Too Late for Me
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.
Feature Photo by Raghavendra V. Konkathi on Unsplash
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Christina Chase View All
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.
Christina Chase 
I can sympathize with your view of the loss of something very special, when a “cure” like Zolgensma is discovered, especially for those who were gifted with superb brain matter in spite of the terrible physical demise and for whom this cure came too late. Our human body, mind and soul are very complexly intertwined and only God can unscramble the mystery and riddle of our individual existence. However those afflicted with mental disease or illness that destroys any semblance of normal thinking or acting or being themselves might react differently to a “miracle” drug that restores their sanity. God has His reasons for everything. I just loved and admired your deeply felt and skillfully written “Too Late For Me”! What wisdom and truth entered my heart and soul!
Thank You, so much,
Martha
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Thank YOU so much, Martha! I felt rather exposed sharing this piece. Thank you for meeting me with kindness and understanding! I really would like to have been cured, and am perhaps jealous. (Some times more than others.) Which is why I appreciate and shall think on this part that you wrote: “Our human body, mind and soul are very complexly intertwined and only God can unscramble the mystery and riddle of our individual existence.” Beautiful and true!
Pax Christi
Christina
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I hope to write more here in response about this question you have raised, but just now I saw a quote that reminded me of my desire to think along with you:
“Do not admire every form of health, and do not condemn every form of illness.” -St. Gregory of Nazianzus
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Have you read The Problem of Pain by C.S. Lewis? I have never completed it, but I think that some of the philosophical issues he raises apply to your questions. The reality is, we all will suffer in some way, in our bodies, the destructive consequences of sin. We are called to thank God for even our sickness, for everything, as an opportunity to grow in faith and to know Him Who is our true joy.
But the modern “project” is to change the world for the better, which of course starts from the position of declaring this and that not to our liking, and makes us focus on all the things we think should be different. We don’t like the way the world is. You have demonstrated a growing knowledge of the joy of Christ that transcends and transforms suffering, and your effort to “show forth the strength of something greater” in your body and soul than what is visible to an outsider.
I have been reading a lot lately about this “technological mindset” that we have, just by being born in this era. People who are young and healthy and/or don’t know their Creator are usually well intentioned in their desire to do good and fix the world, but their concept of what is good is very small, if they don’t know that God is goodness itself, and He fills all things.
I know I’m rambling here, my thoughts aren’t very well formed, and it may be that I have gone off on a tangent far from your main concerns — please forgive me if I missed the point altogether! — but I wanted you to know that I appreciate so much what you have written, and your honest willingness even to raise questions that few people will understand. In any case, your thankful heart is an example to all.
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Thank you for reflecting with me — and I apologize for my late response! Everything that you wrote here in your comment is well worth digging into more deeply. Perhaps a future post? Yes, what is “good,” what is “healthy?” What needs to be fixed and what doesn’t really need to be fixed?
That quote from St. Gregory of Nazianzus is profoundly wise! I need to write it out again here, because I like it so much: “Do not admire every form of health, and do not condemn every form of illness.” Much to learn from that. Thank you for sharing!
Blessings to you,
Pax Christi
Christina
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