Progression Looks Different for People with SMA

Progression is an odd thing.

I find it difficult to measure the progress I’ve made in life. People my age, people I went to school with, are getting married, having babies, and buying homes. But my progression has always looked different.

I’m progressing in my writing career, but even that is hard to see sometimes. I wrote a cover letter the other day and realized that for the first time in five years, I have done quite a bit with my career. I have several publications under my belt, as well as a self-published book, this column, and possibly two more publications planned for next year. 

I’m 22. I’ve accomplished a lot for my age. For me, progression looks like sitting in my living room on my laptop. Seventy percent of the time, I am in pajamas, talking into my computer, and doing research for the books I’m writing. It doesn’t look like I’m doing a lot, but I am. It just takes longer for it to look substantial and real. 

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When I published my book, I had to choose between producing print copies as well as e-books or just e-books. I chose print and e-books because I wanted something physical, something I could hold in my hands. E-books are cool. They’re just as real as a physical book. But when you make something, you want to be able to feel it. Ultimately, it didn’t cost me anything to produce physical copies, and I can tell from the sales that people appreciate them. (I wanted to keep e-books as an option because there are people who can’t read a physical book.)

I try to find progress in completed projects. Not published, necessarily, but finished on my end. In traditional publishing, you have control over your manuscript and the process of sending it to agents. That’s it.

My progress looks different. I’m not buying a house. I won’t be having kids, though children are an option for some people with SMA, and I’m not getting hitched — not anytime soon, anyway.

It doesn’t make me sad. It’s just odd to watch. I have other things to deal with, and different ways of interacting socially.

My life has looked different from the start, but I will never consider it less viable or less important than someone else’s. It’s just different.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.