August is SMA Pride / Awareness Month. Each week, I’m sharing a post about what my life with SMA is like.
I thought that for my first SMA Pride Month for the year, I’d start out general, with some assorted basics about SMA and what it means for me and my life.
What is SMA?
SMA stands for Spinal Muscular Atrophy, and it’s a genetic, progressive neuromuscular disease. If you want a medical definition, you can look here, but I like to explain it by saying that the messages can’t travel properly from my brain to my muscles. My muscles are all weak, and because SMA is progressive, the weakness gets worse over time. There are treatments now that can stop or slow progression, though, and they’re especially hopeful for younger kids – the earlier you start taking them, the more strength/ability you’re likely to keep. There are also different “types” of SMA, which really just relates to severity. People who have more severe types may not have ever walked and may be on a ventilator during the day, and people with less severe types may still be able to walk. It’s a wide spectrum!
What does SMA mean for me?
I have Type II – I was diagnosed around a year old. I never walked, and got my first power wheelchair when I was two or three years old (it was an official, Mattel-branded Barbie wheelchair). For as long as I can remember, I’ve needed help with a lot of the basics of daily life – getting in and out of bed, getting in and out of my wheelchair, getting showered, using the bathroom, brushing my hair and my teeth! It sounds like a lot, and sometimes it feels like a lot, but mostly… it’s the only life I’ve ever known, so it feels pretty normal to me.
Because SMA is progressive, the impact SMA has had on my life has changed over the years. When I was younger, there were a lot more things I could do independently! But as I got older, and got weaker, I had to start rationing my energy a bit more, and being a little more careful about my health and my limitations. But again – I’ve found that I adapt pretty quickly!
What are some things I have to do differently?
When I’m giving talks about disability or SMA, I talk a lot about how so much of my day is planning and logistics. Something as simple as using the bathroom becomes a whole ordeal. It’s really hard for me to use the bathroom out in public – a regular toilet just doesn’t have the support I need – so when I’m out, I need to carefully monitor how much I’m drinking, to make sure I won’t have to pee again until I get home. It means I have to really carefully plan how long I’ll be out, and I don’t get to be spontaneous very often.
Beyond just the bathroom, though, I have to plan out so many other little things. If I want to go somewhere, I need to make sure someone can drive me. I need to plan my wake up time during the week based on when my PCA’s hours – right now, my parents are available as backup caregivers too, but they also work and have meetings! So I can’t decide to sleep in an extra 30 minutes in the morning, because it means I won’t get everything done before my PCA leaves for the day, and there’s no guarantee my parents are available to help me shower 30 minutes later than normal, for example! My parents are flexible with their scheduling, but there’s still only so much you can do.
There’s just so much planning that goes into every little part of my day – basically, I have to do almost everything a little differently. But I am excellent at adapting.
