There was this one time that I had a collapsed lung. It’s a pretty funny story, albeit one best left for another time. For today’s purposes, you just need to know how it ended.
When I arrived (on foot, of course) at the ER clutching the note Pittsburgh’s finest had helpfully affixed to my dorm room door, a pair of doctors was waiting for me. A quick wheelchair ride and an x-ray later, I was on a bed having a huge needle shoved into the side of my chest:
“We’re gonna stick this big-ass needle in your chest.”
“Oh. Okay. Cool?”
The nurse explained that sucking the air out of the sack containing my lungs and heart would keep the atmosphere from crushing my lung any further. She neglected to explain the reason I’d soon find a tube running from my chest to a giant white box, which I would be carrying around the hospital for days like some sort of nerdy, crippled, white bread version of Radio Raheem.
After a night in the hospital, I had a another conversation with the medical team:
“We were wondering, do you want your lung to collapse at some future, as-of-yet unpredicted time?”
“Um. Well. No?”
“Cool, gotcha. We’ll let the surgeon know.”
Based on that conversation, some folks cut another couple of holes in my chest, one for the camera, and the other for the high-tech medical equipment that was all the rage in the nineties: a knife, a pair of forceps, a stapler. To this day, I’m still not sure how it’s possible to staple a lung back together. On the plus side, I’ve gone fourteen years without having a lung collapse.
I was thinking of that story last month, when my electrologist was sticking a probe into my scrotum:
“There are two basic kinds of electrolysis: thermolysis and galvanic.”
“Yes, I know.”
“I’m going to insert this probe into your hair follicle.”
“Yep.”
“And then when I activate the machine it’ll…”
“Blah, blah, blah, blah, yeow!”
Once I came down from the ceiling, (Word to the wise: if a stranger is gazing through a giant magnifying glass while fussing with a probe in your genitals, do not move. Trust me.) I started to retrace my steps.
I spent a lot of time on the Internet looking at pictures of genitals prior to that day. Not, mind you, erotic pictures, but rather cold, medical, disembodied junk. I even had printouts to bring in to my electrologist. Fun times.
I brought the printouts to show my electrologist of choice the area from which my surgeon of choice suggests hair be removed (I hear that ingrown hairs are a pain).
“Choice” is a bit of an overstatement on my part. Being trans* isn’t like having a collapsed lung. I can’t just go to the doctor and expect to have folks give me the care I need. Rather, I need to research my own care, and locate my providers. Assuming I can get to them, and find the money to pay them, then yes, I can “choose” between any of the options available (if, of course, it is safe to use the plural form).
This is why I was relatively unsurprised a few months back when I found myself Googling “laser AND taint”. I imagine that this is what my trans* friends with Internet access do on Wednesday nights, too.
In the name of being my own advocate, I carry around a ridiculous amount of medical knowledge. When I meet a new doctor, it’s a good bet that they have no idea what to do with me and my body. While I’m relieved that most doctors have treated me like a human being, I’ve found that even doctors claiming to know what they’re doing when it comes, say, to prescribing hormones, may know less than I do about the subject. If I’m going to the doctor, it’s important for me to take my notes.
And while I’ve been fortunate enough to find specialists here in Syracuse, I think this is unusual for most trans* folks living in smaller cities. While I came out in Madison, I went to therapy in Milwaukee (70 miles away), and got my hormones in Chicago (150 miles away). I didn’t find these practitioners in the phone book under “gender transition”.
Researching treatment, scouring my contacts and the Internet for potential providers, and figuring out how to pay the bill: none of these things was on my mind when I wobbled into the ER of Presbyterian.
I assure you that I am not unique. For millions of people, figuring out how to pay the bill is a defining feature of our medical system. As for pouring time into locating, vetting, traveling to, and educating practitioners, trans* people are not the only ones faced with these burdens.
This is what marginalization looks like. Having access to health care is about more than getting an insurance company to pay one’s bills. It’s about being able to focus on living one’s life and maintaining one’s health. It’s about healing. When socially-accepted people need socially-accepted medical care, this is what happens– they go to the doctor and the doctor takes care of their needs.
There are fewer providers catering to marginalized peoples’ needs. Why risk one’s career to work in a specialty that your medical school won’t discuss, your colleagues don’t universally respect, and your patients can’t afford? With fewer, and frequently less-knowledgeable providers, the burden falls on patients to figure out precisely what procedures they need performed, how they should be performed, who will perform them, and how they can reach these professionals who will perform them. The cost in time, energy, and money is more than many folks can afford.
Making oppressed people go to all that work is also counterproductive, provided that the goal of the system is to make people well. It isn’t. As far as I can tell, the massive mental, physical, and financial strain that society places on some patients is a feature, not a bug. We are not meant to be well.
Society does not intend for us to have abortions, so we need to harness all our resources to simply be able to find ourselves at a facility where having an abortion is possible. Society does not intend for us to be fat and happy, so we need to be prepared for potential dehumanization before every visit to the doctor. Society does not intend for those of us with disabilities to mingle with our temporarily able-bodied brethren, so we need to be ready to fight every doctor, nurse, and administrator that we interact with. If we have the “wrong” needs and/or the “wrong” bodies, going to the doctor is decidedly not routine.
Sometimes, we have the reserves of time, impatience, energy, pride, and money to get the treatment we need. Sometimes we do not. This is what we need to change. We need to create a world where we care for each other, where we do not punish each other for daring to have bodies.
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