Handle with Care: Empathy at Work

- Char Simpson

You've got to create this new normal. You just got to find what makes you happy. And create this new normal and what makes you happy may be almost very, very different from what it was with your husband, but it's just you. And so you you weren't meant to just be miserable. Life's going to be good.

INTRO

My guest today is Char Simpson. To her many Instagram followers, she is known as the Traveling Black Widow, an older, beautiful Black woman traveling the world…or traveling regionally during COVID, offering tips on great gifts to buy or personal health or the best places to eat in Nashville.

Char is classy with a little hint of sassy. And today she is going deep, telling us about the love of her life, her soulmate, husband, and travel partner, Roy: what she loved about him and what is was like to walk with him through cancer, to bury him, and to live, fully, a life she never would have chosen for herself.

As I mentioned, Char is also known as the Traveling Black Widow, a handle that her daughter Liz created for her. As Char tells it, Liz got tired of sitting, one-on-one, looking through photos and thought that her mom could benefit from a larger audience.

- Char Simpson

I had no idea what Instagram was. And I didn't really want to be on there because like a lot of people, I think my age, we feel like, well, I don't want everybody knowing my business and in my life and not realizing I had total control over that.

Char Simpson

But it it sort of took off rather quickly. I was featured a picture of me on a boat in New Zealand at the Milford Sound that picture was featured on Travel Noir. And lots of people start following me then and so then know just sort of grew from there. But that was the first time I was ever featured and that was a pretty big online Instagram site. And and so that sort of launched me, really.

Char is also a court-appointed special advocate, a CASA, for two families

- Char Simpson

I see the children monthly and sometimes there's court. There's other kinds of meetings with the other providers and people supporting the kids. And that has, you know, taken some of my time and been very, very gratifying for me before COVID and and during this lockdown time.

And, like a lot of us, she has spent a fair amount of Netflix recently, especially Bollywood films.

- Char Simpson

And then it seems the way that Netflix has designed their programs, they are just so captivating. And when you get to the end, they go into the other one before you can stop yourself.

- Liesel Mertes

Absolutely, they've got the psychology down.

- Char Simpson

They really do. I just don't even understand what kind of marketing mentality came up with that, because it's pure genius.

Char and Roy first met in Cleveland. She was a teacher who had just moved from Detroit, a city that she loved. She wasn't thrilled about the move and kept spending weekends back in Detroit. Until all of that changed one Friday morning in the main office at the school.

- Char Simpson

And this really, really handsome guy, young guy goes walking through. And so I asked the secretary, I was like, who's that guy? And says, Oh, that's Mr. Simpson. He's the basketball coach. Is he single? She's like, Yeah. I said, OK, right. So I thought, yeah, I told my department chairman because he had been trying to match me up with people from all over town. I was always having these blind dates in my department chairman had come up with.

- Char Simpson

So I told him I saw this guy in the office this morning. And when I saw him, I just thought, wow, he's so handsome, he'd make beautiful children.

- Char Simpson

And that actually was my thought standing there in the office. So anyhow, he said, we'll stay in town this weekend and Friday after school. We all go to Happy Hour. So instead of just driving right back to Detroit, one should go to happy hour with all the teachers. So anyhow, I went to Happy Hour. He called Mr. Simpson over to our table and introduced me and we chatted. And that was sort of the beginning of it.

- Char Simpson

That evening I went to the school's football game and he was there and he ended up sitting over with our department and and from there just sort of took off.

They dated for two years before getting married. Roy moved out of education and a job transfer brought the couple to Indiana. Char sang in the choir at their church and Roy was an usher.

- Liesel Mertes

What were some of the things that you just really enjoyed doing with one another?

- Char Simpson

I would say most everything, just anything that we had to do, we just we really, really I do believe we're soul mates. I know some people don't believe in that term, but I really do. And we just enjoyed each other's company.

- Char Simpson

He was not a person to have lots of guy friends. And so, I mean, he had some friends, but it wasn't like he wasn't hanging out with the guys and going to stuff with the guys.

- Char Simpson

He could enjoy going to a football game with me, I think as much as he'd enjoy going to one with one of the guys. And so we did do just all kinds of things, you know, just within our marriage from just being at home, doing puzzles, jigsaw puzzles to going out, fishing together. When we dated, we went fishing a lot up around Cleveland. There are lots of really Great Lakes in Lake Erie. And so we did lots of fishing and just always spent a lot of time together.

- Char Simpson

He was so, so, so helpful at home and he grew more helpful. My my daughter sometimes kids me about how I didn't do anything. And I told her it was a process over the years because I stayed home until she quit. When she was born, I stayed home till kindergarten. And so I said I didn't just stay home all day doing nothing, waiting for him to get there and do everything. But once once I went back to work, you know, we sort of shared chores.

- Char Simpson

But he probably did more than the average husband. He was just really just a really great guy.

- Char Simpson

And I think part of that was that his he had a twin sister and five other sisters. And so he was just raised in a home where the guys really looked out for the girls and with him having a twin, he said on his first day of kindergarten, his mom and dad really talked to him about you. Make sure you take care of Connie and you do this and you do that and make sure she has her book bag and her coat and just all these things.

- Char Simpson

So he was always used to looking out for a woman.

- Liesel Mertes

Yeah, I love that. That's really sweet. Family of origin can shape you.

- Char Simpson

Yes, definitely.

By way of a sidenote, I interviewed Char's daughter, Liz, in an earlier Handle with Care episode. Liz is a dentist who was injured at work. If you haven't listened, make that your next listen…and I talk about her love for her dad, Roy.

- Liesel Mertes

Well, and I remember Liz talking even in her interview, and still she just your daughter carries with her such an impact that he had as a father in her life, you know, and just carrying that in a really powerful way.

- Char Simpson

Yeah, yeah. He really was an amazing father. And she had a really rough time when he got sick and and when he died, I think she was it was is difficult while he was sick, as it was when he died for her.

Roy started to get sick in 2005. His initial diagnosis was grim, just a few months. In the end, he lived for two and a half years past his diagnosis.

- Liesel Mertes

How did you feel when you first got the news?

- Char Simpson

Oh, when I first got the news, I mean, I was absolutely devastated. You know, you go to the doctor and you know you know that it's something is just not right. And so you're expecting bad news and maybe even cancer because cancer really runs in his family. So you know that maybe there's cancer, but you never expect someone to say three to four months to live.

- Char Simpson

That is just I mean, I I got goosebumps just now saying that again, because it's just the most shocking news. It's just the most shocking news.

- Char Simpson

You walk into a doctor's office, one person, and you come out almost a widow named.

- Liesel Mertes

What did a particularly challenging like day or moment like, as you think about those 30 months, what was a particularly hard time for you?

- Char Simpson

Well, just. I guess maybe sleeping I think sleeping was was sort of difficult because, you know, you have when there's something on your mind or even you don't think it's on your mind and you wake up during the night, I don't know what it is about the human brain, but certainly for my brain, when I wake up during the night, I have the very worst thoughts, just horrible, horrible thoughts.

- Char Simpson

And trying to get back to sleep was just so difficult. And sometimes I'd wake up because of a dream. You know, I would just dream that I was at a funeral or mainly I would sort of dream I was at his funeral or I was a dream. I was picking out coffins or something.

- Char Simpson

And then your your psyche just wakes you up, you know, it just won't let you endure that for so long. So you wake up, then you're laying there, you know, and here's this person who, you know, sounds OK and seems OK.

- Char Simpson

But to know inside all this is going on. And one day. Yeah, I am going to be at your funeral. It just I just think sleeping was just the worst part of it all for me.

- Liesel Mertes

Oh yeah. Well and when you're not well rested, the challenge of meeting whatever the next day brings is all that much harder.

- Char Simpson

Right. Right.

- Liesel Mertes

What, what was did you feel like you had a community of people around you that during those 30 months were supportive and helpful?

- Char Simpson

It was the most incredible time in my life. I normally have, you know, two or three really close girlfriends throughout life. I've not been a person with, you know, big crowds of girlfriends. I've always had, you know, two or three that were really close.

- Char Simpson

And for some reason during that time, I had so doggone many girlfriends, you know, things that happened. I had been in a a group at church. This pastoral care counseling had been trained to become a counselor.

- Char Simpson

And this other girl that was with me when we'd go out to visit family, she and I became so close. As a matter of fact, we were so close that when we went to the doctor appointment where we found out he had the three months to live, she was with us when I told her we were going to that this well, I'll go with you. And and my sister in law had told me also she'd just take someone with you when you go to the doctor to get this report so somebody can take notes on what the doctor says.

- Char Simpson

Because my husband's sister, had she's been through all three or three or four of the siblings already dying from cancer. So she sort of knew the ropes on it. And so she said, take a friend.

- Char Simpson

So I took this friend and she was just she was just the most valuable resource and all. She was just so great. And I just I don't know.

- Char Simpson

Neighbors somehow became friendlier neighbors. You know, you just wave at the mailbox. Well, all of a sudden, you know, they're dropping by. And that whole 30 months, there were just I had this enormous support group.

- Char Simpson

It was so amazing.

- Char Simpson

Oh, that's so amazing, because some of the people I actually have not even seen since after his funeral. Yeah. And, you know, and yet, you know, during that time, you know, somebody would oh, like one day I got home from work and we've got a pretty big yard and lots of trees. And I mean, there were leaves every that first fall that October when we were when he was just feeling so weak and couldn't get the leaves or anything.

- Char Simpson

And it had to have been after the diagnosis. It must have been the next fall anyway. And I mentioned to one of the guys that were, you know, taught in the classroom next to me, and I said something about, oh, my gosh, you know, my husband, he's just so weak. And all this is the I pass by your house the other day. So you guys got a lot of leaves. I was like, yeah, yeah, we've got to, you know, got to do something about that.

- Char Simpson

That afternoon, I get home from work late and here are a bunch of guys from my school, some of the male teachers at my school out in my yard raking leaves. One of us got this mower he's doing leaves there about four or five guys. He lived close to me. The other guys didn't even I didn't actually even know where they lived, but he had organized this thing of getting our leaves up. And I don't know, away just sobbing, I was like, boy, I'm looking forward to all these people raking leaves.

MUSICAL TRANSITION

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MUSICAL TRANSITION

- Liesel Mertes

Will you tell me a little bit more about what his final days were like for you?

- Char Simpson

It is just so painful to watch someone who has been this handsome man that you saw across a crowded room and to see him go down to skin and bones and lose his spirit, you know, just become a real quiet kind of person.

- Char Simpson

And just all the changes that someone goes through, I think especially when they battle cancer and they really just want to keep going and they keep plodding along. Being there alongside for me and my personality was the hardest thing I ever had to do in my life.

A few months before he died, Roy and Char went down to Florida for spring break.

- Char Simpson

And so we had gone up to Amelia Island and there was a place there where you could arrange these deep sea fishing trips. And so we we were staying in Ponte Vedra, which was, I don't know, maybe 40 minutes from there.

- Char Simpson

Anyway, we drove up one day to check out, you know, get signed up and see the situation for the deep sea fishing. And on the way back, he was like, oh, sure, these roads were we on?

- Char Simpson

And I was like, we should stay on this one. And he was sort of like getting lost driving.

- Char Simpson

And we were just on the main freeway that went right to our hotel.

- Char Simpson

And so that was sort of disturbing because the next morning when he got up to go for the deep sea fishing, he he was going to go alone while he came back early morning. And I was like, hey, what happened? And he's like, I don't know, I couldn't find my way up there. And I was like, What you've got? Oh, my gosh, what about the maps and the brochures?

- Char Simpson

And he's like, I could I don't know, I just couldn't find my way up there. So it's like, I don't know. I just didn't feel like doing so. He had come back.

- Char Simpson

Well, that I mean, my heart was just beating heart in my chest because it's like, oh my God, how could he not read the map? And, you know, and yet he could drive. He could see. And it's like, I don't know, I just was almost just in a panic and trying to stand there and look cool.

- Char Simpson

But anyway, we came on back home and also while we were in Florida, the thing to that was just breaking my heart when we would go out to dinner. Sometimes one night he was like, you know, I'm just I'm not terribly hungry. And I had ordered chicken wings. He's like, I just have one of your wings. I was like, what am I, wings? One of these, like, you know, just let's just split to order a chicken wings.

- Char Simpson

And for a grown man, six two to split ordered chicken wings. Yeah, it was like, oh, God, what's going on? What is going on?

- Char Simpson

And anyway, so we flew home Sunday, the next Saturday, that Saturday morning.

- Char Simpson

He always woke up real early and he made coffee and always just brought me up a cup of coffee. Well, when he walked in the room with the cup of coffee for me, he walked into the to the post the bedpost and coffee went everywhere.

- Char Simpson

And he was like, oh, my God. And as he was walking and he says, I just took your coffee into the guest room, I was like, you know, and anyhow, he walks into the bedpost and that moment, I know. This is it. This is it. And I called 911. I said, know my husband is just walked into a bedposts and he but he can see and anyhow they came out, went to emergency room and that's when they found cancer had spread to his brain.

- Char Simpson

As long as it was it was everywhere.

- Char Simpson

It was everywhere. And so what I had been seeing in Florida was just all indicative of the beginning of the end. And it was, you know, he went downhill. That was April 12th, that Saturday morning. And and he died June 30th.

- Char Simpson

Mhm. So that's when you just sort of couldn't battle when it gets to that point, you know, you're just just sort of everyday going down a little bit.

- Char Simpson

So that was the those were the worst weeks of my life. It was absolutely horrible. His sister came up. His twin sister came and stayed for a little while so I could finish out the school year.

- Liesel Mertes

And in the end, it just was downhill from that point. Yeah, well, and I. There is walking with someone through their dying. And then there is the reality of looking at life that extends beyond them.

- Liesel Mertes

What, what sort of feelings? We're confronting you the day after his funeral as you woke up as a widow.

- Char Simpson

Well, that's pretty horrible. I'm. I guess I almost I don't know, I'll have to think for a moment how I really felt, just the part, I guess that does not so horrible.

- Char Simpson

It's like once everybody's gone, it's a friend of mine, my best friend from college. She came down and she was here for a long time and she stayed after the funeral for about a week. So, you know, we would go out and have lunch and, you know, do things. So, you know, I think she was just really deliberately trying to keep me really active. And and my daughter had had to go somewhere or I don't know if she went back for a summer program at school or something, but she had ask my friend to stay in town with me and just give me some time to transition to the empty house.

- Char Simpson

And and when my friend did leave that next week, then it was I mean, the house is just so silent. It's so sad. It's I haven't had that kind of intense sadness again in life that I had that whole summer.

- Char Simpson

I mean, I would I would try to get up and move around because I'm the kind of person that for me, walking is therapeutic. So I would try to get up and go out for a walk and just walking down the street and passing a neighbor's house that maybe he always chatted with or somebody driving by see me and they stopped the car.

- Char Simpson

You know, they look over Charlotte, how are you? Well, then I burst out crying. I hate when people would say, how are you? That was just. Oh, gosh, just the worst. Or if I go to I know one day I went to Target and one of my coworkers like Charlotte and we're having this bubbly conversation. I'm all great. And then he's like, Now, Charlotte, tell me, how are you?

- Char Simpson

Well, when he said that, like, open the floodgates, I mean, there's something so loud that he's like, oh, I'm so sorry. I'm so so people are walking by looking at me. It was so embarrassing. And I did that for the longest. For the longest.

- Char Simpson

You know, you can be so composed and think, OK, I'm going to go to church. And if someone says, how you doing? I'm going to I'm going to keep it all in. And it's always that person that sort of sneaks up on you that you are expecting them because the conversations going merrily along and then they turn like, so tell me. Right.

- Char Simpson

I really feel and I don't know just when people would say that I couldn't hold it in.

- Liesel Mertes

Did you did you leave those interactions like at church or target thinking? I wish they never would have said anything.

- Char Simpson

Yes. Yeah, yeah. Because I would even really, like, avoid people, you know, I would just sort of, you know, if I saw somebody sort of coming my way because like at work, it was so bad. It was really bad.

- Char Simpson

Because if, you know, if you went in the mailroom, you know, all the the teachers mailboxes and stuff. And so you're in there, you happen to be the only person. And then someone comes in in like, oh, I heard about your husband this summer. I'm so, so sorry. How are you? Yeah. Oh, man. Now here I am in the mail room. I make up for getting what I love. It was just that was the spot.

- Liesel Mertes

So the how are you did not feel supported. That felt like something that kind of derailed you. What were things that you would say this this actually was helpful? Like this was a good thing that people did to support me.

- Char Simpson

Hmm, well, I don't think they meant to derail me, it just did, you know, because I've sort of learned from that one. I'm talking to someone who's lost someone to not go into that deep. So how are you?

- Char Simpson

I know how that just pierces your heart, but there were just maybe nice notes that people would send and, you know, that you could see in private and deal with in private or I don't know, this sounds probably so weird,

- Char Simpson

But I just really liked when people kept it sort of lighthearted. Yeah. You know, and they were just lighthearted because one morning out of when I was at the mall in the some friend of his, this lady who was also a friend of mine, that they had worked together and they were really close.

- Char Simpson

And and so I passed by just like, hey, how are you doing? I'm like, fine, great. Well, you look great. So you must be great. And then she kept going great.

- Liesel Mertes

Yeah, well, and I, I hear also some of the dynamics of different personalities in that moment, too, and tell me tell me if this sounds like it fits, but that sense of being put on the spot all of a sudden with people and really that that felt it sounds uncomfortable to you of like, "don't don't put me on the spot to have to go through all of that right now." Like it caught you off guard in ways that really felt, you know, uncaring, even if they didn't intend it to.

- Char Simpson

Yeah, I guess maybe that was the element of it, that that just doesn't quite fit with my personality. Maybe just as a control person being very controlling. I didn't appreciate or it's not that I didn't appreciate because I knew they were caring, but it's just that it didn't work well for me to just have that on me like that.

- Liesel Mertes

Well, and especially if it was going to ruin your makeup like the one I'm already dealing with this hard thing. Yeah.

- Char Simpson

And it you know, it's just it's so hard because you have expected your life to go a particular direction. And and it just it just like this wasn't the plan at all. I mean, I felt like my husband probably would die before me. And and I think a lot of women, we sort of know statistically that that probably will happen. So we're prepared to be a widow someday like it. Eighty something. Eighty five, but not as a younger you like.

- Char Simpson

My husband was 60 when he died. Well, I certainly did not expect to be a widow.

Char and Roy would travel a lot. They thought that, in retirement, maybe they would rent and RV and explore or go to California.

- Char Simpson

So every year we were going someplace around the country to see is this where maybe we'd like to live when we retire? So once again and

- Char Simpson

I know single women retire in other places, but I haven't been able to figure out where I want to retire by myself other than just here in my house. So I'm still right here in Indianapolis.

- Char Simpson

I have no place in mind that I might want to move. For retirement, I don't know, I just doesn't seem like a fun thing to me to move to another city where I don't know anyone and have to meet a lot of new people all by myself.

- Liesel Mertes

Yeah, the recalibrating of what for so long had been a together thing.

- Char Simpson

Yeah. Yeah. And as long as he's been gone, I still have not decided on a place that I'd want to relocate.

- Liesel Mertes

Well, and I imagine also in the dailiness like in any marriage there, there tends to be like a rough kind of division of tasks. You know, even like you said, he would bring you coffee in the morning. Did you find yourself as a newly widowed person confronted by his absence? In a lot of ways, like, oh, I didn't have to do this because Roy used to do this, but now I need to.

- Char Simpson

Oh, my gosh, there were just so many things because he really like I said over the years, he became more and more giving. And I would like to think I did, too. I mean, he never had to pick out a stitch of his clothes, and yet he was most well dressed men in town because I love shopping and shopping in the men's department for all his stuff, too. But he did. He didn't mind doing stuff around the house and he did a lot.

- Char Simpson

So there were so many things that I had to learn. And a friend of mine has a home and she's never been married and she's a homeowner. And so I would have to call her all kinds of times about just different things and well, who do I call to get this repaired? Or one time there was the scratching sound in the in the master in my bedroom behind the fireplace, you could hear that an animal somehow was behind the wall there in the bedroom like two o'clock in the morning.

- Char Simpson

And I was just sitting there like, oh, my God, who do I call? What do I do?

- Char Simpson

And I end up calling my beautician because she has this uncle that she's always talking about. Uncle Benny and Uncle Benny do everything I said. OK, I'll call Angel and ask her what Uncle Benny know what this could be scratching on the wall of my bedroom at 2:00 in the morning.

- Char Simpson

And so, like the next morning, Uncle Benny came to my house and came up and he looked around the house and it turned out it was a raccoon. And so I had to get a service and all that dealt with getting raccoons out of your house. He was out it wasn't out in the house. So you could see it, but he was within the behind the drywall. So it was just stuff where I never knew who to call. It was just it was horrible.

- Char Simpson

It was so horrible. Right.

- Liesel Mertes

Well, and I imagine those are the moments like you don't prepare for them. They just catch you off guard where you think, oh, yeah. Here's one more reminder ride of my life being different than I thought it would be.

- Char Simpson

Absolutely. Because you prepare, I think, at least for me, you do prepare financially because you you know, it does hit you like, wait a minute, I'm going to be living off of one income. You know, when you do start thinking about that, you know, I didn't want to discuss it with people because I didn't want anyone to think that I'm thinking about him dying. But I would start reading articles or watching Suze Orman and stuff and just to at least be prepared financially, like, how am I going to handle this?

- Char Simpson

What am I going to do? But the other things and I think probably anybody who naturally would think financially to have that figured out, but other stuff like home repairs and oh, just there's just so many things that come at you like that summer. I don't know why I always think of this, but it bothered me so much. A friend called and invited me. She was having a big cookout, I guess that maybe it was Labor Day weekend.

- Char Simpson

And so she called in and it was a pitch-in you brought a dish and all that. And she's like, and I want you to come. And I was like, OK, let me think about it. When I was at that point, still crying too much, really be around a lot of people. But when I thought about it, it's like I don't I couldn't remember when I had gone to a cookout alone.

- Char Simpson

Right. I could not picture myself driving to her house, getting out of the car, taking a decision. I don't know. And I know it's not a big deal. I'm sure a lot of people listening to this think, well, that's no big deal. That was the biggest deal to me. Yeah. I just couldn't picture going to a cookout by myself.

- Liesel Mertes

Right. Well, I appreciate you sharing that because I think it gives voice to those little moments like life is made up of like their little moments that are big moments because it's just where it hits home exactly like you said, this reflection of it's been it's been decades since I've done this

- Char Simpson

Right, I step into all of these places, which because I was getting my nails done and I was telling my nail tech, I said I'm invited to a cookout. Saturday, I sit in. I haven't been to a cookout by myself in so long, I said I just and then all of a sudden I start sobbing there with her and she's like, well, you haven't been don't you know, just go ahead. Don't worry about it. But that I will never forget how upset I was at the thought that she really was expecting me to come.

- Char Simpson

And it's like, do you have any idea the last time I walked into a cookout by myself.

- Liesel Mertes

What are some of the other misconceptions that people have about life as a widow or or something that you say? I just wish people like I wish I could flip the switch and people could just get this about what it is to be a widow. Like, I wish I didn't have to explain it, OK?

- Char Simpson

I definitely know how I feel. I feel very strongly that I feel my husband, as I said earlier, my husband and I really we're soulmates and I do not believe that there is another soulmate on the planet for me. Some people seem to think maybe there is. I don't think so. I figure, you know, soul mate, that's the singular. You get one and that's it. And so when people ask if I'm dating or they feel like, oh, but, oh, you know, all your Dunedoo should be dating or you just seem like such a lively, fun person and oh, there's the you should go and they start naming websites that I should go to and it's like I have no desire to date to.

- Char Simpson

I really don't have any desire to have male companionship. Yeah. I just absolutely. And nobody ever can believe it.

- Char Simpson

I feel like I had 31 years with the man who was crazy about me, worshipped the ground I walk on did everything in the world for me. It's not going to get any better than that. And, and even if somehow it was going to get any better than that, I am at total peace. Total joy right here with just doing my thing, enjoying my solitude.

- Char Simpson

I just have no desire for another guy. I mean, if some if somehow I don't know, you know, if I met a guy and then we were super, super, super compatible, I wouldn't just say, oh, I don't want to be bothered with you. But as far as actually putting forth any effort whatsoever, this entire time that I've been a widow, I've never put forth any effort. I just have no desire for it.

- Liesel Mertes

What helped you in the process? Because, you know, social media always is just a partial reflection of truth, but you do seem to live very fully even as you talk about your life. Now, what has been important for you in moving towards a normal that is more than just overwhelmingly sad?

- Char Simpson

Well, I think. That having been overwhelmingly sad for so long, I did at one point just and I didn't want to date or anything and but I just thought I just don't like being this down and this just that down all the time.

- Char Simpson

And so I did talk with my doctor about it. And and because I found myself sort of, I don't know, becoming a little bit irritable because probably because of my lack of sleep. Yeah. And and so anyhow, I talk with my doctor and she did recommend a medication.

- Char Simpson

And I'm really glad that she did, because I think that helped me too, at times when I was just really irritable and crabby and just couldn't go to sleep. She did suggest sleeping medication and I did it with Ambien and I took an Ambien.

- Char Simpson

And that first night I woke up at 12 and I never got back to sleep again. Oh, no, never. And I had to go to work the next morning with, like, you know, two, two and a half hours sleep.

- Char Simpson

So I knew that I was going to be one of the Ambien horror stories, so had a different kind of way. And so, anyhow, my concern just was just sort of the irritability. I thought, OK, I can get to sleep. So I'm kind of okay. But I, you know, just something. So I'm not so edgy so much of the time. And so then she did just recommend and got me a prescription just for Xanax to use, just as needed.

- Char Simpson

And I think it was this one class that I had at the time that was very, very, very challenging to a group of kids to deal with. And, and so I would, you know, like take a half a Xanax just before them, because it's like this is just wipe me out. Yeah. When it was absolutely life changing. Absolutely life changing and I'm not trying to, you know, push drugs on people, but as a counselor for so many years and as a teacher, I have seen children's lives totally changed when they did take the correct medication for whatever need they might have had.

- Char Simpson

And so that's why I was open minded when she said, you know, maybe just something just to sort of take the edge off. So you aren't just, you know, just so edgy and irritable and all this.

- Char Simpson

And so I honestly would say that Xanax just sort of turned my life around during that time and gave me control of my mind and able to just sort of calm down, think through, not be so edgy, not be, you know, just burst out crying at the drop of a hat and just get control of my life.

Yeah. Helped you. Well, as you said, feel the capacity for a reality beyond that. Right. Redness. Right.

- Liesel Mertes

Are there are there things that as people have been your friends in this new season of widowhood that have been really helpful for you?

- Char Simpson

People just tried to get me out of the house and doing things. And I appreciated that because I didn't have the energy to initiate anything or the energy to even I mean, I would go to movies, I've always gone to movies, but as far as like there were just things I didn't want to do alone. Right. Just absolutely didn't want to do alone. So it was nice when even a married girlfriend, you know, would would do something like on a Friday or Saturday night.

- Char Simpson

Right. Go out of their way to see for you. You didn't have to do all the logistics you mentioned in passing.

- Liesel Mertes

And I imagine this could be really true. But I'd love for you to unpack it a little bit more. Couple friends that fell by the wayside. Did that feel painful? Did it happen all at once? How did that feel for you?

- Char Simpson

Well, you know, I had read about that in, you know, in fiction novels and didn't know how very real it was, but I just found it to be very real. They just just sort of disappeared. Hmm. And I can't think other than the friend with the bat invited me for the cookout. Couple friends just did not invite me by myself to something they were having, especially when they were going to be other couples, when it was going to be all couples.

- Char Simpson

No, there's you're just not I was not invited.

- Liesel Mertes

Did you realize that that was happening in real time? Like, imagine that can feel kind of painful if you hear that they've all got together or like, did it did it feel hard as it was happening or did it just kind of happened gradually?

- Char Simpson

I guess it's sort of hard, but then I guess I just heard about it or seen it in movies or books or something, so I knew that it could happen, but it still was a little surprising. But then to. You just sort of noticed, and this sounds really I don't know how it sounds, but I'll just say it, you just sort of notice that it just seems like maybe wives get a concern that, you know, you're used to having a husband around and you are not going to be over here looking at my husband because you're just used to having a house.

- Char Simpson

I don't know. It's just a it's a weird kind of vibe that you sort of sense that it is OK, like shortly maybe, I don't know, maybe that fall, you know, when might start being a problem.

- Char Simpson

And I didn't know mice were a problem. I guess my husband always took care of that. And so anyhow, when in the attic one day and I see these mice droppings, I'm like, oh my gosh. And I notice there's mice traps and like, oh, OK. So he had been dealing with the mice in the attic and I didn't know that. So I went and bought traps and at the store they showed me how to set a trap.

- Char Simpson

I get home. I can't figure out how to set the trap. So I called a friend of mine down the street, ask her, it's like, you know, have said a mouse traps like. No, I said. And so I ask her. Her husband was like, he does not a surprise. And I was like, oh, OK. But they have mice too. So I'm like, who's setting their mice traps?

- Char Simpson

So she didn't want him. Yeah, she didn't want him to come down and set my mouth.

- Char Simpson

So I was like, I know that was the first one. I was just like, oh, this is interesting. Everybody in the neighborhood has mice and nobody's husband sort of set mousetraps, almost like you had had a place within that ecosystem, like a roll ride your husband.

- Liesel Mertes

You're kind of a bogey and the rules of interaction had shifted.

- Char Simpson

Yeah, I do. Yeah.

- Char Simpson

Yeah. So the mouse trap, I think was maybe the first thing. And then after that there would just be actually that one was such a slap in the face. I don't know that I really ask too many other people because I just thought, well, OK, I think that's my introduction to Widow 101.

MUSICAL TRANSITION

- Char Simpson

Understand your finances. I've met women who whose husbands did everything. I mean everything. And they had no idea the balance on their home. They had no idea if the house was even paid off. They didn't know what their gas bill was. They knew nothing at all. And I have found that those widows have a very, very hard time because, you know, for me, I was dealing with just the emotions of he's gone and I miss him and that I knew about the budget.

- Char Simpson

I knew about the money. I knew, you know, that I was going to be OK. But if you have no idea about you don't know where things are. That would just really, really add to the whole grieving process. I, I just can't imagine how much it would add because you don't even know what you don't know.

- Char Simpson

A piece of advice I got that was was so beneficial and I had read and then various people told me that don't make any major decisions for six months. And because once again, like I said, how my head was just so fogged up that I just didn't feel like I was thinking wisely or clearly. And and you really aren't. You know, when I look back on those months, it's like, oh, my gosh, who was I? It's like you aren't thinking clearly. So don't make any kind of major decisions.

- Char Simpson

A co-worker of mine lost her husband and she sold the house maybe the second month after he died. She just couldn't stay in there alone. And she sold the house. And within a year, she went and made an offer to the people to buy the house back and bought the house.

- Liesel Mertes

Any words of wisdom to offer for the journey as they look ahead to this next season of life?

- Char Simpson

Well, they will get through it. They will it won't be the same, but life will go on, it will be it will still be a great life, just a very different great life than what you pictured. If you thought you were going to be spending most of your life with that person and you will enjoy yours, you'll grow to enjoy yourself if you want to, that you'll really, really enjoy yourself more and grow more as a person if you choose to.

- Char Simpson

It's sort of what you decide you want to do. And, you know, do you want to find another guy, you know? And if you do, then I would just say put your whole heart into it, give it a hundred and fifty percent and find another one. But if you want to just grow yourself and not plan on meeting someone else or whatever, then just start living your own life, try to even do some things alone.

- Char Simpson

If you've got a lot of girlfriends, just, just you've got to create this new normal. You just got to find what makes you happy. And create this new normal and what makes you happy may be almost very, very different from what it was with your husband, but it's just you. And so you you weren't meant to just be miserable. Life's going to be good. It's going to really be great again. You just got to figure out what makes it great, what do I like to do?

Char Simpson

And it's sort of a fun kind of thing in that you can be so, so selfish now and so self-centered. You're totally self-indulgent.

- Char Simpson

Just whatever you want to do, you just do you and do it to the max.

MUSICAL TRANSITION

There were so many nuggets of insight from today's conversation, but here are 3 that I want to highlight as take-aways.

• Listen and then act.I loved the story that Char shared about the men that came to rake her leaves. This sort of attuned, meaningful action comes through careful attention: identifying a need and then showing up to meet it. Where are places that you can show up, metaphorical rake-in-hand, to make a difference for someone that is going through a hard time?
• Your empathy needs to be attuned and adaptive to the person in front of you.Not everyone wants to be asked how they are doing. Char shared about how this left her crying and suddenly swamped by emotion in places like Target. Char appreciated a card or a compliment much more than the heavy, "How are you?"
• Becoming a widow can be full of unexpected moments full of emotion:the first cook-out invite where you are solo, the critter in the drywall that you don't know how to deal with, the wife that begins to view you with suspicion because you no longer have a husband by your side. If you are a friend of someone who is living as a widow, ask yourself how you might come alongside your friend with a kind word or an invite to a movie as they go through these ancillary losses.

OUTRO

You can find Char on IG at: https://www.instagram.com/travelingblackwidow

And you can listen to her daughter, Liz Simpson, on the Handle with Care podcast at: https://traffic.libsyn.com/secure/handlewithcare/Final_Liz.mp3

Liesel Mertes

It's been a pretty eventful and emotional week and a half in my house now with six people in the house. There's always high emotion throw into the mix that two of my children are preadolescents. And you can guess all of the back and forth that go on. But this last week and a half has had some particular inflection points. We had a beloved family pet die.

We've been quarantined because of a possible COIVD diagnosis. And there's just been a lot of general stress in the ER. So today, I want to take a break from our normal cycle of interviewing a guest and having them talk about a disruptive life event to just give you some real talk about empathy and October 2020 in the thick of the COVID pandemic,

MUSICAL TRANSITION

Liesel Mertes

Now, there are a number of you who might know me just as the voice behind the Handle with Care podcast interviews. But I actually have a broader business outside of this. I'm a workplace empathy consultant. And what that means is I help companies and individuals come alongside people in their workplaces to help them survive, stabilize and thrive as they go through disruptive life events.

One of the ways that I do this is I teach them about these empathy avatars. These are these identities that we can take on. They're shaped by all kinds of things. They're shaped by your culture of upbringing. They're shaped by your personality. And they are the tool kit that you go to to respond out of when people are going through a hard time. So some of the names of these characters are people like Commiserating. Candice, you're always sharing your own hard story or Cheer Up Cheryl.

Liesel Mertes

And I want to share with you in today's episode two things that happened in the stress of the last week and a half.

And I want to we've you know, usually we have three takeaways that are always at the end. I want to weave the three takeaways throughout my comments and tell you how I found myself responding during these times of high stress and anxiety, hopefully connect with you. OK, so first I want to talk about this COVID diagnosis, so my son Magnus, he goes to the nurse's office more than any of my other children.

I think he likes the care that's there. He's very in tune with pain and his body. And I sent him off to school on Monday and he was experiencing some sinus congestion, no fever.

Liesel Mertes

I gave him a Claritin, but he was tired and he headed off to school till around nine 30. I received a call from the nurse. I'm in the middle of a training and I get this call from the nurse who tells me she has Magnus in the nurse's office and she thinks that maybe there's a chance that he has COIVD. Now, I'm really glad that people are taking COVID seriously, that they are all of these procedures in place in schools.

Liesel Mertes

And she told me that he checked off enough boxes that he needed to go to a 10 day quarantine unless he came back with a negative COVID test.

So baseline, this is sad news, my hope Magnus does not have covered, but really my first response was just to be so frustrated that I was being called into the nurse's office.

Liesel Mertes

What was this going to mean for me, for my schedule, for all of the things we had planned for the other children for the rest of the week, if we all had to quarantine? And I find myself just being irritated. And frankly, I was so glad that I was wearing a mask in the nurse's office so she couldn't see all of the aggravation and irritation that I was feeling towards my son manifest on my face. So I have to go.

I have to pick him up. And as we're walking to the car, I find myself going full on Buck-Up Bobby, which is one of these empathy avatars that I introduce people to Buck-Up Bobby wants you to be able to tough it out because that's what he expects of himself and that's what he expects of you.

Liesel Mertes

And as I was walking out to the car, here's what I find myself saying to my son, Magnus "Magnus, I can't believe that you can't deal with any pain or discomfort in your body."

"All you had was a headache and a stuffy nose. You have it all the time this time of year with your allergies." And I just read him the riot act. Do you know now that we're going to have to go get you tested and do all kinds of things?

And I'm so frustrated with you and I'm not proud of this, but I mean, he was he was in tears by the time we got home. This poor kid who is not feeling good anyway. And I really had to reflect on this because it was a parenting failure moment. And lots of times I work with companies, I work with H.R. executives or managers, and this little microcosm of an interaction is playing out in workplaces all the time because, frankly, it's inconvenient to the business of business to have someone going through a hard time to have to extend them care, to have to pause in the normal workflow and care for them.

Liesel Mertes

And sometimes, truly, it's easier to care for people who are fathers. Here's your take on point number one. Sometimes we treat people who are further away from our sphere of influence better than we treat people who have a direct effect on our schedules and our workflow.

So for me, it's way easier to show empathy and care if doing that doesn't affect or inconvenience the details of my life. But Magnus felt inconvenient. He was creating a lot more work for me, and I went right into a default response system. Takeaway point number to interrogate your own experience when you find yourself going into these default behaviors, ask why am I treating this person this way? Because this is something I had to do, I'm reflecting on my own experience.

Liesel Mertes

Oh, my gosh, I'm someone who teaches and practices empathy towards other people. I know how important this is. I actually love my son and I don't want to make him cry. Why am I doing this?

Buck-Up Bobby is one of the avatars that I go to for those of you who have been through training with me. I also can be a Fix-It Frank or a Commiserating Candice. More on those perhaps in another episode. But as I interrogate my own experience, here's what I find. So, part of this comes from my household of origin. This was a super important message that was given to me that I was part of a family where you could do hard things and that that mattered.

Liesel Mertes

And, in fact, that that was an important part of being an adult, that you needed to be able to do hard things. And we weren't whiners. My dad modeled this. We celebrated this in conversation as we talked about our days are things that we liked about ourselves and had an even deeper level.

I was a kid who was just like Magnus. I was a kid who loved going to the nurse's office. I liked being taken care of. I got easily bored in class. I would make up kind of these, you know, phantom sorts of maladies that would get me sent home when I didn't really have a fever. And I can even remember my mom telling me how inconvenient this was. Was there a part of my own self judgment or shame that I picked up that I'm now taking out on Magnus?

As you interrogate your own experience, realize that the voice that goes on in your own head is often the energy that you are directing at other people. And as I look at that experience, I think I can ask myself as an adult, is resting really wrong? Does that really mean that I'm a failure? Does it mean that Magnus is a failure? And as I examine that experience, I can say, you know what? Magnus is an 11-year-old kid doing what?

Liesel Mertes

11-year olds doing what I as an 11 year old did. And maybe he doesn't need to fully model all these, you know, adult aspects of being able to push hard and persevere. And maybe those aren't even the highest values. And I'm treating him with a lack of empathy because of the messages that go on in my own head. So some reflections from the COVID experience with Magnus, I'm going to share one more story with you that will lead to a third take on point and reflection that will perhaps be helpful for you as you are interacting with and managing others.

And this has to do with the death of our beloved pet. So, by a strange confluence of circumstances, we ended up bringing bunnies into our home for a long time in life. If you're a parent of young children, you might resonate with this energy. There was no way I was getting a pet at all while my kids were in diapers like no.

Liesel Mertes

And finally, a few years ago, we got a really low-key rescue dog already, you know, good with children already housetrained.

And I thought, this is a pet we're going to have. But the children wanted something a little bit cuddlier and we brought bunnies into the home. And these three bunnies were wonderful. They're so great to hold at the end of a stressful day. And especially the bunny. Bluebell was just such a lover. And I had a bunny as a kid. I had a very typical non cuddly bunny. But Bluebell was the best. Bluebell belonged to Jemima.

The neighborhood kids loved Bluebell. She would just sit and receive stroking and attention. She was spectacular.

Liesel Mertes

But remember, I also have a dog, this rescue dog, who is a predator through and through and on Friday of last week was able to open the side of the rabbit cage and was playing with the bunny. There were no puncture marks by this bunny was so terrified that it went into shock and died. Really sad. There was a communal burial service by the neighborhood kids. There was working through the sadness and all of the triggering emotions with my children as it related to feelings about the death of their youngest sister, Mercy.

I mean, this deep stuff, things like this, bring up really deep waters for me, for my children. This all happened over the weekend. The same child, Magnus, goes to school on Monday and they're doing a weekend catch up in one of his classes as students will do, and this teacher up front asks, So who has the story from their weekend?

Liesel Mertes

Magnus, who is a this was right before he went to the nurse's office to go home. But he's not he's a really emotionally in touch young man. And he raises his hand and he said, well, my sister's bunny died over the weekend. And right away, this teacher cut him off and says, no, no, no, sorry. That's too sad. We only want happy stories. We'll return to that in a moment, because Magnus's chastened and he he's been cut off, but a little bit later, maybe about five or 10 minutes later, Magnus is again sharing in a general sharing time.

And now he knows he's not supposed to share about his sister's dead bunny, but he's just sharing about his buddy who's still alive. And he says, you know, my, my bunny is this type of bunny. It's so cute. And the same teacher cut him off and says, Do you know what my favorite type of bunny is? A dead fried bunny. And then he moves on and changes the subject and Magnus is telling me about this at the end of the day, and I am so saddened and horrified because this teacher is manifesting another avatar that you either we can either call Joking Julie or a Jackass Jared, because the same sort of energy comes from both of them.

Liesel Mertes

This is the type of person that their response to somebody else's pain or to their own pain is to minimize it and close off a painful interaction by making a joke or by just pretending that everything is OK and it happens. A ton in male interactions is not only a male, you know, characteristic, but especially happens in groups of guys.

And I had to take the moment to tell Magnus that was so wrong, what he did to you in front of everyone you know, he he publicly minimized through humor any sort of engagement with your pain to make himself feel better, to get through the interaction.

Liesel Mertes

So point three, a take home message number one, don't be that guy or that girl, if you have a tendency to be a Joking Julie or a Jackass Jared, you need to ask yourself some questions.

Why am I so uncomfortable with my own emotions or with the emotions of others? And maybe maybe you're just doing it within your own story. Maybe even when you talk about something hard, you always feel the need to close it out with a joke.

Maybe you learned distressed early on that actually other people couldn't hold your strong emotions and you needed to wrap it up that way, but, you know, as a as a sub point, point three, B know that we're always being shaped by what is modeled for us and especially for younger people, whether that is someone who is a couple of decades younger than you in the workplace or if you were in a parenting relationship or just in a power dynamic, you are modeling what is acceptable behavior.

Liesel Mertes

And it requires intention or else you're going to get these bad unintended consequences, you know, if Magnus encounters enough of that sort of jocular dismissiveness again and again, what he's going to think is this is the way I need to interact in order to be heard in this setting and is going to set a trajectory for him to think that he also needs to do that. And then the cycle just perpetuates itself again and again.

So thanks for listening to this little mini-series of real time reflection about the sort of stuff that covid is bringing out for people.

Liesel Mertes

Every day you are going to have the opportunity to be able to move toward someone and be a caring, supportive present person or move away from them, and there's a lot of levels to that. There's all kinds of things to unpack.

[00:15:15.150]

But just now, today, take a moment to think about some of the interactions that you had this week. What are they saying about you? You know, for me, it touched on some things that I'm not proud of that manifest in the midst of my stress response that I'm trying to with intention change in my interactions going forward.

[00:15:35.600]

And as you think about your experience, if you have missed someone, if you think, "Oh, my gosh, I was a Buck-up Bobby to my co-worker or to my child or I was a Jackass Jarred and I don't want to do that. And I don't want to be that." One of the most powerful things that you can do is go back and say you're sorry to someone. That's what I did within 15 minutes with Magnus. I went back and I said, "I'm sorry.

[00:16:02.150]

I did not treat you fairly or well. I shamed you and that was wrong of me. And I'm sorry I did that. And I don't want you to carry that energy. It's not right and it's not true for you." You'd be amazed at what a difference that can make. In our next episode, we'll be back to interviewing guests. Thanks for your time. Have a good day.

MUSICAL TRANSITION OUT

- Peter Kline

I'm never doing enough, never doing enough of working enough with them and never doing enough therapy outside of therapy hours with them and knowing the importance of that, but also trying to manage the responsibility and guilt that comes along with that while also, also being clear on. But every day with him is a gift and every day is enough. That's it. It's it's holding those two things together that often feels very difficult, but that's kind of what we're given to manage.

INTRO

My guests today are Janice McRandal and Peter Kline. They are here to talk about their son, Leo, what it is like to raise him and love him as he lives with cerebral palsy. Cerebral palsy is the most common motor disability in childhood, it affects the ability to move and maintain balance and we will hear about how CP impacts their lives.

We also talk about baseball, rugby, sharks, and you will have the joy of listening to the particular lilt of Janice's accent.

As always, I want you to know Peter and Janice as more than just their role as Leo's parents. Peter and Janice live in Queensland, Australia and, when I spoke to them, they had just returned from a trip to the Barrier Reef.

- Janice McRandal

Oh, yes, just you know, it's one of the world's beautiful spots, so it was really quite a stunningly different experience to the pandemic apathy that set in to go our beautiful rhythm and just have these days in a day or two in paradise.

- Liesel Mertes

Are you snorkelers? Are you divers? Do you do some of both?

- Peter Kline

No, that was the first time I have ever snorkel.

- Janice McRandal

Oh, really? I didn't know that.

- Peter Kline

Yeah, I know. Never snorkel before.

- Janice McRandal

Oh, well that's the way to do it. That's the way it is if you're going to be the first time.

Peter Kline

Go. Go big.

You might have gathered that Peter is not a native of Australia. Peter was born in Houston. He traveled to Chicago, where we overlapped at Wheaton College for our undergraduate work. And, after marrying Janice, he moved to Australia where he teaches and works with young ordinands at the Charles Sturt University in Australia, a theological college that helps those seeking ordination in the Anglican Church. When he is not working, Peter enjoys a few hobbies.

- Peter Kline

When I'm not teaching. So I, I love to paint. That's probably the number one thing that I that I do when I find the time, which is difficult these days to sneak in time to paint. Yeah, that's what I, I love to make art and paint. So that's, that's kind of my main thing that I try to do outside of my professional life.

- Peter Kline

And I also I have also taken up or re-entered rather playing baseball. So, you know, moving to Australia, you know, you have to find ways to stay connected to your American roots.

Janice is also a theologian. As you will hear in a little bit, that is acutally one of the sparks that brought Peter and Janice together. Janice works at the University of Divinity and is the director of the Centre for Discourse, which does public theology. She, like Peter, also loves sport.

- Janice McRandal

So I'm a big lover of sport, so I am part of that clichéd Australian sport loving lifestyle. So I play by play sport. I play touch football, which is touch rugby, I guess would be the way to say it.

- Janice McRandal

I played that for twenty eight years, so since I was 12. So I just play weekly in a more and much more social team. Again, not super serious, competitive and I really enjoy that.

- Janice McRandal

I will only give it up when my body says I absolutely have to.

Janice also loves to cook

- Peter Kline

One of Janice's skills is actually to clean as she cooks. Yeah. So so it's often like to get to the end of a cooking session and you have this amazing, delicious, beautiful food and a clean kitchen here. And it's like what, what did you do that.

- Janice McRandal

It is my superpower in the kitchen. I am that rare cook that like is always cleaning as she goes. And there's nothing makes me happier.

- Liesel Mertes

And would you give us an overview of your origins story?

- Liesel Mertes

Did you get together?

- Peter Kline

Oh, the two of us? Yes. Yeah,

- Janice McRandal

Entirely by accident. Certainly not. Certainly not something one would plan for. So we both work in the same field in academia. We're both in backgrounds, in and teaching in theology. And we had connected over a number of things.

- Janice McRandal

I think we first met at a conference in 2012 and we had mutual friends and sort of knew each other in a very friendly way. And then a very good friend of mine was moving to Nashville to start a Ph.D. in the same similar program, same school as where Peter was at Vanderbilt.

- Janice McRandal

And I was I had about a year before going through a separation and divorce and was visiting her. And I knew a number of people through the theological world at Vanderbilt. Peter is one of them. And we had made plans to go for breakfast in a very you know, neither of us were at all interested in each other. It was just a great big accident that came upon us.

- Liesel Mertes

And do you remember expressly like that initial breakfast? Can you go back and think, you know, like, I got the omelette and I was just over bacon or.

- Janice McRandal

Yeah, yeah. What did you have for breakfast? Do you remember?

- Peter Kline

Yeah, it was the I know what I can see and picture it.

- Janice McRandal

I can remember the where I had to go to the Cuban breakfast is what it was called on the menu. Yeah that's right.

- Janice McRandal

And then Peter took me to erm I'm, I've got a high level of camp and I delight in weird awful things. And Peter turns to the, the Parthenon in Nashville, which I did. People kept saying to me, when you're in Nashville you should go to the Parthenon. I was assuming it was some Greek restaurant that people liked. I had no idea about this actual enormous structure replica.

- Janice McRandal

Peter took me to that and it was just delightful. And we jumped on the back of the elementary school field trip. Yep. It was just a fun, enjoyable day.

MUSICAL TRANSITION

– Janice McRandal

So, you know, after I spent quite a bit of time with Peter during that trip in Nashville, and then Peter came to see me while I was in New York.

- Janice McRandal

And just by chance, he was coming to Australia two weeks later to a conference I was organising. And we'd already planned as friends like in a purely platonic way, for him to come and stay with me and my home. And so at the end of both of these trips, we realized that we were falling in love. And what are we going to do now?

- Janice McRandal

So we did two years very, very long because, you know, people say long distance to our flights and we love.

- Janice McRandal

So it was a long two years.

- Janice McRandal

But we've you know, we've both been divorced. We didn't want to rush into anything. So we thought we did the work we had to do to make sure this was the right move forward for us. And then at the end of that two years, Peter moved to Australia and we were married. Woo-hoo!

Peter and Janice were married, twice, in 2016. They had a ceremony in Australia and another in Houston. Janice entered the marriage with two children, a son and a daughter who were six and nine. And Janice and Peter knew they wanted to have a child together.

- Liesel Mertes

How soon after you got married did you find out you were pregnant?

- Janice McRandal

Well, immediately. So I had just gone off the pill and we came back from from our second wedding. So we already had this first wedding, came back from the second wedding in America. And I was immediately pregnant. And we were really like that was in the first like we were very shocked and was far sooner than we had anticipated.

- Janice McRandal

But we're excited. Yeah. And then but I we had a miscarriage at eight weeks and, you know, it was really sad about that. And it was all, you know, been such a whirlwind. We'd just gotten married. Peter's moved halfway across the world and then that suddenly happened. So much had been happening.

- Janice McRandal

And so then we decided we would just stop trying for six months or so, for four or five months just to give us some time.

- Janice McRandal

All of us had fallen pregnant easily, so we would just give her some space. And then I fell pregnant again in the following, like six months later if and we had an ultrasound at nine weeks and there was no hobby.

- Janice McRandal

Yes. And that I would say that hit us much harder. Yeah. The second one. Yeah. And then we, you know, so I had to have surgery and DNC and the eldest two children were with us that day. There was nothing we could do about it. So it was all just it was a sad, confronting time and we felt very sad about that.

- Janice McRandal

So that was April, May, May when I had that surgery and what, twenty seven, three point thirty seven.

- Janice McRandal

And I think and now we're starting to feel a little bit anxious. And of course, you know this as a woman gets older, like for me, there is suddenly that internalized anxiety of like Peter to has not had his own children. What if I can't, what if, what if this becomes a thing? Now I start having repeat miscarriages and we kind have a baby. He's my, I'm three years older than him.

- Janice McRandal

So is he going to regret having married me? All these kind of fears and griefs and they weren't unspoken. We we we shared that with each other, but it felt a level of intensity around that which are many, many people in all sorts of different situations would relate to, I'm sure.

- Liesel Mertes

And then so much tumult in just this first stretch of being married, right?

- Janice McRandal

Yeah, a lot. Absolutely. And, you know, it's a second marriage for both of us.

- Janice McRandal

So you're so anxious not to get it wrong.

- Peter Kline

That's right.

- Janice McRandal

And there's so much baggage in history that you carry into that that you're trying to negotiate and not lose yourself. You know, that's a big fear for suddenly for us, I think. Would you say that after divorce?

- Peter Kline

Yeah, definitely and figuring out and carrying all of that and figuring out how to. You know, be the new family that we're trying to be both with Jesse and Penelope and trying to bring another child into that, it's just a lot, right, is just a lot of.

- Janice McRandal

And you've just moved and you just moved. Right.

- Peter Kline

So you're figuring out how to be married again. And and it's you know, it's a second marriage. It's just very different from first marriage. And so, yeah, it's it's just a lot. Yeah. Shorthold so then so then in August, so it wasn't very far.

- Janice McRandal

So obviously we didn't have difficulty falling pregnant. Then in August we found out it was the lowest.

- Janice McRandal

No, in October it was in October we found that we were pregnant with Leo. Yeah.

- Janice McRandal

Yeah. And we were nervous. We were scared and anxious. The first three months I think I had about four or five ultrasounds and I was having all sorts of symptoms.

- Janice McRandal

It actually like there were real symptoms. But I think the biggest symptom was my anxiety.

- Liesel Mertes

Absolutely, after having those losses, just I I imagine it would be very easy to be overshadowed by the uncertainty, right?

- Janice McRandal

Absolutely. We were. Just hoping and praying and biding time. But once we got there, I think once we got through that three months, we definitely. To level, you know, as much as we could calm down and feel excited and happy and secure and looking forward to having a baby together

Janice and Peter are happy, expectant. They are eight weeks away from Leo's due date. Janice was lecturing at the college and Peter left to go and hear an Australian author, Tom Winton, talk about a new book release.

- Peter Kline

And I had traveled how many hours was about two to two and a half hours across state lines and then it down into New South Wales from Queensland to go hear him talk about his new book. Janice started feeling

- Janice McRandal

Well, I guess I was having contractions then. I was in complete denial about that.

- Janice McRandal

I rang the hospital and said, I'm very sure I'm not having a baby. But and and then the I guess the midwife I spoke to said, well, well, I really think you should come in and maybe you should come in. So but Peter was not at home. I rang him and I said, yes, that's right.

- Peter Kline

I think what you I think the first text you texted me was, you know, don't don't panic. Don't worry, the baby's not arriving, but I'm going to the hospital just in case I think was your first to and I was like, this is not good. So as soon as I got that text and realised that she was on her way to the hospital, I just left, right and left where I was and started driving, driving home.

A friend takes Janice to the hospital as Peter is rushing home, racking up speeding tickets from Australia's camera monitoring system. Meanwhile, doctor's are trying to slow down Janice's labor, she will need a C-section.

- Janice McRandal

So I made that spinal block. They could they failed it. Three attempts to get this one block in, which is very unpleasant for me. And, you know, I'm having these very regular contractions, but it's slowed down the process significantly. And Peter made it clear, was being brought like into the operating theatre at this point.

Janice McRandal

When we when Peter arrived and I walked into the operating theatre and within five minutes, Leo had arrived.

- Liesel Mertes

Yeah, that's so intense for both of you.

- Janice McRandal

It was very intense. Like Peter arrived into, like, you know, a mess of adrenaline. Yeah.

- Janice McRandal

Because he's come speeding along this freeway thinking he's not going he designed himself to not making it.

- Peter Kline

But yeah, I thought that kind of halfway through I was like, oh, I don't know if I'm going to make it. And I had to turn myself in. So it was a little bit, you know, OK, I had to go through my sort of mini even grieving process as I was driving as I go into the with the birth of my child and OK. But I just hope he's OK or, you know, so all that kind of stuff,

Because Leo has come eight weeks early. He has to initially go to the NICU. But he is strong and moving and is soon moved to a special care nursey where he has to stay for the next four weeks.

- Janice McRandal

So you have to adjust rapidly. And for the first few days, I was just in shock. You know, I didn't believe I was having a baby. And suddenly there was a baby and that also had a mother, a third C-section. And I'm just about to turn 38. And I was just deeply in shock. But then you you have to rapidly adapt. And I have to start expressing milk, which is the liquid gold, trying to get that in.

- Janice McRandal

And and the pressure in Australia public hospital system, the special care unit, they have milk banks donated breast milk. Also, the research shows how beneficial this is for especially premature babies. But they will they is a very limited supply. So they will only provide the milk. A premature baby needs up to thirty six week gestation. Then they have to cut them off. They just don't have enough.

- Janice McRandal

They need milk. So there's this immediate pressure placed on you. You need to get your milk supply in and be producing enough to to be feeding this baby by thirty six weeks and providing all the nutritional need to. That with them was the immediate pressure on me. OK, I've got to be expressing milk constantly and it was just a surreal kind of, you know, you adapt immediately to this program. And we were both, you know, routine of getting up in the morning going, spending the day at the hospital, doing his cares, as they call it, changing him, nursing him and doing skin to skin as much as possible and starting to teach him how to suckle on slowly doing that and then going home.

- Janice McRandal

And as you know, every three hours expressing that just became a routine for four weeks. Yeah, I think I that's a strange, surreal, exhausting routine.

- Janice McRandal

And we were moving because we, like many idiots, had planned to move four weeks before he was going to be born. So which actually meant around the time he then was coming home, we were moving. Yeah.

- Janice McRandal

So it was like and then Peter got poisoned so severely he had to go in an ambulance line hospital.

- Janice McRandal

It was just it was a difficult time.

- Liesel Mertes

That I in my experience with being in the NICU or having to not not me, but having a child in the NICU. You know, as you were talking, the word that came to mind was totalizing. You know, it's just I felt that it was amazing how your world just. Is encompassed in this building walls and that these other things that, like I had been doing previously or caring about and, you know, even like moving and it just, you know, just the reality of being present there with your child seems almost overwhelming, let alone trying to incorporate any other need or reality out of those walls.

- Janice McRandal

Yeah, no, this is it. But you would come home at the end of the day and the home was suddenly this strange alien place. I didn't care about it. I'm just going to drop everything.

- Janice McRandal

Eight, go to sleep and get back to the hospital, like maybe three hours later.

- Peter Kline

Yeah, that's right.

- Peter Kline

Yeah, it's true. It is a totalizing experience in space. And I mean that what that makes me think of is actually where we ended up leaving and going home, which is this joyful thing. You finally get to bring our baby home.

- Peter Kline

But remember this. Great. Like sadness, leaving, leaving the hospital. And it's a strange experience because you're both happy to be finally leaving and you're leaving is good news. But at the same time, it's this this has been your whole world.

- Peter Kline

And also it's been our whole support network. It's been our whole lifeline. It's been our hope for for you know, I mean, a month isn't a long time. But when you're, you know, going through something like that, it is a long time. It's just it's a life altering adapted quickly. It's a life altering, transformative space you've been through. So it's like you're having to say goodbye to all of that all at once. That was an overwhelming experience of itself.

- Janice McRandal

And this child that you now have deeply bonded with very quickly, you can't remember when they didn't exist has never been outside of these walls.

- Peter Kline

Yeah, that's right. And is and has never been outside like a very extensive team of doctors and nurses caring. And now it's just OK. Well, it's our responsibility is the whole world.

Liesel Mertes

You had your own expulsion from a womb like setting up.

Peter and Janice go home feeling confident and optimistic. Leo had done well; he didn't have substantial complications. However, Leo had to be readmitted several months later. He was not gaining weight or meeting expected milestones.

- Peter Kline

What does that mean, we don't know, is it just because he's or is it just because he's premature and that he's just developing a bit slower and there's the whole, you know, kind of corrected age thing when they're they're kind of age, but then they have this corrected age.

- Janice McRandal

So you can be corrected. But he wasn't quite getting the correct age milestones.

- Peter Kline

So it's all it's it's it was all that. And and, of course, you know, within a like within a relationship, a parenting relationship, I mean, in any circumstance, parents interpret their children differently. But there's like, you know, I feel like we had different just a different interpretative lenses. Through what, through what to kind of interpret what's going on. You.

- Peter Kline

Yeah, because Janice has had two kids before, and so she knows about what a typical developing kid looks like and I haven't.

- Peter Kline

But I also think Janice was more quick just to say I think something's wrong here. I think Leo is not developing. And I think I was slower. Maybe I was I don't think I was in denial about it, but I think it was just slower coming around to OK, yeah, there is something

- Janice McRandal

And I process trauma really quickly. That's why I saw myself in the deep end. So I guess it's the personality type. Yes. Like. That's one way I deal with with trauma is by naming it as quickly as possible so Leo would eventually be diagnosed. I even said that at three months, I think that he might have cerebral palsy. Yeah. So, which probably at that stage seemed very premature pronouncement, but that is certainly how I deal with that.

- Liesel Mertes

That was the force of your gut and intuition. Yeah. Yeah. How how old was he when he officially received the diagnosis of cerebral palsy?

- Peter Kline

How old was he?

- Janice McRandal

Was he he was he was quite young. He was 10 months old. Well, 10 to 11 months old. And he had been admitted to hospital when he was seven months old because he's weight had, you know, he'd gone from starting at the sixtieth percentile to under four and negative into the negative.

- Janice McRandal

And he was clear at this point, they're starting to use the language of global developmental delay.

- Janice McRandal

So this is a very, very floppy baby. So very low tone. So he'd never, you know, rolled over. He still couldn't hold his head. He couldn't hold his head up. He was, it was like he was a one month old, really, for the largely for the first year of his life.

- Janice McRandal

So he was admitted and they decided to put an NG tube back in which he'd had in the special care unit to get his nutrition up. And that had that he'd be we'd been in the hospital for two weeks in the initial round of trying to get his weight on and begin a diagnostic process. And Peter has a nephew with a mitochondrial disease. And so there was a high level of concern around genetic, very serious and potentially life ending genetic disorders for Leo.

- Janice McRandal

So in that first round, we'd gone through this process of testing for all the big scary things like Mito, Fragile Z, Prater-Willi.

- Janice McRandal

So he'd had comprehensive testing very early on and we'd seen really the best pediatric pediatric geneticist in this in the state very early on and eliminated those things. So there was a certain relief that came with that, like certainly we'd gone from the worst. What might seem, I guess for many people, the worst case scenario to something that some that's you know, it's all relative. Some starting to talk about CP seemed much at that point. I think a bit of a relief.

- Liesel Mertes

I just imagine that there's such a profound. Level of what is being asked of you on like an emotional and physical level, whether that's, you know, presently or back then, that for people that have children that don't have, you know, developmental delays or things like that, like that, they can't quite fathom just some of the dailiness of what you're having to incorporate along with this overarching kind of emotional like uncertainty.

- Liesel Mertes

I might be wrong about that, but if any of that sparks something in you, I'd love to have either of you or both speak about that yet.

- Janice McRandal

So definitely I think that around the time of Leo's diagnosis, I was I was not up for this. Like I had had such a traumatic year since his birth and I had not recovered well from the C-section, multiple infections. And his feeding was absolutely erratic. So even when he had the energy to put back in at seven months, Leo was constantly on the breast, sometimes going with just 20 minute breaks and he never slept. Occasionally he'd sleep a two hour span and that would be it.

- Janice McRandal

And I had two other children to care for their own needs and was constantly feeding this child or he was crying, needing, settling. And so I think by the time it got to around his diagnosis and there was late before, it's really an unknown future.

- Janice McRandal

I was I was not up for this and probably I was depressed. Probably I had some postnatal depression. And so I say at that time, there was enormous pressure on Peter. I like feeling that I'm on the brink of maybe not being able to, like, go on, which I don't think was the case, but that feeling was always there.

- Janice McRandal

If not, I can't do it anymore Peter I can't do this and I go to sleep. I was so exhausted.

- Peter Kline

Yeah, I mean, for a good I mean, over a year, it's just like you're living on the absolute edge of your resources, like emotional, physical, cognitive. It's just like you're just have to set up camp there, right. Yeah. And it's it's it's just overwhelming. And I think my like remembering back, like I associate like so much of this around, like the physical symbol for this is Leo's NG tube, his nasogastric tube, the tube that goes into his nose and down into his stomach, just having to manage and deal with that.

- Peter Kline

You know, it's a tiny little piece of plastic, but it it just caused so much stress and trauma. And, you know, because you're having to take this thing to your child's face every day and it comes off of a day out at least once a day on average, once a day, pull it out. And at the beginning, we had to go to the emergency room every time to have it reinserted. Eventually, I learned how to put it back in myself, but it was just a trauma.

- Peter Kline

But it's just like a traumatic experience every time it comes out and you have to put it back in. And and just the constant anxiety around, I mean, just the weight and nutrition you're having to keep track of. But then it's just a, the constant, like constant monitoring for him not to pull the thing out or to keep his hands away from vomited every time he nearly in tears.

- Janice McRandal

Yeah. So it's it's just, you know, it's just like it felt like there was never a moment in which you could just. Let your baby be right, you know, or enjoy your baby or enjoy it, just this concept.

- Janice McRandal

Yeah. So, yeah, it was tough. So I didn't know if it's a case of, like, what's being asked of us is too big right now in terms of a lifetime.

- Janice McRandal

So we're just going to keep struggling along day by day. And that really the turning point was when after some MRI's and various brain scans, the hospital decided we could do something about sleeping and sleep clinic where we rapidly weaned him and got him off the breast and he started taking some melatonin. And yeah, within a month or two, he started sleeping. And that was a major turning point for us. He's about 15 months old then before.

- Liesel Mertes

That is a long time to be for him to be, you know, not sleeping well and a long time for you guys. All right. I can imagine how that would feel like a very profound turning point.

- Janice McRandal

Well, it's probably more, I should say, is probably more of a turning point for me, because I think I had I was so utterly exhausted.

- Janice McRandal

It was at that point I said, right, Peter, you're up. I need to sleep for a year and you're up. And I do think that's right. That's right. Just and that's what was needed is appropriate. But it is probably more of a turning point for me.

- Peter Kline

Yeah. Because you could in a way you could let go of. Of certain, to a certain degree, certain tasks and the constancy of certain tasks around caring for Leo and it could transfer to me in a certain way. So, yeah.

- Janice McRandal

But also, it's a major turning point for Leo, this poor child gets what he desperately needs, sleep, sleep. So. And, you know, three or four months after that, he actually started sleeping. He had a surgery to have a peg inserted tube, which in Australia happens far more even then after having an NG tube for a year, almost a year was soon in Australia.

- Janice McRandal

So I know in America, friends and relatives, pigs get put in after for six weeks, even even up until a year in Australia. They're reluctant to do that as a permanent move. So we had to really push to have that put in. And that really was the final big change for Leo that he hated this to be pulled it out every day and then we'd have to pin him down again. And and that was just a great relief. And he's been such a happy little boy since, like, it's like a different child since birth, to sleep and getting rid of it and the NG tube.

- Janice McRandal

Yeah. And he became happy and we finally could delight in him and enjoy at that time together and which hadn't really been that possible up until this point.

We will return to Peter and Janice in just a moment. But we need to take a quick break to acknowledge our sponsors. The first is FullStack PEO. FullStack is a full-service benefits firm here in Indianapolis. The specialize in helping small business owners and entrepreneurs navigate tasks like payroll and open enrollment. Their talented team skillfully handles all of those details, caring for your people so you can grow your business.

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Now, back to my conversation with Peter and Janice…

- Liesel Mertes

Tell me tell me a little bit about September 2020. Leo, what are things that you are especially enjoying about him this month?

- Peter Kline

This month. Yeah, we let's see. Well so many speech, so many things. So, so he's come this year. He's come a long way with his speech. So he's he started babbling this year

- Janice McRandal

A few months ago really like using consonants and vowels.

- Peter Kline

And so he's still not you know, he's still not anywhere near, you know, words or that kind of and he may never get there. We don't know. But just in terms of his vocalizations and ability to express and communicate things with,

- Janice McRandal

I'm pretty sure he said hi to us a couple of times this week. The three walked in from work. Hi, Leo. And he said hi back.

- Peter Kline

Yeah. So that's the delight. Yeah.

- Peter Kline

So that's that's been wonderful. It's wonderful to see his. Ability to do like his physical development and ability to play with things, and even just yesterday he was able to put together successive rolls and roll halfway across the living room to go get a toy that he was wanting. And that was just wonderful to see. You know,

- Janice McRandal

I guess we're really starting to see his agency. Yeah, it's interesting that we haven't previously and it's such a big broad, CP is such a big, broad, questionable diagnosis that it doesn't give you any sense of where you're heading or what might be the future for you.

- Janice McRandal

So it's like discovering all the time, ever, any time something new develops. Oh, and he can do that now.

- Peter Kline

Yeah. Another another big thing is his eating. So we're actually currently in the midst of trying to wean him from his feeding tube. So this is another big weaning process. So it's both it's both a kind of new stressor, but also another source of delight to really kind of see him picking up his ability to eat orally. So so we're kind of slowly reducing the amount that we put through his tube to try to encourage him to be able to gain his oral appetite.

- Peter Kline

So and he's been doing overall, he's been doing really well. So to see him have a new relationship with food, be able to enjoy food, to be able to figure out what kinds of foods in particular he likes. His ability to drink, you know, so that's, you know, to drink water and liquids and like

- Peter Kline

So it's so it's really it's just a lot of these very simple, basic developmental things that with Leo are stretched out. And and very slowly emerging, but it's it's just delightful to watch them absolutely happen across this very long, slow timeline.

- Janice McRandal

I mean, I feel like we've jumped stories because we're now smiling. Our energy is picked up. It's like when these things occurred, we're almost talking about a different child. Like he was so hungry and tired for so long he couldn't emerge from himself.

- Peter Kline

That's right.

- Liesel Mertes

And Janice, you mentioned some of the uncertainty within a CP diagnosis. How have you two, and I imagine it's like, a becoming not something that you've just figured out, but what what is important for you as you orient your own expectations and your parenting within some of the uncertainty that CP brings things into your family?

- Janice McRandal

Yeah, I guess, you know, some of that happens on a theoretical intellectual level. You know, we're both academics. I'm just stopping somebody at our front door. We need to oh, we're having mandatory fire extinguishers, which are. Hello. Sorry. No, that's fine for me to do it if this is in the background. Did you want me to go? Are you happy for me to continue this a little bit of noise in the background or do you want me to wait? How about you continue and if at any moment it becomes intolerable clamor, I will cause you OK? Yeah. So I think some of that happened on a theoretical level of thinking through, well, what does what does it intellectually mean to to think about disability? And both Peter and I in scholarship have, you know, read from disability studies in the past. So it's there not unknown theoretical questions to us, but also thinking through as parents.

- Janice McRandal

What does it mean to, to prioritize certain forms of development, for example, you know, like one of the things around this idea of what if my child never says mommy, like, what would that mean to me? And would that be a lesser that be a grief because who he is is not enough? For example, theoretical questions around that.

- Janice McRandal

But the, but the big emotional grief part, I think, and this is something Peter and I have talked about a lot, is really it's largely suspended because we don't know what we're grieving at any given time. We don't know what what will or will not emerge or happen for Leo at this point.

- Janice McRandal

We don't even have great indicators. I mean, we know that it's very unlikely, for example, Leo will walk unassisted ever. That's really that's that's off the table. But we don't know to what level he'll be able to. self-propel in a wheelchair, for example, the walker use a walker, we don't know.

- Janice McRandal

Speech, again, as Peter said, is unknown. And even even where his cognitive ability is that we're a long way off really being able to have maybe four or five or six, we might have a better idea around that.

- Janice McRandal

But so it's a real. It's an unusual. Way to experience grief in that if it's an unknowing, it's a grief, it's an unknowing grief. So that's something where you come up against.

- Janice McRandal

He'll do something. And he started babbling, Peter said. And some of that babble is saying, Mum, Mum, Mum or Dad, Dad, dad. And it's only very occasional and it's not it's it's not really directed at us. But even to hear that sound and it's very emotional experience. And and so then you suddenly aware of all this grief that you had suspended somewhere in the air and you didn't know you were doing that.

- Peter Kline

Yeah. So it's it's unpredictable and it it hits you in unpredictable ways. And both I mean, I would say both the sort of both the joy and the grief of parenting. Leo, it unfolds in that kind of slow, unique time of itself, right? Yeah.

- Janice McRandal

And it's so important for us to be able to hold that and care for that, but also to foster a relation to Leo, where he is always enough, wherever he is in any given day to to find a way to hold both of those things and give loving care to both of those things.

- Janice McRandal

And they're the kind of conversations we have of how do we make room for all of that.

- Peter Kline

And it feels part of the difficulties that Leo currently has a lot of therapy every week, you know, four or five therapy sessions every week with physio speech, occupational therapy. So it's a lot of this, you know, early intervention therapy working really hard to maximise this window of neuroplasticity to potentially allow him to develop as much as he possibly can. So there's this big emphasis on doing all of this, getting somewhere really and progressing.

- Peter Kline

So and it's it's often I find it often difficult to feel like fully throwing yourself into that, which brings with it its own sense of guilt. And I'm never doing enough, never doing enough of working enough with them and never doing enough therapy outside of therapy hours with them and knowing the importance of that, but also trying to manage the responsibility and guilt that comes along with that while also also being clear on. But every day with him is a gift and every day is enough.

- Peter Kline

That's it. It's it's holding those two things together that often feels very difficult, but that's kind of what we're given to manage.

- Liesel Mertes

Now, how do you how do you help? Like both express to Leo and also express to yourself those moments of this is enough, like what does that look or feel like to you?

- Janice McRandal

Yeah, I think one thing that's become more accessible for me at least, is talking to Leo and and talking to him in meaningful ways and feeling a sense of there's a window of communication that's definitely opened up, that that's a way of relating between us right now. So I'm able to talk to him and and he's able to communicate back to me in various ways. And that is just become such the last few months that that's opened up. It just feels like such a precious, beautiful gift and a way of us being present together in any given moment.

- Janice McRandal

And it always feels enough. So I you know, it takes some time with people with disabilities to figure out how we going to communicate to each other because not him. May I come with all these assumptions about how that's going to work and happen and I have to break some of that down and learn new ways.

- Janice McRandal

So he's been teaching us how to communicate with him and now that's opening up. And really, it's it feels like a very beautiful gift that allows that mode of being together.

- Peter Kline

Yeah, I mean, it is just about finding ways every day to communicate the just the joy and enough ness, if you want to put it like that, of just being together. I mean, even even even in terms of the therapies that he has every day and his therapists are wonderful about this. It's all about making those those experiences playful, joyful experiences and and never, you know, and it's it's again, it's a balance between trying to push him in certain directions, but then also never thinking that you are expecting or requiring him to do anything at all.

- Peter Kline

So it's about opening up spaces of playful opportunity to explore what he can do. And then what he and what he can do is wonderful, whatever that is. Yeah. So it's it's it's. Yeah. And just being with him in that, you know, just being just the, you know, just the sheer being with is enough.

- Liesel Mertes

I feel like you're giving voice to what is an underlying reality and tension that is woven throughout any parenting relationship, which is, you know, how are you orienting with your expectation towards your child? And, you know, for people who have children who are not affected by disabilities, there there's this whole level of expectation that we feel like is, you know, societally or, you know, from a family level like these are right expectations that I need to have. But I will be pondering your words because I think that just the delight in being with someone just for who they are in that moment is actually such a full hearted gift that we are seeking in any relationship, but often so withholding and how we actually give that, especially to a woman, you know, in our preoccupied and frantic state of how parenting can be.

- Janice Kline

Right. Absolutely. And I think that, you know, one of the things that and I you know, people with disabilities are not here to teach us lessons about ourselves. And so we have to go through that kind of thinking. But I think that one of the things I've experienced with Leo that I have not yet learned how to do with my other children is to get off myself, you know, to start projecting, as you said, my expectations or transference of or repetitions of all sorts of material onto my other children.

- Janice McRandal

I think I experience that in a very different way with Leo. You and not me. And I am not you. We are two people that can actually be together and that opens up a whole the whole possibility of relation, and that has been at times quite wonderous. Hmm.

- Liesel Mertes

I imagine in this journey you have needed the support of a community of people as you think about some of that intense, you know, first year where there was no sleeping and marginal eating into the stage that you are now. What have been some of the best ways that people have come alongside you and supported you in your journey?

- Janice McRandal

Yeah, I think we mentioned when the weekend or the weekend before Leah was coming home from the special care unit, we were moving. So this is certainly memorable. Peter's colleagues and maybe some of my colleagues I can't remember, and also students of both of ours moved out like they moved our home.

- Janice McRandal

They moved all their stuff and unpacked the cupboards in the kitchen and put together new furniture that we had purchased. And friends came and painted bedrooms for the older two children so that it would be special for them. So that was like that was a big mammoth effort that was such a practical help for support. The other memorable and very helpful practical things we had.

- Janice McRandal

I mean, we must have had 100 meals cooked for us in the first year of Leo's life. I'm not exaggerating. A whole village just kept turning up to provide food for us. And that was super helpful in just a practical way to relieve the tension of those kind of daily tasks that seemed insurmountable, I would say. What do you think of Peter in terms of the support network that we experienced?

- Peter Kline

We had some friends once pay for cleaner to come for a whole day here. That was wonderful. Yes, yes, yes.

- Peter Kline

It just yeah, there's all that all those kind of practical necessities of just getting through the day and getting through the week and getting through the month. I think we were very grateful to have a nice community around us. Right. And then I guess there's just the there's just also the. And I would say, then it's the kind of circle of people then reduces, in terms of the people who can actually simply be present with you in more intimate ways about what's unfolding or what's going on, so, yes, they're probably key people in our lives who are, in various ways, able to simply share with us.

- Peter Kline

And again, just even just again, it's about just being with. Right? In some ways. Just being with us, with us and what's what's going on. That's that's been super, super important.

- Liesel Mertes

Hmm, what you manage that you mentioned, that smaller circle of people who are equipped to do that, which perhaps is a sideways way of easing in to the follow up question, which

- Liesel Mertes

What are some of the things that people have done that have really set your teeth on edge where you think, oh, my gosh, like, just don't do this?

- Liesel Mertes

If I could warn somebody off of these actions, these are bad ones or words.

- Peter Kline

Yeah, I mean, there's been there's been a few, like, super unhelpful, upsetting, just like comments about about what Leo is going through, but we're going to be the one that sticks out in my mind is when we're right in the midst of of going through these hospitalizations with Leo and these worrying worrying about Leo's weight. You know, just like I think we received one comment about some a person said, oh, I wish I I wish I had that problem, meaning the problem of not gaining weight.

- Peter Kline

Right. So, you know, it's it's like a at the time it was like a throwaway line, but it's one of those lines that end up like jabbing you and staying with you. And both Janice and I in various times just randomly will think back to that and just get upset about it again. Just this year, really.

- Janice McRandal

And there were four or five people in our lives that continue to say this over and over. Is he'll get there. This child is not developing, I know something's wrong with started talking to the doctors. We're you know, we're trying this, his nutrients are being boosted. We're trying this. And people that just kept saying "You'll get there in the end, they all do. They all get there in the end", which, you know, is patently untrue.

- Janice McRandal

Right. Not every like clearly that's untrue. And too, you're not hearing me. I wanted you to hear me in my pain and anxiety and fear right now. And, in order to make yourself feel better, you're just dismissing what I just said.

- Janice McRandal

That one, it's still wounds me and still hurts me. These people, you know, the people that are still some people still in my life for professional reasons that I that just kept saying it over and over.

- Janice McRandal

And it feels it feels very disappointing that that's the way they approached us. Yes.

- Liesel Mertes

Yeah, and a profound sense of of not being heard and also just thinking exactly what you said observationally, that's not even true, right?

- Janice McRandal

You actually, surely you know, that's untrue?. Like why? You know, so that was really that that was a source of great frustration. And it feels like, you know, a relationship look like, I don't know, I can ever get past that. Now that you kept saying that to me and I know it was more about you than me, but that really says to me we're not in the same mode of relating to each other.

- Peter Kline

Yeah. Or that this particular challenge that we're going through is not one that you either want or can just travel with me through, right? Yeah, yeah.

- Janice McRandal

So, you know, I think there's all sorts of people that said silly things that they regret, but they don't linger. Yeah. It's the people that just repeatedly found ways to dismiss you one way or another or to minimize or to extrapolate these hopeful future that everything was going to be OK. Yeah.

- Liesel Mertes

If there is anyone listening who is in the midst of their own journey, whether it's cerebral palsy or a different diagnosis, that has caused them to have to reckon with a life that they would have with their child, that is not accessible and no one wanted it. What words would you offer to that person?

- Janice McRandal

Well, I guess I would. I guess my first thought is about any and all feelings of thoughts are OK.

- Janice McRandal

I hear that, like you, there's no right way to process through these griefs. And there's no. There's no feelings of loss that are shameful and there can be room for holding all of that. So, you know, I think we come into these experiences never expecting them even the most. The person who's thought through all the scenarios, you still there's never a deep level of expectation, there's no way there's no playbook on how to navigate it.

- Janice McRandal

That and I mean, the follow up to that would be to talk to a good therapist, talk to somebody like that, make and find a space somewhere where all those that emotional material can come to the fore and be given attention and held and cared for.

- Janice McRandal

And one of the things we noticed when there was in the special care nursery is all the women. Typically, it's mostly heterosexual couples, not it's a very normative sort of situation in there. And all the mothers would find each other typically in the room where they were expressing milk and tell their stories and grieve together. And the fathers would sit alone in the room and didn't know how to find each other.

- Janice McRandal

So I think especially if you're in a in a, you know, heterosexual relationship, that especially men need to find ways to to talk and gather and tell their stories.

- Peter Kline

Definitely. That would be one thing that stood out to us. That's it's something that I'm still still working through. But what is it what does it mean to have a support network around us and around me and around Leo? So, yeah, and that's what I would say is like, just be super intentional about building a support network that is not just like it's not just adequate, but that's that's really good.

- Peter Kline

And I'm thinking in terms of I think of like the therapists that we work with weekly and daily, in terms of doctors, I think in terms of friends, I think there are they're really, really wonderful people out there that can form a support network, that can turn parenting a child with disabilities into like a joyful experience and not just something that you're having to suffer through, although there is a suffering through.

- Peter Kline

That's part of it. But that's that. So that is part of making it a a flourishing experience. And I think that those people are out there, those particular therapists out there, those are there. And sometimes it takes a while to find them or to piece it all together. But I think it's possible. So I think just always pushing to. For a kind of quality of connectedness,

- Janice McRandal

yeah, I think it's super important and also make sure that you're always working towards health care and disability services for all.

- Peter Kline

That's right. That's right.

- Janice McRandal

So we live in a country. That's right. And that's I would also say that, you know, like just, you know, growing up in America and moving to Australia, you know, and we have a it's called the NDIS, the National Disability Insurance Scheme. It's not perfect, but it's it is part of Medicare as a part of the universal universal it. But it is a huge support, you know, gets funded through that in a really wonderful way.

- Janice McRandal

So everyone should be able to have equal access to choosing the therapeutic and medical teams that they need for a therapist with a disability or it's somebody in their family. So, yeah, there's all that look self care, but also fight the good fight. Stage a revolution.

- Liesel Mertes

That's right. Yeah, I hear that the level of of advocacy that is still really important in that. Thank you for giving voice to that. Thank you. This has been such a full conversation, is there anything that, again, thank you for? I realize that the gift of anyone's time is one of, you know, the kind of things that they can give.

MUSICAL TRANSITION

Here are three take-aways from y conversation with Peter and Janice:

• Be very careful with clichés and looking on the bright side.People toss out trite phrases because they, themselves, are profoundly uncomfortable with pain. And we rush people to a good conclusion because it makes us feel better. Janice and Peter both commented how painful it was to have people assure them, again and again, that everything would be just fine with Leo.
• There is a particular need for men to find and experience uplifting, emotionally accessible community as they go through hard times.This is a need for women as well but, as Janice mentioned, women are much more prone to find each other while men are off on their own. If you are a man listening to this episode, think of someone in your circle who is going through something hard. Give them a call, send a text, check in to see how they are doing and offer support.
• Support is both personal but there is also a structural aspect of supporting individuals and families that are not given equal access.The level of care and intervention and support services that Leo needs is large and expensive. And we need systems that make those services available and accessible. If you are interested in joining your voice to advocacy afforts, I have linked the Arc and the American Disabilities Advocates in the show notes.

The Arc: https://thearc.org/

American Disabilities Advocates: https://www.hrw.org/topic/disability-rights?gclid=Cj0KCQjwk8b7BRCaARIsAARRTL4kp445XLphPJlLKnomC3_s7JmukNkrcCBTZLAOIi0upuyJppuywdIaAt8cEALw_wcB

- Megan Flinn

I have, I have faced my own deep, like I have survived the thing, I think a lot of people have the great wounding or the great pain point of their life. And for those of us who have faced and wrestled through it and acknowledge it changes us. We then can turn to others and kind of say, like, I've been to my deepest, darkest parts of myself and come out on the other side like. That's possible for you too, the hope of that is true for everybody,

INTRO

Today's conversation is about grief and femininity and finding yourself in the midst of a hard loss. When Megan Flinn went in for a straightforward surgery that yielded a devastating outcome, her life changed dramatically. Her uterus was gone as was any dream of giving birth to a child of her own.

But before we jump into her story, a little bit more about Megan. Megan is an old and dear friend. We've shared so many conversations of the heart, she has spent the night by Moses (my son)'s side as he recovered from heart surgeries. She has been there for birthday parties and was the one who originally rescued Tozer, a smart and loving mutt of a dog that became a part of my family.

Megan is tough and warm and smart. She is brave and confident and capable of doing her own electric wiring. She has a penchant for stray dogs. Megan is currently pursuing her a Ph.D., working as a school counselor, and is the founder of her own non-profit, Hamza International that combines embodied therapeutic approaches with a consultative framework that honors community workers while bringing forward the best of brain science.

- Liesel Mertes

Observing you over the years, you know, a key part of what you bring to so much of what you do in life is just a push for for justice and being a voice for those who have been marginalized. So I imagine that that is is a narrative thread that goes through your experiences that are leading you to where you are today.

- Megan Flinn

Yeah, absolutely. And I think something. You know, just in recent events in our culture and our world, this idea of being a voice for the voiceless I kind of struggle with. That phrase not not because it's not a good phrase, but the fact that that phrase has to exist. Right. We remember even back when I was teaching, I was like, why is no one listening to these kids? Like, they're coming in every single day with the same story and no one is listening to them, so.

- Megan Flinn

How do I. I how do I redirect people's attention to their voice and sometimes that does require me to use mine and so. I think that has been the thread of, OK, I'll use my voice to redirect, and then sometimes I have to use it longer because people really are willing to listen right to the mark to those who. We would classify as marginalized or not listened to.

Before founding her non-profit, Megan first worked as a teacher.

- Megan Flinn

So I had gotten an education degree. I had been trained. I was a licensed teacher. I had checked all the boxes to get certification to teach in the state of Pennsylvania. And then when I was put at twenty two years old, but into a middle school classroom in North Philly, I was very underprepared for what my day actually looked like.

- Megan Flinn

And so it was a quick lesson. I always say that was the year I grew up because it was I had bills to pay, I had student loans to pay, and I had to figure it out. And my teaching training, my education training did not prepare me for what I needed to do in that classroom.

Megan was seeing the effects of trauma on the youth that she was serving. And she knew she wanted to understand it better. Megan moved from teaching to working with an Indianapolis non-profit called Outreach Inc, which serves homeless youth. My husband, Luke, worked there as well and that is where our paths first crossed.

- Liesel Mertes

So as soon as I was meeting you, you were in this journey of really moving towards paying a lot of attention to your health and getting a lot healthier.

- Liesel Mertes

What did that look like for you as you're also doing this like trauma, informed care and building your health up?

- Megan Flinn

Yeah, so. Right. So the it was interesting because at the place where we worked, it was a hot, you know, outreach was a high stress place. You know, we're dealing with significant trauma with our youth, constant change of schedules, constant kind of like. In our own hyper vigilance, as we were interacting with some pretty extreme behavior from the youth and from the community, and so it was not uncommon, especially for the female staff, to gain significant weight there or to have issues with their health due to the stress that we were undergoing.

- Megan Flinn

And so it was a constant conversation and outreach about, you know, we all did the paleo diet or we did we would work out, we would go do Cross Fit or things like that.

- Megan Flinn

And so the conversation about can I part

- Liesel Mertes

I want to ask because for people who have lived it, they're like, oh, absolutely. Yeah. You again, in that situation, for people who are maybe a couple of steps back who don't see that connection.

- Liesel Mertes

Tell me more. Why would gaining weight be something that would happen commonly?

- Megan Flinn

Yeah. Yeah, so I think when you're in that setting and you're and all of us were passionate about the work, we signed up for it not just as a job, but as we saw how. We, as ourselves, could have an impact in lives for the better, so it wasn't just a job, it was a passion project for a lot of us or a movement out of our passion for most of us. And so we were very committed and it was difficult work.

- Megan Flinn

So long hours, lots of crises.

- Megan Flinn

You know, my typical work week is not a 40 hour work week. It was more 60 or 80 hour work week because there was just significant crises constantly. And so what that meant was, you know, you're exhausted, you're tired, so then to go like take care of your own body or go do exercise after this, like significant, exhausting day or week, most of us kind of didn't do that.

- Megan Flinn

We had kind of centered our attention around, you know, helping the youth, helping the organization, focusing on the work and not so much on ourselves. And so that meant when we're hungry, we eat whatever was around, which was typically, you know, we had a budget to take you to McDonald's or Burger King or just whatever, fast food. So the food we were eating was not great. We didn't take we typically didn't have the time and space and energy to take care of our bodies.

- Megan Flinn

So there's no way that, you know, the world of food deserts. There is one little organic grocery store that was way too expensive for our budget.

- Megan Flinn

And so, yeah, the food that was available was not the help. It was not food that was necessarily providing the nutrients and care for our bodies that we needed, especially to deal with the stress and anxiety, which for us is one thing. And it was compounded a hundred fold for our youth who are physically stuck in that in those neighborhoods.

- Megan Flinn

So we ate what they ate and we kind of did what they did, which was not move very much and not eat very healthy. And so over the course of a couple of months or years, you know, your body starts to change accordingly. And a lot of us, especially the female staff, like I said, would gain weight.

- Megan Flinn

And so it was a constant conversation of how can we now then take care of ourselves? We're talking about self care.

- Megan Flinn

We're talking about maintaining ourselves long term and remaining in the work and not growing too unhealthy from it to have to quit. And so. You know, the staff would go to Cross Fit or we would talk about the paleo diet or things like that, and so I had done pretty I had gone to some pretty extreme measures to get my body healthy.

- Megan Flinn

And I was at this point, by the time of the surgery, probably one of the healthiest physically my body had been in my lifetime, definitely in my adult lifetime.

- Megan Flinn

So I felt like I was finally in control. Now, I've had a long term autoimmune disease since I was six years old. So my battle of controlling my body and being an ownership of my body was lifelong. And this came at a time when I felt like I finally gained some power over some control over my body. And then that's when you know it all it all happened at this point of I went in for my yearly exam and my doctor said something's not right here.

- Megan Flinn

Like, your stomach is really hard. It shouldn't be hard.

The consultations and tests began. The doctors told Megan that she had hard fibroid tumors within her uterus. They were obstructing her body's functioning…but were probably not cancerous. Megan makes plans for surgery.

- Megan Flinn

And I remember on this girl's weekend, a couple weeks before the surgery was scheduled, I said to them. I will not be OK if this doesn't work. I will not be OK, and that was probably the only time out loud that I had admitted any fear about it, because I had found the doctor that said, I think I can make this work.

- Megan Flinn

And so I was like, OK, she can make it work. Problem solved. It will be done.

- Megan Flinn

And so there was this one moment before the surgery where I said to those friends who had known me longer than most friends, none of any friends in Indiana had known me or I said, I'm not going to be OK if this happens. And they yeah.

- Megan Flinn

So that moment happened, but. I think it was pretty optimistic beforehand, it was, you know, no, and it was I remember.

- Liesel Mertes

I think it was March 23rd, because I was actually sure birthday that you went into surgery, which is a selfish way to remember, but I will always remember because it was my birthday. Yeah. Now. So so you go in, you have this realization. I've given voice to I won't be OK. Yeah, what happened? Surgery.

- Megan Flinn

So there's a there's like this interesting story where a friend of mine, Julia, who I had just asked her, I live here in Indiana.

- Megan Flinn

My whole family is out in Pennsylvania. I go in for the surgery and just say I just need a ride to the hospital. You don't just drop me off. You don't have to go to say, and

- Megan Flinn

so I went in that morning really thinking that after I went back, like, you know, they take you back a couple hours before things actually happen.

Megan is feeling good before surgery, optimistic and even a little flirtatious.

- Megan Flinn

but one nurse was like a really attractive guy. And so I was like, OK, like, I was in a mood where I was just like, everything's great. Like, you know, this is going to work.

- Megan Flinn

I was still like, look how cute I am here.

- Megan Flinn

I remember still being in like a really great mood. Because they the doctors and everybody was really were really friendly and upbeat and we had even said, like, this is going to go well. So everything was really great until I went to sleep.

- Liesel Mertes

And what did you awaken to?

- Megan Flinn

I was back in the room that I had been waiting in before. It's like there was a waiting area and then they take you. They took me back somewhere else to do the thing in my spine or whatever that was back in that room. And I woke to a nurse. You just said and I don't know if she spoken to me before and I had just not been coherent enough to remember, but the only word she said where they had to take it all.

- Megan Flinn

Yeah, that is what I woke up to and. My immediate reaction was I said, so no babies. That's literally what I said. I said so no babies.

There would be no babies. The doctors found that one of the tumors was connected to a large blood vessel. The bleeding would have been immense.

- Megan Flinn

So the question was, do we just leave it in there and it still just ruins her fertility anyway, or do we take it all out? And she survives. She just doesn't have, you know, a uterus anymore at 32.

Megan has to stay in the hospital for the next three days.

- Liesel Mertes

And so there's there's physical pain and recovery from pretty substantial surgery. Tell me about emotional weight of this being a baby, beginning with you.

- Megan Flinn

It's interesting because I think your mother said it, one of the best ways of a lot of wisdom she is, is she's her voice was.

- Megan Flinn

One of the ones that kind of just put words to it of. You know, a lot of women become mothers when they become mothers. It's kind of like this role that sometimes they're not like all the changes that you have to do with nurturing and caring. And all of that kind of comes when a baby comes and like you have to adjust and take on that role. And your mother kind of said, like, that is just kind of how I always was.

Megan Flinn

That's who I was. Obviously not. And there's all the boundaries and the, you know, appropriate roles you take.

- Megan Flinn

But that's the approach I took as a teacher. That's the approach I took with my Outreach girls. That's the approach I take. Even though as a therapist is like a nurturing, caring, aware of needs kind of approach. And so that kind of maternal eye or sense was something that was a part of me. Always and still is.

- Megan Flinn

And so. For me, it was like, does God or. This bigger picture. It's saying I'm not good enough to be a mom? Which was, for me, like the lifelong hope, you know, I started babysitting when I was 12 and my neighbor, I mean. They had another 12 year old in the house, but they wanted me to be there to babysit them like I was always identified as a caretaker or that role since I was little.

- Megan Flinn

And then my job in high school was to work in a daycare. I worked with babies and for over two years after school, you know, and. It was just this. You know, that internal battle that we all have of like, OK, things will happen or experiences will happen, and we have to battle this belief and remind ourselves like, no, we are good enough. This is this is like a lie or misconstrued, I belief about myself.

- Megan Flinn

But then when something so final like this happens. It was so. To to not. Let myself believe it, like even God, it was not good enough, it was really hard.

- Megan Flinn

And really complicated, right? Yeah, and so, uh. That part. Along with so that part was heavy in that part still.

- Megan Flinn

You know, I've done a lot of deep work in the past four years of who am I, what is my story? You don't start you don't have like even this experience led into the nonprofit of, like. Knowing who I am, knowing what I'm able to do, knowing. My skills and my innate personality and these God given gifts that I have are still very much needed and appropriate and worthwhile in this world.

- Megan Flinn

And like what what direction can I go where those fit into what the world needs? And like that the nonprofit doesn't happen if the surgery doesn't happen.

- Megan Flinn

And so in some regards, because it took this a look at myself and who I am and who God was and who the world is, where I was like. Bed, I was like stuck in my house, not even able to drive a car, or I had to have a friend come over and help me get up the stairs every night for six weeks.

- Megan Flinn

This idea of having needs and having to acknowledge them and having to ask for help and to not to be forced to not be independent, I think for me was this realization of like.

- Megan Flinn

Will someone show up for me? Will people show up for me the way that I've shown up for them? And that experience is like acknowledging my own needs and acknowledging. The fact that I'm not as independent as I would like to be. Was the first step and just kind of re-examining we talked about like looking at myself and who God is and who the world is. So that stuff was not a choice, but letting that happen and not being, you know, just kind of accepting.

- Megan Flinn

That those people are going to show up and trusting that was a deep healing spot for me.

- Liesel Mertes

Yeah,

- Megan Flinn

And then from there, you know, I, I went. It was. OK, now what and what is still true of me, what is still my identity, like, who am I? And I was still like this nurturing, caring person. And shortly after the surgery, maybe. A year and a half after is when I started grad school, so less than the year I think after I was applying to grad school. It was less than a year after I was applying, and so it was like, this is the moment.

- Megan Flinn

This is when. Like, this big thing happened, it it changed who I am and how I see myself. So now is the time for this big change of going back to grad school. And and the idea of becoming a therapist of like

- Megan Flinn

I have, I have faced my own deep, like I have survived the thing, I think a lot of people have the great wounding or the great pain point of their life. And for those of us who have faced and wrestled through it and acknowledge it changes us.

- Megan Flinn

We then can turn to others and kind of say, like, I've been to my deepest, darkest parts of myself and come out on the other side like. That's possible for you too, the hope of that is true for everybody, so having learned that kind of. That gave me the confidence to become a therapist, but kind of added to my like, no, if this is the work that I can do, I absolutely want to do it.

- Megan Flinn

I want to provide that idea that hope is an option in those dark places and may not be not hope that like everything will be cut and dry and clean and pretty at the end. But that survival and goodness or something is available even in those dark spaces.

We will return to Megan and her story in a moment. But first, I want to take a second to thank our sponsors. If you are a business owner or an HR professional, you know that open enrollment season is upon us. Get the help you need with FullStack PEO. Fullstack is a full-service benefits firm for small business owners and entrepreneurs. Let them take care of your people and their benefits so you can get back to running your business. We are also sponsored by Handle with Care Consulting, which is my company. And I'm excited to announce my new, SHRM certified Empathy at Work Certificate program. Come take a deep dive into your empathy behaviors. Make meaningful changes and emerge with an empathy action plan. We kick off on September 22.

And now, back to my conversation with Megan. In the aftermath of her surgery, she was on her back, incapacitated, and plagued by big questions about her identity as a woman. And the support of a community was vital.

- Megan Flinn

There was a friend that showed up and. I remember just like. It was just like the either the very wrong moment or the very right moment for him to be there, but I just was like, I don't want to be bitter. It was like maybe three days after I had gotten home. So maybe a week after the surgery. And I was like, I know that this can be an experience that leads to people just being bitter.

- Megan Flinn

And I don't want to be bitter, but I don't know how to not be like I don't know how to get there.

- Megan Flinn

And so we just sobbed, I just sobbed and he just held my hand, it's only did he didn't speak these like powerful, effective words. He just held my hand while I cried. And then I had another friend who she just like, I didn't know her that well at the time. And she's become one of my close friends, probably because of this.

- Megan Flinn

But she had had her own she'd been in a car accident earlier in the week. And so she was also on pain meds and she just crawled and laid next to me in bed. And we just laid there and people just showing up and sitting there.

- Megan Flinn

Like I said at the time, I had two couches and they faced each other and I was always laying on one. And I just remember people just coming and sitting on the other one and just being there.

And of course, there were meals and things that were really helpful.

- Megan Flinn

But I the thing that the most powerful part of it was the people that just came and sat with me. And it wasn't I don't remember any words that anybody said, but just people that sat with me during those six weeks was the most powerful. Yeah.

- Liesel Mertes

And and didn't feel that compulsion to have to have the right words to make it all better.

- Megan Flinn

In fact, when they did, it was like really it was the side of the question.

This is just a side editorial note. I was one of the people that came and visited Megan in the aftermath of her surgery. And even as we were talking for this interview, I recalled how much I talked during our time together. I can rush to fill silence…and I have a great faith in my ability to make things better with my words. If I could do it all over again, I would have just been quiet more often during those visits.

- Liesel Mertes

Tell me about the misses. What are some of the I mean, those are the worst one.

- Megan Flinn

Some of the misses were just. Yeah, the like the hope that was like No. You know, as this I almost hesitate to share this because it was this person who is much more charismatic in their faith than I am, and so they were like, God will give you a miraculous new uterus like that will happen. And I was like, please don't say that.

- Megan Flinn

Like, that is not what... One, i don't think that will happen. I don't have hope for that. And I don't know that I want that. That's not the story that I want. Like, I don't even know up from down right now. But that doesn't feel right.

- Megan Flinn

And people who. Just kind of ignored it. Who tell me more. Yeah, so like the. Just people who would like to interact with me knowing this had happened, it wasn't wasn't necessarily something I kept secret, but.

- Megan Flinn

I mean, they knew I was out of work for six weeks, they knew I was stuck in my house for a significant amount of time, but would show up and talk about their life or the things that they were like, as if business as usual.

- Megan Flinn

And it was almost like, you know, in hindsight. They were nervous, they were anxious, and it's a sensitive thing, right? It's not like I broke my leg or I have whiplash from a car accident.

- Megan Flinn

Like this is an intimate thing. It's an intimate part of my body. You know, especially in a Christian culture, to talk about, it brings up my sexuality, it's things that we kind of shy away from so they would show up or they would I would engage in conversation even after those six weeks.

- Megan Flinn

And it was like. As if nothing there was no acknowledgement of anything, and I just felt really like I'm different now, like

- Megan Flinn

I remember feeling very different about who I am and about the whole world and to have people who had before this professed to be in my corner. Kind of not acknowledging anything had happened was really painful. To not even talk to all the people who just came and sat, they were just providing space. And for those who ignored it, it was like they couldn't they had no they had no space to give for it.

Yeah, yeah.

- Liesel Mertes

And I, imagine, there's there's a there's a practical difference and experiencing that, like the people who who are profoundly uncomfortable, oftentimes it manifests itself in taking up the space, you know, that actually to leave the silence. Yeah. Makes them feel so uncomfortable. So they're filling it with their own stories or with inane conversation. Yeah.

- Megan Flinn

Yeah. And I understand that. I just don't like it. Yeah.

- Liesel Mertes

I feel well and that's part of the education of you know, that the conversation is the stuff that we can unconsciously do so easily. But when you actually take a half step back and say is is this actually like if I want to be helpful, is this being helpful or meaningful or is it just me avoiding my discomfort in the interaction? Right.

- Liesel Mertes

I'm struck that you're also so six weeks goes by and then you are having to show up in a tremendously outward facing capacity. We're actually giving care to people in circumstances of a lot of need that like like that's that's a returning to work is a big ask in that particular. Mm hmm.

- Megan Flinn

Well, and I think something that was really interesting that I had predicted or I don't know that I predicted it, but other people had predicted it for me. Was that so a lot of my job at that point, I was working with the longer term.

- Megan Flinn

at Outreach, and so what that means is a lot of them were having babies, a lot of females who are having babies and one of my just like life rules, which is funny because I told a friend to leave me at the hospital. Was that when you're in the emergency room or you're in a hospital thing, you should not be there alone. I just think. If you're in the emergency room, it just feels like you're at your most vulnerable point for a human to be in that position just alone.

- Megan Flinn

I hated it. So I would often be in the emergency room or I one of my things that I often did in that role was I would be there while my girls delivered their babies. And I remember being predicted by other people that that would be really hard for me. And it was not. It was not. I mean, it was something like, oh, yeah, this I mean, I had already known that wouldn't happen for me.

- Megan Flinn

That doesn't make the delivery and the resulting baby any less beautiful. And I was even part of like an adoption situation, one of my four children adoption. That was a family that I connected them with in that time. And it yeah, it wasn't

- Megan Flinn

it was like everyone had these assumptions about what would impact me and what wouldn't. And that was probably the most frustrating part, was like the assumptions without being asked, you know, what actually was hard for me and I and I mean, you know this because you lived with me through some of that, but just feeling like.

Megan Flinn

There was assumptions made about what would be hard or what wouldn't be, but no one was asking me. Not saying, like, is this hard for you? Or, what is draining in this part? And so, not feeling heard by the people around me was the most frightening part, not the actual work that they were that I was being asked to do.

– Liesel Mertes

Tell me if this is accurate, is that. Within your work situation, under under the premise of caring for you, there were assumptions being made about your preferences or your capacity that you weren't actually being checked in with and that that actually left you feeling overlooked.

- Megan Flinn

Yeah, absolutely. Yeah.

- Liesel Mertes

And I know things about like how your workplace showed up or didn't show up for you that you think like, yeah, this this was this allows me to reflect on what good managerial support is and what not good it is. Yeah.

- Megan Flinn

I think I will say my co-workers, the people who were on my same like level within the organization, they showed up like there is no doubt that those are the people or their spouses, but they're the people that I remember sitting on my couch or sitting with me or even the volunteers that I had worked with through the organization. They showed up. I did not leadership, I don't know that I've had. During those six weeks, I did not have a single conversation with someone in leadership.

- Megan Flinn

I thought I was doing and that I mean, one person there did say that, that they regretted that. But in terms of my functioning within the organization, it was still impacted, you know, because I didn't have those conversations with people in leadership and. That was really, really hard because and as you know, having been married to someone who works at outreach along.

- Megan Flinn

You you're investing yourself, and I think you assume that that is known and seen and understood, and then when something like that happened to me and I felt so missed, it was like, oh, my investment is not seen the way I thought it was. I am not seeing the way I thought I was. And so that was really hard.

- Megan Flinn

But, you know, like I said, like my co-workers should have, I remember like laying on my couch sleeping and I woke up to like the vacuum running and one of my co-workers had just brought over her own vacuum because she didn't want to ask me where mine was and was just I mean, someone else was another coworker had already been there to let her in my house, but she just vacuuming my house, not asking, just doing it.

- Megan Flinn

And it was like at the moment I was like, what are you doing? And now when I think back, it's one of my favorite things that someone has done for me, like a huge thing. And in that moment or like taking care of my home, it's just not possible. That was released, and she is not someone that I was particularly very close to. So that was even more just like. She didn't know what to say or what to do, but she could hold up.

- Liesel Mertes

I was just in I was just speaking at an event this morning and the question came like, well, what can you do to support someone that was like, people always have to eat?

- Liesel Mertes

And everyone I was like there always still like nobody has time to clean their toilet, do stuff like when they're dealing with complex grief and, you know, bring your vacuum.

MUSICAL TRANSITION

As she reflects on the lingering impact of her experience, honesty is very important to Megan.

- Megan Flinn

Being honest about what we've experienced, being honest about. Who we are and how things have impacted us, which also means like an awareness that we may not all have because our culture doesn't ask us to have it.

- Megan Flinn

So in terms of like a workplace to just have that awareness and honesty and balancing that with like completing tasks that any business asked us to do. And that's that's the big thing for me is just like we have so much to get done in a day and to just always remember that all of us are humans doing the best we can.

- Megan Flinn

It's just something that's been deeply different for me since this experience.

Yeah, yeah, thank you for adding that. Thank you, Meghan, I'm going to stop recording you. OK, so.

- Megan Flinn

One of the thoughts that kept running through my head after the surgery, and I would say this out loud to people like close, close, close friends, people within my tight inner circle, I would say, like I can no longer do the thing that is definitively female.

- Megan Flinn

And I had taught science when I was teaching. And so it was just very scientific, like I could no longer bear children. That is the thing that is definitively female amongst any species. Right.

- Megan Flinn

And I just had this deep fear. You know, I'm a single woman expected and hopeful for a partner to do this life with and. It's never been an issue, it's never one, this topic and we've had this conversation about my body, this part of my body, it never it has never been an issue.

- Megan Flinn

But I really, because of the story and the way we talk about motherhood and the way we talk about feminine sexuality and what our bodies are for within our culture, I was really just expecting rejection on all fronts from that. And I have never had that experience. So for me, it spoke to something about how we talk about women in our bodies and. We talk about value to talk about the value value of ourselves and the value of our bodies, right.

- Megan Flinn

Like I think we're told to kind of disconnect our body from our person, from our personal. A lot of times. And that's just not how we were made.

And so. Yeah, it just for me was

- Megan Flinn

I had this deep fear that I was no longer worth anything because I couldn't perform this act as a female. And in the years since and through the work that we've talked about me doing, like, no, I'm very much a female. I'm very much able to do most of the things that female can do. My body is still capable of things like, you know, I still have a nurturing hug.

- Megan Flinn

I still have, you know, all this like a nurturing presence and these things that, you know, feminine presence and with my body that I have and so reconnecting that. It was a big deal and it kind of acknowledging the value of my body despite this action, that it couldn't do anymore.

- Megan Flinn

Yeah, I was really deeply healing and to. Just kind of navigate how our culture talks about it has been. Just its own experience,

you know, how

- Liesel Mertes

how have you changed the dynamic now and how you speak about what it means to embody femininity?

- Megan Flinn

I've had, like, an almost redefined view of what is female, right? When I hear that the starting place with your experience of yourself, instead of having a place of what is held out to you as the arts where the should be is right is a rare move of adulthood.

- Liesel Mertes

Yeah, I think it's interesting.

- Megan Flinn

The art and the should as a therapist, I often it's one of the one of the few like training pieces that I've taken with me of like when I hear a client or someone say I should be doing this or I ought to be doing this, the should or ought is often a red flag of like. Well, according to whom? Like where does that message come from? And then recalibrating, like, what if the message was coming from within you, what would it be?

- Megan Flinn

And that is definitely like a. Changed within me, like how I view myself and where who's. Who should not be let in there? It's much smaller than what it was before this all happened, for sure.

- Liesel Mertes

Well, and one of the things that I consider a lot for myself and also talk about in my trainings is the reality that how we treat ourselves is so often what we're translating and how we're treating other people. And even as you talk about your work in therapy, I imagine it's only expanded as you give yourself more space to embody that, to come out professionally in the space that you grant to those you work with.

- Megan Flinn

Mm hmm. Yeah, I would. I would say it's. I think I am I think I am shocked, but by how much I really love my life post-test because my life is so different than I wanted it to be five years ago. But I really genuinely love my life and what it is right now. And so I give that excitement to my clients about their potential and their possibilities. And they that, I think, is something that makes me unique as a therapist, that they don't often have people who are excited about who they are.

- Megan Flinn

And I like as I get to know my clients, I genuinely grow more and more excited about who they are as I get to see them more. And that, I think, does come as a direct result of this experience.

MUSICAL TRANSITION

Here are three key takeaways from my conversation with Megan

• Just showing up matters…and your words can oftentimes get in the way of deep comfort.Megan talked about the importance of the friend who just sat there, silently, with her as she cried. In our hurry to "fix" grief and make things better, our talking often gets in the way of truly listening and being present.
• If you are a manager or someone's supervisor, make sure that you take the time to check in with them while they are away on sick leave.And this check-in shouldn't just be about work projects or getting on the same page regarding clients. Set a time in your calendar to call or the visit just to hold space for hearing about how they are acutally doing. Megan's managers never checked in with her while she was away…and she felt that gap.
• Be careful how you talk to and about women regarding their reproductive choices.We make so many flippant comments, asking women when they are going to start a family or if they are having any more children. This is tenuous territory. You never know the story behind what you can see. And so much of society has, historically, bound the value of being female to being able to reproduce. Avoid these minefields. Stop asking unless someone offers you information. And if you want to go deeper, consider your own biases and culturally conditioned conceptions of what it means to embody femininity. After hearing this episode, is there anything that you want to revisit or revise?

OUTRO

Hamza International Care: https://www.hamzainternationalcare.org

- Chrissy Brack

But if you want to know what it's like to be a special needs parent, it's pretty much like this year all the time, in a way, maybe with like less threat of death around every corner. Like there's not like that that like pandemic piece of it. But as far as the amount of hurdles and unknowns and what's going to happen and what's that going to look like and how do I even put anything into place to get through? We'll make a plan for one week and then everything changes the next week. Right. That's pretty typical for us, I would say, for how it's been the entire time from really the time I would say my son was two until now.

INTRO

Today, we are going to hear from Chrissy Brack about mothering a child on the autism spectrum: the challenges, the recalibration, the joy, and how it has transformed her as a person. Chrissy sees herself as an advocate for her son and her voice is just one of the many parents out there walking a similar journey. But Chrissy, more than anything, told me that she looks forward to handing her son the proverbial mic more and more. I learned so much in this episode and I am excited to share it with you.

But first, a little bit more about Chrissy. Chrissy was a year behind me at college and we began to spend time together in Cuba, where we converged during a study abroad program.

- Liesel Mertes

So, Chrissy, you and I met on I think it was a trip to Cuba, like I have memories of you in Havana, which is a really cool way that we met. We met on a trip to Havana.

- Chrissy Brack

It's true. That is a true fact of this relationship.

Chrissy was a Spanish major, which meant that she knew much more of what was going on than I did as a poly-sci major. Chrissy is now a music teacher, she runs a small studio in Fishers, Indiana where she teaches violin and the piano, although her work has definitely been affected by the demands of COVID. She also teaches music, part-time, at a local school.

- Liesel Mertes

So what led you to in your mid 30s teaching music from your Spanish degree?

- Chrissy Brack

I came to music almost by an accident. I've been a musician my whole life and I was staying at home with my son. And there was a post in my neighborhood Facebook group at the time where someone asked if there was anybody or if anybody knew anybody who could teach her step daughter piano.

Although Chrissy had never formally taught, she answered the ad and begun. She has been busy ever since, with a long waitlist.

- Chrissy Brack

And I love working for myself and I love getting to pick really how my schedule can fit around my kids and what they need from me.

Chrissy is the mother of two boys, Sam and Joe. Joe is the oldest and he is on the autism spectrum, which asks a particular level of care. But Joe is much more than a data point on a spectrum of autism.

- Liesel Mertes

what are some of the wonderful things that you delight in about Joe?

- Chrissy Brack

One of the best things about Joe is that. He engages with every single person as if they have the same amount of societal weight, intelligence attributes like whatever it is, or like we think of everybody in these boxes of power and structure and hierarchy and like that person smarter than me or, oh, wow, I get way more done than someone else does in a day or like, oh, I need to get to know this person because they can help me further some of my career goals or all this other stuff.

- Chrissy Brack

And because he doesn't buy into all the society B.S.. Right. Like it doesn't like, why would he think the mayor is more important than the garbage man or anything else like that? Doesn't make any sense to him and is truly beautiful to witness and to see. And I really love that about him. And he's the kindest human probably in part because of that, because he really wants everyone to feel love and accepted for who they are.

Joe is eager and inquisitive, but Chrissy knew, early on, that there was something that wasn't quite typical about Joe.

- Chrissy Brack

So somewhere in there, in those young toddler years and I remember sitting there and just saying that I wasn't really sure what was going on, but it wasn't registering to me as what I would have described as normal, which is not a word I love, but just that something is different and I don't really know why. And I had a doctor after doctor tell me that my child was fine and that he was on track and I had nothing to be concerned about.

- Chrissy Brack

And then I kept pushing and pushing until we got to see a specialist. And then when my son was four, we received an autism diagnosis.

It was two years of visits to all sorts of specialists before Joe was given a diagnosis. He was bright, vocal, and loved to play.

- Liesel Mertes

And just because, you know, there might be those listening who are in their own kind of discernment process. You mentioned, you know, this is this is a child who's taught themselves to read. They're very verbal. And yet there were still some lingering behaviors. What, what were those things that you said? Oh, yeah. This specifically is causing me to continue in this process.

- Chrissy Brack

What we would probably, as parents just describe as tantrums. But in a way, especially now that I've had what is considered a typical developmental stage with a child who just went through those toddler years and have seen what tantrums look like versus what I experienced. They weren't tantrums to test a boundary, if that makes sense. They were tantrums because like, he could not deal in the same sense that if I kept you up for two days in a row and did not give you food and then asked you to go run a marathon, you would probably start crying.

- Chrissy Brack

Right. It was like that. But with things that don't normally cause that kind of reaction in a kid and just the ability to recover from those meltdowns or emotional episodes and the ability to what I describe as a pivot right. To turn the chapter and do something else was just not there as well as some social skills.

- Chrissy Brack

My son is actually pretty social and interactive. We had a lot of people who did not believe us when we got our diagnosis.

- Chrissy Brack

But it's definitely it's a different set of social engagement. And I would just watch how other kids of the same age would kind of interact and I could just tell it wasn't better or worse. I could just tell the way my kid did. It was a little different and all those things added up.

- Liesel Mertes

And for those who are listening and are unfamiliar, tell me about what diagnosis on the autism spectrum entails as far as receiving one or what that means, what it means, like there are some outdated terms and ways in which even just the, the descriptors that continue to grow.

- Liesel Mertes

So I'd love to get for you to give an overview of what it.

- Liesel Mertes

Yeah. What it means to have that diagnosis.

- Chrissy Brack

Yeah. So and I also I should have said this up front, but when we talk about people who are autistic, there are plenty of people who are autistic who are absolutely capable of sharing their experiences and their perspectives and their wisdom. And so I certainly just want to clarify that I am not trying to speak for anyone who is autistic. I'm merely speaking to my experience and hoping to come alongside and be supportive of that as well as, you know, for every person, much like I think most of us, we don't like to be defined by the way things are necessarily supposed to be defined.

- Chrissy Brack

And so, I'm going to do my best to describe it. But that's my little disclaimer that how someone who is autistic views this and describes it is correct over whatever I'm about to say. So give them over me. That's what I'm going to tell you. But when we look at something like autism spectrum, don't think of it as a linear thing with a left and a right where we move along this sliding scale and we're trying to somehow move to what we think of as typical or what we in the past would have called normalcy.

- Chrissy Brack

That's not it at all. Almost think of it as more like a circle.

- Chrissy Brack

Of how our brains work and typical people circles, let's say I'm just making this up, let's say you kind of have your circle and typical people circle goes in rainbow order, you know, and like a color, real fashion. When we talk about autism spectrum, some of those pieces do not line up in that Roy give way. It could be certain parts and certain ways. It could be language. It could be expressive language. It could be social language.

- Chrissy Brack

How we talk to one another. It could be sensory. It could be all sorts of different things. So there's really not just one thing that defines what it is. It also does not necessarily define anybody's ability to be competent or capable or intelligent,

- Chrissy Brack

but nor, on the flip side, doesn't necessarily define someone as what we think of as a savant. One of the first things people usually tell me when I say I have a son who is autistic is well, you know, like Albert Einstein was probably autistic and like, well, that's a really cute way to reinterpret history.

- Chrissy Brack

Like, the truth is that there are lots of families who have a lot of cognitive struggles with their children that get dismissed because there's this assumption that a lot of autistic people are savants and geniuses.

- Chrissy Brack

And this other thing. And that's actually I think I could be wrong on the statistic, but I think I once read it was something like less than 10 percent of the autistic population falls into that kind of category. So it really is quite broad.

- Chrissy Brack

And we also don't think of it as a functioning factor, because when you think about the term low functioning, which is a term often used to describe people who are autistic versus high functioning, it's basically saying that we reward certain behaviors or certain responses in people as more human or more acceptable.

- Chrissy Brack

And that's really just something I have tried to step out of as a mom with a child who is a little bit different that way, because it's first of all, it's like ableist, right? It's kind of a jerk move. And then secondly, just because someone appears to be well functioning in a certain way or in a certain situation doesn't mean it's not painful for them. And I think that's something we have to keep at the forefront of our minds when we talk about any disability.

- Chrissy Brack

Is that just because someone can manage a certain thing doesn't mean on the inside there isn't a lot of difficulty or pain to engage that way. Does that kind of help map it out a little?

- Liesel Mertes

That really does. You spoke you spoke with a lot of insight that I am just still processing really good on that. I just want to clarify that especially provocative at the end when you were saying, like, just because someone's functioning doesn't mean that they're not on the inside. Is that driving us to really consider, like, even people who are functioning with their own capabilities that people would define as normal? We don't really know the interior story of what that is demanding of them for a given situation.

- Chrissy Brack

Yeah, I think that that's huge.

- Liesel Mertes

So how does that look for you as a mom in a given moment where you're interacting with your son?

- Liesel Mertes

Because it's true. You know, you can speak descriptively of what you've experienced with people on the autism spectrum. You can definitely speak from your own experience. So you're gaining this insight. And when there is a situation where it's like, oh, you know, this is a response that's asking a lot of me, not that you are perfectly, but what are some of the things that you are like reinforcing to yourself with your parenting in that moment?

- Chrissy Brack

Well, I wish I had some beautiful book to promote here or some personal thing I could put out to the community. But it's really, first of all, just a day by day thing, which I think is true with most parenting situations, especially in this year. But absolutely, when I think about it, one of the things I try very, very hard to remind myself is that. What my son does is not always a reflection of how well of a job I have done at something, and that is a very difficult thing for me to accept.

- Chrissy Brack

I have a pretty type, a perfectionistic Enneagram 3 personality. And so to accept that I cannot get the situation to a place where things can run smoothly all the time is a very hard thing to accept. And then I kind of have this ultimate choice that I could buckle down and fight it out so that I could win or I can look at, OK, so how do we have a loving, supportive environment for all of the members of our family, including myself?

- Chrissy Brack

Because I, we all, hit a wall at some point with certain things and can only take so much of anything. And I think we all have found that limit with our children this year, regardless of whether or not they're diagnosed with anything but. Just to think about that and to think and then to rethink, when I talk about the things that are important in my life right now and ideas I'm reinforcing, it's less about how do I get my kid to do X, Y and Z, because that to me is not the end game.

- Chrissy Brack

When I look at it all, to me, the bigger prize to be had is how do I stop looking at the world, first of all, as a prize to be won? And secondly, how do I stop looking at these systems as. What should be because just because something is the way it always has been doesn't mean it's good or healthy or should be the norm. And how do I also get these systems to not just accommodate and support people like my kid, but really any type of diversity?

- Chrissy Brack

And, and then that pours into my family, too, like we have a rule at family gatherings when we have people over to our house, like in the previous years when we've hosted Christmas or whatever, that our son is allowed to go have a long time in his room any time he wants. There's no apology. There's no need to come sit like your grandma is here from out of town, like you have to come spend time with her. There's none of that because that's an unfair normal, like a social norm that we accept.

- Chrissy Brack

Right. That when, like we have family from out of town for the holidays, we all spend as much time together as possible and make that count where to him that time is not any more valuable because it's stressful, like it's not accomplishing anything beneficial for anyone to force him when he's tapped out to sit there. And it just leads to a lot of behaviors that are super detrimental to everyone. So that's an example of when I think about like the system or the situation, like how do we make the world better as opposed to how do I get my kid to be better by the world standard?

- Liesel Mertes

Well, and that brings up you know, we're going to talk some about social supports and how people move to or away from you.

- Liesel Mertes

In the midst of that, I'm struck that the move with Christmas or family gatherings is potentially flying in the face of a lot of expectation. What was it like to come to the process of being like, we need to do this and now we're telling all of you that we're doing this at home?

- Chrissy Brack

And I wish again, I just wish I had some magical answer for that. I think there is something about. I'll say motherhood, because that's my only experience as a parent, but I will say I think there's something in particular about motherhood that rebirth you and to me, when I had my son it I kind of had to let go of this. How do I meet everyone's expectations? Because he gets to have the priority and that can be daunting.

- Chrissy Brack

But I had to let go of caring what other people thought for my own sanity because I would lose my mind if I did nothing but try to make as what everyone else considers is acceptable or normal. And then also, I would really not just be doing my kid a disservice, but almost doing the equivalent of abuse with him to make him do something that is just so painful or harmful or not in his nature to do. And when you look at it through that lens, it becomes a little bit easier because you almost don't feel like you have a choice.

- Chrissy Brack

And it is hard because then for me, because I'm the grown up right. Like so I get to say that. And when I got a diagnosis for my son, I had this picture of all of these special needs parents in my head, and they all were sort of bathed in this like holy soft glow focus, light of just peace and love and all these things that I am not for.

- Liesel Mertes

Maybe not all the time.

- Chrissy Brack

I mean, I'm a pretty I mean, and I admit this, I'm a pretty high strung person and I am pretty like high maintenance that way. And so like to be like, oh, I'm just going be one of those moms who doesn't care. Now, what people think of me is definitely not innate to me. But the truth is I have to be the grown up here because he is not the grown up. And that's true for my other kid, too, that I'm going to have to be the one to figure this out because it's on me.

- Chrissy Brack

But that doesn't mean it doesn't come with a personal cost and turmoil and grappling because it does. And I think sometimes special needs parents can be hesitant to say that because it makes us sound like horrible human beings. But it is an exhausting job, often without a lot of support or a lot of things are not available to us that are available to a lot of families. And a lot of things that other people can assume, like I can send my kid to school is not something I have ever been able to assume.

- Chrissy Brack

So I am sort of like chuckling just a tiny bit. Everybody this year who's saying my kid has to go to school, my kid has to go to school when like, that is not an assumption I've ever gotten to make. Yes, legally, the state has to provide him education. But whether or not that would be in his best interest and I would send him really just depends on what that system looks like. But that is a lot to grapple with.

- Chrissy Brack

And you do mourn things, and that doesn't mean I don't love my kid or I want him to be different. It just means I have to fit with that and mourn it for a little bit as I adjust my expectations and understanding of my life.

- Liesel Mertes

What are some of your personal practices were like relational support that help you as you are making space for that grief and mourning just in the everyday demands of work like food has to be made and you have to be clothed.

- Chrissy Brack

Dinner have to still happen?

- Liesel Mertes

Yeah, always.

- Chrissy Brack

So a couple of things. I'm part of a couple of online communities. One is called Raising Children Un-Fundamentalist, and it is run by the lovely Cindy Brandt who I've never met or anything like that. She's an author and a like a kind of a public figure for this mantra of fundamentalist parenting and gentle parenting and kind of thinking about things out of the box. And this may sound silly, but honestly, sometimes just reading the posts in there and how people are being so thoughtful and intentional, intentional excuse me about the way they are parenting their kids, like, just gives me kind of that little inspiration that other people are doing the hard things, too.

- Chrissy Brack

And it kind of pushes me forward when I feel like so alone or so overwhelmed to know that, just to know that there's really someone else in the world doing it, even if their situation looks nothing like mine can be pretty inspiring. And I do have quite a few friends who, whether it's special needs or their kids, have just gone through things or their lives are just difficult for another reason, who kind of live in that realm of otherness and just having those people who get into text and to reach out and to respond to nonjudgmental on your bad days is really helpful.

- Chrissy Brack

And the final piece and to be honest myself, I guess I should say, because if I'm not honest, other people don't know that invitation is there build so much community through that authenticity, even if it's scary to step into or even in calling out some of the things that I have thought were toxic or not OK in an environment can be scary. But then I think, like, if I take that risk on and walk through it, I've paved the way now for everyone else to avoid that toxic environment.

- Liesel Mertes

Do you remember in a way that is noteworthy, like some of the first times of putting yourself out there in those vulnerable situations, whether that was expressing need or calling out something that you knew was doing damage.

- Chrissy Brack

Oh, I don't know if I have anything off the top of my head. Like, one of the things when my son was little and this is such a small example, was that he was not a kid who could be flexible about his sleep schedule.

- Chrissy Brack

And I mean, no one ever gave us a super hard time about it. But he was our first. And I think people thought it was a little bit of a first time mom syndrome. Right. Like, oh, that's cute. You keep your kid on the schedule or whatever. Like by the time you have four kids, like no one's on the schedule. But now, having had my second and seeing how much more flexible he is able to be, it's almost like sometimes I feel like Joe's brain works overtime, both in part because he's a pretty active and brilliant kid, and both in part because he is constantly managing a piece that none of us are usually managing.

- Chrissy Brack

And I think for him when he was little or sleep was such an important reset and refresh of that. And he really just could not cope if he didn't get it. And so I spent almost two years of my life. He took a two to three hour nap in the afternoon and I lived and died by that nap time. And I like it's such a small thing. Right.

- Chrissy Brack

But like people do sometimes look at you like you're a little nuts when you're like, no, like we are home for nap time and just like, no, I can't do that or no, I won't schedule that appointment then or no, you can't come over and hang out with us or whatever it may be.

- Chrissy Brack

And I always tried to do it in a gracious way. But I mean, I know we had family members at times who were probably super annoyed with us that like we just came late to the party or had things at weird times or like I put my kid down in the middle of his birthday party and I did not really care, but just little things like that. You really you just kind of have to put your stake in the ground and say, like, this is something that our family really needs to function and you don't walk this life.

- Chrissy Brack

And that's the other thing I usually tell myself when I feel stupid. I don't want to be judged, but when I kind of feel like people think, oh, if you would just and then insert whatever blanket would be, what I tell myself is like if they had to be the one that spent the rest of the day getting objects thrown at their head because their kid was overtired and couldn't self regulate, they would probably go ahead and put their kid down for a nap, too.

- Chrissy Brack

If you want to come and live my life, like feel free to tell me how to do it. But unless you're the one cleaning the toilets around here, you don't get to say that.

We will come back to the interview in just a moment. But, I would like to take a second to thank our sponsors. First, we are sponsored by Fullstack PEO. COVID-19 has you worrying about a host of things, from hand sanitizer to toilet paper…and those are just the easy ones! Employee benefits does not have to be one of your headaches. The people at FullStack help entrepreneurs and small businesses, taking care of your people's benefits so you can get back to work. And they really are a top notch crew. I know a number of the staff personally and the way that they show up for their clients is fantastic.

We are also sponsored by Handle with Care Consulting. This is my company, and we provide so many ways for you grow in the skillset we are discushing, including the the Empathy at Work Certificate program, customized keynotes, and one-on-one coaching.

Now, back to the interview with Chrissy…

- Liesel Mertes

What would you say are some of the biggest ways that you feel missed by people as you walk this journey of being a mom to someone on the spectrum of autism?

- Chrissy Brack

I think. Well. I always am concerned, first of all, that. Because in some situations I have to disclose his diagnosis and not like someone's holding me up against a wall, but like I would not it would not be fair to anyone if I sent him to school and didn't tell anybody he was autistic. Right. Not fair to him. Not fair to the teachers. Right. And so in situations like that, where I feel like I have to disclose his diagnosis, there's always this concern to me that people will see his diagnosis first and not him as a person first, and also that their mind will first go to like, how do I manage things I view as negative as opposed to what does this person have to teach me about the world or the way we look at things, especially socially, that maybe I would not have gotten if I didn't get to interact with them?

- Chrissy Brack

Because the truth is, I often say I think Joe has taught me more about life and God and friendship and love than I could have ever thought was possible from one little six year old. And I think if you can come at it like that, like what does this individual have to give us as opposed to, oh, man, how are we going to make it through dealing with some of these difficult things this individual presents us with? I think it's an important perspective change and I think then you get to see my kid for who he really is, which is all I want.

- Chrissy Brack

And then for me personally, I think the biggest area I feel most at and not in a huge way, maybe in part because I removed myself from any type of groups or environments in which I would feel this way. But is that that can't you just blank that I already mentioned this idea that if I did the right thing or worked harder or were somehow more competent, that my life would not be so hard.

Chrissy Brack

And the truth is, I was literally saying this to a friend. Was it last night or the night before where especially this year? I'm like, it does not even matter how much like no matter what I do, it just is always a disaster. Right? I'm like, whether I do the good things and all the hard work and go above and beyond disaster, I do nothing. I give up, I wallow in self pity disaster. I try to like, get it halfway. Right, not try too hard. Disaster like it just doesn't matter. Right.

- Chrissy Brack

It's not like a it's not a cause and effect situation for a lot of special needs. And I think there is this assumption if you just got the right therapy, if you just got the right support, if you had the right thing right. Or if you were in the right school district or if we did this or that, that somehow my life would not look the way it is, as if I have not already thought and tried one million different things to get to the point where I am right now.

- Chrissy Brack

I think I don't think there's anything wrong with offering suggestions. I just think sometimes the way it can be done.

- Chrissy Brack

And your intention behind suggesting something like should not be to fix my kid or fix my life, but to say like, wow, what kinds of things would really support you, given how some of the challenges you face that really aren't going to go away?

- Liesel Mertes

Right. The, the armchair critic that they're with their suggestions. And for those that, you know, think, man, I, I just don't know. I don't know what it's like. Would you open up what a hard day looks like for you as a parent?

Yeah, you can be.

- Chrissy Brack

And I'm going to be careful. There's more things I could say, but I'm not going to say just because he deserves to be as a human as well. But I mean, it could be everything from.

- Chrissy Brack

Like, I mean, I got called like I like my joke, my kid made it maybe two months into kindergarten before I got the call to come pick them up because they needed him to be sent home. And everyone is like, that's not legal. They can't ask you to do that. And I'm like, I think they just didn't know what else to do. I think they were just sort of like, you won't stop and we don't quite know what's going on.

- Chrissy Brack

And so, you know, like, that's not a great day when you have to go pick your kid up in the middle of the school day, because no one quite knows what to do with how he's acting that day. And that particular week, he had gotten out of the building and out into like almost the road, I think it was three or four times that week. And so, I mean, that's like I didn't even want to send him back after I went and picked him up.

- Chrissy Brack

It wasn't like, well, tomorrow's a new day. Like we're going to start fresh. Right? I was like, no, you're not going to school tomorrow because I'm scared you're going to go run into a four lane street and get hit by a car. So now you have to.

- Chrissy Brack

I feel so scary. So then it would be like, OK, well, now my day looks like you have to stay home with me and we have to figure this out. And I have to call a meeting with your teachers and see what's going on and talk to your, you know, our our therapy support team and see if they have suggestions. And now I have to schedule a meeting with eight different people on top of which, you know, I mean, typical kid stuff, right?

- Chrissy Brack

Oh, my gosh. You just dumped that bowl of chips everywhere and dumped out your water cup and like, oh, my gosh, did your brother take off his diaper and let you know? I mean, like, all that stuff, like, am I a few weeks ago, I had a day where I did nine loads of laundry back to back and every because none of them could wait because every single item in there have poopy on it.

- Chrissy Brack

And I mean, nine is a lot in a day. That's one an hour right where I'm just back to back cleaning up poop. And I was like, could it just be something else today? Guys, I don't know what, like, spilled some orange juice, but like over the poop, like. Yeah.

- Chrissy Brack

So yeah, I can look like any number of things or really hoping like when Joe took his NWEA test which is test the school uses to kind of assess where your child's at and where their progress has gone over the last year. I was really like I said, he's a smart kid and I was really hopeful for him that this test would be a way he could show people something about himself that may not be apparent if they're just working on behavior management.

- Chrissy Brack

And partway through the test, his iPad stopped working and his internal thought process was, oh, this isn't working. When dad gets home tonight, I'll just tell him my iPad is not working.

- Chrissy Brack

So he didn't tell anyone that it wasn't working. And so his score was obviously reflective of you did not take half the test. Right. And that's not the end of the world. Right. But that is a little heartbreaking as a mom to know that he didn't really get the chance to show what he was capable of in a way that I would have liked. And so, like, that's a hard day to.

- Liesel Mertes

Yeah, I hear that. Well, and like you mentioned, I mean, so any parent out there right now has had the wrench thrown into the works with covid-19. I imagine that there has been a tremendous and particular disruption within social support services for families like yours. Could you speak a little bit to the added burden that that disruption has been on top of just the now normal crazy Avenal?

- Chrissy Brack

Well, this has been to me the greatest gift of this year. And what I've been telling people when they talk to me about that particular subject that in a lot of ways I will not lie. This year is not all that different for me. It is in the sense that my own personal supports and things are not there the way they normally look. And sure, there's more work for all of us. Right. Going to the grocery store is more work than it used to be, that kind of thing.

- Chrissy Brack

But if you want to know what it's like to be a special needs parent, it's pretty much like this year all the time, in a way, maybe with like less threat of death around every corner. Like there's not like that that like pandemic piece of it. But as far as the amount of hurdles and unknowns and what's going to happen and what's that going to look like and how do I even put anything into place to get through? Right.

- Chrissy Brack

We'll make a plan for one week and then everything changes the next week. Right. That's pretty typical for us, I would say, for how it's been the entire time from really the time I would say my son was two until now. That's like

- Chrissy Brack

So yes, it has been challenging and I can share some of our disruptions. But on the same level, I like looking at people and I'm like, oh, well, well. Come to the party, we ended the committee because none of us had time to welcome people anymore, but like grab a cup of coffee and pull up a chair and like, yeah, none of you are going to get through what you thought you were going to get through today.

- Liesel Mertes

Is there anything that you would say to this particular moment out of what you've had to be learning along the way as a parent?

- Chrissy Brack

I guess if I had to give a piece of advice from what I have done over the last six years that I think is applicable to many people now that maybe had not been in the past, it would be two fold, the first of which is a lot of the things we may think are essential or important are probably a lot less essential or important when it really comes down to it, especially right now. You have to pick and choose with a lot of discernment and it could also be a situation.

– Chrissy Brack

And when it's much, much better to start small and add in, as opposed to like trying a very large task or a lot of things and figuring out that it's all going to fall apart. And that is something my kid has definitely taught me because I am an overachiever. And so seeing that and recognizing that we are all limited in a way and being really comfortable with finding those parts of ourselves that we don't like, the parts where we do hit a wall and no, we can't do something we thought we could and and evaluating that before it happens, because that's saying no to things which can be challenging.

- Chrissy Brack

And it's also accepting our own weaknesses and limits, which can be challenging depending on your personality. And that is something my son does with a lot of grace and ease and that I've had to help him do as a mom that has made it easier for me to accept to like I know I was at a point and maybe, I don't know, April, where, like, I could not go to the store more than, like, once a week because, like, mentally, it was just super exhausting and everything was so new and terrifying and everything was so different and there were a lot of blinds to wade in and all those things.

- Chrissy Brack

And I just had to recognize that was taking an emotional toll on me. And I didn't really want to admit it. I wanted to think I was bigger than being affected by all those things. But it served me a lot better to just say, nope, like let go of that and it's OK. And and so that would kind of be the first thing and then the second thing. And now it's kind of like I lost my train of thought, where was I going with that?

- Chrissy Brack

And I think maybe just not don't be afraid. To reinvent what normal is or assume what we thought of as normal is worth getting back to a lot of ways, but don't rush to that conclusion because I would never want to go back to the way I thought of things or saw things prior to really learning what I've learned after receiving a diagnosis for my son. I would never want to go back to thinking about the world that way. I feel that I am a much better human because of him, and I will always have him to thank for that.

- Chrissy Brack

It's very humbling in a way, when your five year old with autism can be a better person than you can be because you're caught up in your head with your expectations and demands and all this other stuff, and you realize you're totally missing the point and that he knows it all along. So so just really like look at that bigger picture of what is truly important and the ways we accomplish that. And don't be afraid to get creative or you can let go of things that you think you can't let go of.

- Chrissy Brack

And it may just be OK. Yeah.

- Liesel Mertes

I always like to ask you spoke in some of the ways in which you've been messed up.

- Liesel Mertes

What have been some of the most important supportive gestures that your community has been able to make that have really meant something to you?

- Chrissy Brack

I mean, someone once told me. If you want to love somebody's family and love them, well, feed them and like. The Times, I can't even tell you how many times I have lost so like so much traffic, not by like a factor of two, but by a factor of two hundred, how many times someone has showed up at my door with lunch or dinner or a cup of coffee because, you know, they they heard my son eloped.

- Chrissy Brack

And that's like when he escapes, right. That he's eloped and, you know, like I had to call the police and all this other stuff. Right. And that's really, really stressful to go to, whether it's that or just those days where I had like nine loads of laundry and those kinds of things, like really I don't think you can go super wrong with just bringing someone a meal or a treat. And it sounds so superficial, but any of those little tasks that take that energy and focus that you have to now give to something else and just have it cared for is huge.

- Chrissy Brack

And also, it's a good reminder to me, like when someone shows up with food for me, that I have to eat, too, and that I have those limits and I have to stop and and do that, even if I feel like we're in the middle of a crisis, because if I don't eat, like, I'm not going to make it through the end of the day. So that would be like some of the best things I've had is just people who showed up at my door with a meal or texted me that it's on its way and it's coming and to not bother cooking.

- Chrissy Brack

And I, I think the people who I engage with on a really deep level who are just willing to hear about the hard things and not try to fix them. But also, more than that, it's not always just about the hard thing I've dealt with that day, but also how it impacts the way I have looked at my life. And the world around me can sometimes feel a little bit like an existential crisis. And for the people who have not been afraid to hear how those things have informed my views now, and even if they don't come to that same conclusion, I have space for it and say that my journey is valid and my conclusions are valid because of the life I've lived, and to not try to be corrected and to like, well, yeah, but we know X, Y and Z, right?

- Chrissy Brack

And I'm like, I don't know the alphabet anymore. Right. Like it all it taken away.

- Chrissy Brack

And so it not just understanding that day to day hardship, but how it impacts us on a bigger level and informs us and not shying away from that, even if you don't truly understand it again, that willingness to learn and be served by something we don't innately have or are experienced with, I think is helpful and humbling task for us all.

- Liesel Mertes

Yeah, I hear that. Well, and that that willingness to be in process with you without having to rush you to a conclusion. And that's hard for people. I mean, we want we want those around us to be happy and we want we don't like cognitive dissonance and we stop questioning that stuff. That seems important to me is oftentimes the vibe that we give off instead of being with people in it.

MUSICAL TRANSITION

Chrissy believes that true inclusion is about honoring and valuing diversity, not just tolerating it…and that this radical move flies in the face of power structures but, ultimately, benefits everyone. And she wants to see more of this true inclusion everywhere, but especially in the workplace.

- Chrissy Brack

My husband and I are both business owners, so I don't say any of this lightly or not from the perspective that I do not know what that is like, because my husband has employed up to 60 people at one time and has been the end of the line.

- Chrissy Brack

And the boss and I work for myself and have to carry that whole load. So I get it. And I'm not just trying to say that like they need to do everything because I get that because I am the they too. But when I think about my child and the world I want for him, I would really hope that when he is an adult, we live in a society that values the things he has to offer because of his diversity and not just say like we hire people with disabilities because we're good people, which like there's a place for that, too, right?

- Chrissy Brack

I'm not describing that work at all, but I do think my son and people like him or people who are different from him have so much to bring. And we have to see the value of that and find ways to think about it where when we're usually still stuck on, did they have a firm handshake? And look me in the eyes doesn't actually necessarily say anything about the kind of quality of work they can do or what they can bring to the community at large and to just kind of rework some of those things in our own heads and in our own places where we have influence and make it, you know, to see what they bring to the table as opposed to making them come to the table in a way we think of as acceptable.

- Chrissy Brack

And I really hope that for him one day and I think I see positive changes and I'm I am hopeful for that.

MUSICAL TRANSITION

Here are three key take-aways from my conversation with Chrissy:

• Respect the boundaries of parents living with a child on the autism spectrum.This is just an extension of the basic premise of respecting ALL parents and their boundaries, but it is especially important here. Chrissy bravely puts the needs of her son first, realizing how central she is to his well-being. But this sometimes means strong lines in social situations. Respecting boundaries means that, if they choose to leave a play date early, you DON'T try to cajole them to stay or put on a guilt trip, "Do you really have to go?" Instead, you say, "It was great to see you!" and leave it at that.
• Bring food.Food is such an immediate, necessary gesture of care.
• Be a friend that listens, just listens, without judgment or having to make it better.And, as you listen, remember that it is alight to have limits. We all do and COVID has thrown us up against them, hard. Don't be afraid to look bravely at your limits and to imagine a new normal.
• This is a sort of bonus point.Chrissy mentioned online communities like Raising Children UnFundamentalist that I have linked in the show notes. A supportive community matters.

OUTRO

Raising Children UnFundamentalist with Cindy Wang Brandt: https://www.facebook.com/groups/665348930273216/

- Stacey Ballard

I think the most important thing is that 40 percent of Americans live with at least one chronic illness, 40 percent of Americans. So we all know somebody who lives with chronic illness. And so we we know that those people are out there working right now, just like I had to work, whether I felt good or bad. So we just need to be nice to each other even. You know, we need to understand that we're all going through something, whether it's chronic illness, whether it's addiction, whether you're in an abusive relationship.

We are all we all have our own story of stress and what is causing issues in our life. I just wish we could be nicer to each other, more understanding.

INTRO

Today, Stacey Ballard shares about living with multiple, chronic illnesses. From hyperthyroidism to endometriosis to Crohn's disease, and more, Stacey has spent most of her life under the shadow of sickness. There is the revolving door of hospital visits, the grinding exhaustion, and the fragility of a body prone to illness. Yet, Stacey is also a published author and artist who recently released a book called The Fine Art of Waiting, crafted to help others who are in a season of waiting…and, in the throes of COVID-19, isn't that all of us? I am happy to welcome Stacey to the show.

Stacey lives in the Lake Tahoe region of California, where she likes to walk with her dog in the Desolation Wilderness.

- Stacey Ballard

And so it's really easy to get out in nature. I love kayaking on the lake and but I spend most of my time walking and just enjoying the air and the and the surrounding landscape.

These wide open spaces are a far cry from the bustling Bay area of San Francisco, where she grew up. Life in the Bay was crowded, chaotic, and the pace of life contributed to her mounting illness.

- Liesel Mertes

Would you set the scene for us of what you're growing up years were like? And as you look back, when you first think, oh, yeah, that those were signs of me being unwell.

- Stacey Ballard

Absolutely, I was a skinny, nervous, clumsy little kid, and my family pretty much just thought that's the way I was.

- Stacey Ballard

And actually I think it might have been coming up to Tahoe, were coming up into the elevation. I started having really bad symptoms, heart racing, vomiting. And so we started going to my doctor in the Bay Area.

- Stacey Ballard

I think I was about nine years old and it took some blood tests and things like that. But that's when they discovered that I had hyperthyroid and and started treating me at with my local family physician.

- Liesel Mertes

What was that like for you?

- Stacey Ballard

Oh, the symptoms of hyperthyroidism, especially in a small child, nervousness, anxiety, sensitivity to emotional situations.

- Stacey Ballard

Heart racing, no appetite.

- Stacey Ballard

Yeah, so I was I was very nervous all the time, scared of everything, and and so the diagnosis was helpful because the problem did need to be taken care of because it was in a way that I could continue living. It would have caused more physical and mental problems if it wasn't taken care of. But, yeah, it was it was it was scary as a kid to be so emotionally raw all the time.

Stacey was emotionally raw, entering a complex medical system and web of doctors.

- Stacey Ballard

that's when I remember one of my first traumas as a person living with chronic illness and living with doctor's appointments and things like that was that I remember being scared of getting my blood drawn at this big hospital.

- Stacey Ballard

And I think by that time I might have been 10 or 11 years old. And I remember it took a number of people, probably five adults at least, to hold me down for them to take my blood.

Stacey Ballard

And so the diagnosis was a small part of of what happened to me.

- Stacey Ballard

It was the trauma of being a kid, going to doctors that really started to affect my life and my mental and emotional state.

Stacey's family was also reckoning with the diagnosis. She is the middle child, with an older and a younger sister. And by that time, her parents had divorced.

- Stacey Ballard

Emotionally dealing with a child, going through things like that, I don't know that many parents have the understanding or the coping abilities on how to navigate it.

Her dad was working full time and her mom was working part time…and then there were the drives to appointments and all of the uncertainty.

- Stacey Ballard

My parents, I love them dearly, but but nobody teaches you how to deal with a sick child, and so it was very analytical.

- Stacey Ballard

There wasn't a lot of there wasn't a lot of like, oh, how is this affecting you emotionally? I think they dealt with the terror in the moments, but then it was more about distracting me onto other things and getting my mind off things.

Stacey's parents did their best, trying to keep her busy, trying to get the medications in balance. When she was a preteen, she went through a procedure that purposefully destroyed her thyroid through radiation.

- Stacey Ballard

So once you have your thyroid radiated, you drink radioactive iodine to destroy the thyroid or you have surgery to remove part of the thyroid to help with the hyper thyroid. But what that does is it induces hypothyroidism, which then you go from like, you know, bouncing off the walls to wanting to sleep all day.

- Stacey Ballard

I'm gaining weight. I mean, I was I was a stick figure. I was skinny. Even though I didn't have an appetite, I could eat anything and not gain weight.

Stacey gained 40 pounds over the course of a month. She was exhausted and sleeping all the time. So she began to skip doses of her medication in hopes of losing weight.

- Stacey Ballard

But because my child mind. Saw me gaining weight, saw myself getting more tired and my doctors telling me, oh yeah, this is what's working, this is what's right, I thought by doing the opposite, I was helping myself.

- Stacey Ballard

Yeah. And because, you know, my mom, you know, worked full time. My dad was only around on the weekends. They didn't know.

There were so many stressors.

- Liesel Mertes

How do you think that you were reckoning with that internally as a kid?

- Stacey Ballard

I think as a kid, I was just trying to survive. Yeah. Looking back on it now, I. I see where I, I took on the victim role. And listen, I would never tell anybody else you acted like a victim at the time as a kid, I didn't know any better.

- Stacey Ballard

I didn't want these diseases. I didn't ask for these diseases. I was doing my best to survive in the situation.

- Stacey Ballard

Every every time my mom or dad would take me to a doctor's appointment, I would get the day off school. Mm hmm. After we go to the doctor's appointment, we'd go out for lunch or breakfast or get a treat.

- Stacey Ballard

Yeah. And so I got their full attention.

- Stacey Ballard

When your parents are working full time and and and and you have, you know, two other siblings and everyone's fighting for attention, I sucked up that time with my parents.

- Stacey Ballard

And so I don't know that I thought of, like, why me? Oh, my gosh, poor me. I think I was thinking, oh, my gosh, I get to see my mom or my dad depending on who I was with.

- Stacey Ballard

And, oh, we get to go out for for a treat.

- Stacey Ballard

And oh, I get the day off school, which, by the way, I hated school. Yeah.

- Stacey Ballard

And so and so. And then when, when my next diagnosis came at 13, 14 years old with endometriosis, although it wasn't a diagnosis, it was just symptoms.

Endometriosis is condition that causes pelvic pain and often also contributes to powerful pain during menstruation. As Stacey began to feel these symptoms, she felt like the little boy who cried wolf. As a chronic pain sufferer, she had often sounded the proverbial alarm…and now, no one believed her.

- Stacey Ballard

I then got my period and immediately started having symptoms. Nobody believed me.

- Stacey Ballard

Oh, you're it's just your period, period. That's just your period. And so, you know. In the back of my mind,

- Stacey Ballard

I'm thinking there are some acute pain and discomfort and pain.

Yes, that was my main symptom of endometriosis. A lot of people have different symptoms, heavy bleeding and things like that. Mine was severe, severe pain. And so I know that as a young teenager, I did go to a couple of doctors and try to find out if this was wrong, immediately told no, this was normal deal with it. And so then for a couple of years, not understanding that there was something wrong, I just dealt with the symptoms which were horrific.

- Liesel Mertes

Yeah. Well, and I imagine as you say that, that it's its own head trip. Right. Of like am I imagining things? Am I crazy? Should I trust my own body? Should I trust these other people? That, I imagine, in dealing with just the physical pain that that sort of mental disequilibrium only compounds that and makes it more challenging.

- Stacey Ballard

Absolutely. I mean, I couldn't deny the physical pain.

- Stacey Ballard

I would be in pain about three weeks a month if this was going to school as a teenager and also working part time and then as an adult, working full time and tried to go to college.

- Stacey Ballard

And so.

- Stacey Ballard

The the physical symptoms were unquestionable, so I began to hate my body because I didn't know what else to do, because the medical in industry was saying that's normal.

- Stacey Ballard

Right. And I wasn't talking to other girls. I mean, even as a teenager, I had I remember having a few girlfriends in in high school, but I don't remember talking to them about this.

- Stacey Ballard

And so I turned my pain towards my own body.

- Liesel Mertes

Hmm. Yeah. What did that did that manifest itself in physical expressions or mostly a mental orientation? Tell me more about what that looked like.

- Stacey Ballard

Mostly mental. I was very depressed, my thyroid.

- Stacey Ballard

I talked to a lot of people about thyroid issues because what a doctor says is a normal level might not necessarily be a normal level for you.

- Stacey Ballard

And so as far as like a 16 year old, you know, I'm dealing with three weeks out of the month of being in pain, my thyroid levels supposedly being at normal levels.

- Stacey Ballard

And I am sleeping 12 hours a day or at night, you know, and so I'm depressed.

- Stacey Ballard

I'm isolating myself.

- Stacey Ballard

I did have art in my life, thank goodness I was a photography student in high school at the time, and so I think I would spend a lot of time distracting myself. But it is really hard to distract yourself when you're in that much physical pain.

- Stacey Ballard

And so it was just depression. And then I started also having an anxiety disorder.

- Stacey Ballard

Yeah. You know, and and I do deal with mental illness, depression, panic disorder. And it took me a long time to not blame myself for it and realize it's a brain chemistry thing. It is not a it's not a lack of drive or a lack of personality. It's it's the chemical factory in my brain that I have no control over. And that was that took me a long, long time to accept, right?

- Liesel Mertes

What were some of those those messages of questioning whether it was just a problem with you or just loathing towards your body?

- Liesel Mertes

Were those being expressed from external people at all, like, can you look back and think, man, people just they said really, you know, casual or purposefully hurtful things that just lingered with me?

- Stacey Ballard

Yeah, I think a lot of people like me who look normal on the outside, we call it invisible illness.

- Stacey Ballard

People did not believe me, people did not believe me. And my family didn't believe me. My friends didn't believe me. My boyfriend I had a high school boyfriend for like four years. He didn't believe me.

- Stacey Ballard

And, you know, yeah, it is it is tough, especially when you look normal on the outside. And even if people see me curled up in pain crying on the floor, they can't understand that it's happening from the inside because they don't see anything physically hurting me, right?

- Liesel Mertes

Well, and just, you know, as this is also for the benefit of listeners to do better in these interactions, I want to drill down a little bit. What did that not believing sound like from your family members or the boyfriend or the community?

- Stacey Ballard

Well, you look beautiful. Well, I saw you at the amusement park yesterday, you looked fine then, gosh, you look like you were having fun. Well, gosh, what else do they say?

- Stacey Ballard

Let's see. You know, I was I was working full time and also going when I when I left high school, I was working and then commuting into San Francisco to go to the Academy of Art and and.

- Stacey Ballard

Because I had to I didn't have any other choice because in my family, you pull yourself up from your bootstraps, you have goals you need to meet because you have to survive this life, you know, and you have to have income. And so, you know, it was just it doesn't matter how you feel. Keep moving forward. Yeah.

- Liesel Mertes

Oh, man, I, I resonate.

- Liesel Mertes

Well, you and I both can translate some of those messages and have deeply received them. So I hear that because as you think about that, was I

- Liesel Mertes

Was there like a breakthrough moment or experience where you can remember thinking, like I just know, like I have to rest. And that is actually more healthy for me right now, like where you were really consciously acting against some of that programming and messaging that like you just got to keep on pushing?

- Stacey Ballard

I don't want to start crying, but, yeah, absolutely, I was I think I was twenty two by that time I had not been I had just barely been diagnosed with endometriosis.

Stacey Ballard

That took me 10 years. I had not yet been diagnosed with Crohn's, even though I was living with symptoms. And by that time I was also unknowingly living with a rare autoimmune liver disease. And I met my now ex-husband, but his name is Gary and we met through a friend and he changed my life. Yeah. Yeah. He was the exact opposite of everything I had been taught.

- Liesel Mertes

Yeah, tell me more about that life change and what what he brought to the table that was really important for you in that season.

- Stacey Ballard

So my family, I love them very. Yeah, very driven. My family, we volunteer. We we help other people.

- Stacey Ballard

We do our own stuff. I met Gary through a friend.

- Stacey Ballard

I am an old Deadhead that says a lot to people who know what that means. Gary.

- Stacey Ballard

We started dating and there was no drama in our relationship my whole life, I had spent becoming what other people needed me to be to make them happy.

- Stacey Ballard

I never knew what I wanted because I didn't there wasn't space for that in my life up till then, I was kind of a loner.

- Stacey Ballard

And so when I when I'd meet somebody who'd want to be friends with me, I'd be like, OK, you know, what do you like? OK, I like that too kind of thing.

- Stacey Ballard

And and and until I met Gary and got in that relationship, I had never known or looked at what I wanted.

- Liesel Mertes

Yeah, and he was able to open up some of those questions, what did you discover about yourself in your 20s?

- Stacey Ballard

Well, unfortunately, three months after we started dating, I ended up in the hospital going under emergency surgery.

- Stacey Ballard

So I didn't have a lot of time to find out very much.

- Stacey Ballard

But what I did find was a soft place to fall. He he didn't necessarily ask me questions, but he said, look, I don't need to be fixed.

- Stacey Ballard

There's no situation around you that needs to be fixed, you need to figure out what you want to do with your life, and that was both wonderful.

- Stacey Ballard

And hard, yeah. To be left in that space of like, oh, wait, who am I now? And it wasn't until I was like twenty two that I had had that space to find that out and then Boom immediately went into surgery.

We will come back to that near-death experience in just a moment. But I'd like to take a second to thank our sponsors. Our first sponsor is FullStack PEO. I am an entrepreneur and a small business owner. And I know the annual hassle of shopping around for a health insurance plan. Hours lost trying to navigate different options. This is where FulLStasck PEO comes in. They manage benefits for entrepreneurs and small-business owners, taking away the headache and providing great benefits for your people so that you can focus on growing your business.

We are also sponsored by Handle with Care Consulting. It is hard to know what to do or say when someone is going through something hard (you already realize this, podcast listener) and sometimes, you need some extra help. At Handle with Care Consulting, I offer targeted workshops, interactive keynotes, learning cohorts, and personal coaching options, empowering you to show care when it matters most.

Alright, bask to our story. Stacey has just met Gary a few months earlier. Before we hear about Stacey's hospitalization in her early 20s, it is helpful to hear about another story.

- Stacey Ballard

I, I don't know why I forget about my near-death experience, because that was the thing that changed my life first.

MUSIC UNDER THIS SECTION PLEASE, PERHAPS EMPHASIZING SOME OF THE ROCK/DRAMA

Stacey and her sister went to a Skid Row and Bon Jovi concert in Sacramento.

- Stacey Ballard

I was like 18 or 19 years old, it was probably 90 or 100 degrees in Sacramento, and I had been illegally drinking in the parking lot and was pretty hammered by the time we went in to to get our our selves situated in front of the stage so we could be at the first part of the stage for the concert.

They were exhausted, hammered. It was hot and the concert began. Immediately, people began pressing towards the front. It's heavy rock music, and Stacey braces herself against the stage.

- Stacey Ballard

And there's a lady next to me who's really, really drunk and she starts collapsing. And I know that if she collapses, she's going to be trampled.

Stacey struggles, with a few others, to hold her up. And then, a man comes pressing through the crowd.

- Stacey Ballard

I'm only five foot one, so he may have been like six two starts coming through the crowd, punching people out in the face with his fists.

He punches the lady she's holding and, finally, security drags the woman away.

And by that time, I am drenched in sweat and I put my hand back on the barrier to steady myself again, and there's a girl in front of me and she rips my hands off the barrier.

- Stacey Ballard

And at that point I start falling and I realize that I'm going to be trampled to death. And I have the classic near-death experience.

- Stacey Ballard

I went into the light.

She experiences a sensation of unconditional love, of seeing her life in review, experiencing her actions through the eyes of others. This is the end.

- Stacey Ballard

And then all of a sudden I was back in the concerts and somebody was pulling me out of the crowd.

The experience causes her to delve into different religions, meditation, metaphysics for the next year or two. Exploring the deeper meaning in the life she has been given. She meets Gary and, a few months later is on a women's spirituality trip when she starts to feel awful. Her chiropractor recognizes signs of jaundice and sends her directly to the emergency room.

- Stacey Ballard

I was completely neon yellow. I think I was twenty two years old.

She arrives at one hospital and has to leave because of insurance issues. Next, to the county hospital. It is Thursday before the 4th of July weekend.

- Stacey Ballard

I am so thankful for Highland Hospital. They saved my life.

- Stacey Ballard

And so I was literally freaking out in the hospital because this is the first time I had ever been hospitalized. And they had me all hooked up on tubes and they said this was Thursday and they said, we're going to wait till Monday and we're going to do surgery on Monday.

- Stacey Ballard

At this point, I had a tube down my throat because the bile in my stomach, I think, was causing problems. And so they were trying to drain fluid and stuff out of my stomach and having a tube down your throat. Is so traumatizing,

- Stacey Ballard

I cannot even tell you I. I can't the people that are on ventilators right now, Jakovčić. And the people that are out there wearing masks, they just don't understand the trauma that all these covid patients are going through.

- Stacey Ballard

I wasn't even on a ventilator at this point. I just had a N.G. tube down my throat.

- Stacey Ballard

And and I begged the doctors at Highland Hospital, please don't make me wait four more days. I can't do this. I can't do this.

- Stacey Ballard

Please don't make me wait four more days. I had doctors and nurses volunteer to skip their holiday weekends to come in on Friday and perform my surgery so I didn't have to suffer for more days.

- Stacey Ballard

So I've seen the good and bad of doctors for sure, and so they took me into surgery on Friday halfway through surgery, things went really bad. I was under anesthesia. They pulled me out.

- Stacey Ballard

My mom, they pulled me out into this room. My mom was standing on one side of me. Gary was standing on the other side of my surgery bed. And they showed an X-ray image up on the light board and they said, see this spot on her liver right here. If it's cancer, she'll have a year to live. If it's not cancer, she has a rare disease.

Ultimately, it was the rare disease, not cancer, and in the course of surgery, there was a breakdown where bile started leaking into her abdomen.

- Stacey Ballard

which then started my almost 20 year journey of being hospitalized or having the surgery. Every year. On or around 4th of July for the next 15 years. Hmm. Because I believe when I was partially under anesthesia and the doctor says she might only have a year to live, I think my subconscious. Did something, and every year for the next 15 years, I'd be in the hospital or undergoing surgery on or around 4th of July, huh?

- Liesel Mertes

Yeah, I think there are so many things that, like, science doesn't doesn't yet have language for about how our bodies keep the score and remember and hold things in our subconscious in ways that are profound like that. Absolutely.

In the course of these hospitalizations, Stacey is admitted and has to be put on a ventilator. This was one of the traumatic experiences that still causes her PTSD. - Stacey Ballard

They use something called a cuff when they are weaning you off a ventilator to get you to start helping you to breathe on your own, regain your strength. But I had a big note up on my board saying, you know, don't put her on the cuff in the mornings because that's where the anxiety is at its worst.

But one morning, a nurse comes in on her rounds and wants to put Stacey on a cuff. Her mom, who was there, objects, directing the nurse to the note. Stacey, of course, can't talk

- Stacey Ballard

And this person did not have time to listen. And so she pulled me off my ventilator. She put the cuff on me, and I started banging on the the hospital table in front of me. And I started going into full blown panic attack like I was drowning because I couldn't breathe.

- Stacey Ballard

And she stood there and watched me gasping for breath for a number of minutes.

- Stacey Ballard

My mom froze, she she was in such terror at what was happening, she did not know what to do.

- Stacey Ballard

And I think eventually she ran out of the room and got somebody. But it went on for a number of minutes until I was put back on the ventilator.

- Stacey Ballard

And this is with me to this day when I wear a mask outside, it brings it up.

- Stacey Ballard

And so I understand when people say they don't want to wear a mask outside and it's bothersome. And guess what? It bothers me, too. But I wear it because I do not survive getting COVID, so. Well, I guess what I was going to say is that a lot of people who live with chronic illness also deal with trauma that has happened to them if they have spent any time in hospitals or or long term care or dealt with doctors.

MUSICAL TRANSITION

- Liesel Mertes

So in the midst of all of these ups and downs and, you know, the regularity, what what are you doing or learning for yourself in order to maintain any semblance of equilibrium? Like what? What is becoming important for you to just be living each day?

- Stacey Ballard

One of the many things that is a continuing story through this is creativity.

- Stacey Ballard

As a photographer in high school and I've also been a potter and now I do mixed media, I've always done some sort of art and I'm literally talking coloring books and crayons. Tinkerbell, Mickey Mouse, it didn't matter. I was doing something because for some reason, being creative in whatever way I could help me.

- Stacey Ballard

And now I understand because there are studies out that prove why being creative and doing art helps, you know, lower cortisol levels helps reduce pain and stress.

- Stacey Ballard

But back then, intuitively. I just it just helped and I was also at the same time learning about meditation and learning about alternative medicine and different ways to treat myself.

- Stacey Ballard

And finally, at about 23 or 24, winding up on my therapist's floor in a fetal position, being diagnosed with panic disorders and depression and being put on appropriate medication was a huge help.

- Liesel Mertes

Yes. Yes. I think this you you talked a little bit about art and its importance in your story. That's something that you have segued into some of your professional involvements and a recent book that you have published. Tell me about what you have created for others out of your own experience.

- Stacey Ballard

Thank you. Yes, my book is The Fine Art of Waiting Wellness through Creativity, and because I've lived most of my life with health issues, I've used art to help in my own healing.

- Stacey Ballard

And I've created this book to help people decrease stress, change your relationship with illness and pain, and transform it into one of possibility and hope.

- Stacey Ballard

It is, it's challenging right now for everybody. Everyone has different stress and everyone has different stories.

- Stacey Ballard

Whether you live with addiction or the stress of of a health issue, we need to find ways creatively to deal with the stresses that come with life. Even more so right now. And that's why I created this book, is because art has been so helpful to me.

- Stacey Ballard

And over the years, I created these little projects like My Monster, which is a project that you actually are drawing a monster, which at times have been my disease or my stress of the week.

- Stacey Ballard

And then I tear it up or I stomp on it or I burn it and it gives me a feeling of sense of control. And so I've tried to put some of those projects in my book.

- Liesel Mertes

Well, and you showed me some of the pages. It looks like there's a wide diversity of types of projects and ways of engaging. And I resonate like that, that the physical expression, sometimes there's so much that is going on within our heads or within our bodies. And to be able to, like, externalize some of those things is really powerful.

- Liesel Mertes

Yes, I love that your book does that and you really want to make it accessible to all kinds of people. Tell me about the buy one. Give one that you're doing also with this book.

- Stacey Ballard

Absolutely. So there's a couple different versions. I specifically wanted to have a spiral bound version because I know being in the hospital, even just coloring and coloring books, is hard to hold down one side of the page and color on the other when you have IVs on both arms and things like that. So one of my books specifically is a spiral bound version and that one is twenty one ninety five.

- Stacey Ballard

It has a color, it has a sample page in color, so you can look at it and get some ideas. I do have a version on Amazon that's not spiral bound and it's nineteen ninety five.

- Stacey Ballard

But for any book that is purchased I will give one to somebody who's living with chronic illness who can benefit from having a book.

- Stacey Ballard

There is a section on my website where you can nominate yourself or somebody else for a free copy because I've lived with chronic illness most of my life and have lived with disability as well. I've been low income and so I may not have been able to afford this book when I needed it. And so for anybody who can't afford it, come to my website, nominate yourself. Or if you know somebody who needs a book, please go to my website and we'll give that information and nominate them for a book.

- Stacey Ballard

I will be happy to send one to them.

- Liesel Mertes

I love that I'm struck, even as you say, that, you know, like for most of my life, I've been low income and this is something that I like to ask about any range of disruption.

- Liesel Mertes

But that is perhaps, you know, that statement is a stepping stone into the question of

- Liesel Mertes

what are some of the things that you feel like people who have never dealt with chronic illness, they just don't understand about what it's like to live with chronic illness? What are some of the things that would be helpful for you to give voice to?

- Stacey Ballard

I think the most important thing is that 40 percent of Americans live with at least one chronic illness, 40 percent of Americans.

- Stacey Ballard

So we all know somebody who lives with chronic illness.

- Stacey Ballard

And so we we know that those people are out there working right now, just like I had to work, whether I felt good or bad. So we just need to be nice to each other even.

- Stacey Ballard

You know, we need to understand that we're all going through something, whether it's chronic illness, whether it's addiction, whether you're in an abusive relationship.

- Stacey Ballard

We are all we all have our own story of stress and what is causing issues in our life. I just wish we could be nicer to each other, more understanding.

- Stacey Ballard

And and and for me, as far as seeing people out there not wearing masks, I just keep saying 40 percent of Americans live with chronic illness and a lot of them are out there working because we have to we have to work because we have to pay bills and we don't have a choice because a lot of us also have to be on medications that we cannot live without.

- Stacey Ballard

And, yeah, it's it's it's a desperate situation. And that's why I'm also trying to get politically involved with what's going on as well.

- Liesel Mertes

Does it does it make you but I'm putting perhaps my emotions into it. I was going to say, does it make you really angry to see people who are not wearing masks? But maybe anger is not your go to what you feel when you see people who are not wearing masks?

- Stacey Ballard

It's heartbreaking. And it does make me angry. I was in CVS picking up a prescription and I haven't been to a store in months because I can't after my transplant, when I almost didn't survive, I was on a ventilator for three months and I have lung damage due to that and also due to a doctor's. Mishandling of another treatment I had I also have lung damage from that, but I looked normal and that's the problem is that we don't we don't wear our stories on our faces.

- Stacey Ballard

And so we can't see how we're hurting people. And I think people are just being selfish. Wearing a mask is easy. Doctors do it all the time. Nurses do it all the time. And I worry about the doctors and the nurses that we're putting in danger, too, because they're load of patients is is continuing. And the stress of that is is not helping as well. And I worry about our our people working in grocery stores and banks and the places that have to be open.

- Stacey Ballard

I live in a tourist town. I live in Lake Tahoe, California.

- Stacey Ballard

We are busier than we would be on a normal holiday weekend. And we have people up here not wearing masks traveling up here from the Bay Area. I don't know what to do. I don't know what to say, I just say to the people who are living with chronic illness, take care of yourselves because nobody else is going to do it for you.

- Liesel Mertes

Yeah, I hate that sense of. Of isolation, but there's there's a truth to it, you know, we we would like to we would like to think that we had more of a sense of community of care around those that needed it. But.

- Liesel Mertes

Well, thank God for you, though. People caring it is exceptional. Yes. Because and it's and it's worthy of being called out and praised because there is there's so much of that that has frayed around the edges in our social discourse and expressions.

- Stacey Ballard

And that's what's so important about what you're doing, is that you're creating this community of understanding with your podcast and and listening to your other podcasts.

- Stacey Ballard

No, I don't share the same stories as your other interviews or listeners, but what understanding I gain from listening to their stories.

- Stacey Ballard

And so by by having this podcast, you you are you're destroying the isolation, which I love.

- Liesel Mertes

Well, thank you. I that is definitely part of my aim. And man, I get to I get to receive some really important reflective stories. So I'm I'm always thankful to be able to help hold them. So thank you.

- Liesel Mertes

I'm struck that there's the there's the the toxic like don't do these things.

- Liesel Mertes

What are things that would be helpful if somebody is listening and they go, wow, yeah. I do know that person who walks with a chronic illness and maybe they're even thinking to themselves, oh my gosh, I've done some of the stupid things I've said, like, well, you look fine, you know, but and they want to do differently what is meaningful to you?

- Liesel Mertes

What are like good ways that people have supported you, that you think, man, that was so good.

- Stacey Ballard

What a great question. First, if you ask me, is there anything you could do to help me, I'm going to say, no, I'm OK. Mm hmm. But if you bring me over a casserole, I will love you forever. And when I'm feeling better, if you need me to change tires on your car, I will do that for you.

- Liesel Mertes

Yeah, I'm just showing up. Showing up.

- Stacey Ballard

If the person doesn't have an advocate, if the person doesn't have someone to go to doctor's appointments with them, I think that's one of the most important things that I tell people who have friends or even people living with chronic illness who go to doctors appointments by themselves.

- Stacey Ballard

Don't you are not in the state to hear everything you need to hear and you need to be prepared.

- Stacey Ballard

Ask a friend or a family member who you trust, who you can feel comfortable with to go with. You have a list of questions you want answered, but have that support with you. So if you know somebody who lives with chronic illness, ask them, do you need somebody to go to your appointments with you? If they go, oh no, don't worry about it, go away.

- Stacey Ballard

You know, can I go and take notes for you or, you know, do you need me to drive you to get your blood drawn?

- Stacey Ballard

A lot of us who live with chronic illness feel like a burden not only financially because we struggle so much with our income, but emotionally and mentally because I am not going to get better.

- Stacey Ballard

This is my life, and that's OK. Healing doesn't always mean you survive.

- Stacey Ballard

But it means you can walk the path with as much. Of an open heart as possible, and and so if you have friends living with chronic illness, just ask tell me more.

- Stacey Ballard

Tell me more.

- Liesel Mertes

Yeah, that's a that's a good thing to take way of thinking if if someone if somebody already experiences themselves as a perceived burden, you know, what am I doing to reinforce that or alleviate that?

- Liesel Mertes

You've said this kind of throughout, but if there's someone who is listening, who they are, you know, they're walking a journey with life long chronic illness, what words would you offer to them?

- Stacey Ballard

Find support. I'm sorry you're not alone.

Stacey Ballard

It's hard, not everyone understands.

- Stacey Ballard

I don't know if I can mention this and you're welcome to edit it out, but

- Stacey Ballard

I have found a wonderful support group for people living with chronic illness called Beyond My Battle.

- Stacey Ballard

And actually, they also have support groups for your caretakers, which would have been a huge resource for me and my ex-husband as we were going through this, if he had more support as a caretaker.

- Stacey Ballard

So please reach out for support. If you don't find the right support, it doesn't mean to you it could mean it's them. I've been in some pretty negative support groups that I was like, oh, no, I am not staying with this one.

- Stacey Ballard

So keep searching because there are people out there like me who we have pity parties for ourselves.

- Stacey Ballard

And I have really bad days where I can't get out of bed, but I am going to suck every beautiful piece of life out of this life that I can. And I, I invite anybody who wants to do that to join me.

- Stacey Ballard

And, you know, well, that's that's where art helps me.

- Stacey Ballard

And, you know, I can take that and turn it into a really dark piece and I have and because it gets it out of my head and gives me some sense of control over it because I can't, I can't, I can't do anything with it because it's in the past.

- Stacey Ballard

I can't manipulate it any more because it's already been experienced.

- Stacey Ballard

But I can manipulate the feelings I have from it that at times get get, you know, hard

- Liesel Mertes

That's powerful, that I mean, it's not revolutionary. But even just the way you said it, like something has happened to you, it exists as it.

- Liesel Mertes

But even that like the physical act of being able to render and manipulate it in a certain way. Yeah. Has its own power in experiencing it.

MUSICAL TRANSITION

Here are three take-aways from my conversation with Stacey

• As a person living with chronic pain, Stacey could often experience herself as a burden:a financial burden, a logistical burden: someone who would not get better. My first-takeaway is just a question: If you know someone that is living with chronic pain, are you subtly or explicitly reinforcing those messages? Perhaps the messages are subtle. Do you sigh loudly when they express bodily pain? Roll your eyes? Or do you give positive messages: you are important, you are more than your pain, you have a place here.
• Offer to come along to doctor's appointments, to take notes, to drive.The flow of information can be overwhelming, and company is often appreciated.
• If you are living with chronic pain, finding a support group can be really meaningful.Perhaps that is locally or through the Internet. Support groups can also be helpful to care providers as they shoulder a particular burden. And, as Stacey noted, not all groups are created equal. If the group isn't working for you, don't be afraid to move on and seek out another support group.
• And this is a last, bonus take-away.If you don't know what to say, "Tell me more," is a great prompt. Stacey noted the importance of this phrase. You might have noticed that I unconsciously did this earlier in the interview. I don't know a lot about chronic pain…which meant that I didn't really even know what to ask. However, by just opening myself up to her story with an open-ended question, I learned a lot.

OUTRO

Link to Stacey's Blog and Work: https://fineartofwaiting.com

- Dustin Kaehr

And I think there are some people that are so scared of dying that they never truly live. And so so I think if we can help people understand how to truly live. Because once you get that. Once I have that, I'm way more understanding.

INTRO

Dustin Kaehr is many things. He is a leadership and business coach. He is a trainer and speaker and author and entrepreneur. And he is all of these things while living with a terminal disease, HATTR, that has no cure.

HATTR is genetic, passed through his family line. What is it like to live with this uncertainty? To love and to raise children under this spectre? How to let them know about his condition?

Dustin shares about his journey towards meaning, his book, and his purpose in today's episode. But Dustin is more than just his diagnosis. And I want to introduce you to him. Dustin married his high school sweetheart.

- Dustin Kaehr

You know, we were we started dating my see you. We went to prom together my junior year of high school. She was a year older than I was. We went together. We went to prom my junior year. And then we dated, dated all through the rest of my high school and then through through college.

They went to different schools here in Indiana where they were both college athletes. She playes volleyball and he played golf.

- Dustin Kaehr

She graduated from Purdue on Sunday. And then we got married the following Saturday back in nineteen ninety nine. It was a crazy I don't know that I would recommend that to anybody ever. But you know, we were young and in love and probably dumb, so it all sort of worked out well.

They have four boys together and Dustin enjoys golfing and camping with the boys.

- Liesel Mertes

One of the things that we want to talk about today is something that happened a little bit later on in your family life. You set the stage for us. Right about when your first son was being born.

- Liesel Mertes

Where were you in life when you got news of your diagnosis?

- Dustin Kaehr

Yes. So it was May 2003. And it was my my first son, Evan, was born May 16th. And it was right around that time that that I had gotten an email back confirming a diagnosis that that I was was I probably had instinctively known was coming just because of my history with with the disease.

- Dustin Kaehr

And we'll talk about that here in a second. But a diagnosis, confirmation from from IU Med Center and some bloodwork I'd send down. They confirmed that I did, in fact, have the same rare genetic disease that that my dad had and that my grandfather had and that came into our family through my great grandmother.

- Dustin Kaehr

And it was it's sort of it's one of those diseases that if the parent has it, the child has a 50 50. It's it's a genetic flip of a coin. And if the parent doesn't have it, then then you don't.

- Dustin Kaehr

So at 26, I found out I had have that disease in a disease that has really no cure and early onset. And knowing that, you know, if I look at my family history, my grandfather passed away at 63.

Dustin Kaehr

He had a brother die at 64. He had another brother die at 54. My uncle passed away at fifty eight. My dad passed away at 53. So no cure. And so tell us. Good.

- Liesel Mertes

Tell us a little bit. Tell us a little bit about each HATTR.

- Dustin Kaehr

Hereditary amyloidosis trans-thyretin. So, trans-thyretin TTR. It's a protein in our bodies. Your body has it. Everybody's body has it. The majority of it is produced in the liver and it's a it's a protein that's that's a carrier protein. So it's designed to carry thyroxine and retinol. That's the trans thigh written. So it's a it's a protein that bonds together and it carries those chemicals through through your body. Well my TTR protein mis-folds, because of a of a of a defect in my in my DNA, then we know exactly where it is genetically.

- Dustin Kaehr

So that protein misfold. So when it misfolds then all those misfolds clump together and then they start to deposit themselves in my body in different places and depending on the strain of this rare disease. And so it is a rare disease. So we talk rare disease. We're talking probably less than fifty thousand people in the world, less than three thousand people in the United States.

- Dustin Kaehr

And then it starts to deposit that that protein that amylase protein starts to deposit itself in different places throughout the body and depending on the strain, could determine what parts of the body it attacks and how it progresses.

- Dustin Kaehr

But for us, it attacks our peripheral nerve system. So that means that the nerves in our hands and our my feet.

- Dustin Kaehr

So my hands are usually always tingling at some level of numbness. My feet as well, though not thankfully, not yet quite as bad. My grandfather lost the ability to walk as he got to the end of his life because of the because of the nerve damage. And then eventually,

- Dustin Kaehr

What kills you from the disease is eventually it starts to attack places like your heart. And so you think about your heart being a muscle, the beats, but it's got a lot of nerves in it.

- Dustin Kaehr

Well, that protein starts to build up on those nerves and that heart muscle starts to become enlarged. And so you die of of congestive heart failure in an enlarged heart. Like my dad's heart was almost twice the normal size when he passed away. And my grandfather's was over three times as large because of the AMA. So.

- Liesel Mertes

So is this something as a child, you were growing up and you were aware of this sort of potential diagnosis that hovered over you?

- Dustin Kaehr

For sure. Yeah. I mean, one of the leading research facilities in the world for this disease is I you met.

- Dustin Kaehr

And so I remember being five and six years old and having doctors and nurses come to family reunions and collect blood samples as they were trying to find cures and in treatment options for this disease, so I you know, I had been around it my my entire. Been around it my entire life, my grandfather passed away in September of the year. I had went off to college in 1995. And I had already at that point his his two brothers had passed away.

- Dustin Kaehr

I knew my dad had the disease, you know, by the time I was in middle school.

- Dustin Kaehr

And again, we don't even necessarily know what it was called. But you knew we had the same thing Grandpa had. I mean, you look the same.

- Dustin Kaehr

His hands were the same. You could tell his hands bothered him. My dad was a truck driver his entire life. So, you know, his hands bothered him anyways. But live growing, you know, I can tell you, there are times now we're just living with the disease now, I think.

- Dustin Kaehr

And my dad, I'd be in so much pain because I know I'm in and then I know what he was was going through. So. So, yeah.

- Dustin Kaehr

So when I, you know, say at twenty six I received a diagnosis that I'd probably. Thought was coming. I had always sort of made the assumption my dad and I are we look alike. We were built like some of the like there or a lot of same characteristics. So I always just sort of in my head always thought, yeah, I have I have employed.

- Liesel Mertes

So this this was something that was part of just who you were growing up. This awareness, it sounds like. But I'm I'm struck that this is really particular thing for a child. And then a teenager and an adolescent to grow up with this awareness of...how is that framed for you in a way that didn't wreck you or, you know, kind of spin you off?

- Liesel Mertes

What were things that people were communicating to you or you were doing to ground yourself?

- Dustin Kaehr

You know, it's funny. And I think especially and when you talk about rare diseases where there's there's not a lot of there's no cure and all the treatments are simply to take care of, you know, the symptoms.

- Dustin Kaehr

Our family in our extended family. They didn't talk about it a lot and they still don't. I mean, it's a conversation I'm trying to have more and more of with people, as there actually are some. There's no cures.

- Dustin Kaehr

There's some treatment options that are that are just within the last 18, 24 months or starting to come to the market. But it was just something that we never that we never talked about.

- Dustin Kaehr

You know, we would sort of deal with the health issue as it arose in the moment, recognizing, hey, the reason this is happening is because of this other thing.

[- Dustin Kaehr

But we're not we don't ever really talk about. We don't really talk about it. I mean, don't ever remember having having a sit down conversation with my mom and dad about amyloid or even what it was, what it was called.

- Dustin Kaehr

So it just it wasn't something we talked about. It wasn't. And it's a weird thing, right. Because how do you what kind of conversations do you have? And I think there was there got to be a point where there becomes is fatigue and talking about something where OK, well, let's talk it out. And where does it end? Well, always. Yeah.

- Dustin Kaehr

You do write letters and will do well.

- Dustin Kaehr

And I'm not a fan to go, there's no hope. But there really, really wasn't. I mean, there wasn't like, OK, well, here you can go to this, go to Mayo Clinic or go to Cleveland or go to San Diego like there's a while. It might not be here, but I mean, that's that's not that's not the case.

- Dustin Kaehr

And so faith was always a part of our family as well. And so, you know, I think framing it through, watching people live out their faith through through disease and through complications was probably all the framework that I had.

MUSICAL TRANSITION

- Dustin Kaehr

You know, where it also created some interesting conversations because I mentioned my wife and I were high school sweethearts. She was very familiar with the disease. And so those were all conversations that we had to have even as we were dating and wanting to talk about marriage going, OK. I mean, let's just make sure you know what you're signing up for. Right.

- Dustin Kaehr

Right. I didn't know do. I remember I did that.

- Liesel Mertes

Did that feel like it's one thing to say now, you know, more than 20 years past that those feel especially freighted and emotional and real. Yeah. Like what? With his conversations.

- Dustin Kaehr

Like, yeah, I had no framework at twenty at twenty one. Twenty two. You know, when we were having, when we were having those, I mean you know I was 18, she was 19 when my grandpa died. And by then we'd been together for a couple years. So instantly was already this big elephant in our relationship. Yeah. But as we got closer to thinking about engagement, I remember just going, hey, we just probably need to talk about this.

- Dustin Kaehr

Like, I don't know. Listen, I'm going to assume I have. I don't know. But I assume I do. And so I don't know what that means. And I think it's, you know, yeah, it was it was frayed and awkward because I didn't have a good we don't have good words for it. But at the same time, I think, you know, there's there's some of that where that that youth and exuberance and at some level naivete to go.

- Dustin Kaehr

No, no. I love you. It's OK. We'll figure that out.

- Dustin Kaehr

I can tell you is a more structured conversation. When we found out I had it, when we then said, OK, our first son is born. How many kids do we want to have? Because every with every child, it's a 50 50, it's a 50 50 flip of a coin of whether you're gonna pass that disease down to your child and then subsequently, if they have it, your potential, your grandchildren and perpetuating it through the generations.

- Dustin Kaehr

That was a much harder conversation to have.

- Liesel Mertes

How did you even begin to I mean, you said a structured conversation. There's the logic and then there's the deep emotion. What were some of the things that were swirling for you as you made your way to now the four boys that you have?

- Dustin Kaehr

You know, there was a real rustle with am I doing the responsible thing as a human to continue to have children knowing I have this genetic defect? To Pat to potentially pass it on. So that was that was at the core of the RSL, right? Was was that was that.

- Dustin Kaehr

And for me and for Amber, my wife, I mean, it really it came back to. It came back to our faith.

- Dustin Kaehr

It came back to you know, we had always said we wanted four kids as we talked about marriage, as we talked about families, we talked about what we wanted in our lives and what we saw God wanted for our lives for was always the number, you know.

- Dustin Kaehr

And so we took you know, we just had trust and faith in that. I mean, in the same way, when we had four boys and people go, well, are you going to try for a girl?

- Dustin Kaehr

And we're like, you know, it was never about trying for a girl. It was always about what this was. And so we're not going to we weren't gonna try to make it something for the sake of making everyone else feel OK. And I and I'm sure, you know, I never had anyone in my family come right out and tell me this. You know, he really for kids.

- Dustin Kaehr

I mean, I've got you know, I know that, you know, we've got my dad's got some cousins and there's there's some that have more than that have. You have four. Have five or have six or maybe even maybe even one that has seven and. And no one's ever talked about it. But you would know, you just know there's probably people maybe either inside or even outside the family that know that. Look at that and go. That seems you're responsible.

- Dustin Kaehr

And that's really hard.

- Dustin Kaehr

And now you know what's interesting, Liesel, is you're to spot your spot with technology where if you were if you were doing in vitro fertilization, you could make that determination whether that embryo had HATTR or not before you went ahead and implanted it. Do you do that or not? Like that opens this whole ethical this whole ethical conversation.

- Dustin Kaehr

Right, about am I going to play God right. And I think that was what I don't know that we put those words to it. When I was twenty one and twenty two. But I think that's the question we were wrestling with. And you know the answer. My wife and I came to it, said, no, we're not. We're going to we're going to live our lives.

- Dustin Kaehr

And at deep down, there's always been a hope that technology will catch up with with where we are. And we're right we're right in that spot now.

- Liesel Mertes

Right. Well, and I'm struck you. You have four children and you are now raising these young men in the world. You spoke about your own upbringing and some of the culture of silence that was present. What choices are you making out of that experience in how to talk about this disease with your boys?

- Dustin Kaehr

Yeah. So. When my dad passed away, the boys were William, our youngest, was just born. He was not even five weeks old. So we they were newborn to four and six years old. So, they you know, the older ones remember grandpa all. They remember that he had a bad heart.

- Dustin Kaehr

You know, one of the things that came out of me living with this disease was a real clarity and focus around who I am and what I'm going to do with my life and the way I'm going to raise my boys.

- Dustin Kaehr

So one of the blessings that came out of living with this disease was I wrote a book for my boys called Dear Boys The Letter Every Son Needs From his Father. And it's a letter that I've written in case something were to happen to me. Right. Because everyone knows life is short. But until you experience it in a real, tangible way, it's just sort of this cliché when in reality, none of us are even guaranteed tomorrow. Right. So I wrote this letter for my boys.

- Dustin Kaehr

If something were to happen to me, it's ten sentences long and it's actually designed for me and my sons to go through together. And in there I talk about I talk about the disease briefly is sort of this idea that genetics isn't on my side and this is my motivation for doing it.

- Dustin Kaehr

So when my boys turned fifteen, we spent a year going through that book together in preparation for their 16th birthday. So the plan was always to talk to them about it.

- Dustin Kaehr

By the time they got into their into their teenage years, now, that was assuming my health was going to stay continue to be good. And we wouldn't have to have that conversation. We wouldn't have to have that conversation earlier because of some sort of, you know, health health issue.

- Dustin Kaehr

We weren't going to not talk about it, but but again, how do you have. How do you have a conversation about a rare genetic disease with a nine year old and that that they can understand? And so we had made the conscious choice when we when the time comes. When we're gonna take him through the book or something happens, then we're going to we're going to be open and honest, but we're gonna speak it at.

- Dustin Kaehr

We don't need to flood them with information. And, you know, for me, I think with with kids, especially in those types of conversations, you want to just unload at all so you can feel better about finally have say, having said it, but you sort of have to learn.

- Dustin Kaehr

I don't want to give you any more than you need. And I certainly don't need to answer any more than what the question you're asking is.

- Dustin Kaehr

Right. Because that's what happens, right? Someone comes up, mommy, where does babies come from? And next thing you know, they unload. And all they really wanted to know was, you know, something really simple. And you could have stopped seven words in and they would have been fine for six months. But we we talk through our nervousness with that sometimes.

- Dustin Kaehr

And so in July of 2018, I had tried a couple of years earlier to get on a trial drug that wasn't approved but was going through trials and didn't get on the trial drug. Well, I got a callback from Northwestern, said, hey, there's another drug that we'd like you to come up and see if you could qualify to get on their expanded access program. All that means is it was really close to coming to market. And so they were opening up, opening up access.

- Dustin Kaehr

So I went up and did some testing and found out that I qualified to receive the drug. And so that meant at the end of July, July 30th of 2018, it was a Monday.

- Dustin Kaehr

I was going to Northwestern to get my first my first dosage of of this drug.

- Dustin Kaehr

And so that that was a trigger. Now, on Sunday or that weekend, we had to sit down and talk with the boys. Because we needed them to know what was going on. And so, you know, at that point, they're 14. Twelve. Ten and eight.

- Dustin Kaehr

And so we sit him down at the kitchen table and say, hey, you guys. Some of you don't remember, but you get older. Evan and Joe, you got an immigrant, lot of bad heart.

- Dustin Kaehr

You guys know how my hands bother me. And they they've known my hands numb and my hands bother me. It's part of the it's the first symptom. And I'm like, so there's this disease that runs in our family and it's called HATTR. Hereditary amyloidosis trans threaten its HKT are amyloid just for disremember. It is amyloid. And here's what it looks like.

- Dustin Kaehr

And thankfully I was able to pull up some pictures and some great videos from educational resources. And you know, I say Grandpa had the disease and so, you know, I have the disease and I'm gonna go get a drug. And I said, I said, so now here's what this means, is it is each one of you. You may have it or you may not. Right. It's, it's a genetic. It's just it's in genetics.

- Dustin Kaehr

So my my 10 year old. Owen And looks at me and says, so do I have it. And I just sort of look at him and I go, I don't know buddy, I go we could find out. I mean it it's a simple blood test to find out. I said, but and we don't need to find out. I said, and here's why.

- Dustin Kaehr

And this is exactly what I told them, I said, listen, I said, I'm going up and I'm going to get on a drug that we hope is going to slow, maybe even stop this disease completely.

- Dustin Kaehr

It's brand new. It's been in development for over 15 years. The technology, the technology they're using for this drug. Won the Nobel Prize in medicine 17 years earlier. That's how long.

- Dustin Kaehr

It's just how long it's taken. To come to market, I said, but here's what I do know. I said, here's here's the hope I have. I said, I have a real hope boys for the first time in a long time that I'm not going to die like Grandpa did from this disease. Because of the medicine and the way medicine works. I said, here's what I know for sure. I said, I have full confidence. And by the time any of you would know if you had it or not. Or even have any symptoms because you're at least 15 years from symptoms in your early 30s, the way medicine evolves, there is going to be a pill you're going to take and your life won't be anything like my life or grandpa's life with the disease.

- Dustin Kaehr

And that was the conversation and it was maybe a seven minute, seven to 10 minutes and we let it go. And I said, do any of you guys have any questions? No, no. 14 year old was doing whatever in the end. Right. And I cannot get to the other like.

- Dustin Kaehr

All right. So who's gonna watch us? Are you guys who's driving me to soccer? Yeah.

- Dustin Kaehr

Can we get. Can I still play x box like that's. And so we left it at that. And so now these conversations, they're just sprinkled.

- Dustin Kaehr

So I spent last week in Cleveland Clinic for a couple days. What do you want a clinic for? I just got some appointments with some doctors. Oh, for the disease. Yeah. OK.Right. It's it.

- Liesel Mertes

It allows you to meet their emotional moment and not exceed it and be responsive to that.

- Dustin Kaehr

That's exactly right. That's exactly right. The only difference has been then as my boys got older. So now I have a 16 year old where we harmonize. We went through the book. We would be able to have some deeper conversations just about. About health, about life, about living life on purpose. About having clarity and focus. About why it's so important to know what you were designed to do.

- Dustin Kaehr

And to appreciate life. And so, I mean, that's a message I want to share with everybody that I'm certainly going to share with them as they're mature enough. Maybe he wasn't ready for. But he was certainly mature enough and he needed to have.

- Liesel Mertes

Well. And those are some of the themes that you bring powerfully into your work as a keynote speaker as well, aren't they?

- Dustin Kaehr

Correct. I mean, it. Everything that that I do in in the keynote speaking in the leadership, in the leadership work, that the leadership training and coaching that I do comes out of that place that that I think as individuals. You know, we have to understand who we are at our core, that we live out of our identity. And, you know, knowing that and then knowing what you're chasing every day and then knowing what values matter most to you, when you can do all of that, you start to get real clarity and focus around what you're here for and and how to live.

- Dustin Kaehr

And I think that's great to lead your personal lives. I think that's great for leaders in a professional setting in an across the board. So it really has formed. I mean, it really has formed and shaped who I am and what what I do every single day.

- Liesel Mertes

And if people are interested in contacting you, hearing more about your book or your work, we're going to include some links and best ways to reach out to you.

- Dustin Kaehr

That'll be great. That's awesome. I would I would like to hear.

- Liesel Mertes

And there are links to Dustin's book and his work in the show notes; check it out. I want to take a brief moment here to thank our sponsors. We are sponsored by Fullstack PEO. Fullstack provides benefits solutions for small businesses and entrepreneurs. As we move towards open enrollment, let Fullstack manage your benefits so you can focus on growing your business. We are also sponsored by Handle with Care Consulting. Do you find yourself in sticky situations, wondering what to do or say when people are going through something hard? At Handle with Care Consulting, I offer workshops, trainings, and coaching, empowering you to come alongside your people with care and compassion when it matters most.

- Liesel Mertes

So it sounds like you have done a lot of work professionally and personally and how you live each day. What do hard days look like for you?

- Dustin Kaehr

Hard days. Hard days for me. So hard days can come from me seasonally. Right. My dad passed away December 16th. So the holidays are always hard. As I get into as I get into those Hosie anniversary days, right, I get into December.

- Dustin Kaehr

And I mean, I just I there are days where I don't feel like getting out of bed because I'm you know, I'm just real super reflective of my dad and the time.

- Dustin Kaehr

And, hey, today would've been the last time we talked on the phone and all of those those types of things. I even get, for me super reflective around my birthday, although I don't think about it a lot. But you're not going to be 40. I'm going to be forty four.

- Dustin Kaehr

And then there's just some instant math. I always do.

- Dustin Kaehr

Well, my dad would have been 64. OK. Right. Well, I'm 44. So now I'm. I'm nine years and I'm nine years from how old my dad was like that. Fifty three. That birthday for me hangs right now over my head because that's how old my dad wasn't. And I don't know, I think there's some normalcy to that. I think if you lose a parent like that, you start going, well, am I gonna outlive my parents in that regard?

- Dustin Kaehr

Am I going to be able to live longer than them, especially in this environment? So those days, those mental those days are hard mentally for me when my physical health isn't great.

- Dustin Kaehr

You know, I just went to Cleveland Clinic last week.

- Dustin Kaehr

I won't be going back again. I've got some tests I need to do. Coming up, those hang on me. Right. And so it's in those when they when they do, I. I do a couple of things. And I've I've I've given myself way more grace and patience as I've gotten older than I used to. Right. This idea that just suck it up, buttercup like not nothing's happening today. So relax. Right. Like that's always was the mindset.

- Dustin Kaehr

And in reality, I've just given myself the space to go. I don't feel very good today.

- Dustin Kaehr

So, yeah, I work from home and that's OK. And I'm not I'm not ashamed to tell anyone that wants to. If anyone has an issue or problem with that and let's talk about it. So I've been I've probably given myself more grace and space and and then at some level, like, I continue to keep my eyes just on the bigger picture of my life and going, why am I here?

- Dustin Kaehr

What am I doing? What am I chasing after? Right. What? Why do I do what I do? Where does that come from? Lean into my faith. Into my family. Lean into my friends.

- Dustin Kaehr

And so, yeah, that's that's I don't know that I have more hard days than I used to. Like I said, I probably give myself more space and grace for those days.

- Dustin Kaehr

You know, empathy was never a strong attribute of mine. I've had to work really, really hard to develop my sense of level of empathy, not only with other people, but I think with myself,

- Dustin Kaehr

Because I think when you're when a person like me that, you know, your you can be hard and you're a you know, I can give you all my all my personality letters and numbers that would all make sense. That type of person. Right.

- Dustin Kaehr

But that's not an excuse for not right. Not in my mind.

- Dustin Kaehr

I guess my Meyers Briggs on you and get the greatest Myers Briggs, the Enneagram and give you all of that and you'll go, oh, you're that kind of person. Yeah. No, that that's my natural tendency. But that's not an excuse for behavior. I can't go. Well, that's just the way a D is like I'm sorry I said I'm a Doberman Pinscher.

- Dustin Kaehr

Like that's I just brought people over. That's right. Right. And I think that's always and that's the fear.

- Dustin Kaehr

And those types of things is we we start using anything we can to validate behaviors and feelings. Right. That well. Any interest for anybody?

- Liesel Mertes

I'm struck even, you know, as you thought about your own progression and giving yourself more grace in space. It touches on what is at the core of living life with empathy, which is we actually treat people the way we treat ourselves.

- Liesel Mertes

Like there's this overflow. And if we have this uncompromising hard driving, like there's no space for weakness voiced towards other people, it's also deep internal voice because that voice is driving our internal person as well.

- Liesel Mertes

And that has its own, like, unrelenting sense of exhaustion. And sometimes we celebrate that we're like, that's so great. You get so much done, but that the total internally is pretty toxic over time, especially when compounded with, like, physical limitations.

- Dustin Kaehr

Yeah. Yeah. So, I mean, at the core, I am a firm believer that we're all meant for relationships.

- Liesel Mertes

What are ways that your community of people have come alongside you in this journey in a way that has really mattered to you?

- Dustin Kaehr

Yeah. And, you know, it's funny for for a really long time.

- Dustin Kaehr

It wasn't even something that beyond our family, Amber and I would even talk about. With with friends. If they knew my family, they knew my extended family. Then there was then there was some familiar charity and connection and connection with it. My wife and I moved to where we live now about about eight, about eight years ago. So my dad passed away while we were up here.

- Dustin Kaehr

So there was there was a little of that. But it wasn't even something that we really that we really had talked about a lot. And mostly because there wasn't any. There wasn't anything immediate. Right. It wasn't like a Dustin's going into the hospital. We need some help here or something. Something like that. So we didn't have any of these immediate gaps that people could step in and fill.

- Dustin Kaehr

What I most have appreciated, though, as I've gotten over the last several years, more comfortable just putting words to the story and telling the story are people who were two things are willing to listen. But even more than that, they're willing to ask how you feel and have your hands. Hey, how's the drug you're on? And again, I've started to become more and more public about it. And so I think if you're if you're if you become public with it, that that gives people permission sometimes.

- Dustin Kaehr

And I think that's why it's more important that I be a little more public, because I want people to know I want to educate people. I want. I want people to know it's OK to have those kinds of conversations, because those are the kind of conversations that that really matter when we think about life and work and everything else.

- Dustin Kaehr

So it's been people who are willing to listen and people who are willing to ask you how you feel them and then be OK with. When I don't give them an answer that they want. Sometimes you ask how someone's doing and they unload on you. And you were like, Oh man, I wish I wouldn't have asked.

- Dustin Kaehr

It was just something on the way to the bar. Were you right? They just right.

- Dustin Kaehr

The you know, the the standard answer. But, you know, there's been a few. There's been a few.

- Dustin Kaehr

I've got a few really close friends that I can send to that I can send a quick text to to go, hey, I'm really struggling with this. And they're like, hey, I got Chhay, we're thinking, hey, we're praying for you? And they'll follow up. And I think that that's to me is really, really important. Right. That's the people you're on with. Right.

- Liesel Mertes

Well, I'm struck that you are, how you're choosing to walk with this disease necessitates its own level of bravery and trailblazing, because it's not that you saw this necessarily. Like, I'm I'm sure you saw some some beautiful aspects of living and dying with this disease modeled for you by a public facing communicating proactively.

- Liesel Mertes

It's not like you're just doing what your dad or your grandfather did. Like you're charting your own course for you, for your son's very purposefully. How did that look? You know, you mentioned days of deciding I need to work from home.

Dustin, at the time of this interview, was working for Lippert Components. His is now out of on his own as an entrepreneur, but his reflections of working in a larger, corporate setting are still so meaningful.

- Liesel Mertes

How did you decide to communicate with your employer about this? And how did that conversation go?

- Dustin Kaehr

Tony Gwynn, you know, because I had been I'd been public with sort of, you know, the disease and that type of stuff with people, people around me that I was that I was working with. And again, I had I had leaders who would ask then. Right. He would lean in and go, hey, how are you? How you feeling? How you doing? Or, Hey, I'm going to. I need to take a day because I've got an appointment or or whatever it is.

- Dustin Kaehr

And so because they would ask, I would I would feel even more comfortable to to share. And I think as that deepened then it really I would say. It's it's been no big deal. But. But I haven't felt like there's this tension. There's been this this tension there. Right. Yeah. I mean, anytime I've needed to needed to go hey, I happened to be working from home today.

- Dustin Kaehr

And again, I've got a role and a job that allows me, you know, maybe some more of that flexibility than if I had to show up to be at a spot every single day.

- Dustin Kaehr

But I but I still get the sense of that, that, you know, I've I've had some of that where I can have that conversation go, hey, just not feeling like I need to cancel, I need to cancel this meeting or I'm not real and make it. And so there's that flexibility and right after that. Yeah, right.

- Dustin Kaehr

And it's and again, it's a reminder of grace and space. Like it's like there gets to be a point where you continue to miss, miss, miss, miss, miss.

- Dustin Kaehr

And now we talk about what disability looks like. And that's a whole separate conversation.

- Dustin Kaehr

But I think but I think it's just that idea of giving people giving people space for when they may need it, because you don't you don't necessarily even know what's going on again and again, I, I live mine out publicly because I for education for you know, I want everyone to know why they get up every day and do what they do and so on.

- Dustin Kaehr

Because I think, you know, again, life is short. And in reality, you know you know, the dedication in my book is to my dad and says and showing me how to die. You showed me how to live.

- Dustin Kaehr

And I think there are some people that are so scared of dying that they never truly live. And so so I think if we can help people understand how to truly live. Because once you get that. Once I have that, I'm way more understanding.

- Dustin Kaehr

If someone that works with me says, hey, I've got a kid at home that's sick, I need to take I go, I like you don't have to tell me anymore. Like, I don't need any more X, like, go.

- Dustin Kaehr

Right, because I've got that. And so as I and I'm thankfully I'm surrounded by a group of leaders that I get to interact with and that understand that as well. So when I simply tell them, hey, I'm going to be going to be out for a couple days. OK, no problem. Like, move on. We don't need to belabor it. We don't need to note it and put it in your file and and move on.

- Dustin Kaehr

And I think that's what a workplace culture that that is driven around wanting to care about people. And making sure that the people matter first. I think that's the kind of environment it creates and I would argue that's kind of environment everybody wants to be in.

- Liesel Mertes

Right. Were there seen in that way? Yeah.

[00:46:31.660] - Liesel Mertes

You've, you've talked about aspects of ways in which you've been supported. The importance of people asking

- Liesel Mertes

what are some of the worst things that you've been met with, things that have just kind of set your teeth on edge or felt really bad that people didn't either purposefully or inadvertently in your community?

- Dustin Kaehr

Where I probably get most frustrated just it is because of the clarity I have around trying to live my life and the way I want people to live. I really frustrate when I see people selling themselves short. You know what I mean when you're gone. Mean, like, I wish I could. I wish I could tell you that you're settling. And I know you think this is great, but you're settling because life is so much more than.

- Dustin Kaehr

That's probably where at this stage my journey, I find myself more times than not. Like you really. When about that like. Right.

- Dustin Kaehr

You know, with my kids, like how we raise our kids. I have a different perspective on what I want for my boys. And so when I see people that get really upset about things related to their fourth grader or their sixth grader, and I go really like, do you think that mattering.

- Dustin Kaehr

That doesn't matter. That doesn't matter. Like, by the way, then what are you teaching your kid? That that that that matters. And that doesn't matter. Like, that's where I find probably find myself getting irked if that's the right word on if it is. But but I'm fired up certainly. Probably more places than not. Hmm.

- Liesel Mertes

But any words that you would offer to someone who is, you know, living with a disease that doesn't have a cure or for people who are living with them? Yeah.

- Dustin Kaehr

You know, as we as I went through this journey, even in just the last couple of years. Right. So I grew up around this disease, my family here in northern Indiana. We knew it was a rare disease. But I was still you know, we talked about the herd you run with. And while it is a rare disease, what I've been most encouraged about over the last couple of years are the other people I've met that have the disease.

- Dustin Kaehr

Who aren't family members right from from around the country. Through through an Android support group, through a Facebook group, through doing some patient advocacy stuff with with people and getting to spend time with other patients and their caregivers. That that is given. That fires me up. That gives. I mean, they just sort of gives life even to me more. So we are now it's you know, we're at the end of February. And the last day in February every year as rare disease day.

- Dustin Kaehr

And so my wife and I on. Later this week are going to head out to Boston to be with the company that produces the drug that I'm taking for their rare Disease Day celebrations. We're going to be part of a panel discussion. And so we're going to be. We're gonna get a go out to dinner with other people who are on this journey. And I love that I love Canal because because they've got a point of reference that nobody else in the world has, when we want to have a conversation about something, other people, other people can maybe understand it.

- Dustin Kaehr

Right. There's a difference, I think to me there's a real difference between between having empathy. I'm going to put myself in your spot to going. I've been in your spot. All right. Right. Understand having an understanding I think is different than empathy. Empathy is I'm going to try really hard and I'm going to give space and grace. Understanding is now. I've been that. Yeah. My hands wake. I wake up every morning between three and four o'clock because my hands are numb too.

- Dustin Kaehr

Right. And so that has been that's what I appreciate the most, is interacting with with those groups. And there was a piece of this for me late last year.

- Dustin Kaehr

I was in Dallas, Texas, with a group of them going through some training, and they were all a generation older than me. And a lot of them were sort of first generation and their family found out they had the disease. So the fact that I've known for years and years has been a unique thing.

- Dustin Kaehr

But for me, it was it was moving humbling and rewarding.

- Dustin Kaehr

As I got to sit with all of them for a couple days at the end of a couple of days, I got to look at them and I said, all of you are old enough to be my dad. You're all in that age group. You're you're 60, 60 to 68, 70 years old, I said. And so you all have kids and some of your kids know they have the disease or some don't. And so some of them would never say this to you. But some.

- Dustin Kaehr

But let me on their behalf, say thank you for doing the work you're doing to fight the disease. Right. I never got to thank my dad for all the times he would go down to IU and sit in a lab for a couple days and give tissue samples to help progressed the disease. Right. I mean,

- Dustin Kaehr

we donated his body, my grandpa's body, so they could do organ harvesting so they could use those so they could use what they know of their body to help us. The drug I'm on is a direct result of some of those samples and tissues that my dad and my grandpa gave.

- Dustin Kaehr

So to be with another group of people and tell them thank you for fighting this disease and and let's connect. Let's have this conversation. If you're someone who has one of those rare diseases, there is a community. They are you are rare, but you're not alone.

- Dustin Kaehr

And I think that to me has maybe been critical, like there's only three thousand people in the country, but there are three thousand people in the country. And I've been fortunate to meet one hundred and some of them already.

Dustin Kaehr

Right. And that there that there's probably more than ever ways and venues to connect that weren't available to your father, to your grandfather. Yeah. Not a word. It's a sport. We all know there were no Facebook groups.

- Dustin Kaehr

You know, back in back there. And now with technology, we have all of that available to us. Right.

- Liesel Mertes

Facebook bringing you more than election news and baby photos. Yeah. Connection that matters.

MUSICAL TRANSITION

Here are a few key takeaways from my conversation with Dustin

• If you are struggling with a rare or incurable disease, finding community is important.Dustin talked about how meaningful it is to be with people who get it, who are likewise fighting the same disease. As Dustin said, "You are rare, but you are not alone." Whether it is through Facebook groups or communities through your research hospital, finding your people matters.
• Having staggered, honest conversations with your children matters.Dustin shared about how he and his wife have navigated these conversations with their boys. Whether you come to the same conclusions or different ones, keeping lines of communication open is so important, especially with children.
• If you are a manager, give people the space that they need at work.Dustin talked about the importance of bosses that checked in with him, that allowed him flexibility when he needed to take time off or work from home. This sort of open-handed support builds trust and powerfully manifests a supportive culture at work.

OUTRO

Find out more about Dustin and his consulting work at thinkleadlive.com

And you can learn more about his book at www.dearboysbook.com

Wade Brown

While there are plenty of opportunities to be angry, we don't want to be angry. We don't. Joshua was a beautiful, beautiful young man. And Joshua is not suicide. Joshua is a 14-year-old who did an adult thing in a moment of weakness and we'll never know why. He's a kid that did an adult thing. He's not suicide. And so, you know, it's important for us to demonstrate to our kids. And I try to do it at work as well. We choose love and grace. We do.

INTRO This is the second Handle with Care episode where a father talks about the death of his teen by suicide. If you didn't get a chance to listen the first conversation, I would encourage you, after listening to this episode, to also listen to our last episode where Jason Seiden talks about his daughter Elle.

My guest today is Wade Brown. His full name is Edmund Wade Brown the 4th. His parents were convinced that he was going to be a girl and went to the hospital expecting a Jennifer. When a little boy arrived, they waited two days before naming him after his father.

Wade is the Vice President of Field Operations for GE, covering the Central United States.

Wade Brown

So diagnostic imaging, patient care you've covered has put ventilators and anesthesia machines on the front page. Well. And so, so all of the products that G.E. Healthcare makes and sells into our health care customers, my team supports.

Wade manages a large team and they have been especially busy and vital in the fight against COVID-19.

Wade Brown

I've always compared it to my big family. I've led large teams for the better part of 20 years now and there's so many similarities to that.

- Liesel Mertes

I could I can only read them. I only have four children, which is more than many, but less than you. And it is like it's like field marshalling. Sometimes it's just the logistics. I totalizing, let alone everybody's like emotional moment and the particular care that they need. And so, I hear you. But I'm sure that I only hear part of what you're lived experience has been like.

- Wade Brown

It's I always liken it to controlled chaos. You know, there's somebody ready to break loose at any given moment, and I've got it.

You heard the reference above to a large family. Wade is the father of nine children.

- Wade Brown

So, I have book-end girls. I have.

- Wade Brown

Jordan is is 30 and Josephine is nine. And so, seven boys in the middle. And so, we had Jordan and then and then Jacob. They came very quickly in our marriage. And and then Jonathan, our third child. So, we were boom, boom, boom. You know, still, you know, young, married, three kids and the J. Alliteration kicked in. So, we were Jordan and Jonathan. And then. And then, when Cynthia became pregnant for the fourth time, Jared was an eight.

- Wade Brown

So we. So we stayed on the J's. And so my kids are infamously known as the J kids.

And Wade is joining us today to talk about his son, Joshua, who took his own life a year and a half ago at the age of 14. Wade shares about the ripple effects of the loss, how his community came around him, and how he carries Joshua into his life in 2020.

- Wade Brown

I've I've got on my board here at home from Ernest, Ernest Hemingway. Right. Hard clear about what hurts. And so listen to these discussions. And I've been on stage in front of hundreds of people multiple times. I've been on Zoom call, you know, Skype and Zoom calls with literally thousands of people. So. It's good to talk about it. It's a story that needs to be shared and talked about. It's just a mission that I'll have the rest of my life in this club area.

- Wade Brown

Well, and, you know, kind of the heart of the centerpiece for our chat today is it's Joshua. And so, you know, we've got, you know, Joshua 1:9, you know, be strong and courageous as big as has been and will forever be, you know, an important passage for us and the people around us. And I've even got a I've got an adult kid now that's wearing it on his chest.

For those of you that are not familiar with Joshua 1:9, it is a verse from the Bible where God tells His people to be strong and courageous as they prepare to face a host of challenges and conflict moving into a new land.

Wade also loves the rainbow as a symbol of promise and a reminder to talk to kids about the impact of suicide. So much so that his wife has banned him.

- Wade Brown

I've been banned from Etsy, actually severe. I had to get permission before I can go on Etsy because I just I, I just couldn't get enough stained glass in. We've just got some beautiful stained glass pieces here. And one of them actually commissioned a lady in St. Louis. She's a retired mathematical engineer, just a brilliant, lovely person. And we connected through Etsy and then and they kind of became friends. And so she made a custom piece that I have here at my and my home office.

- Wade Brown

And it's just magnificent. It's beautiful. I could I could send you a picture after work.

- Liesel Mertes

I would love to see that work. I imagine or touched on this more in our conversation. But. You know, when you have a child die, there's such a profound absence, you know, that there's a there's a spiritual, emotional absence, but there's this very physical void. And to be able to have things in our physical realm that are are literally touchstones, whether that's, you know, something something to be able to look at or touch.

- Liesel Mertes

It's is it's I find it to me.

- Liesel Mertes

And for many, that physical grounding in the reality of life, they haven't just vanished and become this ethereal, like nothingness like this. There's a person who had weight and space in our family. And so I I hear how that's important. And I'm sure I'm sure the artisans of Etsy are missing you. I have my own rabbit holes with stuff like that.

It is a tumultuous time to be a small business owner or entrepreneur. The market is full of uncertainty and it feels like the rules of engagement are constantly changing. One constant is the need for talented people. And one of the best ways to attract and recruit talent is through an attractive benefits package. FullStack PEO is here to help. Let the talented crew at FullStack navigate the complex world of employee benefits so that you can focus on surviving and thriving during COVID-19.

The uncertainty of our current moment is also causing so much stress and overwhelm for your people. Compassion fatigue is gnawing at the edges, there are health concerns and the stress of young children at home. Handle with Care Consulting is here to equip your people to give and receive care when it matters most. Our customized consulting packages empower your team with actionable strategies to bring put empathy to work.

MUSICAL TRANSITION

As Wade and I began our conversation, he reflected on how the loss and tragedy of Joshua has uniquely equipped him to lead his team during the COVID crisis.

- Wade Brown

And this has been part of my journey the last year and a half of my life. Liesel is is there for for me personally and with my team that's been with me through the Joshua experience.

- Wade Brown

It almost served as a bit of a preparatory experience because the connections that we have, the culture that that I've talked about it and written about it, the culture, family, the culture of caring is real in my space. And and so when COVID turned on and we had to go to, you know, to our daily stand up call first thing every morning, you know, with 100 people on the phone trying to take on the spot decisions because there were so many unknowns.

- Wade Brown

I think we were better able to administer our way, especially through those early days where there was so much trepidation because of the connections across our team and my connection personally with the people that I get the privilege leading because of the Joshua experience. Now, would we have done well, having not had that? I'm sure we would have. But it was a it was unique for us there like that. We didn't have to. We have to warm up for it.

- Wade Brown

We were already warm, like we were more ready to go. And there was a higher level of trust because of that, because it's not just what I found. The backside of the you know, the health care phenomenon isn't just that you have to go into those places. It's dead. You have to go home and be around your family. So that's actually where most of the fear and concern came from. And so, you know, for us to be able to have, you know, I believe I believe a higher level of trust and caring for each other helped helped us do better and be better and be quicker in our response.

- Wade Brown

I believe that. And I've seen other teams perform through this. And so I would say that we we stack pretty well.

- Wade Brown

And you know, just how we how we moved through an incredibly an incredibly volatile and it's still volatile still. But, you know, ninety hundred days ago, there were infinitely more questions than there were answers.

- Liesel Mertes

Right. Well, and what would I hear in that? And I want to dig more in a bit into the specificity of it. But the sense that, you know, through your own disruptive life event you had you had led with the particular vulnerability of. Needing care and receiving care from your team and that that lived experience. I mean, there can still be in organizations are given teams or with particular managers.

- Liesel Mertes

This sense of a very clear distinction like this is your work life. And this is your home life. And the two do not intersect like you. You just manage your stuff and then you show up and perform.

- Liesel Mertes

And the realization for your team and for you of, you know, I'm a holistic person and I'm bringing this really hard thing to work. And I I need and appreciate your support. And I want to give that to you. If you're going through something hard, it seems like it. It set the stage for being able to receive the current context in like a healthier much more giving way.

- Wade Brown

Yeah, for sure. There's no doubt about it. I had I listened into your last posted podcast with Fred Brown and.

As a sidenote, the interview with Fred Brown is tremendous. Fred talks about the challenge of carrying grief and loss as a Black man and CEO. If you haven't had a chance to listen, make it the next in your queue.

- Wade Brown

Yes. And I heard him mention about, you know, for years being being the caregiver, not the receiver of care and raising, of course, that that that's me for sure. I mean, I'm a I'm a I'm a dad of a big family love. That's my greatest achievement. And it always will be. I've led big teams for two decades and I've been a people leader for most of the 32 years I've been in my career. I'm I'm a coach.

- Wade Brown

I'm a caregiver. I don't receive care. And you know it. There were a couple of things that happened through the grieving experience with Joshua that just had a 100 percent transference into into my workspace. And a couple of those things were profound. And one of them was my first opportunity. This was May of last year. So this was within four months of Joshua's death. I had the opportunity go on stage and address the extended services leadership team for each four GE health care here in the United States and Canada.

- Wade Brown

So that's, that's my extended work family. So that was five hundred plus people. And and I did that early on in the two and half days we were there. So the two days that followed Liesel were just were transformative for me. And that what I discovered, what came back to me in the 48 hours that after I walked off stage until it was time to get everybody to leave and go home, I had four dozen, you know, up close, some between 40 and 50 people.

- Wade Brown

I wasn't counting. I just know that it was four dozen ish. People pulled me aside and tell me their very personal stories. And it wasn't ready for it. Quite frankly, it overwhelming. I found myself back in my room crying a couple of times and calling calling Cynthia going, oh, my gosh, my God. I didn't realize what was what I was what was going to come back to me when I did this. Getting on stage was hard enough.

- Wade Brown

But then the stories that came back to me were were deep. They were profound. They were heartbreaking. And. But what I learned from that and what I've talked about is everybody has their Joshua. And I think there were people want to talk and they want to share and they want to feel supported and they want to give support. Just just an incredible experience.

- Wade Brown

And with respect to receiving care, it really wasn't until late last year. It was in the fall for sure, before November ish. My family had engaged with Riley Hope and Healing for counseling and support. Are you familiar with Riley?

- Liesel Mertes

Yes.

- Wade Brown

And so so Mike, Cynthia and the younger kids were in that, and it was with success. And I had just never been inclined to seek that kind of help or support. And so I did. And it was an and it was also with the encouragement of cup of a couple of people that are closest to me at work because they could see it, they could feel for me just the ups and downs.

- Wade Brown

And because I had for the you know, for the seven, eight, nine months prior I had carried my family, I had carried my community, the homeschool kids that I had mentioned before, like, we have a tremendous a very large circle of friends and and support.

- Wade Brown

And so I was doing all the talking and I was trying to provide that that comfort and their therapeutic support for everyone around me, but none for myself. No, it was incredible. Just that it was it it still to this day, I mean, I have a whiteboard and a notebook, you know, just full of notes and thoughts and and and so where I'm going with that ultimately is what I've tried to do then, especially through COVID. But it started late last year and it's and then I continued it into the new year. And then, of course, COVID gave it a whole kind of change.

- Wade Brown

The color of the mosaic is weave. I and my team host mental health, stress, anxiety. We do awareness calls. We bring guest speakers on. And the first thing we did when COVID four started was about managing stress and anxiety at home. It wasn't about were. It was about your personal space. And we had a wonderful doctor come on in. And what happened on the other side of that, Liesel, was was amazing because the distribution list on the Skype broadcast, it went out to, I think, about six hundred people. Then we expanded up to about 850 people. And then when we got the count afterwards, we had like twenty five hundred people on it now.

- Wade Brown

But there is a multiplier that comes of that, because I got numerous notes from people that were on that listen to the broadcast and participated in the Q&A that they didn't do it just themselves because everybody's working from home.

- Wade Brown

They had brought their high school kids, their college kids, their their partners or spouses. There were families listening to this. So you know that now you're like four to five thousand people. And so but that's it's important for us to put it out there and and have those expressions.

- Wade Brown

Everybody has their Joshua. And I think that that's not the case. I think is I don't think it's genuine. I think it's naive. And I actually think it's a bit dangerous for the health of the organization because you're just ignoring your comment before we're all holistic people.

- Wade Brown

You can't you can't cleanly segregate work from your home life. You can't. And so and so why would you why would you try and I think in you know, early in my career, I wouldn't have been so open to that.

- Wade Brown

But certainly the last 15 years and now with with what's happened with Joshua, I'm all in. I just don't want a complete belief system that has matured and expanded because of this.

- Liesel Mertes

Well, and man, absolutely. I resonate with that deeply as it relates to my work of building the capacity for support within teams. And just the like you said, there's there's a cost to ignoring it.

- Liesel Mertes

There is is not a zero sum game. There's a cost to the stability of your people. You know, there's only there's only so long that you can hold it all together before it starts coming out in your ability to play well with others or complete tasks or in your physical health. You know that the ties to, you know, unreconciled stress and how it can come out in the winds, the body keeps the score.

- Wade Brown

Yeah, really true.

- Liesel Mertes

I, I want to I want to back up just a little bit because, you know, even the statement everyone has their Joshua, tell me a little bit about Joshua. Where does he fall in your birth order? And we'll go from there.

- Wade Brown

Yeah, sure. Well, he was just a beautiful young man. So he's number seven. He's my my sixth son. My seventh. My seventh child. And just a beautiful, beautiful young man. If you saw his image on unlink and it just, you know, platinum blond hair, blue eyes, six foot two at 14 years old. So a couple of my kids have been early bloomers. Joshua certainly was more than those, you know, six to at 14 and just absolutely strong as a horse.

- Wade Brown

And any head that his hair, when he teased it up, was six five maybe.

- Wade Brown

That boy loved his hair.

- Wade Brown

But he just just a fantastic kid. We saw I mean, he was in two different youth groups, played on two different basketball teams. Was just, you know, we never know. No trouble at all.

- Wade Brown

And, you know, with a family my size and having been a dad for 30 years, I've had a lot of, you know, a lot of conversations with teenagers and in college age kids. And, gosh, even after college, it's still got stuff to talk about. And Joshua just was we just not it wasn't it wasn't like that with him.

- Wade Brown

He was just just so good and pure. A great friend. And because of because of his his size at a young age was always girls following him because he was just, you know, bigger, stronger than the other kids that were in his class.

- Wade Brown

And so just a beautiful, beautiful young man and. Yeah. Yeah.

- Liesel Mertes

I love that. Right. Tell me a little bit about the events that led to his death.

- Wade Brown

Yeah. So we were so so with respect to, you know, him taking his life, committing suicide, were there were there was nothing. We had no indicators. It done his homework and clean the kitchen. Cynthia was at a book club meeting with some of her other friends. And so he was here with my two younger kids. He had done his homework, cleaned the kitchen, made sure the kids were safe, and then came down into my office and wrote us a note on my whiteboard.

- Wade Brown

And then and then he he took his life.

- Wade Brown

So I was in Chicago on one business, on the perfect I'm a road warrior. I've traveled most of my 32 years. My family's very accustomed to that. And so I was we were finished with our meeting. We'd gotten back to the hotel after dinner and there were three or four of us sitting, having a glass of wine and and just just talking. And we were just hanging out a bit before before going back to our rooms.

- Wade Brown

And I got the 911 text message from from Cynthia. And so I called. She told me the news. I had gone into a back hallway to talk to her. And I came back out and told my colleagues that I had to go. And, of course, they could tell that something was wrong. So I share with them what had happened. And, of course, we all embraced. Cried a bit, and then, of course, they wanted to drive me back to Indianapolis like, no.

- Wade Brown

I got this. And so I drove back to Indy, got home in the middle of the night. You know, of course, all my mom was here and all of the, you know, the the emergency response, the first responders, all of that was was done. Joshua wasn't here any longer. And so it was, you know, just sitting here with my, you know, my family just trying to understand, you know, what had happened.

- Wade Brown

And and, you know, so it's it's really it's difficult to explain, you know, really. But what I would you know what I've I've tried to the word that just I think. Describes best. What that felt like, it was just the suddenness. It was it just in a in an instant. In an instant. You know, you go from a book, you go to a before and after, like there's a whole line, a line that strong there and it's still in it.

- Wade Brown

It's still there. And it's never going to go away. And so it's not moving on from it. It's it's moving on with it, as has has been infamously said. And I I believe that.

- Wade Brown

And so, you know, the the if so, then there's and it's kind of the multiple frontiers that you have to manage. It's of course I have a job, I have a team. I support account of me. What's going to happen there?

- Wade Brown

I've got a family that I've got. I've got to get through this. What's going to happen there? We've got a community. You know, Josh was was was very well known and and and very much loved by a lot of people. And so, you know, how do you kind of how do you patch that together and and push through? So, you know, it was it's. The suddenness and grief is a nasty announced, a nasty monster.

- Wade Brown

You know, it doesn't. It doesn't no place. It certainly has a purpose.

- Liesel Mertes

You talk about the unpredictability of grief. Which absolutely I am. I find that so so you're wearing multiple different hats. Your your hat as a spouse, as, you know, a manager, also as a parent. I'm struck that there's something pretty profound about walking with your children through their own grief and their different responses. What was that asking of you? Even even in how it set you up for in November, realizing, oh, I also need counselling?

- Wade Brown

Well, it's I think, you know, one of the things that we tried to recognize Cynthia and I get when you're just you're. In the immediacy of the moment is the grief is different for everyone. And and we we wanted to be very, very careful with our kids not to try to superimpose what we were feeling on them and and vice versa. And so especially in the you know, the I would say through much of last year. So it's not it's not the same today.

- Wade Brown

Much more so, you know, in that and in our first year, so to speak, because you have so many firsts. You know, Joe Joshua's birthday, you know, those those things you have you kind of kind of step through. We've tried we've tried to with our kids like it's it's OK, it's OK to talk. It's OK to express the Riley open healing counselling and and therapy, especially for my two younger kids, has been extraordinary.

- Wade Brown

I will always be indebted to those folks. But really, it's that it's OK to talk about especially having so many boys in my family, not necessarily a boy versus girl thing, because my daughter, my oldest daughter is much like me. She's she tends to be, you know, keep, you know, keep those things inside a bit like I do. So what I tried to do for my family, demonstrably up to and including, you know, seeking some some help myself late last year was to was to put reflections out there and to be vulnerable and to talk about it and to cry.

- Wade Brown

And so that they would feel that it was that it was OK. And I've done the same thing at work, too, with respect to grief. And so, you know, we talk about the interlaces between work and home have taken that same approach with the folks that are my immediate senior staff and the people that I'm closest to and that it's OK to talk about it. It's OK to cry. It's OK to recognize when it's there, when it's got you how to see it, and then kind of how to work your way through that grief.

- Wade Brown

So there's a bit of a long answer, I hope. I hope that helps that we still we still ongoing with my kids, you know. I guess it's not with the same frequency through much of 2019, but, you know, daily reflections, daily reminders of hope and of grace and of love, so that we just felt that it was very important for my kids to see from me. And Cynthia would agree as well that while there are plenty of opportunities to be angry, we don't want to be angry.

- Wade Brown

We don't. Joshua was a beautiful, beautiful young man. And Joshua is not suicide. Joshua is a 14 year old who did an adult thing in a moment of weakness and we'll never know why. He's a kid that did an adult thing. He's not suicide. And so, you know, it's important for us to demonstrate to our kids. And I try to do it at work as well. We choose love and grace. We do. And and to the greatest extent that we can model that and encourage others to see and feel the same thing.

- Wade Brown

I think that's a that's a purpose and a mission that I'll have. For the rest of my life, I've got I've got another expression here on my whiteboard and I'm sure this one and messages through the COVID period at work just because of the high level of stress and anxiety. And it says if you're going through hell, keep going. When you're reduced to nothing but soul, you radiate an extraordinary power. And that power is called grace. So let it shine.

- Wade Brown

And and I believe that. I believe that. So that was long answer to your question. So there you go. This is that you could talk about for a very long time because you're not a single way to express it.

- Wade Brown

You know, it's it's because it it it's it changes over time. And the intensity is never the same. You know, grief is a grief is an incredible an incredible experience. I don't know how else to say.

- Liesel Mertes

I am. I love that quote on the whiteboard. I can imagine some people as they think about their own journey with grief. I'm thinking, man, I. I feel completely reduced. And what was revealed was not Grace. It was some pretty ugly stuff. Did you feel. Have you felt those moments as well? I'm utterly reduced and I'm not finding myself as a graceful person right now?

- Wade Brown

For sure. Hundred percent. Absolutely. Absolutely. And in my I mentioned Tina before, she's she's incredible. And she has been she's been a life partner for. For Cynthia and I. She she watches me like a hawk. And she can tell if I need a break. If I'm if I am. And distant as she's she's dialed in and she's tuned in to me for sure. And she'll tell Cynthia that those two probably talked to each other more than they talk to me.

- Wade Brown

So and I'm lucky and fortunate and blessed to have that.

- Liesel Mertes

Tell me tell me a little bit more about that, because it touches on these very important aspects, I think, of self-awareness and self care that in good times can be less on the forefront. What are some of the things that are signposts or signals to you of like, oh, oh, man, I'm struggling, I'm on the brink of being overwhelmed? What are some of the things that give either Tina or you pause?

- Wade Brown

Well, you know, Liesel, I have I've said it before.

- Wade Brown

I have that I just have the distinct privilege of leading women and men that do extraordinary things within within our health care industry. And my job. Is to make sure that they can do that safely, that they can do that to the best of their ability so that they are productive for themselves, for our company and for the customers that we support. And so I take very, very seriously the fact that the things that I do and say have a direct effect on others and their ability to be happy in their career and take and to provide for their families and actually meditate and pray on that.

- Wade Brown

It would not be truthful to say every day. But darn near every day of my life. It's part of my my spiritual journey.

- Wade Brown

And I take it very, very seriously.

- Wade Brown

And so I do a lot of one on ones. I have a big team and a big kind of stakeholder network that I have to stay in touch with. So I like last week, for example, coming back from our vacation in Charleston. Now, I probably I I had three dozen one on one calls. And so when I on the phone with a director or a senior director or a supervisor or could be a customer, but it's usually, gee folks, I have to be my best.

- Wade Brown

They're there. It's almost like an athlete on the field. You know, it's like you. They deserve my very best. And so what I've learned to recognize is that when it's not there, it's just not there. And and so what Tina and I talk about and what she helps me keep a pulse on is if I'm just down and I'm not going to be able to give that that next person my best, it's better to pause. It's better to just wait.

- Wade Brown

And the folks around me know that. And they're comfortable with it. Know, no, there's not been any repercussions from that whatsoever. In fact, I think there's it's been the opposite.

- Wade Brown

It's just that ability to say, you know what, I'm not OK today and I need to I need to do something different or I need to take a break or I need to get out of my home office, especially during this COVID stuff.

- Wade Brown

So that's you know, that's probably the the best kind of example I can share is I can I've I've just I can recognize when those feelings are there. And through counselling have also come to understand that you can't just shove them aside because they don't go away. And they're not like fine wine that you get, they will get better.

- Liesel Mertes

So they don't get better with age.

- Wade Brown

They don't age well.

- Liesel Mertes

Well, I'm struck that it's a choice towards brave vulnerability and being able to ask for that space. I'm struck that, especially for classically high performers, that that can be wrapped up in some feelings of self judgement or shame of like I shouldn't need to ask for this. I'm used to being able to perform easily and consistently. Did you encounter some of those initial feelings of shame or I should just be able to push through this? And if you did, how did you work through some of those feelings?

- Wade Brown

We thought so, yes. And it still happens today. I mean, it's not something that you just turn off. It's just something that you kind of experientially you learn to recognize and work through. And and.

- Wade Brown

Again, through, you know, the chats that I've had with Elizabeth, it that really hope and healing, it's important to, it's important to do that and and allow it to have its moments so that you can address it and not try to just stick it in your back pocket. But shame, I don't know that shame might be a bit of a strong way to to say it. But I as I said before, I take I take my job very, very seriously, as we all do.

- Wade Brown

And that doesn't necessarily make me special or unique.

- Wade Brown

But I know the things that I do and say have a direct effect on others. And so I and I want to give them my best. And if I can't do it in that moment, it's OK to wait for a moment when I can.

- Wade Brown

So but I still it still comes up for sure. Like even, you know, you know, going through second quarter clothes and what is arguably the most difficult financial operational quarter I've ever had to lead a team through, you know, did trying to get to the finish line and, you know. You're like, OK. I have no choice. I have to push through because now people are depending on this financially. Right. And so you have to muscle your way through some of those things.

- Wade Brown

It's not an absolute either or if they're right.

- Wade Brown

Like they're still going to be those moments. You know what? Yeah. Just gotta go. Just get to bed. Just go. But that's not all the time by any means.

- Wade Brown

And and I'm also a year and a half removed from Joshua's death. So it's not it's not like it's not like it was, you know, a year ago this time it's you know, it's it's changed. It's adapted. It's evolving. So and so by and so is my support network.

- Liesel Mertes

You know, frankly, you've you've touched on some of the things that are at work, whether that was resonance with people that came up to you after speaking or the support that Tina and your mom provided over the phone. What were other things that were especially meaningful to you in the aftermath of Joshua's death that you said, well, this like this meant something deeply to me. I'm so glad that people moved towards me in this way.

- Wade Brown

Yeah, that's so. This is an easy one. And it was Joshua's visitation and his funeral. And we had we estimated between nine hundred and a thousand people. Wow. Came for Joshua's visitation.

- Wade Brown

And so we were at the church. And of course, there's lots of people there. And it's it's a significant emotional event. And I knew I was going to have some visitors from from GE and from Roche because Roche is local. And, of course, you know, I've got the folks that I work with actually as well. What I wasn't expecting or prepared for was that it would be like a hundred from all over. I mean, people flew in from all over the United States to be there with.

- Wade Brown

With me and my family, and when I'm in this greeting line, you know, it's, again, this sudden it's like a week before that. None of this existed. And so now you're thrust into this and you're at the church and it's it's your choice and it's for your son. It's for your child.

The company headquarters are in Milwaukee and a group of his colleagues chartered a bus to come down to the funeral. And they arrived wearing team fleeces that Wade had passed out earlier at the team retreat. This visual display of solidarity was incredibly powerful.

- Wade Brown

Oh they were filing in through the door in those blue pullovers and it was, it was surreal. I, I, I've never, I've never felt moved that way. Really in my life. And it was it was extraordinary. And then soon after I started recognizing Roche faces as well from my team that I led while I was at Roche Diagnostics. Obviously, some from here from Indianapolis, but also people that had traveled in from from all over the country.

- Wade Brown

And it was incredible, really. It was incredible. And then the next day at his funeral. Not all, but many of those same faces were still there, especially from, you know, from my GE crew. And so just to see them when I was giving Joshua's eulogy served as an incredible source of strength. It didn't make me sad. It actually it actually was fortifying, if I could say it.

- Wade Brown

And it helped me deliver a really, really difficult message. And which. And the promise for Joshua that pulled forward that we pulled forward from that eulogy. My team has helped. Kerry,

- Wade Brown

The second one, there's a bit of a long answer to your question, the second one we so already touched on before and there's been lots of private moments. There's there's there there's too many. And there's been so many private moments. Just calls, text messages. I get I get pictures of rainbows every day of my life from all over the world, literally.

- Wade Brown

And it's because of the promise for Joshua. But the when I spoke on stage last May. 2019. And what happened in the two days that followed. Liesel, as I shared before, I, I just never experienced anything like that in my life in it and it's in it. It had two clear sides to it. It was the one side just being oh my gosh, that was hard. And I wasn't, I wasn't ready. I wasn't mentally or emotionally prepared for what came to me in a couple of days, even beyond that, beyond just those two days.

- Wade Brown

But certainly in those 48 hours, because you're held hostage at a meeting resort, you know, you're you're in a hostage situation.

- Liesel Mertes

So you may see. But still a hostage situation.

- Wade Brown

It you're right. So you're on a compound, you know, with with 500 plus people. So there's no place to hide. But the but the just this real at the other side of it was just this realization that and everybody's got it. And people want to talk about it. And to the extent that we can foster an environment where people can do that and feel comfortable. I think it's additive to, you know, to everything that we do.

- Wade Brown

And we represent, you know, as a team and as a company and and as friends. Frankly, I work with people that I would do anything for. And I would have I would have held that belief before the Joshua experience. But certainly now I've just the personal and public, private and public support that I've received from people that I work with. And this has been has been extraordinary.

- Liesel Mertes

I am. I always like to ask as well, because we learn both from people's positive experiences but also from the negative ones. Lots of times when people are people get uncomfortable as a default, sometimes with other people's pain, and they find themselves saying or doing things that kind of missed the mark. As you think back on a town like a lot of positive experiences, what are those that you would say, oh, man, like this? This was just bad. I would I would counsel people. Don't ever do this. This really missed the mark with me.

- Wade Brown

I up I got some of those. I call it. I'm sorry. That used to be well but it's but it's just part of the journey.

- Wade Brown

I mean, really. And and so it's not all rainbows and butterflies. There's there's also been some in, you know, some intensely inappropriate moments. And so I've I've definitely had a couple of those. I think. You know, soon after Joshua died, this was within. In fact, it was live. I did a I did it. I took my team into the woods again. So you'll see a trend here. Liesel, I like to I like to do meetings that are different.

- Wade Brown

And so I love getting off the grid because then you can just be you can be yourself better. We had done that. My my boss, Rob, had actually encouraged me to cancel the meeting and just can just wait. I strongly disagreed. I needed to be with my people. And so Joshua died January 30th. And so this was in in late March. So this was just a couple months later. And and I needed to see my people.

- Wade Brown

I needed to be able to tell them, one, that I was OK. And two, that I loved them for everything that they had done for Cynthia and myself and our kids. But that first night, there were a handful of us that were having an evening libation. And somebody looked at me and said, "Wow, was Joshua bipolar?" And I, I, I was it took my breath away. It just the timing. It was just it was it was it was.

- Wade Brown

Wow. I can't believe you just asked me that question about my about my dead child. And that one sticks with me. And so I that, as you can tell, that when it came came out pretty quickly. Yeah. There's a there's a I call it fresh eyes.

- Wade Brown

So when you get when you see them

- Liesel Mertes

Just for a second, because I think it's I want to unpack that because I think it's a there's perhaps something profound that did that didn't feel particularly hurtful because it felt detached or because it felt judgmental or not hitting you? Like as you think about why that comment hit you the way it did. Like what? What is at the root of some of how I just felt so jarring?

- Wade Brown

I think that the words you use judgmental is probably appropriate.

- Wade Brown

It just it felt like we had we had and we still to this day, we do. That's not what we believe to be the case. Joshua, there were no no expressions or symptoms or manifestations of a mental the mental health issue or issues. And certainly had had we had never sought any counseling or help for any symptoms with Joshua because there weren't any. And so but it wasn't just that that I was asked that question. It was inter-group price.

- Wade Brown

And it was just inappropriate. And I. And it it it lacked empathy. Yeah. It just it was completely void of any empathy. And just a lack of self-awareness. And it hurt.

- Liesel Mertes

Yeah. Yes. Thank you. Thank you for unpacking that more. I hear a certain speculative nature to it. Just maybe somebody their own curiosity more than attention to you or certainly attention to the wider group setting as being particularly wounding.

- Wade Brown

Yeah. Especially, you know, 60 ish days afterwards. And just just shouldn't have done it.

- Wade Brown

There is there's an expression that Cynthia and I use and it's I deemed it fresh eyes. And what I mean by that is when you encounter somebody who doesn't know their eyes. And so there's a there's a a paradigm shift that happens once you share that that's, you know, that that that's happened in your life, that you've got a child. It's. That's especially teenager has committed suicide. 14 year old. There's a paradigm shift that happens in that moment. And you can see there the expression in their eyes change. And so I. I look for that. And when I see it, I try. What I've learned is because I don't think in. Nobody has poor intentions. They just don't know how to react because it's they're hit with that moment of suddenness as well. It's a sad story.

- Wade Brown

It's shocking. And so I try to, you know, immediately provide some reassurance, you know, that it's OK. It's OK to talk about it. Just to to help. You know, help settle them down, because it can be very. It can be very unsettling. Right?

- Liesel Mertes

Yeah, it will. And I. I hear in that it's it is a particular it is a particular burden. That can happen in its own way, because if you're a perceptive person, you know that it throws the listener. And then especially in those early days, it can be its own burden of having to shepherd their response, like, oh, now I've got to like, strangely kind of care for you and let you know that I am okay enough, then it's OK here. And it's it's particular nuanced. What can often happen in social dynamics.

- Wade Brown

Well, it is. And it kind of goes back to your your question before about like so what's what's not being good or being uncomfortable. Well that's, that's, that's into this part of the equation because you beat it.

- Wade Brown

So I of course, I always feel compelled to reassure them that, you know, it's OK to talk about what we're doing, OK? And if they if they give some offer of condolences or say they're sorry, then of course, acknowledge that and thank them. Thank them for that. What what can sometimes follow, though, is it it's not quite as as biting as you know, was Joshua bipolar. But then there's this assumption. That because we've experienced this, that now I have this definitive tie to mental health.

- Wade Brown

I'm not sure that I do or I don't.

- Wade Brown

And so because I've been asked to speak specifically about mental health in my research. And so my response is, well, I'm not sure you like what. And under what context and what what would you like me to talk about? Because I am not a therapist. I'm not a psychologist. I'm not here to diagnose anybody. I'm just a witness for something that happened in my life that I think provides just innumerable teachable moments.

- Wade Brown

And I love my son in the best way that I can honor my son and carry him forward is to share the story in such a way that it helps others. It's not that it's not to get pity. It's not to get sympathy. It's because if you hear my story and then you have a conversation with a teenager that helped you avoid what I've gone through, then that's a victory.

- Liesel Mertes

If you were speaking to a listener who is walking with someone who has recently had a child commit suicide, what particular words would you offer them as to how to come alongside that person?

- Wade Brown

Well. That's a tough one we saw and I've actually. You know, fortunately, unfortunately, I've had those experiences, teenage suicide is is not a one off event.

- Wade Brown

Yeah, it's. It's you said it's a it's a terrible travesty within within our world today and in in our culture and not unique to the U.S. But certainly that's what we feel here. And I I get to have these conversations. And so, you know, I, I try to. Hit and it's. I've had it with a couple of people that I work with, actually. And then, of course, you know, there's been some community touches there, but it's really it's it's.

- Wade Brown

I wouldn't expect anybody to try to, you know, really fully understand or or try to heal me. It's really just to be supportive and to listen and and that it's OK to talk about and that, you know, there's nothing. There's there's a suicide, you know, just has this this, you know, this nasty kind of. Or about it that it's that it's not supposed to be talked about, that it's it's a private thing. I'm struggling for the right word.

- Wade Brown

It's like a.. What would you call. It's like the. It's like it's taboo or anything. Yeah. Like you're not supposed to talk about it, it's like this secret thing and it it only happens in the most tragic of situations and. And how did you not know what happened? Oh, it was going to happen. Did you see signs? I mean, I ask myself that every single day of my life and I will the rest my life.

- Wade Brown

But it doesn't have to be that way that it's OK to talk about it and it's OK to hold someone's hand and let them cry and to empathize with them and where they are and be there to support them.

- Wade Brown

Yeah, I guess I want to answer more specifically for so I guess maybe I'm just struggling to come up.

- Liesel Mertes

That's a good answer. I appreciate those insights.

- Wade Brown

It's hard. I mean, it real, it's it's one of the it's I had a quote, a colleague that passed away last week from a long, long battle with pancreatic cancer. And I've known I knew Jeff for. Going back to my first time at GE., so more than 20 years and the guy guy's a warrior. But. In an ad in that not that this doesn't make it. I'm not trying to minimize it at all.

- Wade Brown

But that's not what I'm doing. But it was. Gonna happen soon. Is it like that? It's that, right? It's just the suddenness of it. It's so different. It's even something I've talked about this like even if if you know someone who's lost a loved one in a car crash, it again, the suddenness. But it was an accident. It was a it's just it's just different. So I try to just. There's a.

- Wade Brown

There's just a notion around suicide or or knowing someone that took their own life. I feel it's it's just it just need to be there. There's there was another notion that I wanted to share to. And if I can't, maybe. Now does it. Yeah.

- Wade Brown

It kind of goes back to the things that I've learned and what's kind of the on the good side of the ledger and the difficult side of the ledger. But what I've recognized is it's not really it's not really a difficulty.

- Wade Brown

It's just a recognition that people are different. And their response and their approach to me is going to be different depending on who they are. And Liz, share this with me at Riley. And it's, there are sprinter's and there's marathoners. The sprinters are going to be there in moments and they're gonna love you and they're going to support you and they're going to embrace you and they will do anything for you. But then they move on. Right. But they'll come back.

- Wade Brown

It's not that they're disingenuous. It's just their approach is, hey, I got you. I've got you right now. I'm talking to you right now. And I take care of you right now. But then the next day they're off. Then they're right. The marathoners like Tina, my my admin partner, she's a marathoner. She's with me every single day. Same level of intensity. And neither one is right or wrong. They're just different.

- Wade Brown

And so I've offered that as well as I've had conversations where someone someone's at a loss in their family, especially with suicide, is that there's going to be people around you that are going to be there for you in the moment. But then they move on and then there's going to be people who are just going to be checking on you every single day. And neither one is right or wrong. They're just they're just different. So don't I would because what happened with me, the sprinter's, so to speak, to people who would check in, I like, wow, was that genuine or not?

- Wade Brown

Right now they don't want to talk about it.

- Wade Brown

They want to talk about work. They want to talk about you want to talk about football. I get what I've got confused by that. But at a more clear with experience that there is a distinct difference there. And neither one is is right or wrong. They're both they're both good, well intentioned. They're just different.

- Liesel Mertes

Yeah. They definitely both hear that and have experienced that and can even think in my own experience as like the person on the giving end, like, oh, I was a sprinter there and I was a marathoner there.

And it's it's a it's a good lens to be able to look through. Yeah.

- Liesel Mertes

You mentioned at the top of our conversation that the verse in Joshua one nine and Be Strong and Courageous was an anchoring sentiment for you.

- Liesel Mertes

Tell me how you are, how that is continuing to influence you here in July of 2020?

- Wade Brown

Well, as I've said and I've written grief Ben's time. It's like it doesn't no time. It doesn't no place. And so we're we're gonna forever be on a grief journey. And so in those moments where you need for me, if I just need a booster shot, it's a go-to. It's my son's name. It's yeah. It's it. It's an incredible verse in and of itself and the depth and the meaning and the context. And so it's a it's a go-to, Liesel.

- Wade Brown

And it's that way for all of my family. I even have it in my phone a little. Auto type I put in JVB, Joshua Thomas Brown and Joshua, one nine with the Rainbow spits out, you know. So I use that. I use that. I use that frequently. And we have it, you know, obviously. Well, you wouldn't know. You haven't been here, but it's visible in our house in a in a multiple a multitude of ways.

- Wade Brown

And yet it's a go to. It's a safe it's a safe place for my family.

- Wade Brown

And in some of the people that I work with as well. Yeah.

- Liesel Mertes

Thank you for sharing that. Is there anything that it feels important to add that I have not asked you that you would like to? Reflect on.

- Wade Brown

Yeah. So I would I would love to. Just ask those that that listen and yourself to make that promise for Joshua. You know what I've. What I've learned and continue to learn. Is, you know, these. Teenage suicide is is real and and but I've also understand that it's difficult to talk about.

- Wade Brown

And so but I also know that it's necessary. And so I would my ask is, you know, for for anyone that is listening in to make sure that you're talking to the kids in your life and it doesn't just have to be your own children. We're, we're parents, we're teachers. we're coaches, we're neighbors, we're parishioners, we're all of these things around kids. And I think in and in today's world with COVID and now with and all of the things that we're seeing, you know, through the news and social media around the country, kids, it's so easy for kids to end up feeling alone and isolated and trying to find happiness in a screen, whether it's their phone or or otherwise.

- Wade Brown

And parents just yet, adults need to make sure that they're engaging with kids. And while it's difficult, it's necessary to talk about suicide and talk about hurting yourself. And so that that would be an ask. I would have. Liesel, is that is that folks make that promise do. And it's not a one and done. It's not. And if you see a rainbow no matter where. No. No matter how you use that as a reminder to have that had that conversation.

- Wade Brown

Make that promise for Joshua. I have I have accumulated very specific examples of those conversations having taken place where interventions occur. And so I just been prevented. Now, it doesn't mean that it's prevented forever. But in that moment, a suicide was was prevented. And it's because of job, because of Joshua's promise and telling kids it's okay to say something. If it's a friend, if it's a neighbor, if it's a classmate and something's wrong. It just takes three words, you know.

- Wade Brown

Dad. Something wrong, Mom? Something wrong? Yeah. Because I would rather lose a friend.

- Wade Brown

In the short term, then to lose a friend forever, and so that would be at least I just

- Wade Brown

I think it's you know, there's so much pressure on kids today. They've been taken out of schools and put at home. They, you know, for the longest time, couldn't even go see their friends, kids coming home from college campuses. It's not just teenagers. I mean, young adults as well, unemployment. And then, of course, all the things that we see in the news with the riots and in protest.

- Wade Brown

It weighs on kids in an extraordinary way. And we just can't be dismissive of it. The fact that sometimes those thoughts come in there and they have to be talked about.

- Liesel Mertes

Right. Thank you. That's a good and important word. I appreciate that.

- Wade Brown

Yeah, for sure.

MUSICAL TRANSITION

Here are three take-aways from my conversation with Wade

• Showing up matters.Go to the funeral, send the text, make the call. Even if you don't fully know what to do or say, your support matters. And this is a sort of point 1b guidance. When you show up, especially in the aftermath of someone committing suicide, try to be aware of appropriate boundaries on how and what you ask about. Wade spoke to the pain of having someone pry into whether or not Joshua is bipolar. And here is a bit of guidance. Before asking a question, take a moment to interrogate yourself. Are you asking about of your own curiosity or because you are actually trying to support the other person? You might have noticed in this episode that I did not ask about the details of how Joshua committed suicide. This was purposeful. If someone is not offering those details, I choose not to root around for specifics. Knowing the details of death does not have a material impact on how I can come alongside someone. More than anything, it serves my own curiosity and could feel prying and invasive to the person I am in conversation with. Take a moment to pause and reflect on why you are asking the question you are asking as you relate to a parent who has lost a child. And if you blunder your way into a mistake, go back and apologize.
• When it comes to comfort, Wade offered a metaphor that was powerful and nuanced.He talked about how there are marathoners and sprinters in the world of the grieving: there are people that will be able to come alongside you with great intensity and then seem to fade away and there are those that are there for the long-haul. It is with great maturity that Wade talks about how one is not better than the other and that recognizing people's different capacities allowed him to not just feel confused by those that seemed to be present than then fade away.
• Cultures of support are essential to helping your team thrive.Wade noted several times that everyone has their Joshua: everyone has a pain that they carry into their workplace. Through his loss, Wade began to cultivate a purposeful openness and culture of support in his team at GE…and he attributes this openness to significantly contributing to his team's ability to weather the challenges of COVID-19.

OUTRO

Resources for talking with your teen about suicide: https://www.psychologytoday.com/us/blog/psychoanalysis-unplugged/201807/speaking-your-teen-about-suicide

General information on teen suicide: https://www.mayoclinic.org/healthy-lifestyle/tween-and-teen-health/in-depth/teen-suicide/art-20044308

- Jason Seiden

That meant that I would gladly, if I could be the last person ever lose a child. I would I would take that on, if I could, to say it like that's how horrible it is that I don't ever want anybody else to feel it. And so other folks actually telling me that they're happy and that they're like, I think they would feel like I would feel worse, like rubbing it in.

- Jason Seiden

But actually, no, you know, that's it's the opposite. Like live your life. And tell me you've opened up your eyes and you're stepping into it and you're aware of the discomfort and you're aware about the hard choices you're making and you're doing it and you're celebrating those wins because they're so few and far between. Those were, the those were the best things.

INTRO

Jason Seiden is joining me today to talk about his daughter Elle. Elle was passionate about social justice causes, possessed of a sardonic humor. She was insightful and creative…and she is dead. She committed suicide after suffering from debilitating pain due to CRPS (complex regional pain syndrome) diagnosis and committed suicide at fifteen years old.

What does it mean to honor her legacy, to remember her in all her fullness? What does it mean as a father to live a life that encompasses such a profound loss but is not ultimately defined by that pain? Jason is articulate, reflective, and honest in this powerful conversation.

Before we begin, I'd like to thank our sponsors. First, we are sponsored by FullStack PEO. Providing full-service solutions for entrepreneurs and small business, FullStack manages the details so you can get back to doing what you do best, running your business. We are also sponsored by Handle with Care HR Solutions, with engaging, interactive training ans coaching sessions, we empower you to give meaningful support to your people as they go through disruptive life events.

Back to our conversation. First, as a sidenote, Jason was sitting outside during the first part of our conversation due to water damage and clean up crews in his house…and you might hear the birds singing under some of his thoughts.

In the months after my daughter, Mercy, died, someone reflected that there wasn't a word in the English language for a parent who has a child die. If your spouse dies, you are a widow. If your parent dies, you are an orphan. It is almost like the death of a child feels so against the nature of things that language itself can't encompass the loss.

Jason and I began our conversation talking about the difficulty of talking about the death of a child. Jason has founded and sold businesses, he is a gifted teacher, trainer and communicator. He recalled putting together a presentation on the fly.

So. Yeah. So I a 19 and a half minute clip. And I lost the teleprompter halfway through. And still in one take was done in less than 20 minutes.

- Jason Seiden

And then my partner at the time spent three hours trying to record the same 20 minute clip. Yep. This is hard. They said this is this is you know, I'm speaking from a much different place and I'm surprised at how difficult it is.

- Liesel Mertes

One person's journey is not anyone else's. But I remember specifically in that the aftermath of my daughter Mercy dying. It felt so in. I mean, there's so many things that make it feel de-centered. And but for me, like if there's anything that I traffic in and feel comfortable in the world, it's words like it's it's been able to communicate. Similarly, you know, I have my own stories of like know what? Like I feel adept in that realm.

- Liesel Mertes

And to come to a place where it's like I. I feel. It just feels different. And it felt it felt like it it have done a skill set, that it was like I'm normally so comfortable doing this.

- Liesel Mertes

How could even this feel altered? Well, you're aspects of that.

- Jason Seiden

And I know you well, I want to talk about the journey since losing Elle. But I think this is this is actually a great opener because it's it's true. I've journaled my entire life. I've written my entire life. I've written books. I have novel length stories that you'll never see the light of day written. And when when I wrote after her passing, I went back to read some of those journals. And some of them are very clear, like, this is a man who's in pain and who's articulate about it.

- Jason Seiden

And then there's other journal entries that are just noise. It's you read those you like. Oh, that's what it looks like. It's unintelligible. It's it's it's complete. It's just you. These are not sentences. These are not phrases. That makes sense. These are, this is raw stuff. And it's remarkable. And you kind of say to yourself, I'm good with words. I lived with a thesaurus, I'm specific with them. And if I'm struggling to find just even the basics, how is everybody else going to do?

- Jason Seiden

Right. You know, we don't we don't step into things that are hard. We tend to avoid things that are hard. And this is this is the hardest. So I think most people avoid grief when possible. Certainly the kind of grief that we've had. And that just means, they're completely unprepared. I was entirely unprepared for what happened. And trust me, if I could have avoided it, I would have. It's a hell of a journey to be to find yourself in particular for the first time.

- Jason Seiden

And then also you are surrounded by people who are equally as inarticulate to help.

- Liesel Mertes

And that's you know, that gets to also the profoundly isolating nature of grief because to to communicate where you are, like it's hard enough to just know, like, you feel like you're throwing words against a wall. But to be able to be understood by another person and that can just feel so daunting. Like, I don't even know how I'm feeling. And now I've got to find some words to have, you know, what I'm feeling.

- Liesel Mertes

And maybe it's just better to be alone. You know, it can be that retreat. And to just I don't even know.

- Jason Seiden

Yeah, well, I think there's a, I think there's a lot of truth to that. If I go back, I still default. I bridge that problem with something that I started defaulting to the week Elle passed. So I lost my daughter a year and a half ago. Coming up on two years, actually. And she, she died of suicide. She had been very sick prior to that. And she was in intense pain. She had a condition called CRPS. complex regional pain syndrome.

- Jason Seiden

And it's it's just it's nerve pain. And it's always on. It never stops. Nerve pain, like when the dentist hits the nerve in your tooth and you hit the ceiling. And she had it in both her legs treatments for years. Nothing was was helping. It was getting worse in certain circles. It's actually known as the suicide disease because it doesn't have the decency to kill you. But, yeah, it's it's close. You know, it's terminal.

- Jason Seiden

Who can live with that pain or that amount of time? So there's others, too. It sounds awful, but there's this one benefit that I got, which was despite having lost her to suicide. I don't I don't wonder. Could I have done more? Was there you write like that. Mental health is invisible. And it's real, but it's invisible and it's it's difficult as a human to accept things you don't see without wondering, could I have had some sort of control over that?

- Jason Seiden

And when it's physical and you can see it, it's a little bit easier to go. I couldn't control that. That was a thing. And it was a whole conversation we could have around mental health and how it needs to be in the same category. But for, for this, what I wanted to say was in those early days, the words that it was that were most easy for people to find were were those around how Elle died, what she died of, what her condition was prior.

- Jason Seiden

And I very quickly found myself initially trapped by that. It put me in the past. It put me you know, I had, had this journey of trying to help her and in all kinds of stuff was going on. You can imagine the complexity of the dynamics of dealing with, by the way, not only a crippling disease, but the most misdiagnosed disease out there. Right. It just was so I didn't want to be in that space. And it kind of struck me one day to a lot of thinking and metaphors.

- Jason Seiden

And I couldn't find the words myself, but I had this metaphor that sort of hit me. I'm talking about Elle in terms of CRPS would be like talking about MLK, Martin Luther King, in terms of gun rights, you know, or Anwar Sadat in terms of gun rights. It's like, yeah, these guys were assassinated. That's true. But they stood for something else. They lived for something else. What they lived for what they died of were totally different.

- Jason Seiden

To make MLK the poster child of gun rights would be to lose his legacy as a civil rights leader. What a shame. You know, you kind of you know, you'd have to kind of look at him and go, OK, technically true, but we're not going to use him for that. Like, we're not gonna make him. And I don't mean to use him. Right. But we're not going to. That's just not going to be his legacy.

- Jason Seiden

And with Elle, sorry, it was just it was the same thing. You know, she was a social warrior. She lived for stuff that she didn't die of. And so I found those words and I found it. Redirecting people really helped me control my narrative. And I still do that. I still use that today.

- Liesel Mertes

And tell me a little bit more about her, about some of the things that made her distinctly her and those causes. And particularly if, you know, she's she's a she's a fully fledged person behind the memory I'd love to hear more.

- Jason Seiden

Yeah, absolutely. And so very early on before she was born, I just had a feeling about Elle. And I've got I've got two daughters there and I've learned first on Elle. And it's just proven true with my other daughter as well, that as a parent, my job was just to get the stuff off the high shelf.

- Jason Seiden

You know, these kids coming up, they're fully formed. They're they're, a bit like flowers. Right? Do they have to for all. They have to blossom. But the flowers in there.

- Jason Seiden

Nothing I could do to change the raw material. And and, you know, so Elle was very special. She, she had a wicked sense of humor. Like, just even from a very, very like an impossibly young age. Understood sarcasm. I don't know if your grandparents on your side. I mean, she couldn't because she couldn't have been like more than a year old. And my grandparents would come and babysit her for more than once. She's understanding sarcasm. Yeah.

- Jason Seiden

I changed the tone of my voice. And she doesn't laugh. I flip the words around. She looked like she only laughs when it's a deadpan opposite, you know? The description is deadpan and opposite of what's true. She is following sarcasm. And it just, it was why she was always very tapped in. She she just you know, she came to this world with knowledge that you look at her and. There's no way that that knowledge came from five years of existence on this planet.

- Jason Seiden

It's just kind be living proof of something bigger.

- Jason Seiden

And she had a way of getting noticed. I'll tell you one story, which is just one of our segments. When the girls were maybe 7 years old, I took to sort of overnight count drops kids leave families rent cabins, and then have a dozen families in those camps all up in Sweetwater, skier No.12 things. They did a talent show and one girl after another is getting up and doing cartwheels and walkovers.

- Jason Seiden

And they're up there for ten seconds. Let me run off the stage, get going. Elle gets up there and start a cappella singing. Don't stop believing.

That's awesome.

- Jason Seiden

And the camp director stops her, runs up to the stage. Wait, wait, wait, stop, stop, stop, stop, stop. And I'll think something's. She turns on all the equipment plugs in her iPod, iPod, and let's Elle do the full five, five and a half minute song scene over Steve Perry. We're all downloading on our phones. The lighter apps are holding them up like a concert.

- Jason Seiden

And that was Elle, you know, just just being able to put your finger on the gestalt start of the moment and own it. And it is remarkable. And so you're kind of one of the reasons why I don't like thinking of her when she was sick was all of that power. It's not just that it went away. It never went away. So, you know, somebody with that much kind of cosmic ability gets sick, real sick. It's just it's so wrong and so far away from what she works for, what she stood for.

- Jason Seiden

She was always so zoned in. So you wanted this story. This is actually relevant to her legacy. So I do a lot of communications work at my house up with certain companies and also internal internal comms. Well, politics has a role in that. And there's an immediate negative connotation to politics that people have. And so to break it out, I would give people this moral dilemma. And, you know, I just let them sit with it where they realize, OK, I may not like politics, but they're real.

- Jason Seiden

I can't escape this question. Damned if I do or damned if I don't. It's one of those kinds of things. And I posed it to Elle. She's 10 years old. And Liesel, I'm telling you. Maybe two adults out of hundreds. I posed this question to and Elle heard the question and she said, well, you know, the only way to win is to not play you both these actions. Horrible. It's just a you're just choosing which value you want to violate and which value you want to maintain.

- Jason Seiden

That can't be true to yourself with either. You know, I think the outcomes once you're in that position. Like, oh, my God, she's 10. And she understood that. And here so, you know, so it's, it just it felt. It has always felt important to honor, you said, who she was. Things that made her unique.

- Liesel Mertes

Yeah. Those are some remarkable memories of who she was and, yeah, what she brought the color and dynamics.

- Liesel Mertes

I want to talk about, yeah, the journey after her death.

- Liesel Mertes

I'm, I'm struck that even as you are carrying her legacy, you, you are also shaped by who you needed to become in the midst of watching her be sick.

- Liesel Mertes

What were some of the things that you noted in yourself as a parent, at that time, that shaped you?

- Jason Seiden

The things that I noted as a person and same things and as a person of. Life has to be lived and risks have to be taken. The only way to not make a mistake is to not play the game. And that's so you're just not safe as a as a parent. I'd always cited my job as kind of two parts, one part keeping my kids safe and two parts helping them unlock who they are and, you know, make the most of this world. And, you know, my daughter's gone. So a very, very fundamental way, I did not keep her safe.

- Jason Seiden

We can have a very intellectual conversation, Did I control her getting ill. And, of course, like, you know what? No, of course not. But it's like you're never going to tell me. I will never be able to feel that as a parent because she's gone. I. So this the game, whatever, whatever that's I was making whatever balance I was trying to strike between keeping you safe in the world or the game with her. It was frozen.

- Jason Seiden

Right. It's it's lockdown. There is no no more time on the clock. There's no hope. There's no tomorrow. There's nothing's going to change. And so they're validating that recognition that there is no safe there. There is no harm.

- Jason Seiden

By the way, not only do you have to play the game and not only your mistakes be made, but there's consequences for those mistakes. People will be hurt when you make a mistake. I've had to I've had to come to grips with that both as a parent and as a human.

- Jason Seiden

And it's, it's, you start to see the world a different way.

- Liesel Mertes

What, what does, I'm struck by how profound and. Yeah. Awful. That feeling is because so much of what we get to do living in like a wealthy, affluent, you know, society is we don't have to feel unsafe in so many areas of life. And and to feel it at such a visceral level is horrible. When you say, you know, I've had to come to grips with that. What has that looked like for you?

- Jason Seiden

I don't know. That's a powerful question. I'm not sure what it looks like, but I'll tell you, it feels like things. It feels like my life before was it's just been pulled to the extremes. And I'm not dealing with any emotions that were foreign to me. I'm just dealing with a lot more of them. So it's funny, I actually said, you know, here's this girl who introduced me to stretch my capacity for joy in one direction. And then the passion stretched my capacity for sorrowing another.

- Jason Seiden

On some level, like how do you just not feel gratitude for somebody who gives you more life to live? And. It shows like that.

MUSICAL TRANSITION

- Jason Seiden

You're constantly playing other people's emotions at life events and realities. You have to live your life. If you live boldly, you will. Other people will be hurt. And you have to be OK with that. I'm not saying you should be indiscriminate or not care. I'm just saying to be simultaneously OK, moving in the light, doing your best, try and take care of people and understanding you can't save everybody. In fact, the act of saving one person might cause somebody else to be hurt.

- Jason Seiden

Yeah. And you feel it if it goes through an intellectual concept to something, you feel very deeply and constantly.

- Liesel Mertes

Elle died. And you said it's been a year and a half.

- Jason Seiden

Yeah. A little more coming up on two years.

- Liesel Mertes

Okay. Still, when something horrible happens like that and even, you know, the. The journey of walking with an often misdiagnosed disease. All of those things. What were you finding that you, what were people offering you in the way of, like comfort or presence in that, you know, messy aftermath? That was really meaningful to you? Or even now, just things that you'd say, "Man like these people did it really well. They came alongside me and it mattered?"

- Jason Seiden

It's for windchimes. So that's, that's Elle. They went off the top of our call and I just heard them.

- Jason Seiden

Yeah. So. For so long, surprised at how much. I'm not somebody who asks for a lot of emotional support. Probably not dissimilar from a lot of men that way. But I was surprised at how much I actually needed it. They were largely, I was really struck in the immediate aftermath at how supportive people were. It was absolutely incredible.

- Jason Seiden

My professional colleagues are scattered all over the country, all over the world. And without my without my engagement, a few of them, Mark Stelzner, Lori Rudiment. Susan Strier.

- Jason Seiden

I had friends who, you know, without without my help. I put up a page and tribute to Elle. She she died a couple of weeks before my birthday day. They promoted it for my birthday, a tribute to Elle and I just watched, I watched for for twenty five thousand dollars get raised in a day in honor of my daughter for a small handful of charities. The Human Rights Campaign, chief amongst them. The United Colors Foundation, which helps LGBTQ homeless youth and Burning Land, which is a CRPS foundation. And it was it was absolutely incredible.

- Jason Seiden

The next thing I know, the CRPS Foundation has a grant in its name that had been funded. HRC flew a flag in my daughter's honor, which I now have. It's it was astounding. So, in the immediate aftermath, how important, it was incredible,

- Jason Seiden

As you can imagine. You know, as time goes on, everyone goes back to their lives. I've had a handful of people have continued to reach out. And it's so helpful. On the homefront. Everybody here has been incredibly helpful.

- Liesel Mertes

What has that continuing to reach out looked like?

- Jason Seiden

Literally just a check in and a thinking of you. That is all it takes.

- Liesel Mertes

I think sometimes people fear that because they think out of the person doesn't want to talk. Or what if it brings up bad memories? Maybe I just won't do that. From your experience, how would you speak into like that, that cycle of second guessing that people can have as they should. I reach out and I'm out. What if they don't want to talk

- Jason Seiden

I'd go back to what I was saying before? You have to live your life. You might make mistakes. Go make the damn mistake. Engage and you know. OK. So I'll tell you, the waffling shows up. And from my perspective, as the one going through this, It shows up and I can see it a mile away and I end up in a position then of having to take care of the people who are reaching out to me. Sure. I know it's fairly common. And, you know, and you do a great sweat.

- Jason Seiden

I mean, like, this is such a horrible thing. I get it. We don't spend time with this if we don't have to. I'll assume it happens to you or something you're close to. You don't have to. Yes. So the, the, the fact that people are unprepared for it, I'm not surprised. The most helpful thing, we just when people reach out.

- Jason Seiden

Actually, the most helpful thing is when people would reach out and say, I'm thinking of you. I just had a lovely time with my family. Oh, great day. And I was thinking of you and I was thinking about. And I gave my kids an extra hug and I made sure I didn't take it for granted. That made me happy.

- Jason Seiden

And it's, it's so funny with these people would reach out and, I can't imagine what you're going through. And I always look at them and be like, why would you take one moment of your life and try to imagine what I'm going through? But yet we all know it's horrible. Don't waste your time. Just write like it's horrible. Check the box pass, you know. You know, it's a kids with, you know. This is gross. Taste it. No, no, no. Not to me.

- Jason Seiden

Yeah. It's like that. Except with consequence, you know. No. Right.

- Jason Seiden

I actually loved when people would tell me that, you know, they were thinking of me and they weren't taking the life for granted as a result because that meant that Elle counted.

- Jason Seiden

That meant that I would gladly, if I could be the last person ever lose a child. I would I would take that on, if I could, to say it like that's how horrible it is that I don't ever want anybody else to feel it. And so other folks actually telling me that they're happy and that they're like, I think they would feel like I would feel worse, like rubbing it in.

- Jason Seiden

But actually, no, you know, that's it's the opposite. Like live your life. And tell me you've opened up your eyes and you're stepping into it and you're aware of the discomfort and you're aware about the hard choices you're making and you're doing it and you're celebrating those wins because they're so few and far between. Those were, the those were the best things. Yeah.

- Jason Seiden

I mean, I will say because it's relevant. I mean, we we. We tend to think of our personal life happening in one area, in our professional life happening in another. And they don't. A decade ago, I actually coined a term, "profersonal" for, you know, this notion of the bleed over. You know, we spend a lot of time working. And so what was really surprising was how difficult that transition was without the folks on the work front doing some of that, acknowledging as well.

- Jason Seiden

Not just my friends. But, you know, this is where I'm spending my time. It really helps when, when professional colleagues check in as well. Otherwise, your your work starts to feel like just this void where it's like I have to go put on a, you know, put on a mask for the majority of my day.

- Jason Seiden

You know, I I think this notion of. The notion of grief at work is not trivial. It's a huge part of people's days. And, you know, I'll say I worked at it at an organization when this went down. You know, the organization I was with great culture, phenomenal culture. But this was a this was a blindspot. And it showed, and it it had an impact, like the journey could have been different.

- Jason Seiden

And. What I, what I could have done quicker or more of, I think would have been. It would have been. I could've done more. Yeah, I couldn't move through some of this faster. And. And at the end of the day, I think there's a real. You know, I I'm getting through it. I will get through it. But I think the organization lost something. And when you kind of look at large organizations with hundreds or thousands of people, here we are in COVID, and the loss is real. People are losing people.

- Jason Seiden

And there there's complicated grief happening out because they're they're unable to be with the ones they love. Now is the time to actually step into this and to have that compassion. The benefits are are substantial. They're. And they're there at multiple levels. The economic benefit, the just, the benefit to us as humans. I think it's important that our organizations step into this breach and start recognizing grief is something that we all have a responsibility for helping people through.

MUSICAL TRANSITION

- Jason Seiden

You know what it is? I'll preface this by saying I don't blame anybody. It's not an area. We haven't quite evolved to this yet. I think we're on the front edge. I think people such as yourself are on the cutting edge of bringing awareness to the business environment, of the importance of dealing with grief effectively. So, you know, we're we're getting out.

- Jason Seiden

We're getting a handle on DNI. And I think in that same bucket. This is this is their belonging. When you start thinking about belonging as a as a goal for DNI. Well, belonging. If you're dealing with something that nobody else is dealing with, whatever that thing is, that's your your barrier to belonging. So hopefully as we kind of move in this area, the will all get better. But, you know, it's little things. It's.

- Jason Seiden

First of all, texts and messages from people are super helpful. Doesn't take much. It's just like, hey, just checking in. How you doing? The gap is experienced when you don't get those more, when the only time you do get them is on the front end of a call where you're talking about other stuff. Because, you know, I would get that from my manager. Looking back, I think the only times there were check-ins were back at the top of a call.

- Jason Seiden

I'd be like, hey, how you doing? OK, great. So here's like the five things that we've got to go through today, right?

- Liesel Mertes

It feels like. Yeah. Just like, hey, are you are you ready? I'm with tasks because I certainly am.

- Jason Seiden

And so in, you know, like, OK, great. And so it's it doesn't count, you know. And it creates this problem with the other person thinks, I'm checking in. And you're like, no, no. You're just making sure that I'm ready to go through your agenda. That's not a check-in.

- Jason Seiden

That's like.

- Jason Seiden

It's like, you know, is your you know. Can you can you mute the background noise? It's it's administrative at that point.

- Liesel Mertes

Different than having, a specific time that is not encumbered by any other aspects of an agenda that would, you know, crowd it out. Yeah.

- Liesel Mertes

Sometimes people say ill conceived, offensive, stupid things to people who are grieving. What were some of the least helpful things that you heard? That you say, you'd say, you know, you can do all kinds of things, there's a margin of error, but don't do this. Let me do you a favor. Don't do this.

So I'll give you so I'll give you three answers. Number one, there's always some people who are close to you who are surprising in their lack of support And so I had two of those two people who just AWOL, like shockingly AWOL. Oh, my gosh. Right. So that's. The lack of saying something is saying something. There are, then there are people who make it about themselves.

- Jason Seiden

So when I was getting married, I remember the people who were in the inner circle. Right. You're a close friend. We'll get married and you find that the venue was small and you'd call and be like, dude, totally get it wherever you need to see this, totally fine as long as I'm in the venue. You do what you gotta do because you're going to have some issues here with your seating chart so you can see it coming.

- Jason Seiden

I mean, it was the bubble. People like the people who were barely they barely made the cut. They're the ones who would be pissed that they weren't in the bridal party, too. They're like, dude, this is so backwards. Same thing in reverse. You know, my best friend like that. You know, Lori and Mark and Susan putting that thing together. That is so incredible. The people who showed up and who were part of it.

- Jason Seiden

Amazing. And then, you know, there are the like the one or two people who who are like I was just I was appreciative that they showed up. And then I find out later they were angry that I didn't include them in the planning. And I'm like, they are so far out. They had no idea; I had nothing to do with the planning. But this was all you have a group coming together for me, like this wasn't me orchestrating.

- Jason Seiden

I wasn't using Elle to. This is happening in support of her.

- Jason Seiden

Right. And so that that's been that's been disappointing. You know, again, there's nothing that gets said. You just hear about that stuff sort of second hand. Right.

- Jason Seiden

Then then the third part is just people who don't know what to say and you know, and they try. And I actually appreciate these people. It's it's hard for everybody. I can't tell you how many people asked me, how are you feeling today? And I'm like, you know what?

- Jason Seiden

Good. Right. OK. Awesome. Like you went digging. You found the Sheryl Sandberg Plan B. Quote. And Granny read the headline and you're giving that to me. When you start getting the same question over and over again, it's it's hard. You know, I like you. You wish people would kind of real deeper or maybe find another avenue or, you know, kind of go, OK. But everybody else is saying this. So can I find the next thing?

- Jason Seiden

Can I can I have the conversation to the second sentence? And so I don't want to. I want to discourage people cause it's so important to get started. I think it's just also really important to be thoughtful and to not stop at the first perceived solution. So it's not that those people said anything bad, it's that the ones who go beyond stand out that much more.

- Liesel Mertes

Yeah, I hear that I'm struck. So I am reading there has been a book that that has just been published. I think it's it's called Meaning, The Sixth Stage of Grief. I'm going to check that for sure. But it's, it's a researcher who had worked with the Elizabeth Kubler Ross Foundation and after the death of his son said, you know, I feel like although these five stages that were described, they're not linear. They were never meant to be that way.

- Liesel Mertes

But that the fact that an important stage for a number of people is actually the meaning that they are able to make in the aftermath of loss. Not that we. And he says there's a diversity of ways that can be another. The death in and of itself is meaningful. But there are different ways of making meaning from this and how the people who live beyond that integrate a loss or grief into their lives

- Jason Seiden

Kessler.

- Liesel Mertes

Yes. Yes. Have you read his book?

- Jason Seiden

I have not read it yet. It's on the list.

- Liesel Mertes

Yeah, I've heard him on an interview.

- Liesel Mertes

It's I've appreciated it so far. It strikes me that making meaning has been an important aspect for you. Tell me what making meaning has looked like for you.

- Jason Seiden

Yeah, it's some. I hadn't really thought about it until I kind of heard the concept and realized, yes. This is true. Life is really random. Right. So here's, here's something that that death does. It brings a finality to a relationship that cannot be undone. And it leaves you, you know, it's like the other side of the game. A tug of war drops the rope and you're just and you're left in this you're flying backwards stage.

- Jason Seiden

Except there's no there's no hard ground to land on. There is no other person to laugh that they let go of the rope like you are now potentially flying forever in the wrong direction. And finding meaning is really for me. It's been around, you know planting my feet under me and just bringing that momentum to a stop and recognizing I can't honor Elle if I'm crumpled in a ball on the floor. I can't honor Elle if I'm in the past, you know, grieving her illness or thinking of her sick.

- Jason Seiden

I can't honor Elle if I'm in the future, if I'm anxious about will this happen again and like this happen to somebody else and what if and what if I hurt somebody? And what if I'm responsible?

- Jason Seiden

What if I did? None of that helps. And so for me, finding meaning has been around what Elle stand for. How can I honor her? What should I do? What can I do today that she would be proud of? And really, that's about grounding myself in the present and finding a way to conduct myself. That starts just getting through my day. Right. It's like, OK, I can't honor her if I'm crumpled on the floor.

- Jason Seiden

So what does that mean? It means I have to choose to be happy. I have to choose to live like I have to choose to get up. I have to have to choose to try. So that looks like putting my feet on the floor. Getting out of bed, making the bed, making coffee, certain, basic stuff. And as and as I kind of got that underway, then it was like, OK, well, what am I doing?

- Jason Seiden

What should I go do today? Well, I should be healthy. I should go for a run. You know, the CRPS attacked your legs. I'm going to go run. And I'm I'm I'm go use that part of my body that she couldn't. Because if I were you know, it's like if I want people to tell me that they're happy and they're not taking their families for granted, I have to assume she'd want the same. And so I'm going to do that.

- Jason Seiden

And, and right then it cascades up from kind of the basic stuff to what am I doing, like, on a higher level and my leaving the world a better place. Am I taking care of the people around me? But at the end of the day, finding meaning has been around grounding myself in the present so that I can honor her in a way that also allows me to move forward.

- Liesel Mertes

I think that there are some people who would hear something like that, you know, they would this, Elle want me to live fully and be happy and I'm purposing to do that, that for some people that can morph into, I'm, I'm just not going to think about these unpleasant feelings anymore. When they come up, it could be its own form of avoidance and pushing those things away. How do you, how do you live into that meaning without just ignoring the painful feelings that can crop up unexpectedly?

- Liesel Mertes

How do you still acknowledge and honor some of that sadness and emotion?

- Jason Seiden

Easier said than done. I can't say that I do that perfectly. This is, this is not a topic that I speak easily about and I actually don't speak a lot about because it is hard to step into those feelings without kind of getting lost. But.

- Jason Seiden

I think. For me. If I'm totally candid there are parts of it that could feel sacrilegious. There are times where moving forward actually feels like it's gonna be disrespectful like that, the respectful thing to do would be to sit and cry and grieve and be a mess and that the way to honor her would be show her how important she was by showing her how incapable I am of moving forward without her.

- Jason Seiden

And at those moments, it's a hard choice and the hard choice is to remember, we are all individual people on this planet and me doing that, me, quote unquote, honoring her in that way would be to lose two lives. So that doesn't work.

- Jason Seiden

And then you get. Right. So that's, that's sort of one path. And so I just I allowed the emotions and the thoughts to kind of carry me to get to that point. And I'm like, OK, I can't do this.

- Jason Seiden

It doesn't work. So even though the other side, even though moving forward doesn't feel right, I just proved to myself that sitting here in a bar wallowing doesn't work. So I'm going to go make that choice. That doesn't feel right, not because I'm drawn to it, but because I am repelled by this other thing.

- Jason Seiden

And then, and then there's another part too, which is there's a piece of it that's like, well, to honor her feels like picking up her torch. And carrying that and becoming the social worker, becoming her, doing the things that. And I run into the same problem. We're different people. He, you know, I can support her causes and I am. But I'm I'm taking my time because, this happened to me. It could very easily be the thing that defines me.

- Jason Seiden

And I've spent my entire life to defining myself to be something else. I'm not ready to just let this become the thing. You know, there's the guy lost. That's not who I am. What I want to be is the guy who shows people how to continue to be themselves. Even when something like this happens.

- Liesel Mertes

Yeah.

- Jason Seiden

And so, you know, so there's a it's it's hard, you know. What does it look like and how does it feel? Sometimes it feels sacrilegious. Other times it feels like I get selfish.

- Liesel Mertes

We are drawing near the close of our time. But I'm struck in that last thing you said, you know, you are you are not just a man who has had his daughter die.

- Liesel Mertes

What are some interesting things that you like about yourself that make you you?

- Jason Seiden

You know, it's a surprisingly hard question.

- Liesel Mertes

Sometimes it can be. I have a friend who would do that to people on their birthdays. He would be like, you need to tell all of us three things you like about yourself. I felt kind of awkward.

- Jason Seiden

I live out loud. I, I, I make my mistakes. My my dad used to say, my dad says, own your mistakes. They're the only things other than your name that other people won't try and take credit for.

- Liesel Mertes

And it's a great line.

- Jason Seiden

It is. And in this day and age of of digital piracy, your name's not even safe. So, like, literally, my mistakes are the only things I can. So I make them and I do my best to make new ones all the time. I try not to repeat. So I live my life. I learn. I still am learning. I am still open to learn. I don't.

- Jason Seiden

I know what I know. And I. I've earned my gray hair once, I don't have to earn it twice like I know when I'm in a situation where I actually have an expertise, but I am well aware that it's a great big world. And, you know, I have like, this tiny speck of knowledge within it.

- Jason Seiden

So, I appreciate the fact that at my age I can still look at the world with a certain amount of wonder and to sort of get lost in it and want to know how things work.

- Jason Seiden

And. I. You know, I and I'm stronger than I realized. I have a certain amount of resiliency that I'm. This has not been an easy journey, but I'm I'm surrounded by people in this club that I don't want to be in. But, those of us who are able to persevere and make something positive of it. I, I see the people who aren't able to do that. And I can I can recognize that I'm I mean, about I have something to offer because the boat I mean, it's the boat of people who are able to move forward. And I'm proud of that.

MUSICAL TRANSITION

Here are three reflections from my conversation with Jason.

• Even if you aren't sure of what to do or say, move towards people in their grief.In his words, "Live your life, make the damn mistake,". You won't be perfect and you don't have to be but your support matters.
• If you are in a workplace setting with a parent that has lost a child, especially as a manager, make time to actually check-in with them, not just as an entrée to a meeting, ticking a box so you can get on with an agenda item.This might mean scheduling a call or a meeting that isn't about a to-do list but only about hearing from them about their how they are doing.
• Navigating life after the loss of a child is hard.Jason expresses the complex, internal challenge of moving forward, of not letting himself be singularly defined by Elle's death. Sometimes it can feel sacrilegious or selfish as he leans into life beyond his daughter, struggling to be and become himself even after tragedy. If you are struggling in this journey, perhaps you find camaraderie in Jason's reflections. And if you know someone who has lost a child, perhaps this gives you additional insight.

OUTRO

- Fred Brown

That was difficult. And that the kind of person I am or what people expect from me is to not flinch in the face of adversity. I could never grieve. In a meaningful way. And I've never grieved in a meaningful way because. The role I typically play in this society that I live in is the caretaker provider and supporter. So. You know, I remember one time I got emotional and people looked at me and it was like. Their whole construct of strength was like in question for years and years and years. I just held onto OK. You can't cry. You can't be emotional. You got to hold. People are counting on you to lead in this moment of crisis.

INTRO

I have such an engaging, important episode for you today. My guest is Fred Brown, the CEO of the Forbes Fund. More on the Forbes Fund in just a little bit. Fred ushers us into his experience as a Black man in America, delving into his personal losses, reflecting on the murder of George Floyd, and talking about the head trip of anti-black racism that caused him to question himself over the years as he advocated for meaningful, systemic change. His story is compelling and immediate and important. And I will introduce you more fully to Fred in a moment.

But first, I'd like to thank our two sponsors. First is Fullstack PEO. FullStack PEO is an employee benefits provider for entrepreneurs and small business owners. In these uncertain times, benefits provide a sense of security for your people. Let the talented staff at FullStack take care of benefits so you can grow your business. We are also sponsored by Handle with Care Consulting. With a range of trainings, keynotes, and online options, Handle with Care consulting empowers you to come alongside your people with empathy with they experience disruptive life events.

Now, back to the interview and Fred Brown. Fred lives in Pittsburgh and has six children.

- Fred Brown

My oldest sons. The engineer works for Caterpillar. He lives in Kansas. My next oldest son is 18. He's headed off to college. My next oldest son is 16. He's at home with us. My 18 year old is at home with us currently. I have a 13 year old daughter, my six year old daughter, and my four year old daughter and my wife. And so the seven of us. In the house all the time.

- Liesel Mertes

We covered that full house and lots of opportunities for, I'm sure, all kinds of interactions. I am. I said I said to my husband recently, I said, thankfully, you know, I haven't wanted to divorce you. As a result of this, I have thought about if I could possibly divorce my children because there's so much always going on. So I hear you in that.

- Liesel Mertes

Are you a man that has space for any hobbies or when you are not working? How do you like to fill your time?

- Fred Brown

I like to fill my time of exercising. I used to like to fill my time reading. What with? Five kids in the house and school. You know, five different schools or three different school systems. That's difficult. Have family night every Friday. So, we do a family activity. We like to go camping before COVID. We used to like to go out every now and do some things. But since COVID, we've really begun to have deeper dialogue about race issues, about being an entrepreneur.

- Fred Brown

And so, my hobby, the thing I love to do pre COVID is, I have a very stressful job, so I need to let my energy flow in a way it is positive. So, I like to work out. Yeah. And yeah, I like to work out a lot. I used to be ranked 13 for the country as a proud power lifter many moons ago and about 40, 45 pounds that goes with it.

In addition to being a self-described "gym-rat" who enjoys outlifting men half his age, Fred is the CEO of the Forbes Fund, a 37 year old institution that comes alongside struggling non-profits.

- Fred Brown

When I ascended to the role of president CEO of the Forbes Funds in 2018, I immediately began to explore like the intersection of how can we promote the great aspects of organization is honor our history of being a supportive organization.

- Fred Brown

Look at the role of technology and create a pivot that looks at what is emerging in the belly needs in this sector. And so we began to look at this notion of systems design and ecosystems development taken into account at every community, had its own typography, its own unique DNA. And then we don't want a cookie cutter approaches,

- Fred Brown

We work with about a thousand non-profit organizations a year. There's about 20, several hundred in our area. And in southwestern P.A., there's over 80, 500 nonprofits.

The Forbes Fund has a strong team and are doing innovative things like funding catalytic community cohort, C3, that utilizes collective genius and mentoring relationships. They have also just launched the Forbes Funds University in partnerships with local institutions that provide non-profit leaders with credit and continuing education opportunities.

Earlier that day, he was offering his expertise and leadership in a call

- Fred Brown

And these kind of pivots have created phenomenal exchanges between philanthropy, between non-profit sector universities, community stakeholders and businesses. And I'm just excited about this stuff. I'm in the middle. And I just wish I was able to do more things.

- Fred Brown

I yesterday, we were on a call with a group that wants to start a gardening program. And this is where being a thought partner is part of a role we play. So, we started talking about institutional racism. And they started to talk about the historical trends in their community. And we said, well, what would the metaphor be for digging up the earth and planting and see and nurturing a foster new growth of plants to be eaten and used by the community?

- Fred Brown

Well, what would the metaphor be that you can rebirth a community? Put your hands in the soil? There's a cathartic experience there that could address racism, social injustices.

It is a powerful metaphor. And as you have already heard, Fred is a savvy, smart practitioner who cares about the holistic person and the toll that racism is taking on the bodies of Black and Brown Americans.

- Fred Brown

As people of color manage, we stay here for a while, for over two hundred years. There's an illusion that we're OK. And even in our own way, we convey that we're OK. But the data says other data says although we're managing, we have on average an eight year lifecycle difference we have financially we made. I think 70 cents on the dollar compared to our white counterparts.

- Fred Brown

And we carry a burden of comorbidity issues, which has an aggravated impact on diseases and viruses like COVID, which in many cities we have three times the death rate as our white counterparts. And so although we might be managing the burden of being black in America is not without a cost.

- Liesel Mertes

Yeah, yeah, I am. There's an incredibly impactful book that I've read with and I've read now a couple of times within the last five years by Dr Bessel van der Klerk. It's called The Body Keeps the Score, and it's all about trauma and embodied trauma and just the fact that it shows up in our physical health. And it's been something that I've pondered in my own journey. And as I over the last couple of months have extended my imagination into more of those data points, whether that is, you know, like the neonatal care and pregnancy complications.

- Liesel Mertes

And just regardless of, you know, education level or economic level, that there's so much lower, you know, for black Americans.

- Liesel Mertes

And to think like, yes, that's because the body is literally like holding on to generations of absorbed trauma. And just as I as I avail myself to listen to more stories and try to think like, what would it feel like if when I sent my 10 year old son out bike riding, that I was just worried about his, his safety all the time because of how he looks, you know, like I can't even extend to imagine that. But I, I don't I, I don't understand.

- Liesel Mertes

But I'm hearing differently being like. Yeah, what a horrible toll on your body.

- Fred Brown

You know, I think that many of us. We arrive at a point in our existence where we just accept what is. And we. We learn how to navigate that. How can you accept being killed? Over possibly a fake 20 dollar bill or selling single cigarettes or. Sitting in your car and reaching for your license is very different. You know, when I talk to other people and they never worry about these things, they don't ever have to tell their kids the story.

- Fred Brown

OK, do this when the police pull you over and you're going to get pulled over. Do this in the store when the police are a private detective, ask you, what are you looking for? Do this when you drive into community. And his gaited. Is there is this these next level? Requirements that you have to educate your kid on. You know, they're really. It's common place for us. But this is not natural, mother, other people are not doing that.

- Fred Brown

So I think there's an extra burden both on the child. You know, my four year old. I took her my daughter would go bike riding every night are my six and my four year old. So we're all riding last night. And we're eating some French fries and corn and, you know, just took a break from writing. And some people came up that I know and they came to talk to me and she said my four year old said, white people kill black people.

- Fred Brown

She's four. Yeah, her external expression that people know is that they're going to kill me or they go kill somebody black. And I said, where'd you get that from? She said, "that's what they said on the news."

- Fred Brown

How did you. I don't know. I don't know. That's difficult. But, you know, I have to sleep on that.

- Liesel Mertes

Yeah. Well, there, you know. I there are that you wish that you could say it was like a boogie man, like, no, that wouldn't happen to you. Like, no, you're safe. Like we want to extend to our children a sense of. There's so much we do as adults to protect them.

- Liesel Mertes

And there are the is that we can't take away, you know, and. I can't imagine in this room what that's like. You know, as a parent in. In my own experience, there's, you know, my, my children have had a sibling die. And I would love like they have a really real sense of like will another one of my brothers or sisters die. And I'd love to be like, no, that will never happen.

- Liesel Mertes

But that wouldn't be true. Like, that could happen. And I can't imagine to extend that to just meta like deeply a sense of, that is a possibility. And that kind of way.

- Liesel Mertes

You've as we mentioned at the top of the interview, you've you've had, your father's died within the last three weeks.

- Liesel Mertes

You lead an organization that is really attuned to the needs of your community. I imagine that watching these events on the news also connects to, like your own personal experience of life as a man in a black body. What has it? What is what is it occasioned? What is that felt like for you to live the last three weeks?

- Fred Brown

That's a heavy question. Not that it's not real. So in 1996. I began to do some social justice and environmental justice work, and at that time a young black man was killed in Brentwood, Brentwood. P.A. as a result of a truck traffic stop. Named Jonny Gammage.

- Fred Brown

And so I helped organize the city. The black community around protesting, peaceful, protesting, marching, demanding more laws to protect citizens and accountability for police. And so I thought, OK, we did that work. We made some progress. Not a lot, but somewhere in my psyche, I thought, OK, that was done. And I'm onto the next thing.

- Fred Brown

The next thing was I began to ramp up my work as a probation officer and I buried about 50 plus kids from gang violence during that same period and so I had gotten accustomed to go into funerals and and such.

- Fred Brown

And 2001, when I was in graduate school working on my PTSD in a six month period, I had six family members and friends there. My grandmother, my uncle, two cousins, my best friend's mother and a friend. And it it became a burden.

- Fred Brown

And I told somebody in an interview one time, I feel like I'm walking around a coffin on my back, literally. So, you know, I realize I'm getting crispy burnt out in this work with kids. And I think they're so important that I don't want to stop the work. So I continue to do the work and I continue to rise up in the system.

- Fred Brown

So my thought process and theory changes if I get high enough in the system. I can promote systems change, which will alter these kids lives.

- Fred Brown

So I do that now, figure out as I get up, work into the system. The system has no desire to change. It has no desire to be different. It has no desire to meet people way of way.

- Liesel Mertes

And so can you tell me a little bit more about that? I feel like that is a powerful statement that I would love for you to unpack a little bit more. What were you observing?

- Fred Brown

I was observing that there is a level of institutional racism within the system that perpetuates the need for actors to be arrested for not have a resolution to common problems, i.e., a kid could not get off her probation unless they paid their restitution. A kid couldn't get restitution paid for in a job because they were on probation. And so, it was these kind of vicious cycle is where you looked at the common person, what they just they just need to get a job and then they can get off a restitution.

- Fred Brown

Well, how does that work? A kid with a juvenile record with a record who's supporting that? And then if the kid is a juvenile, you've got to get special permission to work. You know, it's just it's just a burden and it creates a condition where there's just a vicious cycle. And then you see that the cycle trends upward as these kids who can't break the cycle as juveniles become adult offended, they just continue to recidivate. And you see very clearly there were point points of departure where people could have did something different.

- Fred Brown

And they, they didn't or couldn't. And, you know, I remember another experience when I worked on South and Charlotte. And this was probably most difficult job I've ever had is a PP social worker, a permanency planning social worker. And basically, in short, you determine whether if we came to your house and your husband and God forbid, got into fisticuffs or fight or whatever, and there was some concern about the kids, we might remove the kids.

- Fred Brown

You guys sort that out. Or if you put your hands on a K is doing a fisticuffs and that kind of stuff. And so we kind of determine whether or not people got their kids back. And what I noticed in that system was middle class people fared better than everyday low income people.

- Fred Brown

Training might be scheduled for you to go to five classes on parent engagement, behavior modification, anger control. You know any of these? No classes. The classes were usually offered dawn workday. So a person that is middle class or has a job, the salary. They can go to their boss or be the boss or just say, hey, I'm going out. I'll be back at this time. No questions. But an hourly worker had to go get permission from your supervisor to miss work.

- Fred Brown

And inevitably, the supervisors will say, hey, if you know I you're going to get fired.

- Fred Brown

I don't know about whatever you're talking about because at the same time, you're not trying to tell somebody, hey, I got go to these classes to get my kids back. Right. There is a certain level of discretion you're trying to to manifest just for your personal well-being. And so I just saw. Case after case where poor people were get were not getting the same benefit.

- Fred Brown

And I took this concern to management. My supervisor told me to take it to higher levels of management. And I talk to the manager, the highest level of management. That's a set of choices because I had been doing this work for. 20 something years, and I knew about nontraditional service provider systems, social service networks and such. And I presented models to this director that maybe there's a way that we can mitigate the risk. And the director looked at me and said, why would we do that? And I said, because there's a disproportionate impact occurring to certain families based upon socio economic strata, which is having an adverse effect on their ability to get their kids back.

- Fred Brown

And the highest ranking person in the institution said, we're not going to do that. I'm not interested. And I just in that moment, something that in me about humanity, something dad and me about, well, maybe they didn't understand. Maybe I wasn't a good communicator. Maybe. I didn't do a good job of explaining what I was talking about. So I went back and talked to other people. They were like, no, you were very clear, you know.

- Fred Brown

And the thing that broke me was broke my spirit was to have a grown man come to your office and start crying and said you would destroy my family and you said you were going to help me. There's nothing you've done to help me. The services you need me to attend don't work on my for my hours. The restraints you have on me, Sam Martel, don't work for my hours. And so there was just a series of unparalleled opportunities. Supported all families. And it just got me to start thinking about, well, who writes these policies? It's not poor people.

- Liesel Mertes

Yeah, and I hear I hear in that even like just to interject before we get you for the head trip, also that systemic institutionalized. Yeah, antiblack racism is in some ways in that, like you, you had to come away and think wasn't my fault. Like, did I not explain myself well enough like that? It turned inward like that.

- Fred Brown

Like, well, maybe I didn't do a good enough job when really it gets back to. Like, no, we we purposefully want to keep it this way, whether by design or just general apathy. Because it doesn't matter enough. So yeah, I imagine that's the nuance of what it does. The self questioning. What causes you to have somewhat of a psychosis about? Are you in it? Are you in the Twilight Zone?

- Fred Brown

Are the things you're suggesting just so unrealistic? Or is there a, is there a strategy here that intends to keep people in the places that they're in and you don't want to believe that because you're working on the side of justice.

- Fred Brown

You're working on the side of equity. You're working on a side of this notion. And I struggle with this when I was a probation officer. And I'm going back now. I'm more forward and I'm going back with, you know, as I became more a flaw with the court system and working with judges and dealing with a lot of gang stuff and not really understanding the plight of the state of these kids and their neurological pathways for their criminal thinking errors.

- Fred Brown

And just you start understanding the science of this work, the human aspect of the work, the economics of the work, the poverty community, social structures. It's just there's a plethora of things that contribute to it. But when you start to peel it back. And you realize that you like doing this work because you actually think you can make a difference. And there's always a few people who make it like they, they create. And I call this the illusion of progress.

- Fred Brown

Right. Just always has to be somebody that makes it, because if nobody ever made it, two people would stop having hope that there's a possibility to change. So I think the system allows for certain few people to make it. And I will say and those people do what they need to do to get through. All right. But over all, when you look at the preponderance of people who go through the system, the statistics on who's successful in it is not high, as you have to start wonder.

- Fred Brown

Like, why is that? Why if our goal is to restore humanity and people, why do we say after somebody serves time for an offense? That they're a felon. But they did their time. Why are we now labeling them? And we know that that label is going to discredit their ability to have any measure of response and opportunity back in society. And now that label for act, they did time for which Anan's. I mean, it's like.

- Fred Brown

If you put you and I have kids, if we put our kids on punishment. And at the end of the punishment, you're still seen as being criminal. How does that work like you. Did your punishment? OK, let's start over. You got a clean slate. Mommy, daddy ain't mad at you no more. But here's what you need to be aware of, if that happens again, the punishment is going to be more severe or whatever that is right.

- Fred Brown

But there is a point where a person is held accountable and then they should be allowed to restore their humanity. And get a fresh, strong start. They should be able to. Acknowledge their wrongdoings, come to grips with that and decide how they can move forward. Well, the first thing they have to do is reestablish yourselves economically to take care of ourselves. And that's a burden that they can't even get a job and housing. Yeah, then we are by nature.

- Fred Brown

Knowingly, willingly, intentionally creating a dynamic that people are born recidivate. You're not giving them a chance to. Return to society, healthy and whole. You ask me to run a society where they sped up a race with one leg and with the title where you hit X.

- Fred Brown

Yeah. And I just you just have to wonder, like. Nothing's changed since we've been putting people in jail and per capita, we have the house arrest rate and incarceration rate in a world. Yeah, it's an interesting, you know,

- Liesel Mertes

Even, even just to take it to the really personal lived like level. You give the example with parenting. You know, if I have a child who lives and I punish them for lying, but then what it would it would be if I just you know, I was like, well, this is Ada the liar for the rest of her life. Why just that totalizing identity then to take on, you know, of every time I introduced her? This is Ada. She's a liar, you know. Yeah.

MUSICAL TRANSITION

- Liesel Mertes

So we talk about disruptive life events on the Handle with Care podcast and the more interviews that I get to do and just in my work as a consultant. Grief is always localized within a particular community and that community is shaped by by family habits. You know, some people it's like grief is very taboo. You know, we keep a stiff upper lip. It's also shaped by, you know, by aspects of just communal norms.

- Liesel Mertes

I can think of Karen, who she is, a Chinese American, and she talked about walking through her sister's suicide and like the very entrenched taboos of a Chinese, specifically a Chinese American culture and what that allowed her to do or didn't allow her to do. And so, this sort of specificity to community in dealing with hard things. And it's always like its own burden to ask someone to speak for an entire community. But I'd love to hear just from your personal experience, as you talked about, you know this.

- Liesel Mertes

I think you use an evocative term. It when when the six people die that you were getting, it was

- Fred Brown

Like walkin' around with a coffin on my back.

- Liesel Mertes

Yeah. Yeah. And that you you just were lacking resilience. What was it like. What. What did your community offer you in ways or. First, let me just start with tell me more about what it was like to be walking around with a coffin on your back.

- Fred Brown

That was difficult. And that the kind of person I am or what people expect from me is to not flinch in the face of adversity. I could never grieve. In a meaningful way. And I've never grieved in a meaningful way because. The role I typically play in this society that I live in is the caretaker provider and supporter. So. You know, I remember one time I got emotional and people looked at me and it was like. Their whole construct of strength was like in question for years and years and years.

- Fred Brown

I just held onto OK. You can't cry. You can't be emotional. You got old. People are counting on you to lead in this moment of crisis. You're a leader. And so for years, I just. So I've got to leave. You know, when I was in graduate school and all of those deaths happened. I remember going to talk to people. And somebody asked me, why are you still in school? Why? What are you trying to prove?

- Fred Brown

Like, want to go take care of your family? And deep inside my thinking and being was, I've never quit, so I can't quit now like I've gotten this far. And a PhD program, I'm from the hood. Nobody thought I would be here. Me quitting is just that's not an option. As I started to talk more more to people, what I would like has taken a toll on you. Is it worth it? Like, what are you having to prove?

- Fred Brown

And a friend of mine is a mentor of mine. I say that's a piece of paper. The work that you do is transformational. You don't need a piece of paper to be transformational. And what what you said,

- Liesel Mertes

1. I want to I want to just go back for a moment, because that is really interesting to me that that sense of where you'd come from, like you come from the hood you'd come so far. Was it. Was it.

- Liesel Mertes

Was there an element that you felt of like a fear of like if I stop pushing, I might not keep going? Or like. Was that was that given to you by other people in your community who had celebrated how far you come? Did you feel like you were held up as something that you didn't have space for that? Tell me.

- Fred Brown

Right. I would say that nobody told me I couldn't quit or nobody said if you quit your this or that. But. I'm celebrating. Whether I like that or not, people see me as somebody who's navigated the streets and made it. And so. Good, bad or indifferent? Live with that identification. This has driven me to push beyond my my bounds and understanding of my capacity.

- Fred Brown

And, you know, one of the things I told the doctoral program, you know, because I was working on a degree and I was my dissertation was focused on Afro centricity as a theory of change.

- Fred Brown

And I cut a lot of flack for taking up that mantle. But that was the origins of my existence. And so, I wanted to show that ethnocentricity was indeed a universal practice that could be applied across multiple ethnic groups and be successful. And I was actually doing that in a successful way.

- Fred Brown

But want to get the piece of paper to say Dr. Brown wrote this book and he said this and that. And so, you know, the community was counting on me every time I went in.

- Fred Brown

Some places there's like there go, he's going to be a doctor. That's Dr. Brown. So there was just this. And it wasn't intentional, but there was pressure like, you can't fail. People are counting on you. You will be the first doctor to ever live on this street. You know, people know that. And you give back and you're not protected. You're not going to move out and leave us.

- Fred Brown

And so there was this symbiotic relationship with the community that I felt I had to uphold. And the reason that I saw myself even being capable of being in a PhD program was nothing added. But it was everything, the community important to me.

- Fred Brown

So I never saw my experience in school as my experience. I saw it as the community's experience. And I was just a vessel of theirs. And so that that was very difficult that I use. The word broke me and I'll know if that's the right word. It humbled me, but it hurt. Yeah.

- Liesel Mertes

You mentioned that mentor who is saying that he saw a tool that was taking on you. Were you seeing that as well?

- Fred Brown

I thought I knew it was a toll, but as a man who's a power lifter and who has this illusion that everybody thinks I'm in, you know, I shouldn't be bothered by stuff and I've taken on taking on that persona. I just saw it as another test. Like it was just like, OK, you've got to pass this test.

- Fred Brown

You have to have a story to tell people like when this happened, this is how you did it. Like people are looking to you forces for solutions in the face of adversity. So adversity is part of your eco system. So this is no different. So why are you getting personal and breaking down? And, you know, why are you hurt? And, you know, and I was like. I've never. Was able to really. Deal with that.

- Liesel Mertes

Mm hmm. Yeah. I am I'm struck that there is a certain distrust that white majority culture has towards strong emotions, specifically from black men and women. You know, I feel like you're so often labeled like this is this is an angry black man or angry black woman. And just that that big emotions are something that, you know, the majority culture doesn't really want to see and doesn't want to deal with. And that perhaps that that could also, you know, there could be a certain expectation as it relates to other strong emotions like grief or sadness.

- Liesel Mertes

Did you feel any aspect of, you know, there's like community expectation, your strength, but just of you can't have too strong of an emotion like that that wouldn't be professional or possible? Was that any part of an expectation at all that you felt?

- Fred Brown

I felt. Yeah, I felt like. I did show this pressure that I had to have equilibrium. I felt that. If I lost it, then that would signal to other people, it's OK to act like that and so that.

- Fred Brown

I was always in this place that I was trying to get white America to realize that everybody is black, is not all drugs a gang member just making babies and not taking care of. And the greatest challenge that most black men is my size at that time. And intellect is you threaten white people when you walk in a room and you ask the intelligent question, especially one they don't anticipate. And so if I became passionate about things in particular around the death of black kids and talking to people, I was the angry black man.

- Fred Brown

If I started asking too many questions, I was trying to be smarter than everybody else. So there was always this. Notion. Like, how did you create balance in the face of. The rhetoric that's not real. But. Is pervasive and dominant culture of pedagogy. This is very similar to what's going on now with many of my friends and colleagues.

- Fred Brown

Now, as a result of seeing George Floyd's murder on TV and seeing the face of the actor not being moved, not having any compassion. Now people are like, OK, I get it. And the struggle that we have is people of color who are friends with those individuals is once again, was I not telling my story. Clear enough? Was I not a good communicator? Did you not hear me say just buried over 50 caged like is these just things is rolling off my mouth. It off my tongue to interpret subconsciously as not being real tangible. That that like.

- Liesel Mertes

Man, if you could see my face, that just that's breathtaking. That. Of course, that feels like just one more iteration of feelings that you've had through the years. Yeah, that's powerful. It's I is a hard position right now.

- Liesel Mertes

When I know I feel like, you know, tap. It happens a lot. People want to go and say, like, teach me, teach me about racism or or things like that. So not to not to ask you for, like, the history of it.

- Liesel Mertes

You know, as, as we discuss empathy on the podcast, if there was something that you could just insert into the consciousness of white Americans as it relates to empathy for you as a black man right now, what would you want them to understand differently?

- Fred Brown

That's a great question. I think one of the things I would want. Is. For them to see. Me and other black men and women are just as human as.

- Fred Brown

As people were families, that. Really want the same things they want. We want the same kinds of attributes. We want the same acknowledgements. We want all of those things. And, you know, we we want a good space.

- Fred Brown

Because I have to believe that the people I'm cool with that call me and ask me, you know, I was talking to somebody else today and they say, did you get the call?

- Fred Brown

And as black people, we know what that means. Like, whenever something tragic happens, our white friends call us and say, and I feel so bad. I want it. And we don't think there's nothing wrong with that.

- Fred Brown

But then people say, what can I do? And it's like, well, did you not see? Or hear me for 35 years complaining about this. Did you not, like hear me say I buried his killers, just came from a funeral?

- Fred Brown

I had a rough week, you know, with a judge. Like, I got pulled over and it's like, so when I told you I got pulled over and I didn't do anything. Agent in the back of your mouth, were you thinking? Yeah, you probably do somewhere you wouldn't get got pulled over. And so you got upset. So it just makes you caucus. Now that. When you're talking to your friends or they. Listening or did they hear you?

- Liesel Mertes

Right. Know, I hear that. I'd like to just because I know you have to go. When you were going through this period of loss or even as you're grieving now, two questions.

- Liesel Mertes

First, I'd love to know what people did that made you feel supported. And then lots of times people do stupid stuff when they're trying to comfort. That actually doesn't hit the marks I want. I would love to know what made you feel supported and what made you feel totally missed, that you'd say don't do this stuff, It's just bad.

- Fred Brown

I felt supported, especially in the last three weeks by my board or my team. And my special assistant cleared my schedule, not telling people particulars, but just saying he's out. He's not available. And then stepping into the role of all the things I do, a lot of people don't know I do. And that. Missing a beat. Just stepping into it and managing that.

- Fred Brown

I think the second thing that was rewarding was my colleagues I work with around the country in the world to send flowers and plants or plants, not flowers, plants and cards.

- Fred Brown

And I haven't read all the cards and just know people said, I want to talk to you, not send you a card or text you. And then in an. Kidding, having this happen while the George Floyd case occur. There's been a lot of people I work with having epiphanies about. I really wasn't listening to you. I really couldn't hear you. So, it's a watershed moment. I think the thing that. This is problematic.

- Fred Brown

And I don't think this is anything anybody's done to me as much as it's something I've done to myself, which is I had this process in my mind and I could just turn it back on my creativity. So, I have four outstanding things I told people I was going to get to.

- Fred Brown

Two weeks ago. I just have not had the mental space to do it. And it's not. And this and people are not. Not expecting it. They are expecting the innovation.

- Fred Brown

And I'm so used to just coming through as I've done. Year over year in the past, where even in the face of adversity, actually some of these things make me dig deeper into. I need to answer. I need to answer. In this particular case, I'm tapped out.

- Fred Brown

I'll have to answer a personal loss triggering another black man being a martyr in the work I did in 96 to now it just trigger a cascade of historical events and current events that are going harder is not going to resolve. And being innovative is not going to resolve.

- Fred Brown

And so, I you know, and I'm inconsolable because I think I crown and said I'm not a outwardly cry, emotional guy set for when I'm angry. And so, because I walk into space and I'm in a meeting, I just facilitated a workshop.

- Fred Brown

And people's work is perhaps this pass. And I thought he was off. And, you know, so I've been in what I would call high level of things. I didn't want to not I didn't want to fall apart or not move forward.

- Fred Brown

And I knew people expected me to be there. So, I was there, but I was just there and. And body, not by spirit or soul. And, you know, interesting enough, today, my board and my board meeting, you know, my board was like, we need you to take a break.

- Fred Brown

And it was interesting because one of my board members say we need you back at 150 to 200 percent. Like you always been not 100. Right. So, my board already is acknowledging you don't function at 100 percent. Yeah. You function at a 150 and 200 percent. And so, whatever you need to do to take a break, that's what we need back. We don't need this guy limping in at 100 percent because that's not who you are. And so that was compelling today to hear my board say to.

- Fred Brown

And just acknowledge, like, dude, this is how you roll. Like, this is what he brought to the table. And so I'm conflicted with. How sustainable is that and. Is that what I need right now and cannot allow myself to grieve? And what does that look like? I don't know what that looks like. I know what I do when death occurs. I know what I do when tragedy occurs. I go to my office and that idea, I come up with solutions.

- Fred Brown

And so, the next day people are like, well, what are we going to do? Would I say, here's, here's what I'm thinking. And peoples like, wow, that's a good idea. I didn't think of that. Are we going to do that? And everybody's like, yeah, we're gonna do it.

- Fred Brown

And so, I'm just used to being able to turn it on. Hit the switch, go to another level. In this instance, there is no other level that I'm aware of. And it's not coming to me. I'm not having great insight. There's not a voice speaking to me. There's an emptiness that is compelling because the emptiness is in conflict with what's in my mind. Mm hmm, yeah. If that makes sense. Right on much swirling.

- Fred Brown

Yeah, I'm. I'm able to write and create because of something that's in my heart disconnected to my mind that comes out to my ability to articulate that. But I realize in the void that exists exists now cannot conjure up, even though my intellectual thought process is driving solutions because my heart and soul have been eviscerating.

- Fred Brown

I can't even grapple with the ideas not percolating to the tangible thoughts on paper. And I'm in this crazy because it's keeping me up all night, like I have these ideas, like I will do this and I would do that. I write it down to energy to to actually do the writing and to put everything together and create a serious change. It's not there. That's what I told my board. I say I'm not here. Like at an all my life I've been in all these places and doing all these things.

- Fred Brown

I am not here right now and I have to acknowledge to my board because I have a responsibility to let you know that I am not all here. And. And at the same time, I'm not trying to sit up and say, I got a problem, like I need this, I need that, you know, because I want people to blaze. He fit, not fit to lead. You know, and so it's a conflict. Right.

- Fred Brown

And you have to take time. And I haven't really taken time, like up almost every day. I was off, I did something, at least three things now compared to nine things.

- Fred Brown

Three things is better, but still, right? Yeah, it's three things. It's work things. Right. You know, so like today I'm going from seven to nine.

- Fred Brown

Yeah. All right. And no, nobody is thinking that's a lot. Or did he just have a tragedy? I think they think and that's just what he does. Yeah, yeah. Yeah.

- Liesel Mertes

That, you know, those are important questions and. What, what it reminds me of, like I you know, when my daughter died, one of the the hardest voices that I had to deal with was my own, like, inner judgment, because these things that had come so easily and naturally, the things that it was just like, you know, like water off a duck's back, like, of course, I could, you know, execute on these projects and I'm in a graduate program and do all of it easily.

- Liesel Mertes

Like all of those things were hard and grinding. And it was this sense of like, I don't even like myself that much if I can't, like, produce the way that I. And there was that own sense of, like myself judgment that was really hard to reckon with. And, you know, there is just like somewhat similarly, I'm a person who I render myself in words and actions. And to feel like that capacity, which was like my most natural language of expression, just was like.

- Liesel Mertes

I had to struggle so much for that, and it was like, if I can't like, if I can't render myself that way. In this thing that matters so much like it was a sense of intense dislocation with myself. There was really heavy.

- Fred Brown

So let me tell you, was heavier ball, which you just said is. You said this twice on this call. And I heard it the second time about your daughter. And that's an example of.

- Fred Brown

I heard you, but I wasn't listening. And I'm struck by even more. Oh. Lack of. Acknowledgement that our hurting. So, let me first say my heart goes out to you as a parent for that loss. My heart goes out to you as a mother for the loss. My heart goes out to you as a human being. Who has to bury their child? Yes, the unnatural consequence. And I'm so unfortunately aware of that because of the many kids that I had to.

- Fred Brown

Be a part of their transition. And listening to you and and understanding now. I think why you do this show. Is incredibly moving and. Courageous to do this over and over again when every time you as these deep penetrating questions, it's a reflection of your own experience with your own child. Like deep. Somebody to me, that's how I interpret that. Like how? And you know, I will tell you this. I have a litany of things to do that are canceled, but this was not one of them.

- Fred Brown

I needed to be on here because I needed to talk. Right. No matter what it was, I need to be able to talk without an expectation, I had to do something right.

- Fred Brown

I need to get my emotional content out in some form or fashion. What I'll say. OK, I'll get this proposal to you by tomorrow or so, because I know I know for a fact my team was wonder why I had this call. Like like why you to have this call with all this stuff going on. And I couldn't explain to to them that I needed this. I need this for me, I need to have some emotional exchange with someone that's not kov.

- Fred Brown

It does not. George does not. Other is slight. I don't even know what it would be about. But, you know, depending on how you brought the story to life, I just need to be able to talk. From an unbiased perspective, without expectations and be authentic and courageous and listen intently. So thank you. Thank you for being patient with me. Even getting this set up. And I think you're a fantastic interviewer. You're very fluid and nonintrusive.

- Liesel Mertes

Well, thank you, I I receive all of that wholeheartedly. And I can see even that that is a kindness of you even to, you know, I, I, I. It touches my heart that you would pause and say that because you're a man in a lot of his own intense moments. So, thank you for that gift of empathy, May I ask. Let me just the exchange names my daughter's name who died was Mercy Joan Mertes. What was the name of your father?

- Fred Brown

My father's name is this transition is James Moler. It's a powerful thing to also know the names of someone is. Mercy,

- Liesel Mertes

Mercy. Yeah, it was when we were we were praying and hoping for. Yeah. And even as I think of of calls for mercy and justice, she, she gets to be before me as something not yet actualized,

[01:11:55.930] - Fred Brown

but beautiful. So. Wow. Powerful. Great story.

[01:12:07.300] - Liesel Mertes

Thank you.

MUSICAL TRANSITION

Here are three key takeaways from my conversation with Fred

• Systemic racism in America is real, insidious, and persistent.Fred talked about personal grief over the state of things, the way that systems, whether that was the probation system or family reunification system, were established and maintained in ways that hurt lower-income black men, women, and children. I have not been wounded by these systems, but it is important for me to listen to the stories of those that have, to believe them, and to advocate and usher in meaningful change. If Fred's story piqued your interest, there are links to the Forbes Fund as well as to a good primer for educating yourself on these issues in the show notes.
• Be careful what you convey/expect from a leader that is grieving.Are you expecting them to just keep on churning, without pause? Fred has a beautiful commitment to his community. He felt like his accomplishments were not just for him but also for his community. He felt an expectation of strength and persistence from his community and that messaging kept him (in part) from fully grieving.
• We all need a place to grieve and just to be, without an expectation of performance.Fred talked about feeling compelled to keep our interview date, even with a dozen other pressing commitments. That having an unbiased listener allowed him to be authentic and courageous. His words towards me were kind…and this show gives me the opportunity to really listen to a story. But it can be hard to do in our personal lives, when there are so many demands and questions that we want to ask and subtle agendas or conditioning that keep us from really being available and showing up. May we be and may we become a safe space for those that make up our community.

OUTRO

Link to Forbes Fund: https://forbesfunds.org/

Workplace and Rcae Reading List: https://hbr.org/2020/06/confronting-racism-at-work-a-reading-list

Anti-Racist Resource List (books, movies, podcasts, articles). https://medium.com/wake-up-call/a-detailed-list-of-anti-racism-resources-a34b259a3eea