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?”

Those couple of days stretched into months, and then years. Though neither of us knew it, this was the beginning of a chronic illness.

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 nearly 30 doctors later, I still can’t use my keyboard.

caver11I never did go back to an office. My family and I have looked everywhere for a cure, or at the very least a diagnosis. We tried traditional MDs and PTs, alternative practitioners, and lots of Googling. Like many with chronic pain, I was biopsied, x-rayed, MRI’d, brain scanned and tapped for gallons of blood.

The unusual nature of my symptoms granted me access to some of the best specialists. Still no 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?”

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. But often, chronic pain cannot be resolved.

My life had certainly drifted from normal. The tasks I could complete were limited. Before my girlfriend left for work, she would fill glasses of water with straws so I wouldn’t have to pickup a glass or touch the faucet. She’d place my lunch in the microwave and set the timer. We started leaving the apartment door unlocked just so I didn’t have to turn a key.

caver22Over time, I became more self-sufficient. I controlled my computer and my phone through speech recognition. I trained to become an Alexander Technique teacher, a method that calms my chronic pain and allows me to help others.

The physical accommodations came relatively easily. The murkier transition has been dealing with this feeling that I’ve been displaced from my former life. How do I accommodate watching friends’ careers take off, when I struggle to edit a single item in a spreadsheet, then need to rest on the floor afterwards?

So while I have mastered dialing a phone with my nose, I still trip over my words when I describe my injury. My disease. My whatever.

Yet, here’s the kicker: I wouldn’t trade my experience for a second.

Day after day, I had to look at the dishes I could not clean, the mail I could not open. I began to see my inner workings as if they were under a magnifying glass. My mind struggled to find an achievement in these seemingly unproductive stretches, some-thing 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 much you earn, your job status, or what you can do physically? I never asked for this life.

But if you think about it, it was exactly what I wanted. I always wanted to live a life that was present, brave and compassionate. Chronic pain has been unpredictable and humiliating at times. Yet, more than ever my life feels genuine, corporeal and poignant.

Sure, I still think about vacations I’d like to take, or how my life might be more secure if my body had never malfunctioned, but then I feel the warmth creep up my forearms and I’m tugged back to the present moment, where my life is actually happening. I’m working hard to accept it—as we all do, healthy or not. {PP}

 

 

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