A man in a wheelchair is surrounded by fireflies lighting up his face and the darkness around him

Stop Surviving and Start Living

Last updated: February 2022

Recently I just got over my second respiratory infection in two months. Thankfully I hadn’t been sick or needed an antibiotic in over two years. Every time I get sick now, it makes me more depressed than I ever felt as a child.

Reflecting back on how I used to feel

What I mean is that on the days I’m not feeling well or not comfortable in my wheelchair, I think a lot about how I used to feel when I was younger. And I realize even able-bodied people get sentimental about their health, but I’m sure most don’t get that feeling in their mid-twenties.

I’m not going to pretend I wasn’t sick as a child. For practically the first decade of my life, I spent every winter in the hospital with pneumonia.

But after I recovered, it seemed I would almost go back to how I felt before that illness. I had similar strength and energy and could still chew and eat efficiently. It was like I was out for a few months, but then I’d be back to being Chaz.

Now I feel like I can’t say that anymore. And the most frustrating part is that for a big chunk of my life, it appeared as I had plateaued. It felt like I had hit a certain amount of regression with SMA and I was at the weakest I’d be which really wasn’t terrible.

Between the ages of 10 and 21, I had no cases of pneumonia or hospitalizations and any sickness was just a minor respiratory infection that my parents and nurses could handle at home. I didn’t have a g-tube at that time and had the ability to eat by mouth to maintain my weight.

Worsening progression of SMA

But then something happened in my early twenties where that just all went to shit, and the hardest part is there’s really not one event I can pinpoint to say that pushed my disability over the edge. I wish I could point my finger at something because maybe it would be easier to accept how I feel now. I could look at that one event and make sure it never happens again and move past it.

At the age of 25, every time I get sick, I don’t bounce back as fast. But it’s not just that. There I things that I physically can’t do anymore that were so easy for me only a couple of years ago.

Like, I can’t play video games because I don’t have the ability to hold the controller anymore. Some days it’s hard for me to drive my wheelchair or use the computer mouse.

The most difficult to admit is that I don’t enjoy eating by mouth anymore even though I am allowed to. And, I mean, I love food. When I was younger, I wanted to be a food critic.

Why am I allowing my disability to control me?

I’m not saying this for sympathy or to make any younger people with SMA afraid. Honestly, I hate that I’m writing this article because it’s just a venting session with no positive information for anyone to take away. I always try to make sure my posts have advice.

But I am writing this because I want to tell myself that the things happening to me are real, and unfortunately not going away. Yes, at a time in my life I felt stronger and healthier.

I still had a disability but I didn’t let it control me. Why am I allowing it to control me now?

Maybe it won’t happen when I finish writing this and it probably won’t happen tomorrow. But I want to work toward the mentality I used to have or else I’m letting my younger self down.

It’s time to stop surviving and start living.

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