I’ve dreamed of cures. Miracles that occur in the blink of an eye. One minute, I’m sitting in my wheelchair, and the next, I’m standing, walking, running. I’m wobbly on my feet, of course, and crying, because everything has changed, and I’m probably overwhelmed by the newness of it all — legs that work, a body that moves.
It’s a nice thought. But that’s all it is: a thought. A giddy, gauzy dream. As fun as it is, when I envision a world where I’m suddenly free of SMA, my practicality more or less takes over. The logician in me knows the odds, while the writer would much rather spend her precious brain power on something she might actually be able to publish someday.
Growing up with a progressive disease, you dream about cures. Miracles are always in the back of your mind. But treatments are another thing altogether. Treatments are real. Possible. But they’re also fraught with uncertainty, from side effects to insurance coverage to the politics of who gets them and when.
I’ve spent so much of my life waiting for an SMA treatment. Spinraza (nusinersen) was a disappointment — great for some, but inaccessible for others. Zolgensma (onasemnogene abeparvovec-xioi) has radically transformed the life expectancy of SMA patients, but only for children under the age of 2.
Evrysdi (risdiplam) changed everything. Suddenly, I was eligible. Suddenly, I was one of the privileged few — patients with rare diseases who, against all odds, garner enough attention from the people who decide which diseases are researched and which treatments are funded.
It didn’t feel real. It still doesn’t. I’m stuck in a state of disbelief — grateful, yes, but also shocked, and painfully aware of everything that has gone into the 6.6 milliliters of Evrysdi I take once per day.
Recently, I was talking with Sherry, my friend and fellow columnist, about all the generations that came before us. All the patients with SMA who lived and died in obscurity — undiagnosed or ostracized or abandoned in subpar medical facilities, at the mercy of caregivers who often meant them harm.
The lineage of disability is long and varied. There are scholars and historians and movements that encompass everything from race and ethnicity to gender, orientation, and class. God knows the internet has brought us together in ways that baby me would never have envisioned. I am in a community with so many wonderful, resilient, funky, ism-defying people, and I have never been so proud to identify as disabled.
But it’s easy to forget about the people who came before us. The people who prayed for healing, who lived in a society that was not developed enough to see their disease for what it was. The people in the liminal space between diagnosis and treatment — who knew that SMA was eating away at their bodies, but were helpless to stop it.
The people who knew that treatments were possible. The people who watched and waited and wasted away, who died a year — or month or week — too soon.
All in all, the administration of Evrysdi is mundane. My caregiver draws 6.6 milliliters into a special syringe, pushes it through my G-tube, and flushes the line. Unremarkable. Perfectly ordinary. But there’s a sacredness to it, a weight to the moment.
Every day after dinner, I take my disease-modifying, therapeutic medication. Every day after dinner, I think of all the SMA patients who lived and died in anticipation of the medication. They pinned their hopes and dreams on something as simple as a syringe. They lobbied and labored and languished, and it’s my responsibility — my duty — to honor their memories.
Every day after dinner, I witness something that was considered impossible for so very long. I think about my ancestors, bright and shining in the starry sky of disability history. I thank them for everything they’ve done, and I remind myself what I’m fighting for.
And then I live, because so many of my peers did not get to.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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