Matthew Soulsby

My Story
by Matthew Soulsby

Hello, my name is Matt, I’m 37 years old, disabled and I’m currently working on my bachelor’s degree in cybersecurity at University of Maine at Augusta. I have Friedreich Ataxia, which is a rare genetic disease that affects every muscle in your body including the ability to walk and my balance. I started having symptoms when I was 20, was diagnosed when I was 25 and had to retire from my forklift job (after a couple years) and go on social security. Because my disease is rare, it took doctors a couple of years to officially diagnose me. In between 20 and 25, I was in denial because I knew something was seriously wrong and I did my best to hide my balance issues. It became harder and harder to keep my balance under control and my mom eventually convinced me to go get checked out. Not long after my diagnosis I had to give up driving because it wasn’t safe, and people thought I was drunk all the time. My disease is progressive, meaning you lose abilities over time, and it is life shortening. I came to the realization that, you can either let it consume you or fight against it relentlessly; I have never been one to give up.

I’m not going to lie and say every day isn’t a struggle. Just to do the normal things like getting ready for the day (which I think most people take for granted) is difficult, but the struggle is what drives me. A line from one of my favorite poems by Dylan Thomas goes “do not go gentle into that good night.” I had to reinvent myself, despite my horrible disease. My body might be failing me, but my brain still works and that makes me luckier than some. That was definitely a turning point in my life, I didn’t really have a direction, but I never gave up and during those years I always had my nose in a book. I attribute my love for reading to keeping my brain focused on other things and keeping me mentally active. Reading opens your mind and helps you comprehend complex issues.

As for physical hardships that I had to overcome, I’ve learned how slow I am when it comes to writing note with pen and paper and not as slow when it comes to typing. One class was live on Zoom, and it was required to participate. My voice isn’t what it used to be; I can only imagine what everyone thought. By the end of the course, I was answering questions that nobody else could and ultimately I gained everyone’s respect, I think. Taking all of my classes online allows me to learn without the burden of traveling (it’s difficult when you don’t drive) and lets me set my own schedule. I have my wife Noelle and Paul Elisha to thank for helping me get started, I think sometimes people just need a step in the right direction.

Things are always tougher at the start, but when you get the hang of it, staying on top of your schoolwork becomes easier to maintain. Sometimes I like to think of a test or lab as a video game, where I can just have a little competition with myself. I find you learn more and it makes things fun. I’m not a brainiac, I’m not overly ambitious. If I can do it, anyone can. Put one foot in front of the other and build upon your successes. When I first started it was a little overwhelming, but now I have a 4.0 and no course seems to hard to take. Not to mention, there are so many people to help along the way, you don’t have to do it alone.

In the end, responsibility falls back on you to decide what you want out of life first, then you will find, as I did, that there is help along the way. One thing I did was to start small with one class a semester and add more each semester until you feel comfortable. This will prevent you from becoming burned out. People always say that it must take strength to keep going despite my medical problems, but I don’t think I have a choice in the matter. One of my favorite musicians, Tom Petty, said “you never slow down, you never grow old”. So, I’ll keep fighting Ataxia with all my being, stay focused on my academic journey and do what Dylan says by not going gentle into that good night.