Elijah Oberman can’t find a way to describe his pain, but it feels good in a confusing way.
A little over a year ago, I was diagnosed with breast cancer. When I first felt the lump in my left breast, I ignored it for some time. Partly, I was scared. Partly, I didn’t believe that it could be cancer. And partly, as a transgender man with a lot of fraught feelings about that part of my body, I just didn’t want to think about it. I was 27 years old, healthy, strong, and had no history of breast cancer in my family. But I did go to the doctor eventually, and after determining it was cancer, I was rapidly scheduled for a double mastectomy, which would remove the tumor and as much breast tissue as possible, and would investigate my lymph nodes to see how far the cancer had advanced, allowing my doctors to stage it and recommend a treatment plan.
It wasn’t until I was confronted with having surgery that I realized I didn’t want it. Early on in my transition, it was something that was really important to me, and I’d put it off mostly because it was so expensive. Slowly, over the years and without my even noticing, I’d come to a place where my body wasn’t just bearable to me the way it was, it wasn’t something I was happy with. The irony of having done that work, only to end up needing surgery to save my life, and of not wanting it but being forced to have it when so many trans people out there want it and can’t afford it, felt bitter. My doctors, while overwhelmingly kind and caring in so many ways, weren’t necessarily very aware or informed when it came to trans issues, and assumed I’d be thrilled to have surgery for free (I’m lucky enough to have insurance). While of course they were sensitive to the cancer diagnosis, they presented surgery to me like a warped, maudlin gift. I felt like I was in a surreal, ironic dreamworld. As much as I was terrified by and in shock from the cancer itself, I felt sick about the thought of being cut open and having my body violated and sucked out through a tube. These feelings were heightened by the fact that, going into surgery, I didn’t know what prognosis I was waking up to, what life I was waking up to.
After surgery, my doctors determined that my cancer was stage 2B, meaning it had spread to several lymph nodes but not to other places in my body. Despite the wonderful news that they believed they’d removed all the cancer during surgery and my prognosis was a full recovery, they strongly recommended that I go through a year’s worth of chemotherapy because it was possible there were metastases that couldn’t yet be detected and that the chemo would kill. This was important because, while at first it sounded overly aggressive, if my cancer were to return in another part of my body, it would be terminal.
After surgery and during my treatment, I learned a lot about my relationship to pain, not only because I was in a lot of pain, but because talking about my symptoms and my pain level was something my doctors needed from me, and pain was most of what I had to talk about with my loved ones as well. In my treatment room, there would be posted the 1-10 pain scale—a version in words and a version in drawings of faces. My friends would joke, “but Eli’s face never looks like the ‘0/no pain’ face. He’s always at least a 4!” or “They shouldn’t describe 10 as ‘worst possible pain’ because then Eli will never say he’s a 10, no matter what. He’s a neurotic Jew and in his mind there’s always the floating amorphous fear that there’s more and worse possible pain out there”!
It felt good to laugh about it, but my confused ideas about my own pain created real problems on many occasions. A week after my first chemo treatment, my pain was so bad from a variety of different symptoms that I went back to the treatment center for help. After examining me, my doctor and the nurses were horrified by how bad I had allowed my symptoms to get before I came in for help. When they asked me why I’d let things get so bad, I realized there were two reasons. First, I’d always been told that I was overly sensitive and had a low pain threshold, so I was discounting my own experience by telling myself it wasn’t as bad, “objectively,” as it felt to me. And second, my doctors had told me that because the treatments were cumulative, the side effects and pain would only get worse with each treatment. When I thought about the amount of pain I was in and that it was only going to get worse and worse from what I was feeling in that moment, I didn’t think I could make it. So I tried to convince myself it was okay.
My friends and partner expressed concern that I was trying to be tough and not always getting help when I needed it. Because I’d been told that I was sensitive and had a low pain threshold, and because that was my idea of myself, I discounted and invalidated my own experience of my pain, telling myself that I was being weak and that the only way to get through this was to grit my teeth and bear it, to toughen up. My father, who, in addition to having survived a heart attack and a lot of pain himself, was also a PA, once told me that a 10 on the pain scale was when you would rather pick up a gun and shoot yourself in the head than go on living with the pain you were experiencing for one more second. I thought that if I was feeling anything much short of that I should just suck it up.
Growing up socialized as female, I always felt that I had to be tough and not show pain. I had to prove that I was strong, that I was as good as a boy, that I deserved respect. I was often embarrassed and disappointed in myself because although being tough was very important to me, I wasn’t very good at it. After I started identifying as trans and began taking testosterone and passing regularly, I was troubled to find that I also felt I had to be tough and not show pain in order to prove a masculinity that I didn’t even believe in, something that was only heightened by the fact that I’m not a very “masculine-presenting” kind of man. It was very apparent to me that even though I was opposed to living in a way that continued to validate a masculinity of stoicism, hardness and toughness only, even though I didn’t believe that anyone of any gender should have to conceal pain and toughen up to live up to and help perpetuate a construction of gender that is harmful to everyone, the pressure was immense.
The pain I experienced during chemo was unlike anything I’d ever felt. I’d previously had what I consider to be a relatively normal going-through-life injuries and illnesses for someone with the privileges I have, in terms of being an upper-middle class US citizen. I’d also had migraines when I was young and had had surgery before. But this was something else entirely. I had scary (and once, life-threatening) allergic reactions to my chemo drugs. My treatment days were usually 8 hours long because they had to pump me so full of steroids, Benedryl, pain meds, anti-inflammatories, and a thousand other things before they could administer my chemo. One day I realized that I’d just been pumped full of the largest permissible daily dose of 9 different extremely serious drugs. I looked at the emergency kit in my treatment room that explained how if any of my drip bags were to break or leak, they would have to bring in an emergency team in hazmat suits to clean it up, and yet they were injecting this stuff right into me. My body was a toxic waste dump.
One of the doctors I loved at the treatment center once joked with me when I walked in the door at 10 am, “Oh no, not you! I had dinner plans!” In addition to my allergic reactions, I had a host of reactions no one could identify easily. I had intense stomach pain they eventually realized was a form of acid reflux so severe that the symptoms were initially confusing. Even when it became clear, the medicine they gave me barely helped. I had a base level of constant stomach pain, and the acid was essentially rising up my digestive tract all the way back up to my mouth. I lost my sense of taste entirely and had sores in my mouth from the acid coming out and burning me. Sometimes that base level of pain would stay at a place that allowed me to do things and distract myself from it. Sometimes I would have to just sit and breathe and cry and couldn’t distract myself even for a second. On top of the base level of pain there would be waves of pain, usually lasting anywhere from thirty seconds to five minutes. This pain would start in my stomach and wash over my whole body. It was so intense I would just curl up in a ball wherever I was. I couldn’t move or breathe or make sound, and I would just be there, curled up and sweating with it until it would ebb and pass.
One of the things that I’m struggling with the most now that I’m trying to recover and process what I’ve been through is that there doesn’t seem to be any language at all for physical pain. With the combination of being Jewish and my mother being a second wave feminist who referred to our family as her ultimate consciousness-raising group, talking, and talking a lot, was a huge part of my upbringing, and enormous value was placed on expressing one’s feelings and opinions, one’s reality. “The personal is political! If we’re not talking, what are we even doing?!” Being able to articulate how I feel in a way that really captures my experience, gets at the heart of it, is something that’s incredibly important to me. And talking with the people closest to me is also an important part of how I process what’s hard in my life that I need to get through, how I change and grow. I need to talk about what happened to understand myself, and I need to talk about what happened to feel close to the people I love.
But I haven’t even come close to being able to find words for the pain I felt during chemo. Like trying to write about the wind, I can describe my symptoms and some of the effects, but not the thing itself. I can tell you how it shook me, how it has made me afraid, how I have nightmares all the time. I can tell you that it stripped away everything I thought I knew about myself and filled me with terrified doubt about my purpose in life. I can tell you how after years of coming to accept myself and my body, it now feels like an ugly thing I don’t know how to start over trying to accept and love again. I can tell you how out of nowhere I’ll flash back to one of a hundred different moments and it takes my breath away, sucks me right back into it, reliving it as though it was happening all over again. But I can’t tell you what it actually felt like. I get so frustrated; I want to tell you everything and the only words I find are, “It just fucking hurt! It just hurt so bad”. These words are unspecific and bland and weightless. They feel like little scraps of paper floating in the breeze above a sprawling, hot, stinking landfill.
I’m angry that I can’t express what I’ve been through, and I feel alone because I can’t share it with the people I love. It’s helped to talk to people who’ve had similar experiences, and to read about other people’s experiences. Sometimes reading even the driest accounts of someone else’s symptoms brings me to tears because of how it makes me feel not alone. But those people aren’t my best friend or my partner. Those people aren’t the people I wish so much I could tell. The truth is there’s definitely a part of me that doesn’t want my loved ones to have to understand. And I think about how I also know what it’s like to watch someone you love go through horrible pain and not be able to help. Just be there and hold them in it. That’s its own pain that I’ve made the people who love me go through, and I wish I could take it away from them the same way I know they wished they could take my pain away from me when they sat there helpless and holding me and watching me cry. I think about my loved ones who suffer from chronic pain with no end in sight, and how different that is from the pain I went through, something to be survived and gotten through. How do any of us walk around with these pains that can’t be told or shared? That our bodies hang onto and store in our cells’ memory? That haunt our dreams? I’ve never wanted to tell someone something so badly and been so unable. And rebuilding is a solitary process. Despite the powerful support I have, at it’s core, it’s something I can only do alone. Like the wind, I can’t describe it. Like the wind, it will come, and it will pass.