‘I Ain’t There Yet, but I’m Healing’

Humans like to believe that progress is linear. We were in the Dark Ages, then we weren’t. We were largely illiterate, then we read so much we created demand for the printing press. We didn’t have smartphones and international access to each other via the internet, and now we do. Although progress develops more like a roller coaster with too many loops, instead of a steady, upward ride, we expect it to mirror our linear experience of time.

It is especially devastating, then, if you live with a degenerative disease like SMA. 

Maybe like me you get “lucky,” and your body has enough copies of the SMN2 gene to compensate for the defective SMN1 gene responsible for your plight. Maybe you get to experience relatively normal growth during childhood. You can’t walk, but your spine isn’t bent yet, and you can open physical books by yourself. Maybe you’re more than lucky, and you have the best care your family and healthcare system can provide. With physiotherapy and a wheelchair, you can maintain a level of independence similar to your peers. 

But eventually, you’ll reach a point where your SMN2 genes aren’t sufficient. If like me, you’re too weak for corrective surgery, you’ll watch your spine bend and twist into the shape of an italicized question mark. You won’t be able to hold physical books anymore, and you’ll miss their inimitably comforting smell. You may be aware of treatments that could stem your body’s decline. But if they aren’t approved in your country, you’ll watch your independence weaken with your body as your body starts to hurt itself. 

You’ll think, “Oh god, is this it? Is this where I plateau and lose myself entirely?”

Recommended Reading

May 24, 2021 News by Marta Figueiredo, PhD

SMN2 Copy Number and Rare Variant Influence SMA Severity

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As I’m writing this column, I have a tab open to The Open University’s website. This time last year, I was daydreaming about settling into their English literature courses this month. “Within three to four years, I’ll have a bachelor’s degree,” I excitedly told myself.

Life and SMA had different plans for me. As is customary for January, the beginning of the year looked bright and promising. But then February and March rolled around, and their calls to reality were as loud and frightening as thunder before a storm. My parents had decided to move into a bigger yet inaccessible place at the same time our finances were thrown into disarray. The neuropathy caused by my kyphoscoliosis spread throughout my body. Just like that, my dreams of becoming an English lit major were put on hold indefinitely.

I haven’t written in depth about how hard this year has been for me. There have been glimpses in past columns, but I haven’t talked about how angry and distressed I truly was. Instead of telling readers I slept throughout the day to avoid the pain in my body, and that I couldn’t stop crying and begging for death, I wrote about my medical experiences, a show about mermaids, and Taylor Swift. I didn’t tell you I stopped my volunteer work. I didn’t tell you I stopped reading and writing every day. I didn’t tell you I almost quit my job as a columnist.

But it was hard. It still is. Even now, I’m taking deep breaths to halt my tears. Because the raw and ugly truth about living with a degenerative disease is this: The decline of my body’s capabilities disrupts my life and sends me to dark places. 

I’d forgotten, though, how complicated progress actually is. The Dark Ages weren’t as dark as commonly believed — they even had their own equivalent of a smartphone! — and they still led us to today and all the progress that today entails. 

It’s hard, but I’m choosing to view my life through a similar lens. This isn’t it for me. This isn’t where I plateau, contrary to what my inner cynic says. My life has progressed throughout the year, both despite and because of my body’s decline and chronic neuropathy. 

I’ve learned that I can adapt to new situations, and will continue to do so. I may not have the mental energy for long-term volunteer work currently, but there are always opportunities to help with small events, like the Unofficial Dragon Age Day fundraiser, whose proceeds this year will go to AbleGamers. I’m writing on my iPhone and beginning to read multiple books a month again. And though I’m still disappointed that I won’t be an English lit student this year, I’m taking free courses on Coursera to build up my mental stamina, should I be able to study for my degree one day.

I may be grappling with my mental and physical health, and it may not look like it, but I am making progress.

“I ain’t there yet, but I’m healing.” — Fletcher

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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.