Physical disabilities can hinder a person in a wide range of ways, including patients with Friedreich ataxia (FA). I think most people lump people with physical disabilities together and assume anyone affected goes through the same things in life. As a disabled individual myself, I can assure you that’s just not true.
It’s important to remember that having a physical disability isn’t the end of being happy. We are conditioned from the moment we toddle around that using our legs and arms is the answer to everything. If we played a sport, we would be popular. If we could draw, we could be successful. If our body was thin, tall, and flawless, we could be a model on runways or in magazines. No one told kids with disabilities that we could choose anything else to be passionate about.
My first job after college was working as an after-school teacher, where I met a bunch of different kids. None of them had a physical disability, so it wasn’t a common topic for the other teachers. I was the only person in the program who used an assistance device for an obvious impairment. Even though I was a good 12 years younger than the youngest teacher, I think I probably had the most perspective on the physical disability topic.
Read more about experimental therapies for FA
The teacher, who is over 10 years my senior, had recently had her first baby. While waiting for school to dismiss one day, she recounted an interaction with her husband (also his first baby). They were discussing their newborn’s future, as new parents do: all the hopes and dreams for that little boy who, at that point, couldn’t even hold his own head up yet. Her husband said, “What if he can’t play sports or run around? What are we going to do?”
Let me tell you; I rolled my eyes so hard that I think the kids in the classroom down the hall heard it. It’s perfectly normal for parents to worry about their children. I get that! But here’s a secret: running up and down a field for fun doesn’t equal happiness. Hitting a ball into the outfield won’t help you sleep at night. Sports are fun, and they’re a great way to stay active. However, they don’t mean everything. While the other teachers sympathized with her and agreed how hard it would be, I thought: He’ll be fine. However, I didn’t say that—she was my boss, after all.
FA isn’t a walk in the park (literally or metaphorically). After 15 years of living with it, I’ve learned some things about coping skills. Sometimes those coping skills go hand-in-hand with hobbies. Everyone has at least 1 hobby or activity that they love. I have a few that I enjoy to help me forget about FA for a little while.
I’m a big bookworm. I love reading books and collecting them, too. Fiction books are what I reach for at the library or in the bookstore. To me, a fictional story is a way to immerse myself in a completely different world where I don’t have to bring a wheelchair or scooter. I can get lost in a place with no nosy people starting sentences with “It’s none of my business, but . . . ” and I can let my guard down for hours if I want. Maybe I’ll write a mystery, one day, about an FA diagnosis, but for now, I’m happy to settle for a murder mystery with no trace of a rare disease.
I have other simple hobbies, such as doing word searches, hanging out with my dogs, and shopping. I recently got into word searches; I try to complete at least 2 every day from the book I picked up at the dollar store. Not only are they good for improving memory and problem-solving skills, but word searches also help me practice my fine motor skills. FA inhibits the muscles in the hands and wrists as well, so it’s important to keep them moving as much as I can.
Hanging out with my dogs, Archie and Ace, is a hobby, too. Hobbies are great for mental health because they provide different opportunities for mindfulness and calmness. Being present with my dogs instantly boosts my serotonin levels. They love me unconditionally. It doesn’t matter to them that I have FA.
My neurologist asks me every year what I like to do to keep busy. My answer doesn’t change much. Just because I can’t play sports anymore doesn’t mean my life is boring; I just find joy in other things. FA is hard to wrap your head around. Even though I’m usually mentally in a great place at this stage of my FA journey, I still have my bad days. It helps me to remember that all I need are the little things, like a big kiss from my dog or the online order I just placed for new clothes. Hobbies are necessary when you deal with a rare disorder like FA. Over time, I learned what worked for me.