind of coming from this same one like, “How do we keep everybody else out of this field by making it not helpful and kind of confusing?”

Alex: Oh my God. So this is like, one of my special interests, but looking at like, medieval medical history and like, this is… because one of the things I’ve always been so interested in is like, when did we get into this idea that it is dangerous to treat yourself? Because it’s such a knee-jerk reaction. This is a large part of why I stopped being as active in Facebook, chronic illness groups because I’d talk about this stuff, and I’d have… my posts would get deleted. They’d have disclaimers, and I understand why they’re also wanting to protect themselves from liability. And there are also like… there are predatory, like MLM people who go and be like, “Hey, have you tried this essential oil? ”

Brianne: Yeah, it’s hard for that reason.

Alex: Yeah. But there’s also this knee-jerk reaction that, “Oh my God, that’s so dangerous.” And I’m like, “I’ve literally had serotonin syndrome because of a medicine that I was prescribed, and then also the doctor didn’t recognize the serotonin syndrome because it wasn’t on the monograph. How am I supposed to believe that this is more dangerous?” It is dangerous.

Brianne: Yeah.

Alex: All of this is dangerous, and like, why is this not an acceptable informed risk that I can take? Why is it perceived as so much riskier? It’s really interesting because there’s this case from, I think the 1400s in France, and it’s this woman called Jacqueline Felicie. She was one of the first trials of unlicensed practice of medicine, and so she was a woman who was obviously very well educated because she was reading and using the same texts that these among the first professional academically educated doctors were using. She was using the same treatments so therefore was obviously reading the same texts as them, was often actually having better outcomes. And so she was prosecuted for the unlicensed practice of medicine, and it’s thought that it was in part because she was threatening their professional investment because she was having better success rates than they were. And quackery is a thing that existed, but the equation of self and community and lay medicine with quackery, with risk, it was about protecting these men’s professional investments. And it was all white men because those were, as you said, the only ones who were allowed into the medical schools, and it was all about, in the early emergence of capitalism, protecting their professional investment.

Brianne: Yeah. There are so many things that I know that we can talk about for a very long time, but like, it’s so weird how… so this is super like, Anglocentric, but the distinction between midwives and doctors historically, I know that it’s kind of changed now, was like, midwives are in the community. They’re probably more affordable. They’re probably bartering. And then doctors are like, a gentlemen profession who have gone to like, abstractly discuss their ideas for a few years instead of apprenticing, typically, or like you’ll apprentice after. And then be like, “Okay, cool. I know everything I need to know, and also I don’t get my hands dirty.” It’s just an entirely different way of approaching somebody’s body, and one of them is like, a lot more about knowing that they’re a person than the other one.

Alex: That’s exactly how you get medically invisible illness, right? Cause when your entire practice is about mapping the physical issues, the physical lesions or whatever of the body, all of a sudden you lose all the things that can’t be mapped.

Brianne: Yeah.

Alex: And that doesn’t even mean that there is nothing to be mapped, but it means that they haven’t been mapped yet.

Brianne: Yeah.

Alex: And there’s like no impetus to map them because all your concern is mapping.

Brianne: Yeah.

Alex: If you can’t connect it to the physical site in the body, suddenly it’s psychosomatic, it’s moral, it’s willpower.

Brianne: And it’s not that guy’s problem anymore.

Alex: Exactly. It’s either, “Fix it yourself. Improve your life. Stop thinking about your body so much,” or “Let’s refer you to a psychiatrist.” One or the other.

Brianne: I love it here. I have one more question that I think I might have actually skipped over. When did you find out you were hypermobile? When was that identified for you?

Alex: Yeah, it was when this doctor who is hypermobile reached out to me, and I think I may have said “No, I don’t think I’m hypermobile,” to her, and I think she was the one who was like, “Yeah, no hypermobility doesn’t mean what you think it means.” And it was at that point…

Brianne: “Okay. But have you checked?”

Alex: Yeah, exactly. I think she sent me or mentioned to me the Beighton score, and I saw the thing with the knees. And I have always had backwards knees. I’m the kind of person that someone would take a picture and like, post on Reddit being like, “What the fuck is with this person’s knees?” My ex really liked Mass Effect effect, and I wasn’t into Mass Effect yet at that point. I wasn’t into video games when we were going out, but he really liked the character Tali. And said that part of the reason he liked the character Tali was because she was… I don’t know if you know about Mass Effect.

Brianne: Not enough.

Alex: Okay. There’s a race called the Quarians, and they have to wear environmental suits because they had to escape their home planet and they’re allergic to the air everywhere else. So they have to wear environmental suits, and also, their legs bend backwards. So he liked the character Tali cause she reminded him of me, and in hindsight I’m like, “Oh yeah. I mean, maybe we should have connected some dots there.”

Brianne: You’re like, “That is actually very accurate in ways that I would not have understood at that time.”

Alex: Yeah. So anyway, so the knees thing, and I was like, “Oh fuck.” This is the very first thing I started complaining about that got dismissed by doctors was, I learned left from right when I was about four because my left knee was the one that always hurt.

Brianne: “As a euphemism, it feels like what I imagined it would feel like if this actually happened.”

Alex: Yeah. And then I was like, “Oh, they actually were cool.” And then I started realizing, I was like, “Oh wait. My shoulder sort of like clunking, and that it feels like it’s in the wrong spot. It actually is.” I remember I was following, I think it was Ace Ratcliff. It was one of the first EDS people I followed. I remembered them talking about how like, their fingers dislocate multiple times a day and how like, they can’t peel an orange. And I was like, “Oh, wow, that must suck. Like, I’m not that bad.” No, I was that bad.

Brianne: That’s the worst part, I think. If you come here into this specific way, which a lot of us do, where you’re like, “I realized I was sick. I like, become a part of the disability community. I’m like, identifying with certain parts of my experience, and I’m reading these other experiences like, “That sounds terrible.” Subluxations and dislocations, I think are like, I mean… of course for hypermobility, like the most common, but it’s like, I feel like I was reading people talking about subluxations for years then it wasn’t until I dislocated my shoulder this March that I was like, “Oh.”

Alex: Yeah, I was still sort of learning what it felt like and what it meant. I’d accepted the fact that I was hypermobile, wasn’t diagnosed yet. Someone who I knew through an illness group donated a shitty transfer chair to me. Cause I’d sort of like… I was sort of like jokingly talking about like, “God, I wish I had a chair.” And they’re like, “Wait, do you like, mean it?”

Brianne: Yeah, “Do you really want one?”

Alex: Yeah. They worked for a vendor, so they donated this free one to me. And it was really great in the way that it helped me to learn that I could benefit from a chair, but also it was terrible for my shoulders because it was 35 pounds. It was a folding frame, so it was not… you know, it had terrible suspension, and the wheels were too far back, you know, it was just bad. I got accepted to a conference on… I think it was chronic pain, actually. I was still sort of doing like, some conference presentations here and there, hoping maybe I could do a PhD eventually. And my parents, as a Christmas present, they were like, “Okay, fine, go and visit your friends in the UK.” And so I took my chair, and I was like wheeling around London. And like, I remember I was like, almost crying, and I do not cry. I’m not a crier. Not as a bragging thing. Like, it actually causes problems in like, medical spaces. I’ll be like, “I’m in level 10 pain.” And I’m like, not crying. I’m just like stone faced. I was almost feeling ready to cry because of how badly my shoulder hurt, and I spent the entire week wheeling around London like this, and then I got home. And it was still really bad. And then someone in one of the EDS groups that I joined on Facebook was talking about how to reset your shoulder. And I was like, “I wonder, maybe I should try this. Maybe that’s what’s going on.” And then I managed to reduce my shoulder and this massive clunk. And I was like, “I’ve been wheeling around with a dislocated shoulder for a week and a half?”

Brianne: Yeah, mine was out for a week, and I didn’t realize until it popped back in, not on purpose. And I was like, “Oh my God, what are you doing?”

Alex: Yeah. And the thing was, it hurt horrifically when I’d do anything, but it wasn’t actually the dislocation. It was the muscle seizing up. My dislocations themselves don’t really hurt. They’re uncomfortable. I’ve used the metaphor of the pebble in your shoe, but it literally, I feel like I’ve got a pebble in my joint. Like, something’s grinding there that shouldn’t be, and now I know what that feeling means. Back then I didn’t know what that meant. It was like, “Oh, I’ve just got that weird pebble feeling.”

Brianne: And if you tell a doctor that you have roving joint pain, they’re like, “Cool, you have an inflammatory problem.” Not, “All of your joints are bad.” They’re like, “Either you have one bad joint or you have an inflammatory problem. If you have all bad joints, it’s not a joint problem.” And you’re like, “Oh, that’s comforting. Ha ha ha.”

Alex: Occasionally I would convince someone that maybe like, let’s just rule something out, and they’d test me for like, C-reactive protein and like, maybe ANA just to check for lupus one more time.

Brianne: Yeah. Or rheumatoid factor.

Alex: Yeah. Yeah. And those will come back negative. And then, this is a whole other conversation, but like, the fact that you’ll say there’s something wrong, they’ll test the most common, obvious thing. It comes back negative and that’s just the end of the road.

Brianne: Yeah.

Alex: And then they wonder why people are disappointed when their tests come back negative. It’s like, maybe because they know that that’s the end of the road, and they’re not going to get any more prospect of help.

Brianne: Yeah. Cause it never means, “Let’s ask other questions.” It always means, “So your question is answered,” and you’re like, “To be clear my question wasn’t, ‘Do I have arthritis?'”

Alex: “It was, ‘What wrong with me?'”

Brianne: Yeah, “What is wrong with me?” So by answering the question, “Do I have arthritis?” with, “No,” that’s all we’ve answered. Yeah.

Alex: Yeah, but anyway, yeah, with the pain… so like, for me, the dislocation itself doesn’t hurt, but what hurts is my muscles seized up to protect the joint. My muscles are being like, overly helpful, but actually really ineffectual because they’re like, “Oh, we’re going to help,” and they seize up. And then they just clunk it out again. And I’m like, “Why did you do that? Please stop helping.”

Brianne: “You’re not holding it right.”

Alex: It’s like when my dog is being uselessly helpful too, I’m like, “You’re not helping in the way that you think you are.”

Brianne: Yeah. Now a couple of months ago, I started PT here for hypermobility, and I have now just like, back exercises and very slowly, I’m realizing that I haven’t been taping or bracing my shoulder as much, and my shoulder has been a problem for years and years and years. And I’m like, “Oh, I’ve been seized for years and years and years, and I’ve just been holding it in the wrong place.” And I had no idea why my shoulder was just hangy all the time, but it’s like, addressable a little. I still have a problem.

Alex: This is one of my other self-treatment things, and honestly, this is my most witchy, non-empirical thing. I was like, going to the local herb farm and just buying some plants for myself when I was getting ready to move to my new place, and they had a plant called maral root. And they mentioned that it’s used to help with muscle endurance in athletes in Siberia. I just had a hunch. This is the most non-scientific, whatever. Like, once again, “Hi doctors. I am obviously a hypochondriac.”

Brianne: Yeah,

Alex: But I was like, “Hmm.” And so I bought this herb, but it’s… you use the root, and it’s like, a pain in the ass to harvest. So instead I just ordered some of the powdered root, and I started taking it. Cause this is the thing, I would get to a point like, when I was doing any kind of physical exertion, whether it’s deliberate exercise or… I was actively allergic to exercise for one thing. This was a whole other thing in my life. They’d tell me to exercise, and I would manage to stick to it for a couple of weeks. And I’d always feel like I had the flu after. I would be sneezing. I’d have the runs. I’d feel like I was running a fever. It turns out, mast cells? Triggered by exercise. But I also, you know, that lactic acid feeling in your muscles? That burning feeling that builds up? I’d hit that within like, five or 10 minutes, and then it just wouldn’t go away. It just wouldn’t dissipate at all. I suspect there’s something with lactic acid metabolism, and like, a lot of people with ME/CFS have been looking at that too, like mitochondrial issues.

Brianne: That sounds so much like an ME thing, yeah. Which is kind of a specious…

Alex: There’s so much overlap.

Brianne: Yeah. But anyway, the research is happening under that umbrella is the best way to think about it.

Alex: Exactly. Yeah. And so I’d sort of had this hunch that there was like, a lactic acid issue just because of that sensation. And I was like, “Hmm.” They use it to improve like, oxygen metabolism, and then sure enough, I took it. And like, the next day, again, this is like, it sounds fake cause I’m like, “The next day I was better,” but like, I was wheeling up a hill, I started to feel the burn, and I stopped for 10 seconds, and the burn faded away.

Brianne: As it is supposed to.

Alex: And I was like, “What?”

Brianne: Yeah.

Alex: We wheel like, on average five kilometers a day now. And like, I have literally never able to exercise in my life. And Like, the runner’s high, like, the first time I felt that I was like, ” This feels really good. This is why people like exercising. Oh, I get it now.”

Brianne: “It does feel good.” Yeah.

Alex: “I like exercising. Who knew?” I’m not just like, lazy, and like, trying to put it off and like, no pain, no gain, and I’m just a wimp. No, actually it feels completely different.

Brianne: I think that’s also like, one of those clarifying moments about invisibility and also when things work really quickly, is that you look back, and you’re like, “Oh, nobody believed me because things weren’t working the way that they were supposed to be.” Like, “That was also a defining feature.” and then you get to this point, and you’re like, “Oh yeah, no, they had no idea. Like, I had no idea. I assumed everyone’s embodied experience was similar and I was handling it poorly, and they had no idea, and so they were treating me like I was responding poorly, and that’s what made it invisible.

Alex: Exactly. It’s yeah. There’s just this assumption… Like, when we see discourse about like, healthy versus unhealthy food on Twitter, I’m like, this is super gross and TMI, but like, I can eat quinoa and vegetables. Like, I’ll make myself a really nice salad, and the next morning I will have a really nice salad in my toilet bowl.

Brianne: It’s not doing what it’s supposed to be doing.

Alex: Pristine in the toilet, really difficult to flush. And I’m like, “You can’t tell me that things are universally healthy or unhealthy.”

Brianne: And like, that I’m getting the nutrition from this meal.

Alex: Right? And it’s the same with exercise. if your body’s working properly, exercise will help. And this is the thing, now that I exercise regularly, my pain levels are at the lowest they’ve ever been. Like, I am in so much less pain consistently, but I had to get to a point where the exercise was not actively making me sicker.

Brianne: It can cause harm. We look at… not, we, we don’t, but the culture looks at exercise as like, neutral at worst. It’ll either help or it will be neutral, and that is a very dangerous perspective, as we know.

Alex: Yeah, yeah.

Brianne: So you realize your shoulder had been dislocating. Have you to a doctor to ask about hypermobility yet? Or is that something that you do in this?

Alex: At that point, I think I was waiting on the referral to the EDS clinic. When I got the referral to EDS clinic, they begrudgingly diagnosed me with hypermobile spectrum disorder, which is still… on paper, from the most official people who are most entitled to name these things in this province, officially, I have hypermobile spectrum disorder. All of my other doctors just go ahead and call it hEDS. So I call it hEDS. I’m like, “Fuck it. You know what? I have at least three other MDs calling it that. No one else understands HSD. That clinic was awful. I have hEDS fine. Whatever.” I’d sort of recognized it slightly before I went to the appointment. I got the official diagnosis, whatever it was, like a couple months later. I think it was later that year, and then the mast cell and the POTS sort of followed from that all sort of within the span of a year. Finally, all the answers came together.

Brianne: Magically. All on their own.

Alex: It’s really funny too, because… so predictably, when I first brought the possibility of EDS to my family, doctor, you know what the response was.

Brianne: That’s really rare.”

Alex: “It’s very, very rare. No one has that.” Yeah, exactly. And it’s also really funny cause I remember I’d been in the ER that summer cause I was having chest pains after I’d started on another stimulant for my narcolepsy. This was around the time I was starting to learn about it. I didn’t think I had it yet, but I knew some people who had it. And I remember we were sitting in the gurney with the curtain around it and the ER doc was in the next one talking to a kid who’d had a laceration. The mother was explaining that he had Ehlers-Danlos and the doctor was like, what’s that? And I remember I was sitting there and I was like, “I want to say it. I want to say it. I want to say it.”

Brianne: “I know, pick me.”

Alex: But anyway, so then I brought it to my family doctor, and she was like, “It’s incredibly rare. I think we only have one other person.” I was like, “I know who that is. It’s that kid from the other month.” And then it was really funny cause I was talking to her… I had a tele-health appointment with her last month, and she’s got four or five other patients with EDS.

Brianne: Mysteriously. Yeah. You’ve talked about this in general a bunch of times, but it’s like, so interesting how they also flag what makes something worth looking into. Doctors have seen nobody, so they think it means nothing. And then they see one and then they like… or have learned about it, so they have like, the template patient and then their one patient and they’re like, “Oh, okay. This is the shape of this disease.” And it’s like… it probably isn’t. The only reason that I got referred to a geneticist is because I’m tall and my neurologist… my neurologist, I like. This is not really about him, but like, the thing that he kept saying out loud as he was like, “Yeah, we should rule this out,” was like, “because you might have Marfan syndrome because you’re tall.” And I like, don’t really have Marfan’s characteristics, but I am tall. And like, it’s kind of like vascular EDS only, obviously vascular less well known, but they’re like, “Oh, that one has complications that we know that we want to watch out for, so we should rule it out.” Vascular EDS and Marfan syndrome both get that response, but like, hypermobility spectrum/hEDS are like, would we diagnose it?” You’re like, “Oh, I don’t know, because it’s in the same family of disorders, and we’re probably going to find a lot of really serious complications down the road. And if we already know what the patient population is, then we’ll have the patient population already. Like, a million reasons. I don’t know.”

Alex: I also know a couple people, even with vEDS who’ve had that question asked, and they’re like, “Well, it’s fatal and incurable. Why would you want to know you have it?” And it’s like, “Because if I go to the ER and I’m like, ‘You need to image my chest right away,’ they will. Yes, it’s potentially fatal. It’s less potentially fatal if I can get the right treatment very quickly, which is kind of imperative.”

Brianne: Yeah, like, “If I know about it.”

Alex: Yeah. When you’ve got like, an aortic dissection, you kind of want to get the right treatment fast. It’s kind of like, the big thing that determines whether it’s going to work or not. And that’s kind of dependent on having a diagnosis.

Brianne: Like, as we more about like, and this is so relevant to the ME structural stuff, it’s like, “Oh, okay.” And we’re learning a ton of other comorbidities that were like, never seen as that before, and guess what, if you don’t have an EDS diagnosis, no doctor is going to screen you for like, CCI, for outlet syndrome, for whatever it is, tethered cord. You’re not going to get randomly screened for that, so all of a sudden we have this huge problem. It’s a huge bottleneck where people can’t get screened for complications because no one will ever diagnose them. I know a lot of people know that. Now I’m in such a Twitter bubble from the year that we’ve all had. This whole batch of episodes. I think I say this in another episode. This whole batch of episodes is going to be so weird because there’s been a very intense Twitter conversation happening all the time, and if you’re a listener who happens not to be aware of it, you might notice it like shift in tone. Not that it’s different show, but just like it’s been immersive. It’s been an immersive year. So you have HSD/hEDS, and I’ve definitely talked about this distinction before, so we don’t need to talk about what that means… “distinction,” I said with air quotes. Okay. Cool. So you got to that point, blah, blah, blah. Over the course of it, we’ve been out of order a bunch of times, which is totally fine, but let’s imagine, you’re at your parents’ house. You’re starting to get some stability. You have some names. We’re so close to the present, really. Tell me more.

Alex: Alright. Yeah. So, I mean, at that point it was really… I needed to find a way just to afford moving into my own space, and I mean, this was a struggle. I was also… by this point, I was able to apply for ODSP and get ODSP and have slightly more money, not really enough to live on, but like, slightly more, enough to occasionally buy medications and things.

Brianne: Important things.

Alex: While also still having to live with my parents because. I couldn’t afford rent in a real place. So I applied to like, social housing. This is the most “social model” my disabled experience has ever come. Like, this is the most relevant the social model has ever been to me. The wait list for social housing… I got on the priority waitlist because of the issues that were going on at home and because for my mental health, I desperately needed to get out. So I got on the priority waitlist, which was at least three years. The priority waitlist, for people who desperately needed to get out of their living situation because it’s unsafe for them. The regular waitlist was upwards of 10 years. And I remember I was like, emailing them cause I was asking… I think there was like, one space that I was like, thinking of applying to, but it wasn’t ideal. And I was like, “If I get this and then decline it, is that gonna bump me down the waitlist?” And they’re like, “Don’t even worry about that. We just approved someone who’s been on since 2001.” And I was like, “Okay, that’s great.”

Brianne: Heartening!

Alex: Yeah. I was looking at house share situations in Toronto instead, and this is the thing, like, none of those are accessible. They’re all like in old houses on the second floor. And I was like…

Brianne: Yeah, Toronto… everything… There’s high-rises that are maybe elevator accessible, but there aren’t a ton, and most of them are condos, which are super expensive, and everything else is stairs. And every bathroom in a public business is in the basement.

Alex: Yeah. It’s so great. And I remember I was looking on the Toronto Life, “How to Find a Place to Rent Affordably for Millennials,” and they were like, “Look at older walk-up buildings because they’re cheaper.” And I was like, “Thanks. That helps.”

Brianne: Yeah. cheapest apartment in Toronto was a basement apartment that didn’t have a window in the living room, which is illegal for egress reasons… well, it doesn’t need one in the living room. There weren’t any. There was like a tiny one in the bedroom that I could not have fit out of. That’s what makes it illegal. But you’re like, “Great. I want to live in this environment as a person who realizes that my body has a lot of very specific needs.”

Alex: Yeah. It’s great. I also was able to apply for something called the portable housing benefit, which is also for people who are on the priority waitlist, who very much need to get out of their living situation. And the idea is it tops up, whatever you get from your benefits, it tops you up in order to be able to get a place on market rent. But the thing was too, they couldn’t tell me how they calculate it. So I had no idea, and they’re like, “Well, we can’t tell you exactly.” And I was like, “Well how do I know if I can find a place? I don’t know how much you’re going to cover me for. I don’t know if any of the places I’m looking at are even vaguely reasonable.” And they like, couldn’t give me an answer.

Brianne: Is it like, it wouldn’t be determined until you filed your taxes and it was determined for you?

Alex: It wasn’t even that cause like my taxes… I wasn’t even earning money. The best they could tell me is, it depends on the region you’re in, the specific rent of the apartment, and your income.

Brianne: “It’s a mystery formula that we can’t tell you.”

Alex: Yeah, they also couldn’t tell me how any of those three things were actually related in a way that

Brianne: Yes! Just for context for everyone else, Elliot Lake is the retirement capital of North… of, not North America, that would be a big lie! Of Northern Ontario.

Alex: With slightly elevated background radiation levels because of the older uranium mine.

Brianne: One of my favorite things that I once knew about Elliot Lake is that like, because it’s the retirement capital of northern Ontario, they have a really active senior population that like does like, citizen on patrol, like, neighborhood watch stuff.

Alex: Nice.

Brianne: This is really out of date Elliot Lake information. I just want you to know, but that’s my favorite Elliot Lake fact. I’m sorry, everyone listening. Most of you will not have Elliot Lake facts.

Alex: Extremely specific Northern Ontario knowledge. Yeah. So I was like, “That’s like, the only place in Ontario you can get a condo for like, less than 50,000.” And I was like, “Maybe I can like, hang in here for like, two or three more years, not spend money on anything else, just save up my ODSP checks.” But like, things were getting really bad at home. So I went back on the portable housing benefit. I finally got them to agree… I was like, “If I send you a list of apartments, can you estimate what I would get for that?” So I sent them like, five apartments from every city in Ontario, and I figured out roughly which city I could get the best balance between the benefit and like, the average rent for a reasonably accessible one bedroom. I say, reasonably accessible… with an elevator. That’s literally all I’m looking for here. This is the thing too. It’s always… I love it here. Like, people’ll be like, “So what led you to decide to move to Kingston?” And I’m like, “Well, I looked at every metropolitan area in Ontario, and I compared the average rent for a one bedroom in a building with an elevator with the amount that I could get in that city on the portable housing benefit, and Kingston had the smallest discrepancy.” And they’re like…

Brianne: “Sounds fun.”

Alex: Oh, it’s like… conversation killer right there.

Brianne: Yeah. My situation is not the same, but kind of the same, which is that I was like, “I need to live somewhere that’s mold-free, and I need to live in a housing market that allows me to do a proper mold screen, and that ruled out every city on this continent. So here I am.

Alex: Yeah. It’s like, very… I love it. They’re expecting me to be like, “Oh, I have friends here,” or, “Oh, it’s a really pretty city.” And I’m like, “Nope, Nope, literally just… smallest gap between I could afford and what I could get.”

Brianne: “You were doing something right, Kingston. You just didn’t know it.”

Alex: Yeah. And it’s funny too, cause it’s not even like the rent here is particularly low. I think it’s skewed because of the way they calculate average rent for one bedrooms. Cause the thing is Toronto has a lot of like, basement units and like, house shares, which artificially dragged down the calculated average market rent in comparison to like what I actually needed, whereas Kingston.

Brianne: There’s probably just not that tier… or that tier of housing is much smaller.

Alex: Yeah, exactly. So it just wasn’t skewed as much. I moved here, and yeah. And so like, around two and a half or so years ago, too, I also started working again in a very chronically ill, disabled way. I’m working with another chronically ill person, Liz Jackson. We met each other through Twitter. We both followed each other and then sort of discovered how aligned we were in the kinds of work that we wanted to be doing. Liz had a little bit of funding that she’d been able to secure. And so we started working together, and like, I sort of wasn’t able to work very effectively until I left my parents’ house and was in an environment where my mental health was a little more stable. But yeah, that’s like… that’s sort of where we’re at now. Like, I moved here. I use a wheelchair so I can actually get to the grocery store, which is rad. It’s nice being able to like, buy groceries

Brianne: This is when you’re like, “Ah yes. It is nice to have independence through accommodations. I understand that model completely right now.”

Alex: At the same time I wasn’t very confident with my chair, and I also hadn’t quite put together the muscle fatigue exercise thing yet. I wasn’t using my chair frequently enough. I still… even up to last year, I used my wheelchair like, maybe 25% of the time when I absolutely could not do the thing without using it. So like groceries, because I physically cannot carry groceries that far without bad things happening. So I would use the chair for that. But like, when I was walking the dog, like, “Technically I don’t need it to walk the dog. I can walk like, a kilometer without my chair. And yes, it hurts. And yes, I get annoyed at her for stopping to sniff because I’m starting to get dizzy, and I will have a panic attack when someone comes up to say hi, cause I don’t know how long they’re going to keep talking and I might pass out. But like, technically I can walk.” I wasn’t using it enough, and I hadn’t built up the arm strength. So then when winter came, I just didn’t go out. Winter is awful cause like, slippery surfaces and hypermobility do not go well together. And so like, when COVID rolled around, like, it’s literally really just as though my winter has lasted for 11 months now because nothing changed. When lockdown started, I’d been ordering groceries. I’d, at most, been going a block from my house with the dog because I couldn’t walk on the snow. So like, really literally nothing changed when lockout started in March. It was just like winter kept going for me, but at the same time, I started realizing I couldn’t take her to the dog park anymore. So I was like, “Okay, I’m going to start using my chair so we can go farther.” And then I was like, “Oh, everything hurts so much less now. Maybe I should just use this all the time. Wild.” And then, so like, we started… they built a bike trail just behind here last year. And I was like, “Oh, let’s try using it.” And we went like, farther than we’d ever gone. And like, my shoulders were killing me, but I pushed through and like, you know, the delayed onset pain. I’d never really tried to push through that before, but I actually, before when I tried to push through it, it would just get worse and worse and worse over the course of days. So it never seemed meaningful, but this time I like, pushed through it and got through it. Three days later, I was like, “Oh. now it’s not hurting to do this route again.” It’s like, you do the same thing over and over again, and it stops hurting as much, which apparently is also how exercise is supposed to work for normal bodies.

Brianne: And they’re like, “No pain, no gain.” And you’re like, “Oh, okay. Yeah.” And meanwhile, you’re like, “I’ve just been dislocating my shoulder weights. Is that what you meant?”

Alex: Yeah. I’m like, “Oh, the pain doesn’t keep getting worse and worse. It eventually stops. Okay.” So now we just, yeah… we did 12 kilometers the other day, which was like… I’m so proud of. We went all around the city. It was amazing, and it’s good now. It’s just so weird to have very basic things in your life work the way you’ve always heard they’re supposed to work.

Brianne: Yeah. Especially cause it’s like, at the beginning, it’s like, “It’s weird that people always say that because it is not match my experience, and so I don’t know why they keep repeating it.” And then eventually you’re like, “Oh, it did match their experience.” And then eventually you’re like, “And I can find an adapted… like an alternative.” There’s three different steps to realizing that, in fact, wasn’t meant to be as terrible as it has been for most of your life.

Alex: Yeah. And also like, the fact that I was finding it terrible didn’t just mean that I’m like, a giant wimp, apparently. Like, actually no, the things I’m experiencing would make most of these, “No pain, no gain,” exercise people cry.

Brianne: Yeah, they would not be like, “Oh yeah, this is nothing. Push through it.” They’d be like, “This should have medical attention.” You’re like, “Interesting. Interesting.” Yeah, it’s wild. This is another beef thing. When people are like, you know, “Sick people who just want to get some stability actually want to get better and not be disabled anymore.” This is literally the distinction that you described. You’re like, “No, I just want to live in the world where things work the way that they’re supposed to, but it was not clear to me how to create that world for a really long time.”

Alex: Yeah, this is… so I’ve also now gotten a shoulder brace. And it’s really funny, cause it’s a whole other thing. I’m like, realizing that when I wear it and when I wheel and when I walk, I’m like, using completely different muscle groups. When I was a kid, I used to be like, “I wish I could get it back brace,” which again, really weird thing for a kid to wish for. Like normally that’s not, your dream as a kid. And they’d say, “Well, no, it’s just a muscular problem. What you need is exercise.” But the thing is, when all of your muscles and joints are like, hanging and falling all over the place and your muscles are trying to do the work of holding your joints together… it’s very hard to focus on activating a particular muscle group, when everything else is wrong.

Brianne: Another thing that’s really difficult about talking about dynamic mobility like this, is that so much of our language around… mobility disability? Yeah. Those are the right words together… was developed by scholars who were paralyzed and it’s like, “Hey, that’s cool. That’s just like an, in every way, different experience.” Everything about it, basically.

Alex: Yeah. Well, this is like the whole social model too. Like, this is… we are going to get flamed so hard on disability Twitter for this, but the social model was developed by people who were paralyzed and I think, who had muscular dystrophy, medically visible disabilities. And that’s not to say that what they created in that model is invalid. It described their experiences very well. It was never developed to describe the experiences of people with medically invisible disabilities. We talk about the medical model and how under the gaze of the medical model the outcome is to cure disability. And I’m like, “Not if you’re medically invisibly disabled.” They have never wanted to cure because to desire cure for me would be to acknowledge I was disabled in the first place. It’s just a whole part of the history that’s missing. We talk about the history of disability, and we talk about freak shows. We talk about clinical photographs and like, the grand rounds parades that they would be subjected to as kids. That’s not my history. My history is Colin in The Secret Garden who miraculously was able to walk once he got fresh air.

Brianne: Probably literally, frankly. One of the things that I find so hard when talking about mobility is like, my mobility fluctuates so much, and so when I can walk, I do feel like that’s a good thing. Not because I think that walking as a form of mobility is superior, but because when my body specifically has the capacity to walk, it also has the capacity to think and itself and water itself and get to the bathroom. My mobility issue is not a mobility issue. It’s like, mostly an autonomic nervous system issue. Sometimes people are like, “Talking about walking as like, it’s good is like, shaming people.” And I’m like, “Okay. One, I would never like do a standalone tweet that was like, ‘Walking is great,’ because I don’t think that or ever want to perpetuate it in any way.” but just being like, “I’m having a great day,” or like, sometimes you wake up and you’re like, “I haven’t used my mobility aid in a while,” or whatever… I don’t think I’m cured. I don’t think I’m better off not needing it. I’m just like, “Huh. My nervous system must be really happy right now. And that is worth celebrating.” There’s this like, cultural barrier sometimes in… it’s a little bit inter- a little bit intra- where you’re like, “Hey, I’m not saying that not walking is bad. I’m saying that having an autonomic nervous system that shuts down every single one of your systems is pretty uncomfortable. We’re just having different conversations right now.” I think like, anybody who’s listening who’s not on disability Twitter is going to be like, “You guys have a lot of strong energy about this issue that I have never considered before.”

Alex: This is really niche.

Brianne: These are themes that come up a lot and like, pushback that comes up a lot. And you’re like, “Okay, I’m really interrogating it. I want to interrogate my own ableism a lot. I’m sure there’s a lot I haven’t found yet, but like, I feel very confident that that’s not what this thing is about.”

Alex: Exactly. Yeah. If you associate a particular activity or mode of mobility with feeling better, then of course you’re going to have positive associations with that.

Brianne: Yeah. Dysautonomia is so great in this way, too because it’s like, so visible when you know what to look for, but so invisible diagnostically, clearly, since it’s like… it boggles my mind. Like, so many people now are still not getting screened for it when there’s no… I mean, maybe that’ll change because of long COVID. But like, it’s so invisible, and as soon as you know about it, it’s visible. And then you can be like, “Oh cool. I’m tracking it. I’m making different choices. I’m keeping my body in different postures.” A whole world opens up where you’re like, “Oh, cool. I completely see this outside of the walking/not walking binary now, but I never had the tools or language to observe and evaluate that before, so here we are.”

Alex: But like, when we think about like, what assistive technology is too… talking about different postures, I spend most of my time on the couch or the bed because it’s just easier even than sitting upright and for a variety of reasons. There’s postural, there’s also, my abs are still not great, so my hips and my back start to hurt if I’m sitting upright at a desk for ages. I get circulation issues in my feet, and then they start to go numb, like, just a lot of stuff. I’m either reclining on my couch where I can sort of lean or in my bed. And so for me, like, assistive technology is like, my over bed table and my laptop, and those are not things that ever really get counted. And this is going back to like, the design conversation, too. Like, those are not things that get consider as assistive technologies. When people are evaluating digital accessibility, UX, they talk about assistive tech in terms of like, screen readers and speech to text. And I’m like, “Have you considered how a laptop and a track pad are assistive tech, too?” And like, that’s, again, invisible. Invisible from the conversation.

Brianne: I would say that one of the items that is like, most desired by this community in the assistive tech world is just a way to mount your monitor while you’re lying down.

Alex: Oh my God, yes.

Brianne: This product exists. There’s like a really, really expensive gaming product in this space that makes the rounds every once in a while. It’s so interesting actually to me how this like, tracks beside disability dongle. There is very little difference between a $2,000 gaming chair that you can like, mount a monitor in and a wheelchair that can climb stairs. You’re making this like, luxury product instead of just making something that is good. I dunno, probably some disabled people who have a lot of resources have bought gaming chairs, I bet. But like, if you can’t afford a gaming chair, you’re just hacking together your own system, which is what most people do. But like, there’s no reason this product hasn’t been designed.

Alex: Yeah, I got a really the fancy ski coat this summer, and I got it in July because it occurred to me that if I looked in July, I might be able to get some good discounts and I could. But also like, this is the first time since I was under 18, that I could have had the financial access to something like that. And it has been a game changer in terms of going outside in Canadian November and not being in immense pain, but like, that shit’s expensive. It takes so much privilege to have been able to get a hold of that coat, and most people who are disabled probably still could not. I’m very lucky that I’m now in a position where I’m able to work part-time and able to access benefits that have helped me to do that. But this stuff is so expensive, and know, there’s a conversation around the straws. The plastic straw ban about how reframing something like that as a medical device will lead to increased expenses for people. And that’s absolutely an issue. But then there’s also like, the opposite, which is that coats, laptop stands and gaming chairs are not considered assistive tech devices, so there’s no way to procure any kind of funding or insurance coverage for them. I need my coat as much as I need my wheelchair.

Brianne: Yeah. There’s so many cultural barriers, too. We know this in general in disability, right? Like, if you spend money and you’re impoverished, people are going to be like, “You should never spend money on anything expensive. It doesn’t matter if it makes your life better.” And then there’s like, a pushback being like, “Hey, there’s a crip tax. Things just cost more.” We kind of get that, and there’s discourse around that. And I think part of the work with invisible disability, however we want to frame that in this moment is being like, “Hey, there are a lot of invisible assistive devices that you don’t know are being used that way.” I know I’m basically repeating what you just said, but anyway, they’re being used this way. And so it’s not just, “How do you file them with insurance?” Or whatever. Like, it’s not just about, what are the mechanisms that exist already? It’s also like, how much work has to be done socially to convince the people around you that you actually need that device, which, again, not that it doesn’t happen with devices that are coded as medical. It does happen with devices that are coded as medical, but it is different when it is not coded as medical. And it is an access tool, and people don’t have a context for understanding that. So, yeah, it’s wild cause people in our community for the most part, just want to be able to do everything lying down. That’s an access need, and it’s hard to do a lot of things lying down right now, because as much as people who think about these things are thinking about like, “Wow! We really do design spaces for bipeds, don’t we?” It’s also like, “Oh, we really design spaces for people who can sit don’t we?” We have the

Alex: I do not miss traveling for work, God. Last December, we went to San Francisco, and I got stuck at the Arizona airport for seven hours. And that was like, the worst thing that has ever happened to me. Also, when you have a wheelchair, it’s not like you can just get out of it and lie down and take a nap because obviously you don’t want anyone stealing your chair. I would have gone and laid down on the floor, but I was also like, So I was just sitting for seven hours. It was the worst.

Brianne: That, I believe because the first thing I do whenever I have to wait anywhere is move to the floor so that my feet are effectively elevated and/or lie down, wherever we are, whatever to happen. It’s good. But yeah, we just need more spaces for people to lie down. This is like, one of my top three strong opinions right now.

Alex: Yeah, and also, I would say like, for people to be unconscious safely in public. This is going back to what my narcolepsy was untreated. It’s so scary. Like, I was having a sleep attack… I was in London, and I was staying with a friend who was working. I decided to go to a museum, and I started to feel asleep attack coming on. And I couldn’t… first of all, I couldn’t find anywhere to lie down cause also, hostile architecture. There is nowhere to lie down in London anymore.

Brianne: And which we know is for unhoused people. Like, we understand that both “has nothing to do with us,” in quotes, as if there’s no intersection and a very complicated situation here. And also like, it’s collateral damage that it makes it hostile to disabled people.

Alex: Exactly. I would love to see if there were a way to challenge hostile architecture through like, ADA-type equality act legislation. That’s a thing on the list of things I eventually want to try and do because I think that would be a really interesting way to apply that legislation, and it’s real. Like, it is absolutely an accessibility barrier too.

Brianne: Yeah, cause I’ve had that with syncope. I’ve never fainted from POTS either, but I also have vasovagal syncope. So I just like, I’ve had a lot of public fainting issues, and it’s not set up for that if you’re by yourself and you’re presyncopal, which I’m sure is not that different.

Alex: Yeah, exactly. The key thing is you need to get somewhere you can lie down. I remember I went into a cafe, and I told them. I was like, “I have narcolepsy. I need to doze.” I ordered a coffee, but I was like, “If I’m unconscious, don’t call the cops or an ambulance.” And then I remember I was sort of like dozing and I could hear someone saying, “Oh, it looks like someone had a fun night out.” There’s something so unsafe feeling about being unconscious in public. And like, what are the ways we could design spaces… and, again, would be great from accessibility perspective, but also from unhoused people, and also from people who experience breaks with reality, or people who are dealing with substance issues. Like, they also need to be able to be… people were assuming I was drunk or high. The issue isn’t that they were mistaken. It’s that anyone who is struggling with altered consciousness in public should have a space to be able to be unconscious in public safely, and it just isn’t.

Brianne: I want to say one more thing, which is that one thing that I really hate about it is I’m also like “I’m not going to call a cab like this.” Like, I’m not getting into a car… especially in Toronto where there’s exactly one woman taxi driver. So I’m going to make some gender assumptions, and sorry in this one moment. But like, statistically, you’re almost certainly going to get a man as a cab driver. And like, there are some feelings there when you’re like, “I’m presyncopal, and I…” One, I should be safe even if this were substance, and two, this is frequently mistaken for substance. And like, of these things do not want me to get into a small enclosed space with a strange man.

Alex: Yup.

Brianne: And that’s like, my safe option, to get out of public.

Alex: Yeah, it’s a whole thing. And I mean, that, none of that is ever really talked about in like, access conversations.

Brianne: No, I don’t think I’ve ever heard that.

Alex: Yeah. Like, default assumption is that access includes… you’re conscious.

Brianne: And likely to remain so unless it is an actual medical crisis in which you need care, and it’s like, “Oh no, I don’t need care. I mean, I would probably benefit from hydration, but like…”

Alex: Yeah. I mean, this is the thing too, like, I know folks who deal with seizure disorders and epilepsy too, like also in the States.

Brianne: Don’t call an

Alex: that They get the ambulance called on them, then they’re a thousand dollars in debt. Like, there’s so many dimensions to that lack of safety when you deal with altered consciousness.

Brianne: Yeah. That’s a fun thing. So many memories of lying down on the side of the road, just being like, “I’m not exactly conscious.”

Alex: Oh yeah.

Brianne: My syncope was like, one, fainting is kind of obvious, and two, that’s like, the only thing that was accurately named when I was 18, so when I was pretty young. So like, that’s the only one that I’ve ever been like wandering around spaces, being like, “I have needs. I need to lie down. I need to get away from this disgusting picture the triggered my syncope. Thank you.” Okay. We’ve been talking for about three hours. Is there anything that we have not Is gotten to, that you knew that you wanted to talk about or that like, is fresh on your brain now?

Alex: Not really. I think we actually did pretty much cover everything in a very like, roundabout way, yeah. Which is honestly how my brain works. It’s so nice talking to another person whose brain works that way, because I’ll go on like, normal person podcasts and I’ll be doing this like, “Oh, this also happened 10 years ago, but it’s tangentially related.” It’s just like, a nightmare.

Brianne: Yeah. You’re like, “Do you even know what I’m talking about now? As I am deep into theory?” Yeah. It’s an adventure, I feel like. It’s been fun to be able to be like, “Just talk me about, whatever’s important about the thing.” And it’s like, cool. We can have a way better conversation than when I’m like, “Educate me about your disease and/or work.”

[guitar riff]

Drew: Thank you for listening to episode 75 of No End In Sight! You can find Alex on Twitter and instagram @alexhaagaard. You can find me on Twitter @fibrofuckboy and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on Twitter and Instagram @bennessb, and you can find many more conversations about chronic illness on Twitter @RTsFromTheVoid. And don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple Podcasts. Thanks for listening!

The post 75 – Alex appeared first on No End In Sight.

Crew Dog from One Sick Vet talks connective tissue, mast cell activation syndrome and veteran disability services.

Brianne: I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

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Drew: Hey this is associate producer Drew Maar. Before we get started, we wanted to remind you that No End In Sight has a newsletter. It’s full of updates about twitter conversations happening in our hashtag #NEISVoid, book and article recommendations about chronic illness and disability, and links to new podcast episodes and miscellaneous other media. If you are comfortably able to support our work, there are paid options available, but all core content will be free. You can take a look at previous newsletters and subscribe over at NoEndInSight.substack.com. Today we’ll be talking with Crew Dog from One Sick Vet about connective tissue, mast cell activation syndrome and veteran disability services. A few content notes for this episode: There is talk of the military throughout this episode, including a mention of the Gulf War, Desert Storm, as well as 9/11 and the ensuing wars around thirty minutes in. And Crew Dog and Brianne refer to the pandemic a few times throughout the episode, but they do not talk about COVID or lockdown very extensively in this episode. Before we start, here’s our disclaimer: This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: So I like to start just by asking people, how was your health as a kid?

Crew Dog: Which is an interesting question because like you, it’s a lot of retrospective work for me, and I would have always said that my health was excellent.

Brianne: Yeah.

Crew Dog: And I think that’s still a fairly accurate but what I’ve come to recognize is that primary parent is sort of in denial about health issues.

Brianne: And that’s how you knew, Right.