The pain is the easiest part.
In my mid-20s, I consulted an orthopedist when my wrists started to feel warm after typing. He recommended ice packs and ibuprofen. In a thick Brooklyn accent, he asked, “You wanna take a couple days offa work?”
The couple days stretched into months, and then years. Though neither of us knew it, this was the beginning of a chronic illness, and his prescription for Advil seems almost quaint to me now.
The pain spread from my fingertips to my neck, and I couldn’t press a button or hold a piece of paper because of near constant throbbing. Seven years and $30,000 later, I have visited nearly 30 doctors, applied to the Mayo Clinic, and yet I still can’t use my keyboard.
I never did go back to an office.
My family and I looked everywhere for a cure, or at the very least, a diagnosis. We tried traditional MDs and PTs, alternative practitioners, and lots of Googling. The unusual nature of my symptoms granted me access to some of the city’s most sought after doctors. Several times, I saw the Director of Neuromuscular Diseases at NYU, the Chief of Plastic Surgery at New York Presbyterian (he extracted a piece of my bicep), and senior physicians at both Columbia and Cornell.
Though I was biopsied, x-rayed, MRI’d, brain scanned, and gave a couple gallons of blood to Quest Diagnostic, we were all in the dark about what was causing this persistent pain and disability. I didn’t even know whether it was an injury or a disease, so I just mumbled about “a condition,” connoting a weird, shameful thing. With my lack of diagnosis, I worried whether people thought I was making it all up.
This condition became the central part of most conversations. Friends and acquaintances expressed worry: “Did they figure out what’s wrong with you, yet?” Or, less helpfully, “Oh my God! This is so crazy!”
For weeks, even my father began all phone conversations by asking, “On a scale of one to 10, how is your pain level today?”
Chronic pain is not a problem to be solved.
Constant questions about my health only reinforced the feeling that chronic pain had eclipsed all other parts of my identity. I felt like I was walking around with a giant splinter in my body, and once it was removed everything would reset back to normal. I just needed to find the right doctor, the right drug, or the exercise or posture that was going to fix this.
My life had certainly drifted from normal. At home, the tasks I could complete shrank to a small and pitiful number. In the morning before my girlfriend left for work, she would fill several glasses of water with straws so I wouldn’t have to pick up a glass or touch the faucet. She’d place my lunch in the microwave and set the timer, and I would high kick the start button when I was hungry. We started leaving the apartment door unlocked just so I didn’t have to turn a key.
In time, I became more self-sufficient. I learned how to control my computer and my phone through speech recognition. I trained to become an Alexander Technique teacher, a health field that calms my chronic pain and helps others like me.
The physical accommodations come relatively easily.
It’s always been simpler to make the physical accommodations, the “hacks,” like buying frozen, precut vegetables, or going to the bank teller rather than the ATM to avoid buttons.
The murkier transition has been how to deal with this feeling that I’ve been displaced from my former life. How do I accommodate watching my friends start to take off in their careers, buy homes, when my afternoon at work consisted of struggling to edit a single cell in Microsoft Excel, and then needing to rest on the floor afterwards?
So while I’ve mastered dialing a phone with my nose, I still trip over my words when I describe my injury, disease, whatever.
Yet, here’s the kicker about chronic pain: I wouldn’t trade it for a second.
Day after day, I had to look at the dishes I couldn’t clean, the mail I couldn’t open. I began to see my inner workings as if under a magnifying glass. My mind struggled to find an achievement in these seemingly unproductive stretches, something I could point at and say, yeah, that’s why I’m a good person or that’s why I should feel any self-worth.
But what does it mean to be a human being when you can’t define yourself by how good your job is, how much money you make, what you can physically do, or even whether you feel comfortable in your body?
I never asked for this life. But I always wanted it. I always wanted to live a life that was present, brave and compassionate. Chronic pain has been unpredictable and humiliating at times. Yet, I don’t quite know how to say this other than my life feels more genuine, corporeal, and poignant now.
I’ve left the treehouse of my mind—where I endlessly strategized and compared myself to expectations—and climbed down into my imperfect body.
Sure, I still think about the kinds of apartments my wife and I could be living in, vacations we could take, and how our lives might be more secure if my body had never malfunctioned. But then I feel a little warmth in my forearms and I’m tugged back to the present moment, where my life is actually happening. I’m working hard to accept it—like we all do, healthy or not.
Author: Dan Cayer
Associate Editor: Kendra Hackett / Editor: Emily Bartran
Photo: Marina Caprara/Flickr