The following is an excerpt from “Trans & Disabled: An Anthology of Identities and Experiences,” edited by Alex Iantaffi and produced by Jessica Kingsley Publishers.
There is the narrative that as time moves forward, civil and human rights will become a universal priority. But this is naïve. It’s still a gamble for every trans person who needs to access healthcare. In fact, though awareness and respect have grown, the odds always favor the house.
I don’t actually remember how I got to the ER that morning when my sodium was 118. I don’t remember how long we had to wait before going back to the little cubicle room. I do remember the ER staff lost the first round of bloodwork because they forgot to label the vials of blood before sending them through the magical medical pneumatic tubes. And I remember Eddy by my side the whole time. And I remember my primary care doctor coming by to see me and hearing her advocate for me with the ER staff. I remember feeling frustrated and confused. I remember trying to explain to multiple people that I was a brain tumor survivor and had just had brain surgery six months earlier, and as a result, I have a lot of complex endocrine-related conditions now, so they needed to consult someone from endocrinology before coming up with a treatment plan or they would easily kill me.
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I know Eddy had contacted my regular endocrinologist to let her know I was going to the ER with low sodium. She gave us her cell phone number to have the attending doctor contact her to talk about my complicated case. I think that the longer I sat on the uncomfortable hospital gurney, entangled in wires attached to beeping machines, the more it dawned on me that I indeed felt pretty weird and not OK.
One of the side effects of low sodium is hallucinations. For me, they were brightly colored, ever-changing images swirling in the darkness. That is my lack of sight with an accompaniment of weird ethereal music playing in the back of my head. Since this had happened before, when I was in the hospital after my brain surgery, I wasn’t surprised by it, but it is still very distracting. I was in a jungle or maybe a rainforest. There were plants, trees, brightly colored birds dancing amid the undulating, multicolored ferns and fronds.
I remember a knock and the sound of the sliding door of my cubicle opening, pulling my attention out of the rainforest dance party. I heard a new, confident-sounding doctor voice. It was the voice of the head of the endocrinology department. He introduced himself and the small pack of med students who were following him around for the day. I’m not sure how many there were—at least three or four people; it sounded like a crowd of tourists had scrunched itself into my little stall.
I started reciting my explanation of how I had ended up here today, how low my sodium had been at the clinic earlier, and the symptoms I was experiencing. I explained that I have panhypopituitarism since the brain surgery. In concert with that, I was concerned with adrenal insufficiency and diabetes insipidus, which was likely the root of the low sodium. I remember feeling that I was explaining things well, despite all of the dancing plants and animals.
I heard the clicking and typing sounds of him pulling up my chart on the computer.
So what’s your surgery status?
Well, they took the tumor out.
No, no, I mean your trans surgery status?
(Me, confused) I don’t really think that’s relevant, but it should all be in my chart. I had top surgery like 15 years ago and I have not had a hysterectomy.
I don’t clearly remember what happened after this, other than my absolute bafflement. I remember thinking that it was lucky that I am comfortable talking about my trans status in the context of medical history. Had I not been, it could have been much more awkward, even destabilizing. I ended up staying in the hospital for ten days, having to interact with this doctor, always with the lingering feelings of awkward vulnerability. Now I know that I should not have answered his question. That I should have stopped talking after saying, “I don’t really think that’s relevant.”
I remember this hospital stay as a constant struggle, even with the presence of some excellent nurses. I remember several big mistakes made because some of the doctors would not listen to me or Eddy. When we explained my condition, they didn’t take us seriously or they were too overconfident and arrogant to admit they didn’t actually know what to do and were resistant to having my regular endocrinologist consult on my case. I remember the relief at finally being discharged: they hadn’t caused permanent brain damage or killed me.
I remember, too, lying half awake/half asleep in the hospital bed, listening to TV news coverage of Hurricane Harvey pummeling the Texas coast, where I grew up. I was thinking, wow, I know how that feels. The inevitability of the storm making landfall and the precariousness of being a little human in the force of a massive looming storm. Will the flood waters wash me away completely? Will I get a good power-washing and come away unscathed? There’s no way to know beforehand.
