When the Body Changes, Are You the Same Person?
ALS has transformed my body and altered my radar
There is a story my father used to tell about me as a toddler. It was winter and we were outside in the snow, my three-year-old sister on tiny skis, me sitting on a toboggan, both of us bundled in snowsuits. A friend complimented my sister on her skiing skills, and my father pointed to me saying, “This is the strong one,” at which point I collapsed, provoking everyone’s laughter. I have no idea why I collapsed back then — perhaps I didn’t like the attention, or maybe I was aiming for the laugh — but that story became a guiding principle for my life. I am the strong one. As an 11-year-old camper I did not complain when we climbed mountains in sweltering heat, surrounded by clouds of mosquitos. Being strong, I pressed on. When I hiked in Scotland as a teenager, ten days in the pouring rain, boots soaked the entire time I, as a strong woman, embraced the challenge. In college and throughout my twenties, I biked thousands of miles because it was what a strong woman could do. As an adult I went through discouraging periods in my professional life, but I powered on because I was strong. And, as an older woman I enrolled in in hot yoga which I practiced for a decade, because it was an activity for strong people. It was a proud moment when a woman decades younger than I came up to me after a yoga class and said, “You are a beast!” I knew she meant it as a compliment, and I was delighted.
I am no longer strong. ALS has not only taken my voice, it has begun to affect my limbs, my overall nimbleness, speed, and stability. I can still walk and write and dress and feed myself, but I notice the subtle deficits. I can no longer close the hot tub cover. My left hand can’t exert as much pressure as it used to for ordinary tasks. My left foot occasionally drags. And walks that used to take half an hour have now expanded to forty-five minutes. Harbingers of greater weakness to come.
My body has changed in other ways too. I have always been on the lean side but, having lost twenty-five pounds (unintentionally) I am now too skinny. I, along with much of the rest of American womanhood, never believed I could be too skinny. I have watched this happen as if my body belongs to someone else. My…