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Dark at the End of My Tunnel

Let me start by being perfectly clear: I am very much in favor of vaccination. From the first time I heard about it, I thought the whole anti-vaccination concept was ridiculously unscientific; now, with the additional knowledge that comes from my study of autism, I am even more aggravated and incensed by anti-vaxxer rhetoric.

Which is why it’s extremely embarrassing to admit that I am almost as terrified of the coronavirus vaccine as I am of the actual coronavirus, and there’s a good chance I won’t participate if and when we get one.

To understand why I’m reluctant to practice what I preach, you have to go back four years. In the spring of 2016, I started experiencing sharp pain in my back around each of my shoulder blades, which after a couple of months flared one night into an agony so far beyond anything I could previously have imagined that no metaphor will even touch it.

That agony lasted four days on the right side, and ten weeks on the left. Early on, the pain was so bad I couldn’t sleep for more than about five minutes at a time; I went two weeks on about an hour’s sleep per night. I started vomiting simply from exhaustion. Even after that, my sleep was never deep or restful or sufficient, and when awake I could barely string two thoughts together in succession before being interrupted by the next wave of OH GOD PAIN PAIN PAIN.

I was utterly wretched. I wanted to die.

Also somewhere around the two-week mark, I started to lose control of my arms. For roughly the next year, both arms only worked from the elbows down; I called them my T-Rex arms, because they were just about that useful. I lost strength in my hands, particularly the left one; there was one frightening day where I woke up with no control over my left hand at all. (It slowly came back over the course of the next eight hours.)

A lot of what functionality I possessed went into combing the internet for some idea of what was wrong with me. Eventually I figured out that I had Parsonage-Turner Syndrome, an autoimmune disease wherein your body attacks its own brachial plexus nerves. The paralysis occurs because certain muscles become de-enervated and nonresponsive.

There is no treatment for PTS: you either get better on your own, or you don’t. Only about 4% of people who have it make a full recovery; the rest regain some functionality but not all. I have probably 90% of my prior flexibility but only maybe 70% of my strength. I found a medication (Lyrica) which dampens a lot of the residual pain; I only have something like four or five painful days a month, now, and that chronic pain is nowhere near the level of the acute phase. I also have paresthesia on my shoulders and upper arms which makes me randomly feel like I’m being stung by ants. The only relief for this is intense scratching, which often results in raw spots and scabs.

And on the whole, although my attack was worse than average — the typical flare is unilateral rather than bilateral, with an acute phase that lasts around two weeks, not ten — my recovery was faster and better than most, occurring in around one year rather than two to four. I belong to a large Facebook group for PTS sufferers now, and I’ve seen a lot of people who have worse outcomes than I do, including permanent hand paralysis. I count myself lucky, all-told.

However.

PTS is not always one-and-done. The best available statistics show that about 25% of us experience multiple flares, and that could easily be an undercount, as PTS is very often un- or misdiagnosed.

The science around PTS (as with many rare diseases) is hardly what I would consider adequate, but all indications suggest that it is the result of an environmental trigger working on a person who is already genetically susceptible to autoimmune conditions. The known triggers are mostly immune-related; the most frequent cause is viral illness, followed by vaccinations.

This is not a made-up thing like the MMR vaccine causing autism; this is a very real phenomenon, scientifically-documented if imperfectly understood. Viruses and vaccines both can and do trigger autoimmune disorders like the one I had. (So do childbirth, surgery, and bacterial infection, among other things.)

Then from the other end of things we have the early science around covid-19 and its damaging immune-system interactions: from adults with cytokine storms to teens with Kawasaki-like PIMS. There’s already decent evidence that covid-19 can sometimes induce the autoimmune form diabetes, and definitive evidence that it has induced Guillain-Barré Syndrome — which, like Parsonage-Turner Syndrome, is a peripheral neuropathic autoimmune disease — in some patients.

I don’t know what my odds of a second PTS flare are now, but they have to be somewhat worse than the already-high one-in-four of non-pandemic existence, and they might be a lot worse.

And the thought of going through that kind of pain again terrifies me. I don’t know how to even begin to explain the level of pain involved. Right now my stomach is clenched, and I’m trembling and leaking tears, just from thinking about it. Not to mention the fact that next time I might not be so lucky; I could lose permanent functionality in one or both hands, or not recover enough strength in my arms for them to be useful.

It’s become clear to me in recent weeks that I’m exhibiting a trauma response: my PTS, it turns out, gave me PTSD. Unlike the complex PTSD from my abusive childhood, this one did not affect my daily life at all — it was essentially completely dormant — until the pandemic came along and my risk shot up. But now, whoo boy.

This puts me in a different place from everyone else that I know. I mean, covid-19 is scary as fuck anyway; every few days we learn something new and horrible about its effects, and I suggest that anyone who isn’t scared hasn’t been paying attention. Even for healthy young people it’s like playing bloody Russian Roulette.

But at some point there will probably be a vaccine that, for most people, will lower their risk to a reasonable level. For me, the risk of the vaccine, while not as great as the risk of the virus itself, is still far, far above the ‘acceptable’ threshhold.

Will I get a vaccine if when one becomes available? I don’t have enough information yet to make that decision, but there’s a very good chance that the answer will be ‘no’. Not only is that hard to explain without sounding like an anti-vaxxer, but it also means that unlike everyone else, I can’t really imagine a better future for myself. The best-case scenario has me isolated with no company but Jak for several years; the worst-case, forever.

It’s a bleak thought, and not one that I can stand to dwell on all the time, but it is something that I would like people to understand about my situation: that for me, there is no relief on the horizon. The combination of life in a foreign country and (what I now know to be) autism had already dropped me into a place of deep loneliness, but I have never felt so forlorn in my life as I do now.

Published inDisabilityPandemic

8 Comments

  1. Michael Gills Michael Gills

    I’m so sorry for everything you have been through my dear friend. I miss you and very much appreciate your bravery in sharing your challenges and helping others through your doing so.

    • Karawynn Karawynn

      Thank you, Mike. That means a lot. (Although I doubt I’m helping anyone else just at the moment, I hope that I can on another day.)

  2. David Gates David Gates

    I am, of course, moved by your post. I do want you to know that I am sorry for your suffering. Naturally my first response is to offer some sort of encouragement or ‘solution,’ but I realize that is not what you need or want. So I will just stop and say that I have read and understood what you have to say. I am interested to read the next post, and to follow your story as it evolves which I’m sure it will. I’ll be listening.

    • Karawynn Karawynn

      Thank you, David. Yeah, it’s not really a fixable kind of thing, but I appreciate the thought.

  3. Jeff Edwards Jeff Edwards

    I’m so deeply sorry that you’re going through this. If you have to be isolated, Jak seems like a good person to face it with. Wish I could offer more encouragement than that.

  4. Cindy Cindy

    I can say that I hear you and that there’s no way to really understand, but I do stand with you. I hope you don’t mind if I share a little of my own stuff. If that’s not what you want just now, just stop reading. I get that.

    I can say that I have had Lyme disease twice (caused by a bacterium, not a virus) and my immune system has never been the same. All kinds of weird stuff happens. There’s some research that the same happens to ebola (viral) survivors, and post polio (viral) syndrome is now well documented. The term I read now is post-infectious syndromes. I have often been treated as though my wierd (but not as painful as you describe) symptoms are psychogenic in origin. I used to buy that; not I think its a pile of uneducated shit. I hope that the medical profession has been on your side, and appreciate your incredible ability to research.

  5. Karawynn Karawynn

    The medical profession on my side? Hahaha yeah no.

    I am sorry to hear that you’ve got chronic issues, Cindy. I know exactly what it’s like to be dismissed and disbelieved, gaslit and told that it’s all in your head. Funny how that happens most often with women, yeah?

    Not only did every doctor I saw fail to correctly diagnose me, but even after I had self-diagnosed my PTS, I couldn’t get any neurologists to listen to me or believe me. I would show up with a stack of printed evidence from reputable sources, and they would either flip through and dismiss it within seconds, or refuse to look at it altogether. So much condescension it makes me rage.

    I eventually realized that since there is no known treatment for PTS, and the drugs I needed for the chronic pain are OTC here, I should stop banging my head against that wall.

    But no, the medical profession and I do not have a good relationship.

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