Cancer and the Self: On Learning Vulnerability Through Pain

by Ally Bernstein

I never have a way to gauge my pain.

I hate being told to assess it on a scale of 1-10. How bad is a 10? It must be really, really bad. How do you know when things are bad enough to ask for help? What is bad enough?

Certain types of pain fade very quickly from my body and from my memory, whereas other pains linger incessantly. I’ve had kidney stones, and I know that they hurt, but they never actually felt level 10 bad, even when I was spending hours curled up in a fetal position on my couch, frantically calling friends to see if someone could bring me Advil. I peed blood for a month before seeing a doctor because I never thought anything was serious enough to merit medical attention. I can remember the feeling of depression, an empty vessel with a crack in the bottom that can't hold water. But even then, it took me years to get real help. It’s very difficult for me to tell the difference between something being wrong and my own weakness.

When I had cancer, before I knew it was cancer, I was not exactly in pain. My main symptom was a terrible, life-altering, persistent itch, misdiagnosed as scabies for 5 months until I demanded an x-ray that showed the tumors riddling my chest. The majority of the doctors that I saw were men. I was crying in their offices, the itch was ruining my life, I had stopped going out, I was going to sleep earlier and earlier to spend less time conscious and miserable. I did want to die. Diagnosis wasn’t scary because it was just a huge relief.

A smudge on the x-ray turned into a CT scan turned into a PET scan and a barrage of appointments. The first oncologist I saw made it clear that she was too tired for my shit.

When I asked her if the implanted metal catheter for chemo would show, she responded, “only if you’re skinny.”

I think what I really meant was, how bad is this going to be? and her response really meant, I don’t care.    
       
My first biopsy was a needle biopsy that was both stressful and inconclusive. My second biopsy involved removing an entire tumor from my neck. I begged for general anesthesia; the idea of being cut open and having a tumor extracted terrified me. I was denied my request and given local anesthesia. I made a playlist and called it “sugary” to try to trick myself into thinking of it as something smoother and sweeter than a foreign instrument in my body.

The surgeon assured me the operation would take 20 minutes and that I wouldn’t feel a thing. It took far longer. I could hear her discussing how difficult it was to pull out my tumor; she called it a “scooter.” My music wasn’t loud enough to drown out her conversation. I was hyperventilating and crying the entire time; I was in pain; I kept asking for her to stop. I could feel her under my skin. She ignored me and a nurse held my hand and told me I was doing great, almost there, good job, you’re doing awesome.

When she finally managed to extract the tumor, I angrily told the surgeon that she had lied, that it had hurt me very badly.

“It hurt because you’re emotional,” she said, “Did your tattoos hurt?”
“No,” I said, crying, even though they did. But getting tattooed hurts in a different way than having a swollen cancerous lymph node removed.
“Right, that’s because you’re so emotional now.”
“Can I have painkillers for when the local anesthesia wears off?” I asked.
“No, take an Advil,” said the surgeon. I learned later that Massachusetts had just passed strict laws against prescribing opioids, in an attempt to curb addiction and overdoses. Later that day, I was in so much pain that I couldn’t sit up.

I was furious after that surgery. Why did it seem like rape? And why did the surgeon paint me as a hysterical woman, instead of acknowledging my pain and helping me? Why is our first instinct to doubt someone’s pain?

Sharing pain requires so much vulnerability. I wear my pain in my appearance these days; I’m half-bald from chemo, I look worn out, I have scars. I don’t recognize myself in the mirror; I’ve become a cancer ghost. Sometimes, I feel like in sacrificing my health to kill the cancer, I’ve gained some power. There’s something very real and magical and strong about letting down your defenses. I’ve existed in this periphery where I’m not quite living, because so much of my body is dying, but it’s part of what will keep me alive. It’s a liminal space, an in-between space, and it feels mystical.

When I was in Montreal, I think five years ago, Joseph took me to a special place called Champs des Possibles that had been a railroad but was now overgrown with mostly weeds and invasive species. It had become a space used for gardening and meeting. It was sort of a beautiful oasis of green and rebirth and rewild; a reclaimed land. This was the first time I thought of invasive species as something other than “bad.” After the vast majority of natural resources are extracted, perhaps the world will heal itself and look different than it did originally. That’s not bad. It’s just recovery.

Nature recovers with new species in disturbed locations. In the article “Play of Sniffication,” about coyotes reclaiming and rewilding urban space, Natasha Seegert writes, “Ruin and decay should not be considered negative processes. Indeed, they are highly productive. Ruin and decay not only provide space for new life to spring forth, but also permit for new constructions of reality.” 

I lost so much this year. I was living in an apartment and supporting myself, I was in a relationship, and I had an excellent job at a museum. I was organizing zine-related events, I had a community, I had a future, I had security. And then all of a sudden I wasn’t sure if I was going to live, and slowly all of those things fell away. I’m mourning those losses and rejoicing that I still have time to build things again.

I lost my immortality. I am so changed. I don’t know my body anymore. I don’t trust my body anymore. How could I, after nearly dying from a disease that originates in my own cells?

Months into remission, I am learning that every day I survive is a chance to rebuild. Every day is a chance to revisit that pain and attempt to overcome that fear. Some days I succeed, other days I don't. I am occasionally minimized by my pain, but often I find it expansive; I'm forced to explore the marginal space of the sick and the surviving. Moving forward in a world where wealthy politicians strike down healthcare and further doom the sick and disabled, I find comfort in the community that shares the liminal space of illness.

Two weeks into cancer treatment, my head was on fire and I shat blood (if I could shit at all). My body covered in rashes, my mouth with sores, and every time I ran my hand through my hair, I pulled out clumps.

I thought I can't possibly do this. I can't possibly continue to live.

But I did, and so I will, as long as I can.