SMA Pride Month: Biggest Lessons Learned

August is SMA Pride / Awareness Month. Each week, I’m sharing a post about what my life with SMA is like.

A lot of times, my life with SMA feels pretty normal to me – I’ve got my routine down, and I don’t feel like I’m living all that differently than everyone else. But there have been times, over the years, where I’ve tried a little hard to pretend to be normal… and regretted it afterwards. Times when I didn’t really fully embrace and accept the impact SMA has on me. So I thought I’d explain a little bit about those times today.

Not Recognizing My Limits

This has happened more than once, which isn’t a huge shock, but the one that sticks out the most is way back in high school. I was sick with what I thought was a cold, and knew I should probably stay home from school and rest… but had a test that I didn’t want to have to make up. I don’t remember how I did on the test, or what class it was in, but I do remember the week-long hospital stay after my body went into shock from the flu I had. And I do remember missing the 9th grade formal I had been so excited for, because I was in the ICU instead. So rather than missing one day and having to make up a test, I ended up missing many, many more.

So this was a hard lesson to learn, but an important one – that pushing myself past my limits will almost always end up being something I regret later. Learning to recognize my body’s limits, and accepting that they might be different than those of my friends and classmates, has been key. I won’t say that I never pushed my limits again, but I was at least better about knowing what could happen if I really did push myself too far.

Waiting Until College For PCAs

I’ve mentioned before that I lived on campus at college – my move in day was the first time I had ever spent more than a night away from my house without my parents. And because of a long and drawn out appeal process with my insurance, and because I just didn’t know any better, I didn’t meet my personal care attendants (PCAs) until the day I moved into my dorm and they were meant to start helping me with everything.

I quickly realized I had NO idea what I was doing. I had never had anyone but my parents do any of my care – I didn’t know how to explain to someone how to do all the things that my parents had just been doing. Luckily for me (after many, many tears) we worked out a way for my mom to come to campus any time a new PCA would be working to do a mini training, until I felt comfortable. But whenever I talk to anyone in high school who will need PCAs, I tell them to learn from my mistakes and start working with them at least the summer before, if not earlier.

Not Finding a Disabled Community

For so many years, I didn’t have any other friends with disabilities. My sister also has SMA, so I wasn’t totally isolated, but I didn’t go out of my way to meet other disabled people, or other people with SMA. In fact, I did the opposite – I tried my hardest to seem “normal,” to not bring any extra attention to my disability.

But it’s one of my biggest regrets. Making friends with other disabled people has helped me to be so much more confident in and accepting of my own disability! And honestly, people who have gone through the same things you have are a valuable resource – both emotionally, so you have someone to talk to, and logistically, so they can offer tips about things that have or haven’t worked for them. It’s so helpful in so many ways, and I wish I had found a community sooner.

Not Speaking Up For My Needs

This one goes along with the point about finding my community – sometimes I tried so hard to fit in that I actually made things harder on myself. I didn’t want to point out my needs, because they were different from everyone else’s, and that would remind people of the other ways that I was different, too. But it only made my life more difficult.

Before I started working from home, I’d stop by Starbucks every day. A new one opened on campus once, but it didn’t have one of those automatic door opener buttons, so I always had to ask someone to open the door for me so I could get in. Not a huge deal, but if it was cold or snowy, that extra minute or two mattered. But I never said anything, never reached out to anyone on campus about it.

Over a year later – maybe two years, honestly – I made an offhand remark about it at a community meeting I was at, where someone else from the university was also present. He took note, and within a month, the Starbucks had an automatic button installed – I could finally get my macchiatos independently. I know it sounds like a small thing, to be able to get into a coffee shop, but the lesson itself was huge – that speaking up for my needs can actually make a difference.

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