My SMA Saga

Navigating the Early Years

I didn’t get a wheelchair until I moved to the states and a power wheelchair when I was ten. The level of frustration before the wheelchair was probably at its highest. For any D&D friends, my strenght was set to 1 and my movement was also 1! I had to get from one place to another with my own strenght or help from others. If I landed a critical roll I was able to cross a street or go up stairs. Outside of that I need help with a lot! My range was how far I could go by crawling.

For my first nine years of life I was okay with that. I’m grateful for my ability to adapt quickly. Once I got my wheelchair it opened up my range by a lot! Back to D&D terms my movement changed from 1 to 300! My limits had changed in a big way. Instead of my natural straight limiting my distance, it was now my battery life and the terrain. My curios nature pushed me to find my new limits. This will be it’s own post. The many lessons and experiences from the wheelchair get’s it’s own post.

Constant Friends: Frustration & Gravity

Before and after the wheelchair there was always something frustrating. Either with my body or something I was using to compensate for some inability of mine. Looking back I’m starting to see why dealing with frustration and struggling with simple things it forced me to think creatively and really changed how I viewed the world.

As I got older and grew, I started noticing the hold gravity had on me. I barely noticed the change. There were a few times I was able to stan and walk for short distances. Eventually, I could only crawl, and then I lost that… More like traded it for the wheelchair. If I was not ready, gravity was ready to bring me down, and it got harder to fight it.

Just Keep Rolling

In my post we’ll look how I cope with my challenges. For the most part, I didn’t ducal to long on one frustrating thing or another. My brain was able to find other things to focus on. For every small victory I used that momentum to keep moving, and made sure I learned something I could use on my next challenge. Seeing frustrating moments as challenges also helped!

The ammount of detail will need to be spread through these pests, the ports will need to be short. My straight is not enough to write every thing in one day.


I found a way to take questions in an organized form. Using Google Forms I created a page where I embedded the form. This way I can keep comments private and each post clean. Feel free to ask me questions. I’ll do my best to answer them publicly or privately. Hope you have a great day.


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