Trans Surgery, Life-Saving Surgery, and the Space Between

by Mauro Sifuentes, doctoral candidate in Education & community-based educator

I have been under general anesthesia five times in this life. The first time, I was three and had a hernia repaired; because the anesthesiologist didn’t want to over-medicate me, I ended up waking up before the surgery was over. One of my earliest memories is trying to lift up my head – which felt incredibly heavy – and looking down at my own little naked body and feeling confused and tired and seeing a nurse notice me, look a little panicked, come over, and I was out again. Surgical memories are an integral part of my self-understanding. 

My second surgery happened when I was sixteen. I had acute abdominal pain and was rushed to the emergency room. After identifying a water bottle-sized cyst pushing up against my stomach and intestines, I was sent into surgery to remove it (as well as the ovarian cyst it was pushing on, the actual source of acute pain). I went into surgery being told I might have to have my ovaries and uterus removed if anything appeared malignant. The cysts all ended up being benign, though there was no conclusive idea about why I’d grown a large, free-floating cyst (most cysts and tumors grow on organs or tissues). One theory included that I had absorbed a twin in utero during early stages of development, which matched other complications that surrounded my pregnancy and birth.

Ten years later, the cyst regrew (which I had been warned was a possibility). This time, I didn’t have health insurance and had to wait three months on bed rest before I could be scheduled for surgery at San Francisco General Hospital, and was then in bed and out of work for an additional month while recovering from invasive abdominal surgery. A new theory the doctors developed was that I had Turner’s Syndrome, an intersex condition that sometimes results in unusual cyst or tumor growth. After going through genetic testing, the results were inconclusive. If I did have Turner’s, it was “mosaic Turner’s,” where some tissues/cells have the chromosomal differences but others didn’t. I never followed up on this because it didn’t matter much to me.

About six months after this second abdominal surgery, I was hit by a car while riding my bicycle to work in San Francisco. It was a hit-and-run (the dude yelled “sorry” out the window before speeding away). My arm was snapped in half like a twig, as it had absorbed the entirety of the impact of the car. All things considered, I was pretty lucky. No head damage, no hip or spinal damage. Again, I had no health insurance so had to wait nine days for surgery. San Francisco General sent me home with a splint (no sling) and a bottle full of oxycodone. A week later, after surgery, when the general anesthesia wore off, I was in the worst pain of my life. What most folks don’t know is that after you wake up from surgery, you don’t really feel much pain at all because the general anesthesia is numbing your body. This wears off after about 18-24 hours, when the full force of what just happened to your body finally hits you. It’s scary, jarring, and disorienting. No one told me I would be in so much pain. I came to find out that I had spent 7-8 hours face down on an operating table with my left arm wrenched around so that the backside of my arm was exposed for the surgeon to insert a plate and twelve screws. Would have been nice to know beforehand, but instead, I wound up crying from pain and fear for about an hour before I was able to get an answer as to why my shoulder was in so much pain when it was my arm that had been operated on.

In hospitals, you often forget that your body is yours. We live in a culture where so many people, for so many reasons, don’t experience their bodies as “theirs.” Some people dissociate because of abuse or trauma. Some people grow up in communities where your bodies will be laboring bodies and ignoring pain or discomfort is part of how we make a living. Others have been taught to care only for their minds and that their bodies are inconsequential, and so they’ve learned to separate body from mind, disconnecting things that are intimately interwoven. And others have experienced many other kinds of dysphoria, including around gender.

My fifth, and most recent, surgery was almost three years ago, when I had flesh and glands removed from my chest to give it a narrowly-defined “male contour” by a private, plastic surgeon in Marin. Of all my surgeries, this was the one that I had the most mixed feelings about because 1) it was expensive and I was paying out-of-pocket, 2) it was the only surgery that wasn’t physically life-saving, and 3) it was the only surgery I’ve had that people have congratulated me for. While some people may have their choice of surgeon covered by insurance, mine wasn’t. There may also be some trans people who say that “gender affirmation” surgeries are life-saving. I don’t know how to explain what this surgery was to me. It felt like a way to manipulate my body so it could move with more ease through its day. I didn’t want to think about whether or not I wanted to bind my chest, which was a very painful practice that exacerbated my asthmatic symptoms, gave me rib and intercostal pain, and resulted in rashes from the tight and uncomfortable fabric pressing up on my skin all day. I also had to be strategic about what kinds of fabrics to wear so that the strange shape the binder left my body in would go undetected. It also made going to the gym, changing, wearing tank tops, going to the beach, and other activities like exercising outdoors or hiking somewhat uncomfortable, if not unbearable in other moments.

I never experienced the kind of dysphoria that many other trans people describe. I knew that it was the world that had led me to feel uncomfortable with my body, rather than some fundamental disconnect between my body and my mind. Because I don’t experience or believe that minds and bodies are separate entities, I know that those thoughts and experiences were put into me through the aggressive messaging we all receive through TV, movies, magazines, billboards, and other media about what male and female bodies are supposed to look like, and this has been very narrowly defined.

With my four other major surgeries, people didn’t really ask me a lot of questions. People almost seemed afraid to ask. People weren’t offering to help me with recovery. People seemed scared and silent around it. When it came to my chest surgery, there were “congratulations!” and offers to help, and lots of questions and curiosity. I wish I’d received “congratulations!” for surviving life-saving surgeries that were much more invasive. I didn’t want to receive congratulations for my chest surgery. I wanted people to be angry that I had been made to feel so uncomfortable with a part of my body that I was going to decide to have it removed. A part of me has died before the rest of me. That’s something I sit with and think about quite a lot. I had a grieving process that I went through, and I’m content with my decision to alter my body in irreversible ways. It has opened up a certain ease that I haven’t had since I was much younger.

The most bodily dysphoria I have ever experienced was in the week between my bike-car accident and the surgery. Because my left arm was not connected to the rest of my body by bone (it was dangling by muscle, ligaments, nerves, and other tissues), I couldn’t control it. I had nightmares that would end with me throwing my arms up to protect my face or catching myself from falling. When I’d jerk my arms up, the pain would wake me up from the nightmare. A couple of times, when I was awake, I had an itch and my left shoulder jerked to move my left arm to scratch it, but because the rest of my arm wasn’t connected by bone, it didn’t move. In my mind, my motor cortex was telling me I’d done the appropriate action to move my arm, but my visual cortex was telling me my arm hadn’t moved. The room began to spin and I nearly passed out and vomited before I was able to reach over with my right arm and “find” my left arm. As soon as I touched my left arm with my right hand, the spinning and nausea stopped immediately and my body-mind was back in alignment. I’ve never experienced anything nearly so disorienting from gender-related dissonance. When people talk about dysphoria of any kind, this is the experience I draw upon to connect.

Why have I shared all this? Perhaps to speak from a unique experience of having been operated on five times before the age of thirty, and under very different circumstances. Most trans people might only have gender-related surgeries, and so might have no basis of comparison to other kinds of surgical procedures and the ways they are experienced, both by the person being operated on and by those around them. My hope would be that sharing these experiences could give people some insights into the ways we value trans-surgeries and other kinds of surgeries. And that for some people, trans-surgeries may not be “life-saving” in the same ways that other kinds are. I fully recognize that people’s psychological health may be intimately connected to their ability to change their bodies to make them feel more like “home,” and in some ways, not having access to support (including healthcare and surgeries) could lead to life-ending consequences, like suicide or other harmful behaviors.

We also think of surgeries as quick, easy fixes. In my experience and the experiences of those I’ve known, the surgery and immediate recovery period is just a small part of that experience. I still have numbness and shooting pains in my arm, abdomen, and chest, from all those surgeries. Sometimes a body can have the look of full function, but not actually be able to do all the things it could before. For example, my arm looks relatively “normal,” despite the 14-inch scar running up the back – but I have nerve damage, not from the accident, but from the surgery.  I can’t do push-ups or other movements that compress my left elbow, and my left hand always feels like I just pulled it out of a bucket of ice water, complicating my relationship to my body as a (former?) musician. My abdomen looks relatively normal, but I can’t twist myself in particular ways. I can’t lean my chest against things because the combination of surface numbness and the experience of pressure result in this weird kind of pain. I don’t like parts of my chest touched because the nerve endings send odd, shooting sensations that don’t match my mind’s idea of where it’s being touched and this is really disorienting.

I don’t share this to make people feel badly. I share it because culturally, in the Euro-American West, we think that bodies can be intervened upon, “fixed,” made to look “normal” to us and to others, but that cutting open a body and adding prosthetics or removing parts, will fundamentally change it, forever. Sometimes those changes are necessary and can allow for new possibilities, and sometimes, in addition to those positive changes, we have to learn to adapt to other foreclosures, or unexpected losses of capacity, movement, sensation, or connectedness. Supporting someone who is having surgery means different things for different people, but it should always involve challenging the assumption that once someone is back to school or work (or whatever they may do with their time), that all the healing is done. Recovering from surgery is also a long-term psychological process, and sometimes one that you go through for the rest of your life.