What Does Wellness Mean When You’re Living With an Incurable Disease?

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Muscular dystrophy came for my vision first, although I did not know it at the time. On the second Friday morning of April 2020, I realized quite suddenly I couldn’t read out of my right eye. I could see, but I couldn’t distinguish words. In the bedroom, I asked my wife to place a book I had never seen on the dresser. With my left eye covered, I turned around and: nothing. The cover was blended like the clouds of a Bob Ross painting. Four days later, an ophthalmologist examined me. I hadn’t noticed anything wrong with my left eye (yet), but he certainly did. You have cataracts, he told me, in both eyes, at age 31.

Two months later, I started feeling this immense ache up and down my arms. Then I began losing strength in my hands, which I noticed while changing the oil in my car. With the wrench in my right hand, I went to loosen the plug on the oil pan, and my wrist and fingers felt like Jell-O. When I tried to let go of the wrench, my fingers instead curled toward my palm, contorting my hand like a claw. It was the same if I tried opening a jar or turning a doorknob. 

Soon after, I noticed my jaw and tongue cramped up every so often, making it difficult to speak intelligibly. For a year I saw an orthopedist, and then physical therapists at the Johns Hopkins Hospital in Baltimore who put me through a month-long regimen of stretching activities to see if that would fix the problem.

When I knew the physical therapy wasn’t working, the orthopedist ordered an electromyography exam. These are tests that measure the electrical activity in your muscles and nerves and are one way to determine if you have pinched nerves—which, for a while, I and the doctors suspected was behind my faulty grip. But when the doctor stuck a tiny needle into the skin between the thumb and wrist of my left palm, the unmistakable noise from the machine next to me was that of a dive-bombing plane. He told me it was a sign of some sort of mistake in the ions that enable muscle movement and told me I would need to see a neurologist.


Illustration by GQ



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