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What is your earliest memory of knowing you had SMA?
My parents and I are in the midst of a deep basement cleaning, which has also turned into a trip down memory lane. I think most basements are treasure troves for that sort of stuff.
Anyway, I found an old stuffed animal I got at the hospital gift shop when I was 7 or 8 years old. It had been a difficult day of appointments, and my parents wanted to cheer me up. That day is one of my earliest memories of realizing something was different about me. I didn’t fully comprehend SMA, but for the first time, it clicked that most kids my age didn’t have to go through these sorts of things.
I remember feeling so sad that day, and when I found the stuffed animal recently, those feelings resurfaced. Fortunately, it was only for a moment.
Do you remember the first time you realized life was different for you?
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1 Reply
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At a young age, I realized that I was different from my sisters and peers. They didn’t have to use the banister to pull themselves up the stairs, they could walk faster and further than me without tiring or falling. I often asked why but my parents and doctors didn’t have answers. I was called lazy and eventually was accused of making up my symptoms for attention. I went diagnosed for 20 years until my grandmother intervened and brought me to a hospital to get diagnosed. It was bitter sweet. I was happy to prove that I wasn’t a liar but devastated to learn that there was no treatment or cure at the time. That was 42 years ago. I have written about my journey in my memoir, Falling. It should be available in a few months. Despite the name, it is about rising.
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