August is Spinal Muscular Atrophy (SMA) Awareness Month, and every year I like to do at least one post to celebrate the occasion. This year, the month has kind of gotten away from me, but I didn’t want to let it go unacknowledged. I always struggle when trying to figure out what to write for posts like these, because SMA is my whole life! It’s hard to distill my experience into one (or even a few) posts on my blog. But then I realized… maybe that’s exactly what I should write about – how broad the SMA experience is.
I wrote a recent Substack post about the more medical side of SMA, so if you’re interested in that, you can read it here. But today I want to share more about what SMA means for me, personally. I’ve never know a life without SMA, which means it’s inextricably linked to each and every single experience I’ve gone through. Some better than others, but all have added up to make me who I am today.
When I was young, SMA is spending my birthday in the hospital with pneumonia… and then being sad I was being discharged before I could watch the Disney special that night, because we didn’t have cable at home. SMA is going on not one, but TWO (because of my sister) Make-a-Wish trips to Disney World, and feeling like the most magical princess in the world when we got taken back for special meet-and-greets with each and every single character. SMA is having to miss school for doctor’s appointments, and arguing with my parents about doing stretches that I didn’t want to do. SMA is getting to pick a friend or two to be in classes with me (all the way through high school!) so there would always be someone nearby if I needed help. SMA is letting my friends test drive my wheelchair…. and SMA is hoping my parents aren’t looking out the window when one of my friends almost drove it off of our backyard playset.
As I got older, SMA changed for me. In college, SMA is moving into my dorm room, and spending the first 12 hours absolutely sobbing because I realized I had no idea how to have someone other than my parents help me with my needs. SMA is having to miss the last few weeks of my freshman year with bronchitis, because lack of sleep hurts your immune system and I was still adjusting to the new academic load. SMA is realizing that most house parties in a city of hills are not going to be accessible for a wheelchair. But SMA is also finding friends who are willing to find other ways to hang out and spend time together, and SMA is joining the newspaper staff and rushing a sorority.
After college, SMA is figuring out how to have a full-time job that works for me and my accessibility needs. SMA is finding all the best accessible bathrooms in Oakland to use when I meet my mom at lunchtime. SMA is waking up way too early to go to work, because getting ready takes me longer than the normal person. SMA is acknowledging my body’s limits, and realizing I can’t have plans on both Friday and Saturday. SMA is navigating changing needs and health issues while employed, and having to be brave and talk to my bosses about it. SMA is having an incredible year competing in – and winning! – Ms. Wheelchair USA in 2018.
SMA is having a supportive family, who makes sure I’m happy and healthy every day. SMA is having the most incredible group of friends who understand my needs and meet me where I’m at. SMA is being part of a powerful, determined community of people who share my disease. SMA is me.
