Living with Friedreich’s ataxia doesn’t mean I can’t have fun

A common question I ask people when trying to get to know them is, “What do you like to do for fun?” I consider this a safe, neutral question because people can define fun however they want.

Plus, there are varying degrees of fun. For instance, going to the movies is fun, but reading a book or sleeping in also can be a good time. I suppose fun for me requires a lot of consideration of the situation.

However, I’ve recognized some hypocrisy on my part regarding that question. While I’ve long considered it a safe question to ask others, I often dread being asked it. This is due to my Friedreich’s ataxia (FA) progression.

I don’t recall being bothered 16 years ago when I was asked what I enjoy doing. Today, I’d rather not be asked because of the lack of ability to do what I want. I want to play a few rounds of Capture the Flag on a paintball field, but running around on rough, unpredictable, and uneven terrain won’t provide the same level of fun today that it offered 16 years ago.

Also, I resent the idea of being an easy target.

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Getting creative

I can find fun in almost everything I do, but what was fun for me last week might be boring today. This is likely true for most people, not just those with a progressive condition.

Today after work, my co-workers and I had the opportunity to visit a local miniature golf course. I haven’t played mini golf in over a decade, but I have fond memories of it and have always had fun. I knew that playing mini golf would be a different experience than it was years ago. I now rely on a walker to keep me upright and moving along a set path. Not to mention, aside from the dreaded nine-hole peg test, which measures arm and hand dexterity at the clinic, it has been a long time since I have tried to hit a target on purpose.

Nonetheless, I was eager to hit the course, knowing I’d spend an hour playing with people who make me laugh.

I staggered to my first putt and missed the ball in my first three swings. When I did make contact, it didn’t go anywhere I wanted it to go. As I moved along that first short area, I realized that following my ball in every direction I sent it and navigating the uneven terrain would quickly become a source of frustration.

Instead of chasing my ball at every hole, I played an unofficial, made-up game of “first swing only.” After my initial swing, I asked anyone in my group to finish the putting for me or pick up the ball so we could move to the next hole when everyone was ready.

After about 20 minutes of this routine and a dozen selfies and silly photos, one of my co-workers asked if I was having fun. Although my time on that mini golf course was much different than before (I eventually spent it just watching everyone else), I was able to respond with an emphatic “absolutely.”

In this case, the somewhat random and rare activity was a blast because of the people I shared the experience with. I’m confident that my putts are worse than a distracted 6-year-old with a full bladder, and I don’t possess golf skills for anyone to envy.

However, fun is dictated more by my mindset and the environment I choose to be in rather than my circumstances or physical abilities. Anything can be fun with the right people.

I’m sure I’d even have fun on a paintball course today. I’ll take the post near the flag and protect it as best I can without needing to be on my feet.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.