My voice these days emerges sounding like the slow deep rasp of an old woman; occasionally it resembles the high-pitched chirp of a child. It is no longer under my control. Receptionists and clerks raise their voices with me as if I’m deaf or dim-witted. My husband and friends remind themselves to slow down. I try to behave as if this is all normal, but it’s not. When I choose to speak there’s no way of hiding the fact that something is wrong with me.
Having always prided myself on being a nimble speaker, enunciating words crisply and inflecting my voice as needed, I have to admit to sometimes being embarrassed by this new disability, even though I have a diagnosis — bulbar-onset ALS — to explain the problem. Shame is perhaps too strong a word for what I feel, but it borders on shame.
There is another deeper shame too, that of having received such a diagnosis in the first place. Our culture — or is it our whole species? — is wary of weak, diseased people. We demand explanations for illness. And often the explanations we land on have to do with things we think the ill person has done wrong: eaten too much meat, gained too much weight, not exercised enough, not handled stress well, taken drugs, engaged in risky behaviors. Most people are too polite to say these things aloud, but we all — me included — have occasional thoughts that blame sick people for their conditions.
ALS, as of now, has no clear cause, so whatever I’ve done wrong in my life cannot be named. Yet still I feel there must be something I could have done differently to avoid this fate of early death. I feel shame in being weak, in being a loser in the durable-body-and-longevity game. I was once, not so long ago, certain I would live into my nineties going full tilt all the way. The pride I once took in my strength has ceded to a necessary recognition of my fragility, and in that recognition resides a modicum of shame I can’t entirely bat away.
Last week I had a Zoom interview/conversation with best-selling author Lisa Genova, a novelist and neuroscientist and public speaker who is quite famous. I was nervous. Many people would be watching; they would see and hear my imperfect body and speech. They would label me as a damaged person.
But as Lisa and I conversed, something unexpected happened. She is a skilled and gracious interviewer and, as a neuroscientist, is well acquainted with how ALS affects its victims. We talked about my voice briefly before moving on to discuss my forthcoming novel. A rhythm developed between us, an easy back-and-forth in which my slow speech ceased to matter to me — and, I think, to her. I have rarely been more relaxed in a public interview situation, and less eager to prove something about myself. My “imperfection” altered everything, banishing the entire notion of perfection itself. I felt liberated to be the person I truly am — no play-acting, no pretense. I was utterly exposed, but it didn’t feel dangerous, rather it felt honest, real, exhilaratingly free.
I’ve never been perfect — no one is, of course — but like many women — and men too — I have succumbed to a perceived pressure to be perfect such that the fear of not measuring up has controlled me far too often. I wish it hadn’t taken a fatal diagnosis to feel this freedom, but now that I’m here, I’m not turning back. My slurred speech and drooling are here to stay, so it’s time to embrace the humility, honesty, and liberation they bring.