What Does Independence Look Like?

My friends Sawsan and James were in the Easterseals Disability Film Challenge. The film is called Out of Reach. In it, James talks about independence, “I thought I would be more independent by now.”

I can relate, and it led me to think, what is independence? It can be different for everyone, but for me, independence is small things, and with spinal muscular atrophy (SMA), it can be super tough.

Did I expect to become independent?

When James mentioned this, it made me question independence in general, but I wondered, "Did I have any expectations towards independence?"

The surprising answer is yes. For example, before I got my Evrysdi, I felt my SMA weaken. I didn't realize that I forgot that this was a thing that happened and that my SMA was getting worse.

I didn't realize I had an idea of my life and what I hoped it would be. What I expected for my life was well, sad to say, but I thought SMA would always be an uphill battle. I never realized that life doesn't have to be hard. I was so used to surviving.

Progression quickly weakened my body

As my SMA worsened, so did my independence. I think the expectation for my life was that my body wouldn't change and my muscles wouldn't weaken. I felt so free physically in my teen years, but my mental health was in a decline. When reality hit in my 20’s, it was so scary. I've never felt my body feel that weak before.

Making the most of my life

For me now, independence looks like living life my way.

So, what does that look like? Honestly, I don't let my SMA define me. Yes, it’s who I am, but I do SMA my way! I spent forever feeling tied to a hospital bed, and now that I, thankfully, only have a few things equipment-wise, I make sure that I fit my lifestyle, which ultimately is the most important!

I don't know why but I pretended my SMA wasn't a thing for a long time. Then when it got worse, I re-evaluated everything and decided that I'm going to do SMA my way, that's how I thrive. Meaning I have things set up for when I go out like having utensils or a metal/long straw. (Definitely check out Etsy, or Walmart!) Even having a cute feeding bag for my feeding machine.

At home it's pretty similar. Plastic silverware, a long straw (my favorite is Pioneer Woman from Walmart) and Starbucks cups because they're lightweight! It took a while to get my setup and I'm thankful I got it!

Having a disability day

But I will be honest, sometimes SMA really sucks, and it's tough. You can do everything right and SMA laughs in your face and says, “Nice try.” Like when my hips need to be just so, I'm like, "Really body? Gimme a break!!!" Sometimes you gotta cry it out. Be a human. That's why I started to write. All my friends online never told me the truth of the beast of SMA.

I appreciate all that it’s given me, but someday I just have to say SMA, you're being quite childish and honestly have a disabilty day, give in to what I need the most. I guess that's what you would call having a flare up?

To end, independence is different for everyone, and I think it's important to always have a conversation, an honest one about what helps us and also have a proper cry sometimes.