Pain and Its Discontents

 Photo by  Thomas Evans

Photo by Thomas Evans

I was five or maybe six the first time I tasted chiles, and it changed what I thought it meant to be human. We were at La Parillia Suiza. I asked to try the salsa, and my mother said yes, and I dipped a freshly fried tortilla chip into the pale green tomatillo one. Capsaicin exploded through my mouth, hot and painful. I yelped.

“It hurts,” I said, betrayed.

“It does hurt a little,” said my mother.

“Why would anyone eat food that hurts?”

“Some people enjoy that feeling.”

It would be fifteen years until I read Mary Gaitskill’s Bad Behavior, but when I think of the beginning of my relationship with pain, I think of that meal at La Parilla Suiza.

But maybe that’s too late. When I was five months old my father was riding his bicycle across an intersection when a white truck ran a red light and sent him flying in a smooth parabola across the asphalt. He was supposed to live half a year and he lived twenty-two and the extra years came with a price. His spinal cord had been partially severed so he lost the use of his legs and gained a pain that never ended, that kept him up at night and drove him from himself. He was in and out of hospitals for the rest of his life. One of my earliest memories is his face twisted in anguish as he rubbed his legs and groaned. At some point I must have naively asked him why he didn’t just take an Advil or something because I remember what he told me about the pain medication they gave him.

“I didn’t care about the pain anymore,” he said, “but I didn’t care about anything else either. When I pulled up to a red light I didn’t care whether I stopped or not. I figured pain was better than that.”

Growing up, I tried to imagine his pain as a lead suit he could never take off. One he wore as he carefully sliced garlic for his spaghetti aglio e olio, as he drank a glass of white wine on a hotel balcony overlooking the ocean. He drank a lot of wine. When you’re confronted with too much pain and no good solution, you improvise.

According to science, our relationship with pain starts around the twenty-seventh week of pregnancy. What’s needed is for connections to form between the thalamus, the brain’s switchboard, and the cortex, home to language, memory, and consciousness. Pain is our bodies’ oldest and most universal complaint. It fuels our religions, seeping its way into Christ’s sacrifice on the cross (“Surely our sicknesses he hath borne, And our pains -- he hath carried them, And we -- we have esteemed him plagued, Smitten of God, and afflicted.” Isaiah 53:4) and the Buddha’s First Noble Truth:

“...birth is suffering, aging is suffering, illness is suffering, death is suffering; union with what is displeasing is suffering; separation from what is pleasing is suffering; not to get what one wants is suffering…”

The Sumerians started cultivating opium poppies in Mesopotamia as long ago as 3400 BC. They named it Hul Gil, the plant of joy. In 1618, Paracelsus, an alchemist and astrologer, mixed opium with saffron, castor, ambergris, musk, and nutmeg, and called it laudanum. Over the next two centuries doctors kept experimenting, mixing opium (and later morphine) with mercury, hashish, cayenne pepper, ether, chloroform, belladonna, whiskey, wine, and brandy. Its uses were broad: "to relieve pain ... to produce sleep ... to allay irritation ... to check excessive secretions ... to support the system ..." It was given to women with menstrual cramps and spoon fed to babies.

In 1803, Friedrich Sertürner, a German pharmacist tired of being blamed for opium’s unpredictable quality, invented morphine, which he first tested on local children. In the 1850s, the Scottish physician Alexander Wood invented a hypodermic needle modeled on a bee-sting and started experimenting with injecting morphine directly into the site of the pain. By doing this, he claimed to have removed the drug’s addictive properties. Wood and his wife both ended up addicts, as did many of his patients. In 1898, a diacetylmorphine was marketed under the brand name "Heroin" as a less addictive alternative to morphine.

By now we know how Purdue Pharma, architect of the opioid epidemic, received reports their pills were being crushed, snorted, stolen from pharmacies, that doctors were selling prescriptions even as they continued to advertise OxyContin as having a “less than one percent risk of addiction.” How more than 72,000 people in this country died from drug overdoses last year, up from around 17,000 in 2002.

 Photo by  Joshua Coleman  

Photo by Joshua Coleman 

In 2002, I started dating a boy and fell in love with him and his friends, a group of self-identified drug experimenters. They liked the word experimenters, because of the way it swerved around addict. They saw themselves as mavericks, rule-breakers, rebels without causes. I was seventeen and it was all very sexy. It was everything the movies told me it would be. They smoked weed, did a little coke on Friday nights, ordered salvia off the internet. One Sunday morning my boyfriend pressed a tab of Oxy into my palm. When I asked what it was he told me it was basically heroin.

“But, like, better for you. Not as addictive.”

Our friend Andrew had his own place, and we all hung out there after school and on weekends.  It used to be most nights we’d sit around on Andrew’s porch, drinking beer, staring at the bubbling fountain in his front yard or up at the black sky, debating the good life and listening to Massive Attack or Thievery Corporation or Nightmares on Wax, or fucking around with Andrew’s collection of turntables and records and weird instruments. The next morning my boyfriend would drive us to Nico’s for bean and cheese burritos and horchata. I always asked for extra hot sauce. By then I loved the way the pain spread slowly down my mouth, throat, and chest.

Then someone sold them opium and it turned out to be black tar heroin because that’s a trick dealers use to score new clients.

“Don’t worry, we’re just smoking it, we’d never shoot it,” my boyfriend told me, and a few weeks later, “Don’t worry, I’m just muscling it, I’d never mess with my veins.”

Time passed and my friends started to disappear. They started dropping out of school. They stopped eating, growing so thin their wrists and ankles and shoulder blades jutted from their bodies like knives. Their digestive systems shut down. They barely spoke, and when they did, it was in cracked whispers, or low, slurring drones.

Sometimes they still listened to music but mostly they sat in silence, staring at Cartoon Network on mute. One night we all watched Requiem for a Dream together. If you don’t remember, that’s the Aronofsky movie with Jennifer Connelly where the takeaway is: if you try heroin ONCE YOU WILL 100% have your arm amputated and/or be sold into sex slavery. The silence that descended after the credits was long and loud. It felt like shouting. After several minutes, someone, maybe me, made a half-hearted attempt to refute the film’s glamourized absurdity, but mostly everyone was too exhausted.

Then in August, my shy, funny friend Andrew, my brilliant musician and composer friend Andrew who graduated early and was off to Berklee College of Music in the fall, died from an overdose. Andrew used to say, “When I do drugs, I only have one problem.” His mom died when he was young and his father was never around. I wasn’t clear on the details of why, at sixteen, he had his own place.

“We all have our sad stories,” a man told me once, and I didn't know whether I was supposed to shut up or feel heard.

My boyfriend and I got the call in the middle of a Circuit City. We were shopping for headphones. My boyfriend nodded into the phone before collapsing against the dark metal shelves, face red, contorted, wet. As he fell, he held onto me like he was drowning. The air was heavy, gravity turned all the way up.

 Photo by  Cristian Newman  

Photo by Cristian Newman 

Around the time Andrew died, the pain started, dull metal rods of it slicing through my abdomen as if on a timer. I spent a lot of time in bathrooms. I went to a lot of doctors. One, after listening to my symptoms and their duration, said, “Well, it if were anything serious you’d be dead by now.” Mostly they shrugged, told me I was “probably depressed” and sent me home without medication, resources, or a mental health referral.

I’d like to be clear here. I was depressed. There were a lot of contributing factors, but it didn’t help that I was young and ambitious and spending half my life in bed or hunched over a toilet. It felt sad and hopeless. It was, in a word, depressing. Because I was lucky enough to have access to affordable mental healthcare, I found my own way to a treatment plan that worked. For me, that included medication and regular appointments with a psychiatrist and a psychologist. I spent hours meditating, visualizing a warm light that filled my stomach and melted pain.  I learned about the ways I make things harder on myself and I learned to stop making fun of #selfcare and at some point the experts agreed I was no longer suffering from depression. And still, to this day, every morning, I wake up with the pain.

Research shows that women are more likely to receive sedatives after reporting the same pain symptoms as men, while black patients receive smaller doses of pain medication for the the same level of pain reported by white patients. Men wait an average of 49 minutes to be given an analgesic for acute abdominal pain, while women wait an average of 65 minutes.

Nursing: A Concept-Based Approach to Learning,” a textbook published in 2014, warned “Blacks...believe suffering and pain are inevitable...Hispanics...may believe that pain is a form of punishment and that suffering must be endured if they are to enter heaven...Native Americans...may pick a sacred number when asked to rate pain on a numerical pain scale.”

Pain is, literally by definition, a subjective experience. That makes self-report the only true measure,” pain researcher Karen Davis told Nicola Twilley in the New Yorker.

I limped through college and my first two jobs, but by my late twenties, the pain was causing me to miss weeks of work at a time. My boss started hinting if I took any more sick time I would not be employed much longer. I went on FMLA. My boss continued to harass me for missing work, asking me invasive questions and implying she suspected I was faking. More than once I had to say to her, “I don’t think you’re legally allowed to ask me that.” I was always canceling plans and disappointing friends. I stopped eating wheat, dairy, corn, eggs, and then celery, onions, bananas. It didn’t matter, every meal held the potential to knock me out for days. Food became a poison I needed to survive. My skin felt leaden. Most days, dinner was potato chips dipped in mashed avocado, two of the few foods I had left. The pain had started to feel inevitable.

Some days, I imagined it as an inheritance from my father, a red rope of connection. This doesn’t make sense, although there is research showing the epigenetic transmission of Holocaust trauma, so who knows. When you’re confronted with a lot of pain and no good solution, you improvise.

“It seems like you just get sick a lot,” another doctor told me. Just, I thought.

“That part I get,” I said. “I need to know what to do about it.”

 Photo by  Mitch Lensink

Photo by Mitch Lensink

When Twilly asked Irene Tracey, a neuroscientist known as the “Queen of Pain,” if she thought her ground-breaking research would lead to pain’s extinction, “she snorted in a polite attempt not to laugh. Most pain, she explained, is ‘the good kind.’ Hurting yourself when you touch a hot surface is unpleasant, certainly, but it’s also crucial.” People who are born without the ability to feel pain chew off their tongues, scratch their corneas, go deaf from untreated ear infections, walk on broken legs.

The “bad pain” is chronic pain. Pain as disease instead of symptom. Tracey said we’re beginning to think of chronic pain as “something new, with a life of its own, with its own biology and its own mechanisms, most of which we really don’t understand at all.”

What we do know is chronic pain is the most common cause of long-term disability in this country. About one in four Americans are sufferers. It costs us around six hundred and thirty-five billion dollars every year, more than cancer and heart disease combined.

Tracey’s team is making progress. They’ve identified the brain stem as a key neural mechanism. About a quarter of us, it seems, are predisposed by our brain stems to feel more pain more often than everyone else. It’s like a volume knob stuck at eleven. The causes are still unclear. Heredity seems to play a part. So does gender, age, stress, poverty, and yes, depression.

Capsaicin has shown modest promise as a treatment. So has cannabis, although more research is needed, not easy for a drug still classified as having “no currently accepted medical use and a high potential for abuse.” (Repeat after me, no one has ever died of a cannabis overdose.)

My hope, fragile and slender in a time of both the toppling of (certain) patriarchal institutions and the rise of American fascism, is that we reconsider our relationship with pain. Just as we have slowly begun to believe people’s stories of sexual assault and harassment and abuse, I hope we start to believe people when they tell us they’re in pain. I hope we start to believe ourselves.

For me, the hardest part has been letting go of the image I have of myself as a certain type of woman, the type we got to know on the TV show Girls, the type Leslie Jamison calls “post-wounded”:

“These women are aware that ‘woundedness’ is overdone and overrated. They are wary of melodrama, so they stay numb or clever instead. Post-wounded women make jokes about being wounded or get impatient with women who hurt too much. The post-wounded woman conducts herself as if preempting certain accusations: Don’t cry too loud; don’t play victim. Don’t ask for pain meds you don’t need; don’t give those doctors another reason to doubt. Post-wounded women fuck men who don’t love them and then they feel mildly sad about it, or just blasé about it; they refuse to hurt about it or to admit they hurt about it—or else they are endlessly self-ware about it, if they do allow themselves this hurting.”

The worst part about having bosses and doctors tell me I was weak or faking or crazy was the way I agreed with them. I know, I wanted to say. I’m the worst. When I had to ask waiters to list ingredients at restaurants, I tried to communicate with my eyes, Please. I’m not like those other women.

Things have gotten better, slowly, although this is not one of those inspiring medical miracle stories. God I wish. I still wake up with the pain every morning. But I do take fewer sick days and cancel fewer plans and I can mostly eat what I want again. I’ve stopped regarding the pain as inevitable, and I no longer see it as an enemy to be conquered. It’s something I live with and it’s something that gets worse when I worry about it, so I try not to do that at least. My friend Will jokes all I need to do to fix my life is care less. Mostly, I’m working on letting myself be wounded. I’m letting the pain teach me what it means to be human. I’m letting it teach me how it intertwines with pleasure. It’s not an answer, it’s a step. I’m just trying to imagine Sisyphus happy.