Opinion | What if the Pain Never Ends?
One morning a few years ago, my partner, Donika, rolled over in our bed, looked at me and sighed.
“I feel like I’m competing with that thing,” she said. The “thing” was the Snoogle, a maternity pillow longer than my body and hooked at both ends. It was recommended to me by a movement specialist during a two-hour session in which she took videos of me walking, suggested I buy some spectacularly ugly shoes and charged me almost $400.
Our bedroom was already littered with bizarrely shaped accouterments I’d purchased from the internet, including a pillow fortified with a metal arch, a configuration of memory foam that I wedged between my thighs and secured with a Velcro strap, and something we referred to as “the pool noodle,” which tied around my waist.
My journey into the deep web of memory foam products was not spurred by a pregnancy but by my unwilling membership in one of the biggest clubs that no one ever hopes to join: the bad back fellowship.
For the first 35 years of my life, I enjoyed the sense of pain-free indestructibility that many young people feel entitled to. I ran long distances without stretching, went on solo road trips across multiple states. I was unfamiliar with the concept of spinal health. It’s not that I’d never been hurt. I was a former heroin addict and a lifelong klutz. My body was covered in scars, but somehow all my physical injuries seemed to have been superficial. I was always able to recover, heal and move on. I had a kind of pride about this that now embarrasses me — as if by pushing my body to extremes, I could keep proving that I was impervious to lasting harm.
Then my lower back started hurting. At first, it was just a stiffness in the mornings. I assumed that it would just go away, as my physical pains always had. Instead, it worsened, until getting out of bed in the morning was a 10-minute process in which I curled like a snail on my side and inched my way to a sitting position, then a standing one.
I had always vaguely suspected chiropractors of being charlatans. I swallowed my pride and called one whom a close friend swore by, who practiced something called Sacro Occipital Technique. He informed me that my years of solo road trips, crossing my legs at the knee and sitting at a desk all day were over. I got a standing desk, saw him twice a week for two months and, to my enormous relief, was seemingly cured.
I was single at that time, and grateful to have dealt with the ordeal alone. The idea of being needy or physically dependent on anyone terrified and even repulsed me. Over the years, my partners often complained about feeling extraneous. Of this, too, I was proud.
In 2018, I had been dating Donika for over a year, long distance. That spring, she moved from Western New York to Brooklyn. I was so excited that I drove the seven hours north to help her pack the truck and followed her back the very next day. That evening, my back seized in a violent spasm. I spent a couple of days on the floor in agony, and then gingerly made my way to my feet. I was on the mend, I thought. Then my butt started throbbing. It was like a migraine in my left cheek that began to inch down my leg.
I visited my chiropractor, then my physician, and learned that the pain in my butt was my piriformis, a muscle spasming with irritation from the nerve that ran through it and down my leg. I’d never experienced a pain this prolonged. For a week, I couldn’t stand for longer than 10 minutes; after that, it felt as if a searing wire were threading through my foot and up my leg. There was no comfortable position to sleep in, so I didn’t sleep.
I was 15 years sober at the time, and uninterested in narcotic relief, though my doctor assured me that opiate pain medications were unlikely to help anyway. I took muscle relaxers, a course of oral steroids and every over-the-counter pain medication, but nothing helped.
Immobilized, I spent the days awash in fear that it would never pass and disgust at my new dependency. The sciatica had caused a condition called foot drop, which left my big toe slack. That, combined with my inability to sit, made putting on my own shoes almost impossible. Within days of my girlfriend moving in, I’d become utterly dependent and was in constant pain — my worst nightmare.
If I had known more about back pain at the time, I might have gone easier on myself. A recent study published in The Journal of the American Medical Association reports that as of 2016, Americans spent more annually on low back and neck pain than any other condition — an estimated $134.5 billion. A 2002 survey found that 8 percent of adults in this country suffer from chronic back pain, and a 2006 study estimated that 80 percent of Americans will experience back pain at some point in their lives. Despite all this, having a bad back is typically seen not as a disability but as a condition that needs fixing, one that money and the right contraption are sure to fix.
And I was determined to fix it. I saw my pain not as an inevitable condition of having a body, but as a problem to be solved, an unwelcome sojourn in a place I didn’t live. The most acute discomfort was the fear that the pain would never end and that my notion of a pain-free life had always been a fantasy.
As I lay on the floor, staggered around my apartment and whimpered as I attempted to sit on the toilet, I thought of my friends with chronic pain. I thought of the people who live with a permanent physical condition with which they struggle and others disabled by a society that privileges a certain kind of body and set of abilities. I had always thought that I was sensitive to their burdens, but it was now clear that I had failed to even vaguely imagine them. My worst nightmare was an ordinary part of life that millions faced while accomplishing many of the same things I did, and more.
The physical therapist I saw next told me I had to keep moving and the pain would eventually abate. So I did. I clutched my partner’s arm and shuffled out of his office and down the crowded sidewalk, grimacing. The annoyance of people who strode past us was palpable. How slowly I descended the subway stairs! The elevators, when I could find one, stank of urine. I was ashamed to realize how ignorant I’d been of this reality that was just a part of daily life for so many in the city.
The pain went on for months. Whenever the fear struck me — what if it never ends? — I countered the thought: So what if it doesn’t? I would have to face that situation with dignity. I began to understand that beneath my hubris and sense of invincibility, something truly misguided was lurking: a belief in the inherent superiority of a life of full physical ability. I did not invent this belief, of course; our culture is saturated with it, from our language to our infrastructure. It is an illusion we use to dismiss the disabled, to soothe ourselves and to sell things to one another.
I also began to see how my stubbornness in the face of this pain, my struggle to conquer it by force of will, mirrored the stubborn denial that I held on to in the grips of my drug addiction. I had always been overwhelmed by my emotions, and eager to disable them, to deny them, defeat them. Of course, I could not. I came to understand my addiction as a condition that could be managed but that had no cure. To stay sober, I had to learn to accept my emotional pain, to tolerate my own feelings. I also had to accept something that my superdriven self was most afraid of: that I needed help. But somehow, in the depths of my journey through back pain, I didn’t see the connection, and continued resisting and fighting.
I religiously practiced my physical therapy exercises and saw my chiropractor, and over the course of many months, my condition improved and eventually went into remission for two years. I threw out the foam contraptions, returned to my writing while slowly walking on the treadmill desk I had graduated to. I believed that my body was fixed.
But this past autumn, soon after moving from Brooklyn to Iowa City, the ache in my back returned and brought with it an excruciating three months of sciatica. I went to a sports medicine clinic, then a neurologist and finally a pain clinic. I took new kinds of muscle relaxers, mostly ineffectual, and gabapentin, which helped. An MRI showed me the herniated disc that was the source of my pain.
After a steroid injection in my piriformis — about as pleasant as it sounds — and some marked improvement, I risked going on an artist residency in New Hampshire. Five days in, the pain had pinned me to the floor, unable to walk. There I was again: I needed help.
My 65-year-old mother had to drive six hours to scrape me up and pack all of my things. In the weeks that followed, she found me a walker, ferried me to a clinic for a spinal steroid injection and, on one agonizing night, fashioned a makeshift bedpan out of Tupperware. The privilege of having someone willing and able to care for me in this way with love and for no pay is not lost on me.
Susan Sontag wrote in “Illness as Metaphor” that “everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” How reluctant we are to admit that there is only one kingdom and some of us simply have yet to travel its rockier terrains. It is inevitable. We will all need care. We will all long for accommodation. Until then, we can choose to what extent we want to indulge the fantasy that wellness is a condition we have somehow earned, instead of an ephemeral luck that is guaranteed to run out.
Even as my pain has subsided again, I understand that I am not “better.” I am different. Pain has changed me. I understand that it will return, in one form or another, and that I will need the care of others, and I am determined, when that time comes, to meet it with gratitude and grace. My worst nightmare is no longer to live in a state of chronic pain and dependency, but to resume my old belief that such a life is inferior.
Melissa Febos is the author of two memoirs, “Whip Smart” and “Abandon Me,” and a new essay collection, “Girlhood.”
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