I wonder … is this genocide? No, of course it isn’t, I tell myself. Genocide is the brutal, bloody business of exterminating an entire group of people based on a particular feature or trait. That’s not what Zolgensma is.
But … isn’t it?
No, of course not. My kind are not being killed, they’re being saved. SMA people are flawed and need to be fixed, to be given normalcy: strength, independence, long life. The scientific breakthrough of Zolgensma does that. It’s definitely not genocide — if anything it’s a cure. Not like when Duchenne people get weeded out before implantation, or when Downs people, with their wide set eyes and their moonlike faces, are terminated before birth, never allowed to see the light of day. Zolgensma isn’t like that. It doesn’t destroy human beings. It corrects them. One infusion in the spine of an affected newborn and the defective gene is bypassed, assuring normal development of motoneurons, normal life. Problem solved. And that’s a good thing.
But then why am I uneasy? Why do I feel a grief down deep in my bones, a silent, sorrowful sort of mourning? My kind will never be seen again. We will look different than we do now, moving differently, living differently — looking, moving, and living like everybody else. Won’t we think and feel like everybody else too, then? Stripped of our particular suffering, the unique perspective of my kind will be gone…. No more physical stillness to stimulate the motions of the mind, to sharpen observation, to hone imagination, to progress in wisdom as disease progresses, to ponder and to know a million things that those who are not our kind cannot fathom. Should we be bereft of these abnormally bright people of mine, who are amazingly well-adjusted and intelligently joyful, showing forth the strength of something greater in our weakening bodies, inspiring new perspectives, compassion, and parents of great sacrifice — of abnormally strong love?
Maybe I’m just being selfish. Maybe I’m jealous that Zolgensma came too late for me. And for my parents. I may have taken the series of Spinraza infusions for adults in order to, at least, slow the progression of the disease, but that also came too late. I’m too advanced. Nothing can stop the wilting of my hand, muscles withering, or the narrowing of my airway, crushed and choked by my ever-collapsing spine.
Normalcy is very attractive. Maybe it’s call should be heeded, whatever the cost, rendering some kinds of living into obsolescence. Maybe my kind should be changed forever.
Still … I can’t help feeling like something is missing, like something is being lost in the quest to save. And only some older members of my kind can sense an odd sadness for the future.
© 2022 Christina Chase
Like my post last week, this reflection was written for a writer’s group from the prompt of “obsolescence.” For quite some time, I had been wanting to write about what it’s like to miss out on a medical miracle, and the idea of obsolescence prompted me to finally do it. My feelings, opinions, beliefs, and hopes on this subject are vast and complicated, yet they strangely seem to be addressed by this piece in less than 500 words.
Although crippled by disease, I'm fully alive in love. I write about the terrible beauty and sacred wonder of life, while living with physical disability and severe dependency. A revert to the Catholic faith through atheism, I'm not afraid to ask life's big questions. I explore what it means to be fully human through my weekly blog and have written a book: It's Good to Be Here, published by Sophia Institute Press.