SMA Pride Month: My Life with SMA

July and Disability Pride Month might be over, but the disability-related content isn’t over! August is SMA Pride Month (or SMA Awareness Month – you may see it both ways). Just like I did for Disability Pride Month, I’m going to write one post per week about something related to SMA. For this first week, I thought I’d start at the beginning, and share a little bit about what my own life with SMA has looked like over the years.

Being Diagnosed with SMA

SMA is genetic – both of my parents were (unknowingly) carriers, and when that happens, there’s a 25% chance of any kids having SMA. But they didn’t know their carrier status when my sister and I were born, so when I wasn’t hitting the normal developmental milestones around a year old – I wasn’t really crawling – they started asking my pediatrician. They actually had to be a little bit pushy and get another opinion, because the pediatrician originally thought I was just slow to hit the milestones. There was no genetic testing that was routinely done for SMA back then, so I had a small piece of my thigh muscle biopsied (I don’t remember the surgery, obviously, but I do still have the scar). Now, in many states, SMA is included on the newborn screening panel, which means that newborns are automatically screened for SMA (among other conditions) at birth, which makes diagnosing SMA much easier.

Growing Up with SMA

Since I never crawled, I also never walked. I got my first power wheelchair – a pink-and-purple, officially Mattel-branded Barbie wheelchair – when I was around 2 years old. I went to the hospital for pneumonia a few times as a kid, because my lungs were weak and colds would settle in my lungs easily. Because SMA makes all of your muscles weak, including the ones that support your spine, I had scoliosis and has spinal fusion surgery in middle school so that my curve didn’t get any worse. I also had occupational and physical therapy throughout my time in elementary school (which I hated being pulled out of class for and stopped as soon as I could).

Despite all this, though, since having SMA was the only life I’ve known, my time growing up felt pretty normal. I rode the bus to school, I was in regular classes, I had an amazing group of friends… I went to sleepovers and middle school dances and high school football games just like anyone else did. I was honestly very lucky in many ways – I wasn’t bullied (or at least – not in any way that I was aware of!), and I really did feel included. I am sure that having a great group of friends helped with this, but I think my school did a good job, too.

Going to College with SMA

This was probably the biggest adjustment for me, in terms of figuring out how to live with my SMA. I never questioned that I’d go to college, and I really really wanted to live on-campus… but truthfully, I had no idea HOW. I did a tour over the summer before I started and met with the disability services office, which helped figure out the basics. Living away from home meant that I’d have people who weren’t my parents being my caregivers for the first time in my life, and I wouldn’t recommend the way that I ended up doing it, which was meeting my new PCAs on the same day that I moved into my dorm! I did eventually settle into a routine with them, but it required my mom to make a few trips to campus to help me train them.

I’m SO glad that I lived on campus – I truly can’t imagine what my life would have been like if I commuted. I was in a sorority and co-ed service fraternity, was an editor of the student newspaper, and was frequently in the library until 1 or 2 AM doing homework with other people in my class. I don’t know how I would have been able to do any of this if I was still living at home. But that didn’t mean it was always easy. I did go through an agency who hired and scheduled my PCAs… at least in theory. But often, it felt like it was actually my own job to make sure all of the shifts were filled, or to make sure they were calling all potential replacements when there was an unexpected call-off. And sometimes they couldn’t find anyone, so I had to call my mom, who would have to stop what she was doing to come help me (or even sometimes spend the night in my dorm!). And because colds can turn serious quickly for me, I also had to e-mail my professors about missing class, and arrange the logistics of making up missed classes, papers, and exams. Plus I had to make sure my class and extracurricular scheduled worked around the schedule of my PCAs, so that I was still able to, you know, use the bathroom when I needed to. It was a lot of moving pieces to keep control of at all times!

I’m really glad I did it; it was totally worth it – but it was definitely a challenge.

My Post-College Life with SMA

Obviously, I can’t fully sum up the last 12 years of my life in just a few paragraphs. But since college, I got a full-time job and worked consistently since, starting blogging, got my Masters of Public Health, competed in and won the Ms. Wheelchair USA pageant, and got involved in the community, too. It’s a very full life… sometimes, too full, but that’s a whole other post for another time.

But again – none of this is quite as easy as it seems. During that time I also dealt with severe weight loss that eventually led to me getting a feeding tube, I was in a pretty bad accident as a pedestrian where I broke many, many bones and had to recover from, and I continue to have to deal with the logistics of scheduling PCAs (and deal with the stress of the truly unprecedented lack of PCAs). When I was working in the office, I had to meet my mom every day at lunchtime so I could use the bathroom, and I had to very carefully plan out my liquid intake for the rest of the day so that I didn’t need to pee again until the work day was over. When I want to make plans with my friends, I need to make sure that either my friends or my parents are able to drive me in our accessible minivan – and of course need to make sure wherever I’m going is accessible. It is, once again, a lot to keep tabs on all at the same time.

All of this is just a very high level overview of what it’s like for me to live with SMA. I just want to help you understand that while I love my life, and while it’s a really full and fulfilling life, having SMA does have a really big impact on my life, in ways great and small.

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