THIS IS US
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 former thunder thighs have lost muscle mass and shrunk to some version of sticks covered with skin that sags like empty pockets, like the skin of a much older woman. I always wanted thinner legs, but now that I have them, I’m not so pleased. My thunder thighs were strong and capable — they were particularly adept when it came to dancing — which cannot be said of my thighs in their current withered state.
Perhaps the biggest outward change to my body are the new “orifices” that I’ve been given, replete with hardware. One is the port through which I receive infusions of the ALS drug Radicava. During the ten days of the month when I get the infusions a needle goes into the port on my chest and stays there, bandaged in a way that is difficult to conceal. And hanging from my belly is a new feeding tube. It has an unexpected weight and needs to be taped in place to prevent it from flapping as I walk. Looking down I see a lot of stuff covering the front side of my body. For now, body-hugging clothing and belly-sleeping are out.
It wasn’t until a decade or so ago, when I was in my fifties, that I came to fully love my body. My yoga studio held a “Love Your Body” photo shoot and people of all ages, sizes, body types, came to the session in black shorts and, for the women, black bra tops. There was no hiding — we let it all hang out, whatever “it” was, as we assumed various yoga postures. The occasion was, for me — and for others too, I think — transformative. We were all strong, with bodies that mostly did our bidding. And strength was prized there much more than our appearances. (I recommend such an activity for anyone suffering from body image issues!)
So, who am I now with this new body of mine, neither strong, nor “attractive” (all that saggy skin), and often needing to nap? Where is the me in there? Is the me in there different from the former me? Can I feel strong in the absence of a strong outward presentation, when doing things in the world is so much harder? The answer to that question is still being formulated. My inner fierceness hasn’t died, but I think I have a different role to play in the world. Part of that role has to do with the greater empathy I feel. I don’t think that before this I’ve been lacking in empathy exactly, but I’m aware of how personal strength can lead to a kind of unwitting sense of superiority that blinds one to the weak. When I am out and about now, I seem to see more marginalized people around me — the disabled, the down-and-out, the not-strong. They were always there, but I wasn’t taking them into my sphere of attention fully. Now my noticing is no longer an act of noblesse oblige — I am one of them.
So am I the same person? Yes and no. A former partner of mine, a man who is tall and notably lean, was a fat kid (he says this of himself) until a baseball injury to his kidney caused a hospitalization during which he lost a great deal of weight he never gained back. But to this day the kernel of the fat kid persists in him, reminding him to keep his weight in check. So maybe the long-ago strong girl persists in me too, even as I appear in another guise. My radar is altered: I see and hear some things differently than I used to. And yet my consciousness, I think, remains unchanged. I know how the world views me differently, and I try not to let that impress itself too deeply on who I see myself to be. Perhaps my identity is different but my soul feels the same.
The full answer to this question will emerge over time. For now, I will think of myself as Cai 2.0.
