Dear Everyone I Know,
I have MS and it’s really changed my perception of everything, so I wrote some more about that:
In 2017, a few months before I turned 26, I started losing balance when I was running and getting vertigo when I got out of bed and stuff, so I had an MRI. If you haven’t had an MRI, they’re super loud and kind of oddly relaxing. They’re also mad expensive, but that’s a whole nother tirade.
A couple days later, a nurse called me at like 7am on a Thursday and told me my immune system had broken into my brain for no apparent reason and screwed with the protective coating around the neurons that signal motion and senses and stuff. This is MS, and while there’s no cure, there are a hundred thousand somewhat promising, at times proven, lifestyle changes I could or could not adopt in order to extend the possibility of slowing its progression.
Above all though, this nurse explained, it was absolutely crucial that I avoid stress, establish and maintain a hearty support system, and forbid the disease dominate my life. Do you have any questions? they asked. I said no, cause I couldn’t think of any. Then I hung up and made a pot of coffee and went and Googled what MS was.
Then, like clockwork - the very next day (!!!) - life kept on going. I saw some more doctors and got told a lotta things like, you may or may not be subject to debilitating neurological damage for the rest of your life and, this may or may not involve your sight, balance, speech, mobility, sense of touch, taste, or smell, memory, overall independence and/or quality of life. Your symptoms may or may not be permanent and you may or may not be able to keep on keepin’ on as you were and always had been and always thought you always would be.
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MS is a baffling combination of something entirely out of your control, and something that (with great dedication and diligence) can - possibly, potentially, partially - be dislodged from its stubborn resistance to resolve, reined in, and managed like a petulant teenager. Thing about teenagers is they have a tendency to go above and beyond any perceived capabilities just to be unpredictable.
I walk with a cane and get tired a lot and my handwriting sucks, but in a lot of ways I look and act healthy, young, and energetic. To that end, sometimes it's all really tragic and sometimes it’s not. Sometimes it’s just annoying, Sometimes it’s savagely, mercilessly annoying. Sometimes my nervous system seems to turn on an otherwise ordinary dime, read the room that is my spine, and get a goddamn grip. Sometimes the tremendous will and focus it takes to cross the apartment or the street is scary enough to stop me in my tracks. Sometimes it’s as much and sometimes as little a part of who I am as the day I was born and the diet I eat and the company I keep.
Bear with me a minute longer and remember taking math tests in high school. Losing agency of your body is a little like (somehow) intuitively knowing all the answers going into a math test, but you don’t remember how to solve any of the problems and you have to show your work or you won’t get credit. You know how to run and jump. You know how to see and how to hopscotch and how to do ballet. You know how to not fall. You know the right number to circle. Still, if you can’t show how you got there, your answers are irrelevant.
There’s no foreign invader here, no war to wage, no heroism to muster. No territory to reclaim and nothing to negotiate. Feels to me like more of a Jekyll-&-Hyde-of-the-nervous-system situation, in which your brain has been parceled into what will abide by you and what will just straight up ignore you.
How do you fight to eradicate an enemy that is also a misguided part of yourself? Riddle me that.
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I say it’s changed my perception of everything, and that is very true. Acquiring disability reoriented my whole perspective on the world and the self, on participation and contribution, in ways that I truly believe would be otherwise unimaginable.
From a societal standpoint, I’ve been made freshly sensitive to what’s available to who and with what ease and at what cost. I turned 26 and finished college with this new and somewhat sudden sense of being inconvenient. Being a white, educated, cis, hetero, skinny, middle class woman, the world up till now had seemed more or less built to accommodate, include, and verify me. To this end, actively accepting being an inconvenience, taking forever to do everything, requiring things like elevators and railings and patience in abundance, was and is a palpable weight to shake.
Disability can really put a damper on your productivity and so it’s a real inconvenience to our society at large, too. As such, becoming disabled and declining in perceived value really brings you face to face with capitalism. After dismissing you, it calls after you, berating you with all it would have you accomplish could you only make it your priority to be the most tireless, most reliable, most exquisitely ordinary cog in the great machine of loss and gain we live in. But in the meantime, there’s fallout from your bombstruck neurons and there’s not enough of you to shelter you from yourself and have you tried yoga?
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It seems I got dealt from a dark deck, so if I’m to sign off on the upside, I will say that enjoying life is kinda the golden egg I got in that deal and it makes for a pretty strong hand. In the past I remember wishing things would slow down and despite myself I seem to have seen that wish granted. Lo and behold, it is relentlessly, indescribably, interminably frustrating. But you really do notice a lot more in slow motion.
