I advise you to wait to click on the audio until you reach the part where I explain what it is.

Dear friends,

I am writing to you from my covid bed, dressed in my covid ensemble—stretch pants under sweatpants, wool socks and tall uggs; undershirt, shirt, fleece sweater. Topped off with the fluffy warm robe my mom got me 18 years ago when I was 40 weeks pregnant with my first child and we had nothing to do but buy things that made me happy and make cream puffs. Despite being worn over my clothes every day of every winter for the last 18 years, the robe can still be described as pink. Kinda. 

Many things have happened since I wrote to you last.

In the month of November, the tremor devolved developed into a true disability and I spent my days figuring out how to adapt, accommodate, and arrange my life around it.

Fine motor work became extremely strenuous. This impacted any sort of computer work—the combo of sitting upright and still plus focusing my eyes plus restraining my movements made computer work a true feat of mental and physical exertion and endurance. I lost my ability to write.

While fine motor movements have been difficult, large movements with my arms reduced the tremor and therefore its impact. So I spent the month doing a lot of cleaning. Hours and hours of scrubbing grime off of walls and baseboards and showers and floors. It was me, my collection of scrub daddy products, dawn and vinegar (mixture of champions), and The West Wing in my ears. I binged all seven seasons in less than a month. Hour after hour of CJ Cregg and all the gang doing their thing out in the world while I scrub scrub scrubbed things that nobody could see and nobody cared about.

I had to spend a lot of time laying down. Prob about four to five hours during the main part of the day. Recovering from exertion and overstimulation, mostly. 

I’ve watched so much TV while laying down for hours and hours. So much. K dramas galore, weeks and weeks of West Wing, some ill advised Christmas movies (I’m looking at you Lindsey Lohan and Freddie Prinze Jr). And then on Thanksgiving, Jorie offered me some “chutaney” and I about lost my sh*t so I had a solid two weeks of New Girl before it lost its luster.

I’ve been so so bored. 

It is hard to describe what the month has been. At some point, I realized that I hadn’t even talked to any of my friends about it because what do I say? My head shakes a lot and I can’t do anything but clean and I lay down a lot? 

But that’s not what it really is.

It’s the day that I was going to go sit in Kiri’s classroom and I couldn’t make myself go because I didn’t want her to be embarrassed of me. I didn’t want to be embarrassed. The kids are at a new school and they know everyone, and Devo knows everyone, but no one there knows me Before. 

Or the day I was at the head of the line at Marshalls and I realized I was turning away from the people behind me because I didn’t want anyone to see me. I made myself turn all the way around so that I was facing the line, I made myself sit in the fear and discomfort and grief.

I’ve made myself keep going out into the world even though the tentacles of phobia were pulling me in. I went to the school fall festival and hung on to Devo’s arm in a way I’ve never done before, but I went. I’ve sat in church, and at a wedding, even though people behind me can see me shaking. I turn my head towards, instead of angling away. I practice opposite action almost every day and it helps. It helps. 

I woke up one night crying because I felt that what I really needed was exposure therapy. For someone to hold compassionate space for me while we both bring our full attention to the tremor while I cry and cry. 

It is hard to describe what it is like to have ability stripped away from you. Loss after loss after loss. 

I wrote a blog post for advent and had to write a bio, but I didn’t know what to put because I don’t have hobbies anymore. Or work. “She lays down alot,” maybe. My kids would say that’s accurate. 

I’ve actually been pretty happy, thanks mostly to getting off the gabapentin/hell and back on the Wellbutrin. I’ve been deeply grateful for that. But there are definitely hard days where the only goal is to survive each moment with as little harm inflicted upon myself as possible.

I’ve become my own personal coach, therapist, and occupational therapist. 

I have a pretty clear idea of where I want to go with this—deep acceptance, creative adaptation, shining so bright everything else is faded in comparison. But at the same time, some days I despair that I’m just going to be all spirit by the time this is done—no mind, no body, just all these soul lessons of letting go letting go letting go.

There’s a lot of letting go. 

But you have to walk the line between letting go and giving up. And some days it’s about letting go and holding on. Tricky.

Where do I want to be a year from now, whether things stay the same or get worse. (I suppose they could also get better.) Do I still want to be stuck wanting and wishing and struggling against? No, absolutely not. First, because it sucks. Second, because it’s only a first step in the process, and I don’t want to plateau here. 

Integration. That’s what I have my eye on.

I want to make this path of integration the most effective and efficient possible. Use all the tools, not get caught up in dead ends or mucking around in self harm. But of course that also means letting things take their time. Very dialectical, everything.

So I’m tending to my mind. I can’t control its first response, but I can choose where we go from there. What is the path forward. 

I have a note on my phone where I write meditations in very specific moments of need, calling my higher self, my truer self out of the claustrophobia or isolation or panic or despair. Eye on the prize.

This is very “We’re Going on a Bear Hunt” territory here. You can’t go under it, you can’t go over it, you have to go through it. Every freaking time the only answer is through. You have to go through it. Though it. Deeper. More embodied. More presence. No escape. Back in we go.

I put on makeup every morning as a talisman. Every morning I wonder if I will cry my mascara off today, but I put it on anyway, a stake in the ground saying it can be both. Both mascara and crying. Beauty and pain. And nothing seems as bad when you pass the mirror and you look fine. Or, fine, as the case may be. 

I shook my bootay to the three Lizzo songs I have on repeat bc, neurodivergent.

I went outside and walked around the block. (Walking = strenuous)(Sunlight = necessary)

I talked to people who love me.

And I spent a lot of time on instagram. I have been so grateful for instagram, it has been a true saving grace. I have laughed so much. So. Much. If all you can do is lay down and scroll with one hand, why not do some laughing?

So that was November.

At the beginning of December I had my first botox appointment with my new awesome neurologist. I went in with no expectations that the botox would help, since it hadn’t helped the last two times. I had spent the month of November really really deep into disability, and part of that was accepting that “tremors are tricky” and the new meds weren’t touching it and it was just getting worse. 

My previous neurologist would take the botox syringe and put some in here, and some in there, here and there, here and there, in the muscles of my neck that control the head.

My new neurologist hooks the botox needle up to a machine. It’s a very cool machine that senses the contractions of the muscles and makes them audible. Then, she uses the sound to help her target the injection more precisely, and to help determine how much to use. 

I recorded the last three injections for our listening pleasure. You may now click the audio above. :) You’ll hear the buzz of the machine, then, when the needle is inserted into the muscle, you’ll hear a harsh repeating sound. That’s the tremor. When the tremor sound begins to fade, that’s when she’s injected the botox so the machine can’t sense it as strongly.

I’ve only been able to describe the experience of the tremor as though it’s loud in my body, but it doesn’t actually make sound. To be able to hear it, to be able to send it to people and say this is what it is—when does that happen in life? Imagine other people being able to hear your cramps or your neck pain or your anxiety? Insane. Very very satisfying.

Anyhow, I got the botox on a Monday, and by Friday it began to make a significant difference. I had times of wondering if the tremor was actually even going. Of course, when I paid attention, it was still there, but the fact that I even wondered was incredible! The tremor has continued to change as the botox has settled in (it peaks at six weeks). Currently it seems like more of a wag, and it is once again responsive to whether I relax or tense my body. (In November, it didn’t respond to anything I did, ever, other than lay down. And for one awful week it didn’t even respond to laying down.) 

And all of that was great. But. 

The whiplash was real. I had just finally gotten my mind around things, I had just finally gotten the hang of a workable routine and accommodations, I had just made it through the big First is Worst part, and then…what? What am I supposed to do now? And what is the tremor going to let me do now? 

And then I got covid. 

Yay!

Not yay. Covid sucks. It sucks so bad. Wear a mask during the holiday season, and plan to do so every year indefinitely, please for the love of God who loves God’s vulnerable and suffering children. 

So I’m back to laying down a lot, which isn’t answering any of the big questions. But I am able to type. On the computer. Which is a bloody miracle. And I can’t even feel grateful for that right now, because I’m still reeling from the whiplash and I’m not sure what/how to trust, and it all kind of makes me feel sick to my stomach. 

Or maybe that’s the covid.

Or the propranolol.

Or the fact that I haven’t eaten lunch because covid appetite = zero and typing is so fun and I will never take it for granted again.

Update: I originally wrote this post on December 12, aka Day 6. Since then, I’ve been absolutely bulldozed by Covid fatigue. Hello, Day 14. The day I had to let go of my short, slow daily walks in the sunshine was a hard one. Watching everything I had cleaned with my blood, sweat, and tears get dirty and know that I’ll have to start all over again to get it back to maintenance level is irritating and depressing in turns. You can just call me Elsa, letting it go, letting everything go, and then letting more things go. 

It’s been day after day (after day after day) of being able to do nothing other than amuse myself by posting pictures of languishing Victorian women and laughing myself silly on my instagram stories. Also a lot of managing my thoughts and feelings with an iron hand and an iron will. So much isolation this fall. So much. 

Bracing myself for a return to dealing with the tremor—I haven’t had to deal with it because I’ve been laying down all the time. Grateful? So next on the list will be figuring out what I can and cannot do with the post-botox tremor situation and trying to scratch out an entirely new life for myself. Yay.

BUT, I think I’ve finally turned the corner on the fatigue, tentative glory be. Tentative booty shake. Tentative hop of joy. Hup hup hup.

So that is the short version of what’s been going on. I haven’t been ready to share. It was too raw, too new, too difficult. But now I am ready. And I thank you for holding this with compassion. 

Oh! Please do not send me any crying or sad emojis, they make me feel bad when sent in response to my life. I prefer hearts, dumplings, or other whimsical emojis of choice.

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