Darkness. That's all there ever seems to be, anymore. It's not that the sun isn't up there, not that the landscape isn't touched by its rays. It's just that it doesn't seem to matter anymore. Everything is just... gray. It should be colorful and bright, enough to cheer anyone up, but it isn't. Just gray. It's not even that you can't see the colors, noting a little yellow in that gray there, a little dark green in that one. It's just that they don't matter, that they don't touch you like they used to. Just enough to let you know something's wrong.
That's the story my parents woke up to when I was eleven years old.
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Kids get sick. It happens. They get better, too, little immune systems kicking into gear and storming their way through all the standard childhood illnesses. From chickenpox to sore throats, and sometimes even to cough-I-really-don't-want-to-go-to-school-today-cough-no-really-I'm-sick-cough, parents are used to their kids being down and out once in a while. That doesn't mean they don't worry, or take care of them, especially when they're very young, but it does mean that there's an expectation that they'll shake off most things and be okay with a doctor's visit, a little bit of best rest, and maybe some penicillin. I didn't.
You see, when I got an ear infection, followed by a sore throat in the summer before my sixth grade year, I was pretty miserable, but it was nothing unusual for a kid to have, or to get over. The trip to Denver wasn't much fun once my ear flared up halfway through the trip, aching so badly I could hardly focus, but a few days at home and I was better. Except for the cough. That lingered a little while.
Kids think they're invincible, don't you know? And so did I. I bounced around, thinking nothing of it, as coughs are usually the last thing to go. I'm not sure what my parents thought of it at the time, but I don't remember us really give it a second thought until I ended up with strep throat a few weeks later, just as the school year began.
That wasn't very much fun. Stuck in bed, hardly able to eat, I missed about a week of class before feeling well enough to return. The shivers of fever subsided, and the acid at the back of my throat cooled, but the cough remained. For a little while longer, we chalked it up to the sore throat, a not unexpected hold-over, but then it got worse.
By the time things started heading towards Thanksgiving, I was in a very bad way. The cough wouldn't stop, day or night, and I quickly grew exhausted. Harder and harder, my chest wracked itself, but there was no relief, just a tickle at the back of my throat that would never go away. Eventually, I was asked to leave school until such time we got it under control, as I was disrupting class for all the other students.
Steroids were tried, as was some sort of inhalant device I can no longer remember. I'm not sure what was in that one, but it caused the worst attack I had ever had, to the point where I almost ended up in the hospital (it was administered in a small clinic). My parents tried everything, but nothing worked. Eventually, psychological possibilities were looked into, and we started driving deep into the city of Chicago to see one of the few psychiatrists that seemed to have any idea what was going on. Things still had a long ways to go, though...
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I don't remember when the tremors started. We called them tremors because the doctor did, but they were essentially seizures, my motor neurons going insane and firing all at once in tremendous waves of activity. It would start with a little fuzzy feeling somewhere back inside my brain, as though someone was tickling me along the border between my cerebellum and occipital lobe. Eventually, over the course of minutes, or even hours, I would feel more and more energy leaking upwards into my brain and fanning out towards my fingertips, millimeters at a time. I could hold it at bay for a while, but like a static charge building up in a thundercloud, there was no stopping it. And the longer I waited, the worse it was...
If you've ever been electrocuted before, felt the jolt as you lost control of your muscles, you'll know about what I experienced, minus the burns. Every muscle spasming, flailing wildly for minutes until all the energy in every cell was utterly exhausted, leaving me twitching, shorted out on the bed or couch. The doctors were flummoxed, though my family doctor, Miroslav Kovacevic refused to give up on me. A friend of my dad, he was the one who found the specialists, one after another, and kept trying. I can't even imagine how long he was up nights trying to find anything to help, but I know he must have been, because he cared. I know my mom and dad sure were.
About six months in, Dr. K, working with the psychiatrist whose name I can no longer recall, had built up a theory. It didn't have a name then, but the gist was that there was some sort of correlation between anxiety, puberty, and an autoimmune disease. Signs were starting to point towards my immune system attacking my motor neurons, triggering some sort of periodic overload. Experiments continued, but I was basically out-of-commission aside from a few hours a day. Tourettes Syndrom was considered as a diagnosis, as was early-onset MS, neither of which my parents wanted to hear. I wasn't sure what they were, being so young, but now knowing what those are, it's terrifying that that was even a thought in my doctor's minds.
Eventually, we tried something new, an experimental treatment called an IVIG, which as I now understand, is used for many other autoimmune disorders. I don't remember the details of what it was supposed to do, but I do remember having a needle in my arm for 5 days straight while the cool liquid drained into me, resetting my immune system and leaving me vulnerable to further disease. For three years after that, I was required to take daily anti-biotics as a precautionary measure, but it didn't matter, because within days, the tremors started to fade away. I can't even tell you what that meant to me, or my parents, but even tears were insufficient. It took me the entire summer to catch up on my work so I wouldn't be behind a grade, but it didn't matter. I was healthy again. Mostly...
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Relapses are awful. Worrying about relapses is terrifying. Hiding a potential for relapses from your parents for years is just... don't. They still don't know this, and I doubt I'll ever have the heart to tell them, because they've been through so many terrible things since then with my brother, but every single day I know it could come back. If I ever overloaded to a certain point, it could, and I don't know what I'd do. You see, that tickle in the back of my brain? It's never gone away. And when I'm stressed, it grows stronger, buzzing against my hind-brain... I have to be *very* careful.
I still have lingering neurological damage from the episodes too. Muscles all over my body, from my arm to my back to my legs will trigger randomly, small bundles twitching outside of my control. Sometimes it's my whole leg, spasming for half a second. It's disconcerting and harmless for now, but I am keeping an eye on it lest it grow. Just another thing to worry about.
Those of you who know me know that my memory is just awful. I don't think it always was, but, ironically, I can't remember. For now, I can only assume my ability to remember things was severely damaged by this experience, meaning I have to intuit pretty much everything I do. Luckily, I'm pretty good at patterns, because rote memorization is out for me. (Note that this means that this story is also a recollection to the best of that memory, and the dates and times are most certainly not 100% accurate.)
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Since those days, it seems that quite a community of folks have come forward working on and dealing with a disorder that now has a name. PANDAS, short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is an autoimmune disorder where the immune system basically triggers against your own neurons with all sorts of ramifications.
Reading for those curious:
http://www.nimh.nih.gov/health/publications/pandas/index.shtmlhttp://www.chicagoparent.com/magazines/chicago-parent/2012-august/features/pandas-------------------------------------------------------------------------------
P.S.: Interestingly, it was 1998 when I treated, the same year a paper came out proposing a classification of the disorder with the first 50 cases. I'm not sure if my results were included in that paper, but that would be something, wouldn't it? If nothing else, I was one of the first diagnosed in Chicago. Though, truth be told, if that's my claim to fame, I'd like it back please... Something else would be a bit more enjoyable than this. :/
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