SMA Pride Month: What Having SMA Has Taught Me

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

Since this is my last post for SMA Pride Month, I wanted to end on a high note. I wrote a post last year about coming to the realization that I am defined by my disability, and how that’s okay. I wouldn’t be the person that I am today if I didn’t have SMA – it’s had an irrevocable impact on my life. So today, I thought I’d share what I learned from having SMA.

How to Advocate for Myself

I talked about this a little bit in last week’s post, but having SMA has taught me how important it is to advocate for myself and my needs, and how to do it well. It’s not just about advocating for myself in the hospital or in the medical system, either. It’s about the every day things – making sure events I’m going to are at locations that are accessible to me, making sure I can get a plus one to have someone who can help me, making sure my desk and office are set up in a way that works for me – the list is truly endless.

This is something that I had to work on and learn! When I was younger, I was much less comfortable doing this – I felt awkward being upfront about my needs. But I’ve gotten so much better at it. People don’t live my life – they don’t know what my needs are! They often actually appreciate it when I’m straightforward about what I need to be comfortable and successful. And of course, there are times when people are not so appreciative, but being a strong advocate is important then, too.

How to Prioritize

I have a limited amount of energy each day, and basic tasks of living like showering, using the bathroom, and getting dressed take me longer than they take someone without SMA. So out of sheer necessity, I have learned to be ruthless about prioritizing! I know that if I can’t get to everything on my to-do list (and really, who can), it’s most important to first do the things that absolutely must get done. The other things will still be there for you tomorrow.

And sometimes, prioritizing means choosing rest over checking items off your list! It can be hard in the moment, but I’ve learned time and time again that when I don’t prioritize rest, I end up way worse off in the long run. The most important things aren’t always the most fun choices in the moment, but they’re the ones that need to happen regardless.

How to be Resilient

There’s so much talk about resiliency these days, and while it’s not something that I ever purposefully cultivated, I do think that living with SMA has made me incredibly resilient. Living with a progressive genetic disease – and being disabled in an inaccessible world – means that there’s a certain level of stress I am just always used to living with. And living with that level of stress means acknowledging it but also knowing that your life will go on and that I need to figure out how to survive, and thrive, with that stress.

And to me, that’s what resiliency is. It’s about knowing that stress happens, but that you can get past it and be okay. It doesn’t mean that things never get to me in the moment – believe me, they do! – but it’s about not letting that moment become the whole narrative. In the immortal words of Boy Meets World, sometimes “Life sucks. Get a helmet.” Bad things will happen! But you’re stronger than those bad things.

How to be Persistent

This one follows along with how to advocate and how to be resilient. Sometimes, when I’m advocating for myself, I don’t get an immediate yes! While people are often happy to hear about my needs directly from me, sometimes they’re less than willing. So when that happens, my persistence and determination kick in.

Prioritization comes into play here, too – sometimes, if it’s not something that I care about enough, I’ll just let the issue drop. I still have limited time and resources! But if it is something that I care about, I won’t just let it drop. Maybe it’s a matter of re-phrasing, or maybe it’s an issue of timing – being persistent can take months! But I don’t give up after one “no.”

How to Adapt

SMA is a progressive disease. There are things that I could do in middle school, in high school, and even in college that I physically can’t do now. I didn’t lose my strength in big jumps; it was much more gradual, and often not something I didn’t even realize until months or years later. So I am constantly adapting. I’m constantly coming up with new ways to do things like my makeup and my hair, or new devices to try to help me out, or new ways of scheduling my day to make it easier on me.

And obviously, this has made me adaptable in other parts of my life too! While I am still an EXTREMELY Type A person, and like to be in control, I am used to living with change. I might get upset in the moment, but in the long term, it doesn’t phase me.

How to be Creative

Because I’ve been forced to adapt so many times, I’ve also become incredibly good at being creative. I am faced with inaccessibility all the time, and sometimes to get what I want or need, I have to come up with a creative solution. Whether it’s a logistical puzzle of balancing schedules to get everyone where they need to go, or a matter of making my dorm room as accessible for me as possible, it’s all about thinking outside the box when coming up with solutions.

I have used bungee cords to hold doors open, fiberglass sticks to reach elevator buttons… they’re not always the most elegant creative solutions, but they work! And it’s cliche, maybe, but I do think that this creativity has made me look at everything in my life in a slightly different way. I’m always looking for a way to make things work, even if it’s not the most obvious way. Constantly needing to come up with unique ways to do things keeps me on my toes and keeps things fun. My life is certainly never boring.

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