When I was eight, my mother had a hysterectomy. She emerged from the surgery with pain that ran down the backs of her legs. Her sciatic nerves; the left side worse than the right. After the surgery, she moved differently; each motion was a risk. My new mother came home from the hospital wincing with pain. She tried to describe it and I tried not to listen. She went to physical therapy and doctors, doctors, an assembly line of white-coated skeptics who didn’t have any answers for her.
I understood only the most elementary gradients of pain. The closest I had come to injury was when my mom and I had gone ice skating, the year before her surgery, and I had shrieked—she thought with pleasure—as we sped, faster and faster, around the rink. When I fell, I landed hard on my wrist. When I fell, it seemed impossible that, moments before, we had existed painlessly. Then there we were, in a different version of this world; a world in which I cradled my not-sprained wrist to my chest and wept the whole way home.
The difference was, I was going to heal, and she wasn’t.
SHE NEVER CRIED IN FRONT OF ME,BUT I KNEW THAT SHE WANTED TO.
Everything was a possibility for pain. When we went out, if a person came too close to her, I wanted to chase them away. Even the slightest touch in the wrong spot could send her reeling. The seam of a sock, running along the wrong spot of her toes.
It was Sciatica, but also a herniated disc, also two herniated discs, also they didn’t know what had caused it, but probably it would have happened anyway. Chronic intractable pain. It had been two years, four years, twelve. I was almost an adult. She had to pick up her medications in person. “Someday I’ll be off this,” she said, often. It made my throat itch.
I stayed up late watching a TV show called Mystery Diagnosis. I was convinced that, if I paid close enough attention, I would discover the answer. I’d scribble magic words on a piece of paper that she would take to her doctor, who would confess he had never heard of such a disease, but my God, this was it. I imagined talking to a camera for what our episode would be. This would all just be the “before” segment.
EVEN THE SLIGHTEST TOUCH IN THE WRONG SPOT COULD SEND HER REELING.
My grandmother had an opinion about everything. Have you tried acupuncture? Swimming? Have you tried Tylenol? Yes, yes, yes. Tylenol is wonderful, my mom said into the phone receiver. She never showed her anger. I’ll have to try that.
They gave her an epidural, which almost worked. Then the numbness started, and the tingling. She ran the water so I wouldn’t hear her throwing up. Withdrawal turned her as white as an eggshell. It kept her awake all night.
At family gatherings, I listened to her lying. “I’m doing just fine,” she said.
I kept an eye on her facial expression, her body language. When the pain got too great, it was my job to find my father and tell him we needed to leave. “Mom needs to go home,” I’d say; if it were up to her, she would stay until it was too late.
I was a pain detective. I could see it everywhere we went. She gasped as we drove over the potholes, the jolt of the road’s uneven surface. My dad apologized when we hit them too hard. He couldn’t always see how to avoid them.
It was the hardest to watch her try to do things I knew would hurt her. She shoveled the snow off the front steps and immediately felt the pain overtake her. “I knew I shouldn’t, but I couldn’t help it,” she said. She never cried in front of me, but I knew that she wanted to. It was years before I understood how that felt.
I learned that your body was the container that would one day kill you. As a girl, it seemed to me that your body was the ultimate adversary; that its capriciousness was its most defining characteristic. I was surprised to observe my peers considered their bodies to be more vehicles of pleasure than personal death-mobiles. Everyone I knew was waiting to grow up; to be able to get a tattoo of a peacock, or have their eyebrows pierced. I felt like I was waiting for something else. For the other foot to drop.
YOUR EMOTIONS NEED ENERGY,AND I DIDN’T HAVE ANY TO SPARE.
There had always been foods that hurt me to eat: tomatoes, peppers, spices, barbeque. Many others. Even typing them in a list, I feel a twinge of nausea. The summer after my freshman year, I struggled with bad heartburn. I had a special pillow that propped my esophagus up at a more benevolent angle. Always, I felt the acid creeping up my throat. The need to vomit would wake me up at night.
Anti-depressants helped my stomach recover, but I felt like my life was happening to me on a screen. Effexor gave me strange, surreal nightmares of a nuclear holocaust that was always, inexplicably, in Australia. When I weaned myself off the Effexor, it was one of the hardest things I had ever done. I didn’t get enough sick days, so I stayed at work, sweating and gripping the corner of my desk. My thoughts were fuzzy and indistinct, but had the speed and persistence of my worst anxiety. It took weeks to leave my system.
But I didn’t improve. I couldn’t eat, and the tenderness in my abdomen was hard to ignore. Still, I ignored it, to an extent that I marvel at in retrospect. I convinced myself that I was lactose intolerant and bought a huge packet of Lactaid supplements. I was sure that getting better would happen on its own, and then I adjusted my expectations so that getting better was out of the picture entirely. I’m not in pain, I thought. I am not.
It’s hard to talk about how I felt during this time, because I felt so little. Your emotions need energy, and I didn’t have any to spare. My denial slurped it all away, as if it were a delicious specialty. Everything felt like a food that I wasn’t able to digest.
Later, when I tried to write about this experience as fiction, no one bought it. “Why wouldn’t she go to a doctor sooner? How can she keep going if she can’t eat anything?” “There must be somebody who cares that Rachel’s so sick.” But it isn’t that people don’t care. It’s that most people only relate to experiences they’ve had themselves, and this was not in that realm.
I thought it was my fault. I was so sensitive; emotionally immune-deficient. If I felt less, I would be well. I heard my goals sputtered in Thom Yorke’s robot-voice: fitter, happier, more productive. I just needed to work harder. I believed I had no right to be scared; I was just lazy.
Eventually I told my mom what was going on. I was twenty-three and I had all the symptoms of colon cancer. After each test, my gastroenterologist would gently introduce my future diagnosis. “We’re fifty percent sure it’s Crohn’s.” “We’re seventy percent sure.” Finally, he said, “I’m sorry.”
I KNOW THAT BY TRYING TO PROTECT EACH OTHERFROM THE TRUTH, WE WILL ALWAYS BE MORE SEPARATE THAN EITHER OF US WOULD LIKE TO BE.
Last year, I tried to get from Brooklyn to where I grew up, in New Jersey. It’s a little over two hours by public transportation. At Port Authority, the line for a bus ticket was long, and without warning, a pain in my abdomen elasticized. I was listening to Lena Dunham on audiobook; I wanted to hide inside of her voice, like a blanket fort. But ten seconds ago I was fine. But thirty seconds ago I was fine. A minute. It felt just like the ice skating accident; I was still breathless from skating the perimeter. Once there had been an absence; now there was a presence, and I couldn’t stop it. It wouldn’t stop.
A dark, furious curtain covered my vision. I curled into a ball on the floor of the bus terminal. I have no memory of how I dug my wallet out of my bag, or what took place in an exchange. I remember the steps up to the bus; I remember being asked if I was okay. What could I say?
I bit my knees. I cried.
At my childhood home, I downplayed this story for the benefit of my mom, who I knew would hang on every word. I knew she would pray that this pain could be hers instead, that she’d want to absorb it into her like a cell engulfing an object that becomes part of itself. I don’t want her in any more pain. When she wishes for this, sometimes I hope God can’t hear her.
When I told my father, he said: “If you buy your tickets in a ten-pack, you won’t have to wait in such a long line.”
We’re careful when we talk to each other. She doesn’t want to worry me; I don’t want to worry her. I’m not in pain. I am not. But we both know that the other is sometimes, maybe often, lying. I know good has an asterisk bobbing over it in the dark. I know fine is something more slippery, tangled. I know that by trying to protect each other from the truth, we will always be more separate than either of us would like to be.
BUT IT ISN’T THAT PEOPLE DON’T CARE. IT’S THATMOST PEOPLE ONLY RELATE TO EXPERIENCES THEY’VE HAD THEMSELVES, AND THIS WAS NOT IN THAT REALM.
I’ve been in remission since November 2014. It is your body falling back in love with you. To be able to eat a doughnut and then go for a walk; to not feel your entire body whirring after meals. I have more good days than bad ones, and the bad ones end.
There are things that I have had to give up. The most glaring one is alcohol. Last year, I went to a writers' conference in Portugal. Each night, the writers met at a tiny bar nestled atop a winding Lisbon hill. I went on the last night of the trip, where a drunken boy from my workshop asked repeatedly why I wouldn’t have a taste of cherry liqueur. “Oh my God, are you an alcoholic?” he prodded. Then, later: “Haven’t you ever been to a party before?”
I wanted to say: you don’t know what that will do to me. But then, neither do I.
I wanted to say: you don’t know what this is like. You don’t know how much I hate this kind of attention. He didn’t drop it. Let me drink my fucking water in peace, I thought. My skin was hot with anger. And, inside, I worried about whether I was being untrue to myself by lying, again, just because it was easier than being truthful.
I said to this person, “You’re an asshole,” and he replied, with a huge smile, “Someone has to be. That’s what makes things interesting.”
AND SO I BREATHE; I KEEP BREATHING.
Any end I write to this essay will be false. Any strategy I have to work through pain doesn’t hold up 100% of the time. Sometimes I feel guilty, prematurely, thinking about whether I should consider having children. One day, my medication could stop working; my immune system could figure out its way around the suppressants, and forget which parts of me are safe, which parts are dangerous. Then I think that the stress of worrying about my sickness might lead to a relapse—the double-edged sword of a stress-induced disorder. And so I breathe; I keep breathing.
Last night my mom called me to talk about a problem with the heat in our house. Workmen had been attempting to repair the problem all day. It was twenty-five degrees; she had worn a scarf.
“I wished I had fingerless gloves,” she said. “But I know how to block things out; I’ve mastered it. You can block anything out, if you try hard enough,” she said, and we both laughed, and then changed the subject.