In 2002, shortly after I broke my back in a freak fall, a doctor told me I would have nerve pain for the rest of my life. I reacted with great indignation. What kind of doctor says that, I complained at the rehab center where I recovered from spinal cord surgery and learned how to live life paralyzed from the waist down. I eventually accepted life in a wheelchair, but I wanted to hear someday, my pain would go away.
It's been sixteen years since my spinal cord injury, and so far, that doctor's prediction has been correct. I no longer fight the notion that each day until my last will include moments of excruciating pain. But wait, please stay with me; the good news is I'm doing well anyway.
I'm writing this sentence after pain woke me up at about two o'clock in the morning. It's like in my left leg there's a loose wire delivering shocks so intense I have to muffle my cries so the neighbors don't think I'm being tortured or having loud sex. My permanently damaged spinal cord reacts to changes in the weather, from hot to cold, from cold to hot, from warm to dry, from dry to wet. I'm a goddamned human weathervane.
Pain is embarrassing to describe. Yet when pain gets the gets the best of us, it blots out the sun. It's too big to ignore.
I've been hearing quite a bit these days about pain acceptance as an antidote to the opioid epidemic. The idea is by accepting the fact that discomfort accompanies our lives, we won't need as much medication. Okay. So how do you obtain this acceptance?
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My journey to my own version of pain acceptance began with heavy opioid use.
I've never believed in the power of prayer, but I did believe in medical science. I broke my back at age thirty-two and had never before experienced any significant prolonged physical discomfort. I figured because of the acute and frequent nature of my pain, my prayers at the altar of medical science would be answered.
Doctors blessed me with prescriptions for opiates. All my memories from the time of the accident that partially severed my spinal cord through the subsequent two years are in the smudged pastels of an opiate haze. Nerve pain is infamously hard to treat, and opiates don't really do anything for it except make you so high you don't care your body is metaphorically on fire. I took a ton of dope: Roxicodone, Methadone, Fentanyl (lollipops and transdermal patches), Percocet, and those are the ones I can remember. The drugs didn't stop the pain from turning me into one clenched muscle. I went to the ER over and over, praying the people there would find a way to stop my central nervous system from attacking me.
During this period, I nodded off while on the phone, the party on the other end of the line wondering if I'd OD'd. I fell asleep while pushing myself down New York sidewalks, slumping in my chair to nap while parked in sun, rain, and snow.
I got off the dope after I fell on my head one morning.
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Because of all the medications, I'd been regularly sleeping through my alarms, missing work and doctors' appointments. One day, I bought another clock radio, so I had three, tuned to different stations; I set each at the maximum volume, programmed the alarms, and went to bed thinking for once, I'd get up on time.
The next morning, I woke up on the floor, one side of my head aching. I'd thrown myself at the clock radios to silence them when they went off and missed my chair. I didn't know I was in my Manhattan studio apartment. I thought I was in my childhood home in Oregon, which I'd left over fifteen years before. I didn't know why I couldn’t walk. The radios made an absurd din, and at first, I thought a crowd of invisible yelling people surrounded me. I traced the cacophony to the radios and unplugged them. I saw my wheelchair but didn't recognize it or connect it to the fact I couldn't walk.
I hadn't forgotten everything. I knew in an emergency, you had to call 9-1-1.
That's what I did. When I told the Manhattan operator I lived in Oregon, she began to really yell, bringing me around. EMTs took me to the nearest ER, where the doctors diagnosed me with a concussion and told me to remain in bed for twenty-four hours.
I left the hospital, went to Blockbuster to rent movies and buy snacks, and headed home for my period of bed rest.
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I got into bed and put one of the movies on.
And then, I stood inside a dark room. My legs turned to rubber, and I fell to my knees. Insects, live ones, carpeted the floor. I shrieked when they wriggled under my hands. Then I heard something big, close behind me, crunching over the bugs. I could just make out, when I turned, a smiling man-thing with the head of a toad.
The scene changed, and I had returned to my studio. I lay in bed while one of the rented movies, The Matrix, played on the TV. I tried to watch it, but the plot ran together like a box of melted crayons. My brain was a dollhouse pitched on its side so its furniture lay in all the wrong rooms. Time ran non-linearly. I looked at my pill box and had no idea of the day, didn't know when I'd last taken my medications. I thought I'd taken too much. I thought my ODing was messing reality up, and this is what dying felt like: solidity dissolving into a puddle of nonsense. I picked up the phone and called 9-1-1 again.
I ended up in the ER I'd been in about twelve hours before. The doctors there, probably tired of me and my opiate-related shenanigans, decided I needed to quit my medications cold turkey and admitted me to the hospital to monitor my detox. My hospital roommate had a gastrointestinal ailment involving continuous puking. Across the hall, an elderly woman screamed regularly. I spent about a week there, dope sick and tripping balls. It was seven days of this scene:
Roommate: Vomit. Vomit vomit vomit.
Lady across the hall: I can't breathe! I'm dying. Dying!
Me: Hallucinating something involving a meat hook.
If somebody had, during this time, wanted to put me down like an ailing cat, I probably would've said, you know what? Sounds like a pretty good plan. I don't have any dependents. Let's go.
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Afterwards, I was sober and clear-headed for the first time in years. I didn't feel better, body-wise. But I accepted I would experience pain and had to work around it. I knew I could undergo my body's garbage without dope and not spontaneously combust. Off opiates, I got stuff done without falling asleep.
But I was miserable from exhaustion. Just because I didn't rush to the ER regularly didn't mean nerve pain wasn't my constant companion, meaning no sleep, no appetite, concentration constantly interrupted. After a particularly gruesome week, a friend took in my face and suggested weed.
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Part of the reason I can accept my bodily complaints with relative equanimity these days is I’m a huge pothead. Marijuana distracts me from nerve pain, allows me to do my work, restores my appetite, helps me sleep. Snacking too much and giggling like a maniac at dank memes are probably the worst side effects.
I now get my weed through the Pennsylvania medical marijuana program. About a year ago, I scheduled an appointment with a doctor to get my certification. I figured since the program is administered by the state, getting my marijuana card would be a coldly bureaucratic process.
And I looked forward to a boring way of copping, because buying off the street, especially when you can't walk, is wearisome, even though I had a reliable dealer, Curtis, from West Philly. I got to know Curtis’s family. I learned how his felony conviction and poor health made his finding legitimate jobs almost impossible. At one point, we traded books. It's the reason why he now has a novel by Ford Maddox Ford, and I have instructional books about Islam.
But it wasn't always happy cross-cultural bonding. Curtis would occasionally do freaky things, like when he showed me the gun he carried for protection. In applying for my medical marijuana card, I looked forward to paying for my weed in a way other than furtively passing cash in a plastic bag on the corner of Fifty-Second and Chestnut, looking out for cops.
Dr. Nawabi, my marijuana doctor, is based in Florida, and he flew up to see his Philadelphia patients applying for their cards on a particular Sunday evening. My appointment with him was in an almost deserted office building with a hand-lettered sign on the front door instructing patients to go to the office Dr. Nawabi had rented for the night.
Somebody ushered me into a conference room where the doctor's assistant, a guy in a purple shirt partially unbuttoned, spoke about how much he loved ganja. His nightly ritual? Combining edibles with cocktails. He crowed, "I sleep like a baby." Something about his delivery uncomfortably reminded me of this guy I dated a long while back who liked to get his cat stoned by blowing smoke in its face.
One of the other card applicants worked as a matchmaker, and the doctor, she said, had asked her to find him a date, like they'd bartered services. The matchmaker knew nothing about weed and wanted advice. Purple-shirt guy said, "Well, do you want to get high?" Like we were in high school or a South Park episode.
I met with the doctor, and then his nurse, who told me about how she'd been in a wheelchair for two years because she'd been in a car accident that resulted in her losing sixty percent of her heel. Sixty percent, she emphasized. She took off her shoe and sock and showed me her foot with her mostly missing heel, the sole a mass of scar tissue.
This wasn't the impersonal bureaucratic experience I'd been hoping for.
But I got my card. My favorite dispensary has one of those indoor waterfall things and plants and coffee table books about marijuana strains. The last time I went there, staff gave out aloe-flavored lip balm and little tins of mints to their dry-mouthed consumers.
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So, what does this mean in terms of pain acceptance? My life did get better when I stopped hoping my pain would go away. But I haven't found a way to appreciate life and ignore my pain without marijuana and acupuncture. Both help separate my body from my emotional weather, so I'm mostly chipper despite what's going on with me physically. And there's work (teaching, writing), which forces me to look away from the demands of my body. So, I simultaneously accept I will feel terrible and employ strategies that help me live meaningfully.
I'm lucky to be living a happy and productive life that happens to have a lot of pain in it. Others can have the same if we more fully understand the brain's role in the perception of pain and provide greater supports to those with chronic pain. The recipe of acupuncture, weed, and work doesn't benefit or isn't available to everybody. We thus need a greater understanding of what it takes for a life involving pain to be a good one and more support of the methods used to alleviate chronic pain.
The danger of the pain acceptance movement is it may oversimplify the mystery of how the brain shapes how we experience things, making the ability to live with pain seem less a mystery and more a mere matter of stony-jawed fortitude.
If we come to further understand chronic pain, those who experience it will be able to manage it better. Maybe embracing the idea that a good life can be had despite chronic pain is the kind of pain acceptance we really need.
Julie Rea’s work has appeared or will soon appear in several anthologies, The Intima: A Journal of Narrative Medicine, BLYNKT, TERSE. Journal, and Broadswords and Blasters. She lives in the Philadelphia area, where she teaches and writes about life in a wheelchair and other fascinating subjects.