the surgery is never going to happen.
Updated: Aug 12
Friday July 24th, 2020 9:30 am
“I can drive,” I say to Bianca as she prepares me, dressing me with the robe she used the last time she had a procedure that needed drains in the aftermath. Jackie, my best friend since the first days of college, looks at me concerned. They’re sisters, and we’re in their family home: the closest place I know to the hospital, and the closest thing I can think of for my definition of the word ‘home’. “Oh c’mon, I won’t be able to drive for a while, and I feel fine.” I’m lying.
Something inside of me is telling me that it isn’t happening today, though I know not what.
Reluctantly, I grab the keys and suddenly we’re there. Due to COVID-19, visitors for procedures in any way, are not allowed (one of the many symptoms of the pandemic, including barely allowing me to have this surgery, given it is still considered “elective”, and cancelled in emergencies), so we take a photograph together in the car before I get out. As I walk away, I can feel the pit of my stomach being to boil the acid that’s been eating at it for hours, sleeplessly and without food since midnight.
I enter a barren hospital to the sounds of nurses scanning my pre-op work from five days prior with confused expressions on their faces. No one tells me anything when I ask. I am brought in to do blood work again, which I find odd considering the only two other people waiting for a procedure didn’t need it. I’m placed back in the waiting room without copies of their forms, only the blurry images I scrambled to take in case I’d need to protect myself in the future.
When I am wheeled into the operation room, I am greeted by an anesthesiologist, who I later on believed to be in there at that point as a distraction, considering that the whispering around my lab reports was growing, along with the volume with which I was continuously being deadnamed, and misgendered. My surgeon passes my paperwork and I see him double take, before deciding whether or not to turn back around, towards them. He chooses the latter, and begins to scramble with everyone else. I was ignored for about 15 minutes before my surgeon came up to me, seemingly afraid.
“I feel so embarrassed. I don’t know how to tell you this,” he says, looking down at the paper rather than into my eyes; I tell him to look into mine, and his begin to water. “Your blood is half as thin as the average person, and we do not know why.” I ask about the regimen for getting me through the surgery, what they’ll need to do to ensure I’m safe today. He swallows quite loudly. “If I were to put you on the table right now, you would bleed out, and die. Surgery will not be happening today.” He then says the last words I am able to hear for fifteen minutes. “I’m so sorry, I know how much this meant to you.”
My glasses and phone are in a locker somewhere on the other side of the OR, so I can’t see anything, and I’m alone, in this moment of trauma. A tantrum begins, screaming at every person who disrespected me about how they can’t do their jobs since my life depended on a surgeon's double take, along with many other shameful things.
How am I supposed to live, how am I supposed to survive, if my body prevents me from becoming my true self?
I throw a couple of objects across the room, whatever’s within arms reach at that point. Agony swells inside of me until I can’t breathe, causing me to be forcibly restrained by nurses. I am kicked out of the hospital with a number for a hematologist, told to call immediately. They aren’t going to send the paperwork yet, so in the middle of this traumatic moment, I have to describe it on the phone to a front desk person lacking the knowledge necessary to grasp the urgency behind my case, and figure out how to book the earliest appointment possible. Sitting on the ledge of the hospital fence as I considered whether or not traffic was the easier answer, I am booked for an appointment over a week from now. Just run into the traffic, then you won’t have any body parts to feel dysphoric over. I begin to start screaming bloody murder, a three-block radius of an audience with concerned gazes refusing to help or understand gawk silently.
I don’t know it yet, but surgery is 462 days away.
Friday November 20th, 2020 9:30 pm
The months have been very long, and life has made little sense. I’ve spent three months arguing with the hematologist I was referred to, who insisted that they were false reports and nothing was detectable, at one point reminding me of his decades of work as a rebuttal to the color-coded spreadsheet of possible diagnosis, causes, treatments and symptoms I made and brought to appointments after realized I was working with yet another powertrip transphobe. I annoyed him enough for him to give up and acknowledge my problems were above his level of knowledge, and was referred to another hematologist, who’s office tried to say they couldn’t see me until 2021. I called every other hour every single day for over a week and a half until they booked me in a cancelled slot.
Within a few appointments I was diagnosed, changing my life forever. I have a rare disease called *redacted for medical privacy*, which essentially translates to: your body has *redacted for medical privacy*, so *redacted for medical privacy* is watery and weak, can’t protect you from much, and your disease has no cure or meds or preventatives for when *redacted for medical privacy* starts to leak out of *redacted for medical privacy* and into the spaces in between your joints, into your GI system, etc. which goes on to effect mobility, and enhance your already effervescent chronic pain and severe tendonitis. There are only *redacted for medical privacy* [less than handful] other citizens of the United States currently alive with this disease, and I have a feeling I could be the only one trying to have top surgery.
What if I am the first person with this disease, to try to have this surgery? What if it’s the reason I can’t medically transition? What if I’m trapped in this hell scape forever?
I fear my dog will outlive me, I fear my partner will leave me due to the downhill disaster that will be my early onset physical deterioration. I fear that I will kill myself because I don’t know how to not want to every second of the day that I’m like this still. I fear that medically transitioning will be what kills me, which gives my estranged mother a reason to say “I told you so” one last time. I fear that her saying that will bother me. I fear it won’t matter anyways, since I’ll be dead.
While my paralysing trauma continues to settle in, heads of a few major hospitals in the city meet, in a discreet location, to discuss surgical methods that will keep a person with *redacted for medical privacy* alive. I was not the only one that was having surgery soon, a young child also needed an invasive procedure and all of the "biggest boys of medicine" in New York City had to get together to figure out how to save us from our bodies. The odds of two of us being in this city, needing a surgery at the same time, don’t make sense to me no matter how hard I try.
Ultimately, they choose an [incredibly rare and expensive] infusion plan, and notify my surgeon. My top surgery is rescheduled for today, Transgender Day of Remembrance. In preparation for the procedure, I begin to realize I am being ghosted by my physicians. I ask what’s wrong, and am informed the infusions were ordered and sent to the wrong hospital, and there would be no way to get them from there for use. My surgeon would need to meet with the head of my hospital to request them, stating the procedure causing the need for it, and in doing so…was rejected. “We were unable to approve your infusions, and will not be able to treat you for this moving forward. I wish you the best of luck in your search.” I was never given an explanation for the rejection, and I was never spoken to again by those physicians. I didn’t believe it could actually be true.
As a polyglot, I am often frustrated when speaking a language that doesn’t have a word to go for a feeling in the same way that other languages do. Spanish gets to the point in a much deeper way than English does oftentimes, same with French. There isn’t a single language, or a single word in the world, that could describe what it feels like to endure this. Grief, disbelief, hopelessness, worthlessness, rage, misery..all together, don’t even scratch the surface. I don’t want to be me anymore. I don’t want to be here anymore.
I don’t know it yet, but surgery is 342 days away.
Wednesday October 13th, 2021 2:15 pm
I am referred to a new surgeon by people I worked for at the time, who asked me to write this article and ultimately don't end up publishing it, regardless of the impact I was told it would have for me to write of this experience the moment I woke from going under.
The new surgeon made sure to talk over my story, reaching over for the last few pages of my medical records as I walked her through the first few. I’ve been told the success rates are high, so I figure out a way to forgive her for her neglect-manifesting autopilot nature of work, and move on.
The new hematologist refused to believe my disease was real, saying patronizing things like “people with the real *redacted for medical privacy*…” and going on to ask me in a serious tone of voice whether or not this might be a mishap that came from me consuming rat poisoning. He then prescribed me something I knew wouldn’t work [remember, the predictive spreadsheet from last year? This was all on it. Disease included.] that costed over $300, and instead of getting financial assistance for me like he said he would, just told me to buy the low dose ones on the shelves at the pharmacy, and consume 100 of them a day for five days, in order to diagnose me with my disease, because there’s “no way it’s real”. The meds didn’t work, and due to them finally realizing the validity of my miserable life, my surgery was pushed back five days, to ensure they were well equipped, fully stocked, and had days afterwards, should I need to go back onto the table due to excessive bleeding post-operation.
I don’t know how much longer I can hold out, but surgery “is” 5 days away. The surgery isn’t happening.
Monday October 25th, 2021 2:14 pm
I was misgendered and/or deadnamed by at least three hospital staff on the day of the surgery, one before and the rest after. At one point even loudlly declaring "I'm here today to get my chest chopped in half, for christ's sake." The procedure lasted an hour, though I stayed in the Intensive Care Unit area for four hours, as they battled my heart rate and blood pressure until they both came down. The surgeon came into my room the next morning, seemingly waiting for a ‘thank you’, only to hear me tell her I felt like I slept overnight in the hospital for no reason, because the surgery is never going to happen. “See, that’s what you would say,” she says back to me, moodily. “But you don’t have to say that anymore: we did it!” I repeat myself again. “I feel like I slept overnight in the hospital for no reason, because the surgery is never going to happen.”
I get my drains out on Wednesday, though I’m not sure why they ever put them in, because the surgery...is never going to happen.
The surgery is never going to happen. And this article is never going to be published.