DEAR BEN,
I should preface: I don’t consider myself to be much of a journalist. This is the result of something in between inspiration from you and a drive for you to know that you’re not alone in this endeavor.
It’s worth knowing that I’m critically disabled in a lot of ways. I’ve got a heart that sometimes decides to pumps blood backwards, a nervous system that can’t regulate the automatic stuff (heart rate, blood pressure, body temperature), and non-stop pain that’s been research-proven to be more painful than both childbirth and cancer.
Jesus. It’s kind of depressing when I lay it out like that. ANYWAYS.
There’s also the fun part of my particular disability cocktail: THE FAINTING. I personally have two types, though this isn’t the case for everyone. There’s the predictable, where I get a warning (heart rate spike, chest pain, muscle weakness, changes to vision, etc.). And then sometimes, I just get hit by a FUCK OFF amount of pain/dizziness, and it takes me down with no warning.
And I should note that I’m NOT telling you this as a “fuck you, you’re not special” type of thing. It’s to (a) contextualize all the things I say next, and (b) to tell you immediately that you're not alone in having a body that doesn’t always cooperate.
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You say it well: “there’s a massive difference between telling someone that an injury happened and seeing the injury play out in real time.” (And yes, I have your article up on one monitor and my website up on another. I will be quoting you repeatedly.) While I have no orange vials to whip out during class, I do have a 16-slide Canva presentation. I mean, people see the cane and make their own assumptions. Some of this comes up in my day-to-day. But there’s a select group of my friends that need to understand in a little more detail what could happen.
You’ll be shocked to hear that the tubas are my primary support. Shortbread was the first to get the presentation, followed soon by ‘vette and Shaft. Slayer got the presentation during band camp this year. When we were setting up for the VTubathon last week, I collapsed in the MVC. Slayer had the joy of opening the door to the tuba room and seeing me OUT on the floor. While it wasn’t my first time collapsing in the MVC, it was Slayer’s first time seeing it happen ever. Since then, he’s kindly informed me that a 16-slide presentation is NOT enough to prepare anyone for seeing my unconscious body.
The Canva presentation had explicit instructions. I’m told he forgot most of them, in that moment.
So yeah… there’s very little that can prepare people to see something like that play out in real time. That’s the harsh reality. You’ve experienced it, and if this ends up being something recurring (WHICH I HOPE IT IS NOT), that process of preparing others will not get but so much better over time.
I mentioned collapsing in the MVC, and I should tell you that this is a frequent occurrence. I faint pretty much every day (though that’s improving on my current medication regiment). That includes:
the Marching Virginians Center
stepping out of class and passing out in the hallway
passing out IN LANE STADIUM on game day (which is one of my least favorite spots)
That being said, the first time I went back to the MVC after fainting there was weird. I don’t know if you experienced the same thing, but there’s something odd about walking past a place you’ve been unconscious and going, “Yep. There’s the place. That’s where my body was OUT COLD.”
Now. As I’m sure you know, fainting (especially in public) is not a super… great process. And technically, there is a way for me to not do it again. That way would be for me to give up almost everything I love and be bed-bound. But… well, “stubbornness would go on to win against my own health.” I choose to continue doing things that are technically detrimental to my health because these are the things I love. But there’s also a harsh reality: after eight years of being a member of the Marching Virginians, my body is giving out on me. It’s never been the best, but with the way things are looking, there’s a chance I only have about two more years of walking left. I intend on spending those two years on my feet fighting, with the music of the Marching Virginians ringing in my ears.
I’m not saying that you should do this or that doing so was an option for you at that point. Your circumstances and mine were/are different in a LOT of ways. I’m saying that I understand the gut-wrenching choice between your health and the things that you love.
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I’ll take a turn in somewhat the same theme you did, so fair warning for discussion around mental health and suicide.
I’ve dealt with an amount of non-stop pain for as long as I can remember. It was difficult to recognize it because I thought everyone had it. I mean, after a game day of rehearsal, running through March to Victory, and jumping in Lane, everyone’s feet hurt! But mine had me stuck in bed, immobile, and my roommate (Slippy) was going hiking the same day.
At a certain point, the pain got SIGNIFICANTLY worse, and I started having to make changes to the way I was living my life. When those changes started to happen, it felt suffocating. I’ve had plenty of my own thoughts of “I can’t go on like this.” I’ve been stuck in bed, thinking, “I am tired and frail and ready to give up.” (Both quotes from you, but thematically aligned with my own experiences.)
Transparently, I’ve tried to take my life a few times. The most recent was about a year and a half ago.
(I’m doing SIGNIFICANTLY BETTER NOW. I do want to make that clear. I have a great therapist, a psychiatric team, more supportive disability doctors, and I’ve found an excellent community of friends.)
I remember being found, getting loaded up into a vehicle (do not remember which one) and in an environment where we ALL KNOW WHY I’M THERE, a cop just sighs like the world’s weight is on her shoulders (ha! Atlas pun), looks over at me, and goes, “So, kid. Shit day, or shit life?”
The only thought I could muster: “The fuck?”
Every nurse asked me about what I was studying. A couple asked me about partners. There’s actually a medical and psychological approach that’s supposed to help give a sense of grounding and normalcy, even in what is often the most difficult moment in someone’s life. Asking about those kinds of things also makes sure that everyone recognizes you as a person and not just a patient.
That said, in the moment, I’m with you: it feels like a jackass move to be sitting there bleeding while someones ask about my dissertation.
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It sounds like, from your article, that there are still some medical things to figure out. I’m not sure if POTS is still your current diagnostic protocol. You said you never got formally diagnosed. I don’t have POTS, but I do have a condition called fibromyalgia. Both are dysautonomic conditions (which is the “a nervous system that can’t regulate the automatic stuff” bit). if you decide to pursue it, you have something fun to look forward to (if you haven’t experienced it already): the tilt table test, which is the most common diagnostic test for POTS. I had my third one about a month ago, and while I shook like a leaf, I didn’t faint, and doctors concluded that I don’t have POTS. My heart rate reaching 180 while sitting down… well, we’ll figure that out eventually.
Like yours, my body also likes to remind me of the fact that something has happened. Like you, I’ve had the chance to learn a lot about how I handle conflict and how to make heartbreaking choices around what I can and can’t do. Like you, this process has been one of finding blessings in the strangest places.
Some of this stuff, I wish I’d been able to say to you earlier.
But now you know
if this becomes a thing for you
I admit, somewhat selfishly,
The only reason I can empathize
While my mobility aid is 100% a support to allow me to walk more, it also has the benefit of allowing me to look disabled. People expect me to behave differently because of it. It’s one of the reasons why I started using it; as you experienced, there’s benefits to presenting with “longstanding ailments of physical impairments.”
I can’t claim to be a particularly faithful person, though I admire that you are.