My pain story: Part 1

So many people have tried to express the experience of my pain for me that I feel I must now fight back with an expression of my own. So here is my account of disabling pain. I’m writing it because before it happened to me, I had no idea it could happen to anyone. In all my life, I never heard about or imagined a future that looked like what mine became. Which is a shame.

Because as long as pain continues to be explained and defined only by medical professionals and ignored by disability activists who focus mainly on the ways society limits disabled people, people in pain will remain in darkness about large aspects of their own experience. 

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When I fell on my hip, I was living a quiet, lonely, jobless life in Ithaca, New York. I stayed in the drafty downstairs bedroom in a house with a family of four I’d lived with all through college. I was out of college then but had come back, from my budding dance career in New York City, for what began as a summer break and turned into a year and a half sabbatical. I occupied my time watching the young kids I lived with, cooking dinner, chopping firewood, reading in bed, jogging through the woods to a dying local mall, and journaling in Moleskine notebooks at the public library. In truth, I think I was hiding from the competitive experimental dance community in New York. Having begun dancing in my mid-twenties, I was surrounded in New York by people with more skills, and as much as I yearned to be a famous choreographer and performer in New York, I was tired of falling short. I was tired of the hussle it took to prove my dedication. I was tired, and wanted to be in a place where no one more accomplished stood beside me.   

In the midst of this break, my old college dance department invited me to show a piece in their annual dance festival. Working at night on Ithaca High School’s outdoor football field, I created a punishing solo where I somersaulted 300 times on a compass-like axis marked by painted yard lines. A month later, I taped the same axis to marley on a hard stage and did the piece in front of a live audience for the festival. Moving from astroturf to marley left bruises and friction burns all across my back, which I bandaged but kept performing. On the final night, after my 12 minutes of somersaults, I sprinted towards the end of the stage to end my solo and collapsed onto my left hip. I stood to bow, and immediately felt a shock: it was as if one of my legs had dramatically, suddenly lengthened. Standing and walking felt lopsided, and as I discovered the next day, running went from feeling like an effortless glide to a lopsided wobble. 

That night and the day after I pushed and twisted and arched my pelvis, trying to elicit a satisfying crack I felt was just out of reach: the sound of my pelvis and lower back moving back into place, my legs again becoming even. When no crack came, I lay on the floor of my bedroom and cried from fear. I was haunted by the idea of permanent damage, and in the coming days I replayed the night of my fall over and over again in my mind. If only I had used mats. If only my professors had discouraged me from doing my solo on a hard stage. If only I had backed out of the second performance. I obsessively compared the level of my pelvic crests in the mirror, looking for evidence of the shift I felt to be true. 

Scared of anything that reminded me of my new asymmetry, I stopped running. But other than that, in the absence of actual pain, life gradually returned to normal. I continued writing in notebooks at the library, watching the kids, and cooking dinner. But the feeling of imbalance remained in the background, a tiny voice telling me, this is a bad sign. If you don’t fix this, it will get worse.

I kept writing and reading. I moved back to New York City and began performing again, went to school for acting, and fell in love. I learned to swim freestyle as an alternative to running. I felt energized and happy. But after long bike rides, I would feel pain and soreness in my knee and think it was because of my lopsided pelvis. Despite the fact that I was so active—dancing, biking to Manhattan, climbing the stairs to my fifth floor apartment—I was still convinced that something was wrong with my pelvis and legs, and that I might not be so active for much longer.

Two and a half years after my fall, I was in Portland, Maine for a month, creating a dance theater piece with Jack Ferver and Michelle Mola. It was a hilarious, exciting process. I felt that my acting and vocal skills were sharpening. In the evenings after rehearsals, I ran in a local park, my first real runs since my fall, and they actually felt good. I wasn’t as aware of a lopsidedness in my pelvis. Encouraged by how good I’d been feeling, I spent days off from the residency going on long walks, first around Peaks Island and then to Mackworth Island, home of a famous school for the deaf, a 12-mile round trip. When I started home, the back of my knee was sore. It was minor, so I kept walking, but the soreness grew, and by the time I got home I was in sharp pain. That night I lay on an ice pack, the back of my knee burning and inflamed. I reasoned that my out-of-whack pelvis had caused the back of my longer leg’s knee to overstretch on my walk, and my fear of permanent damage came looming out of the shadows. It was from that point on that I began restricting my activity in earnest.

I began avoiding long walks or periods of standing, and my fear felt confirmed after I had the same knee pain after a walk over the Brooklyn Bridge and again while on my feet Christmas shopping at the MoMA store in Manhattan. I began to plan my days and activities carefully to avoid a recurrence of the pain, and this planning began to push other, more pleasant diversions out of my life.  

I began to turn down auditions. I stopped making dances. I stopped working at my office job as a freelance medical editor. I either stopped or drastically curtailed running, walking, cooking, shopping, rehearsing, going to dance shows, going to the movies, going to restaurants, taking the subway, playing piano, going up or down stairs, standing or even sitting in the shower, doing meditation retreats, and socializing. 

My life became focused more and more on avoiding pain, which mostly meant staying home in my bed and doing as little walking, standing, and sitting as I could. It also meant an obsessive focus on the pain, judging any increase as a sign to back off and slow down, and blaming myself whenever I felt I had “pushed it too far.” It was this fearful behaviour around the pain that inhibited my activity more than the actual pain; but it was hard to separate the two, because pain and fear were part of one another. In fact, but for a difference in texture, they were the same thing. 

All this avoidance was often difficult to manage, because I still had responsibilities. Balancing my comfort with my duties was delicate and exhausting. Anytime I was on my feet, I was looking for a place to sit. Anytime I was sitting, I was looking for a place to lie down. I used a collapsible stool and then a wheelchair, which took care of the need to sit, but lying down was trickier. Pain made me lie down on city sidewalks, subway platforms, trains, taxis, restaurants—any bench or out-of-way patch of ground I could find. Eventually, even lying down was painful if it wasn’t on a soft surface, so I bought an inflatable mat and blew it up wherever I needed to lie. From then on, my conversations, gatherings, and doctor’s appointments became interrupted by the 15 or so breaths it took me to blow up my mat. 

In spite of all this taking care, the pain spread. Anything I did too vigorously or without enough preparation could cause pain to blossom, or even to pop up in an entirely new part of my body. Twenty spontaneous pushups in a park kicked off several months of pain in my right shoulder. Picking up blocks at a kindergarten summer camp led to several months of lower back pain. Singing in my wife’s choir one Sunday brought on pain in my throat that made it hurt to talk. A mindless moment of chewing on frozen chocolate chips brought on several months of jaw pain and a steady diet of smoothies. A hard swim brought on a scary, weeks-long bout of pain in my lower ribs. Lying down to type led to a persistent neck pain that got so bad I couldn’t stand to look at anything for nearly a year: a screen, a book, my wife or infant daughter. But even though each one tended to pass, the effect of all of these pains together was to keep me seriously off balance. 

I kept wanting my pain to stay put so I could get used to it and get on with my life, but because it was always changing, I could never adjust. Or rather, I was always adjusting: emotionally, psychologically, and even physically, adjusting my arms, propping my legs on pillows at just the right angle, adjusting my head and my posture at usually futile attempts to reduce my pain. The term adjustment to disability has been criticized by disability writers, because it implies there’s a specific endpoint when one is fully adjusted (Olkin, 1999). But for me, that’s what I was going for. I wanted to finally adjust and settle and get back to other things in my life. But as soon as I adjusted to one level of pain and one set of impairments, something would happen, a major flare-up or a new pain, and I’d have to readjust. 

The cause of all this adjustment was a nervous system that had become so good at feeling and producing pain that it magnified risk everywhere. In medical terminology, this is called central sensitization: when your central nervous system becomes so good at producing pain, at detecting risk, at predicting threats, that you start to see danger everywhere you look. 

This sensitization had the effect of wiring my pain system to anything in my life that was stressful. Bright lights or loud sounds could bring on the pain. If my wife lay down on our bed in a way that made me feel trapped between her and the wall, it could bring on the pain. My infant daughter crying could bring on the pain. Being caught in a too-long conversation could bring on the pain. Waiting for an Uber that didn’t show up on time could bring on the pain. Anything that didn’t go according to plan could bring on the pain, and anything that brought on the pain, if not retreated from immediately, would bring on panic. 

This overactive, sensitized nervous system was also the reason that I experienced one of my saddest symptoms: a slow loss of beauty. In the years before falling on my hip,  I habitually took long walks, pausing to stare at scenes and objects, trying to grasp the essence of a stand of trees, a parked car, a neon hotel sign. Most days, I spent hours at the library writing subtle feelings into large brown notebooks, like the feeling of watching evening blot out the sky through the library windows, of seeing cars’ tail lights float up a steep street, of recalling childhood hikes through rough chamise that made my pantlegs smell like candles.

This was a deeply meaningful part of my life. I did not know what I was searching for with all this appreciation, but feeling it and expressing it felt crucial to me. Capturing these subtleties was the reason I made dances, wrote, and spent so much time outdoors. And I lost it. Slowly, my worries grew to eclipse subtlety and calm entirely. My focus shifted from beauty and meaning to discomfort in my body, which my attention magnified until it became monstrous, blotting out every other interest I’d ever had. 

I did not notice this loss of beauty for a long time. It was easy to forget about something that was so ephemeral to begin with. Slowly, my interests and desires dried into a tightrope and all my energy became concentrated on not falling. What was below me was a phantom, a vague future of permanent pain and fear; but, somehow, avoiding it only brought it closer. 

As my pain and anxiety grew, it heavily influenced even the major events in my life: my engagement, my wedding, the birth of my first child. I had a major pain attack while my fiance and I were shopping for wedding rings at an Etsy fair; I had another one when we rode bikes across Martha’s Vineyard to a beach that was to be our engagement location; and during my wedding ceremony, I was as focused on my need to sit down as I was on the woman standing before me. 

But this was minor compared to what I experienced during the birth of my child. All during my wife’s pregnancy, I was terrified. Would there be a soft place to lie down? Would the doctors accommodate me? I missed every checkup with my wife and her doctors because of pain. During my wife’s early labor, I left for large stretches to lie down on a bed and meditate. When she gave birth at the hospital, I was mostly lying down on a couch next to her; in my wife’s memory after the birth, I hadn’t been there at all. My daughter was in the NICU with breathing issues for two weeks after she was born, and my inability to sit without pain prevented me from being able to see her. This was all tremendously painful, emotionally. And still, there were some bright spots in my daughter’s birth: I did a lot more than I thought I could; I really enjoyed getting around in my new wheelchair; I found a lovely bedroom for sleepy parents next to the NICU that became my lifeline. The real difficulty for me began when we got our daughter back home. I was unable to contribute almost anything to the care of our child, other than continuing to work my medical editing job part-time from home. It took me months to work up to doing a single diaper change, which felt like a huge accomplishment. Also during this time, I was having frequent pain attacks, panic attacks, and deep depression. The effect of this intense difficulty, the worst I had ever felt, was a resolve to take a drastic step toward recovery: a long-term, full-time chronic pain recovery program, the culmination of years of smaller-scale searches for an answer. 

Because from the time I fell on my hip, I had been looking for answers, mostly from medical doctors. I saw general practitioners who referred me to specialists who invariably sent me in for imaging or tests. I got X-rays and MRIs of my shoulder, knee, pelvis, back, and jaw, extensive blood tests, Lyme disease tests, and rheumatology screens. The doctors occasionally found some minor issues, but they were all normal, age-related changes and nothing that would cause what I was feeling. I heard some disbelief or denial of my pain (infuriating), some encouragement at my efforts to undo it (encouraging), and some half-hearted attempts at mild diagnoses (unhelpful), and finally one honest professional who simply, kindly told me, “I don’t know what’s wrong with you.” So I tried alternative routes. I saw physical therapists, chiropractors, acupuncturists, rolfers, integrative health specialists, Feldenkrais practitioners, and Alexander technique teachers. It was a mixed bag: some I liked, some I didn’t, but regardless, nothing they did helped much. 

With every professional, my explanation was the same. I was convinced that I had damaged my pelvis during the fall on my hip, and that this was the source of all the subsequent pain in my body. But no one could confirm that I had injured my hip, and no one could shift it back into place like I thought needed to happen for all of this to go away. So a cure continued to elude me. 

In a succinct, impassioned essay on the idea of cure, Liz Moore (2020) explains that much of disability studies resists the idea that people with disabilities need to be fixed or changed, instead asking society to do the changing. But then there are those people like me (and like Moore herself) whose disabilities are inherently difficult because of pain or fatigue. Unlike getting around in a wheelchair, no amount of accommodation can soothe an inflamed joint or a crippling lethargy. We who are disabled in this way, by pain or fatigue, can struggle between our desire for a cure, a change in our condition, and our desire to accept ourselves as we are. It’s hard to live with pain, and it’s hard to live in hope of a painless future that never arrives. 

So eventually, I stopped putting so much effort into finding a cure and started putting my effort into accepting the pain as it was. I did this through the lens of Zen practice and a bunch of books on contemporary spirituality, aided by an association with a Zen Center in my neighborhood. What this looked like in practice was a lot of lying still (meditation) and a lot of talking into a tape recorder (inquiry). 

Allowing my life to be as it was, pain and all, wasn’t easy. But sometimes it happened, and when it did, I experienced a deep clarity and freedom. These experiences made me think that the answer to my pain was more spiritual practice, more acceptance. So I stopped going to doctors and put all my attention into my practice, spending long days at Greenwood Cemetery challenging what I thought I knew about pain: I want this pain to go away. Is that true? In order to be happy, I need this pain to go away. Is that true? The freedom and wisdom I found felt miraculous. I was convinced I had found the way forward, and it gave me hope and purpose. I began to judge the success of my life and recovery by the depth of my spiritual insight. But in practice, accepting the pain as it was, doing hours of mindfulness practices about pain, just wrapped my life more and more around the pain, making it the only meaningful thing. So even though these practices were focused on making peace with pain, they ended up making my life narrower. Despite rewarding me with some of the deepest periods of calm I have ever felt, spirituality was not a route towards ultimately decreasing my pain, my anxiety, or my fear. In fact, I was using spiritual practice to try to free myself from pain while continuing to avoid pain. Because most of these spiritual practices I did lying down, in passive escape. I just didn’t know how to face it, or that I should at all. 

By the time my daughter was born, I realized that spiritual practice wasn’t the answer. I had exhausted the talents of medical professionals near me, and so I began to research inpatient and outpatient chronic pain treatment programs around the country, seeking professionals who I hoped were experts at helping people like me. The most promising program I found was at the Shirley Ryan Ability Lab in Chicago. The program was a month of full-time treatment, and comprised meetings with physical therapists, occupational therapists, psychologists, doctors, nurses, and experts in biofeedback and pain science. I liked what I heard about it from the intake coordinator and from a former patient she referred me to. So, after six months of planning, haggling with my insurance company, and saving money, I flew to Chicago for six weeks in the middle of the summer of 2019. 

(To be continued)

References

Moore, L. (2020). “I’m Tired of Chasing a Cure.” Disability Visibility. 76-81.

Morris, J. (2001). “Impairment and Disability: Constructing an Ethics of Care That Promotes Human Rights.” Hypatia 16(4): 1.

Olkin, R. (1999). “The Minority Model of Disability” (Chapter 2), What Psychotherapists Should Know about Disability. New York: Guilford Press.

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