They couldn’t understand why I wouldn’t try, and my absolute refusal surprised me, too. Downtown Los Angeles in 2005 was unfamiliar to me, in a good way. It was a combination of sunshine and sea breeze, and the heat was crisp and enjoyable, unlike the sweaty humidity of Louisiana.
My summer vacation felt like a new adventure. I was exploring a new city with unfamiliar sights, sounds, and smells. Knowing that every turn brought us something new and unexpected exhilarated me. I felt unstoppable.
Then I saw the building we were headed to. I was suddenly adamant, refusing to go forward. “Nope,” I said. “I’m not doing that.”
We stopped before a modern, yellow building with a bright-blue roof and trim. The sign out front read, “Segway City Tours.”
My friends were surprised at my staunch denial to even try. They shrugged and moved on. I soon forgot about that snag, and the rest of the day in LA was incredible.
It wasn’t until much later that I was able to reflect and process it: I liked to think of myself as an adventurous person who’s up for anything, so why did I suddenly and strongly refuse to try something new (namely a Segway)?
At 19 years old, I was slowly conforming to the idea of relying on a wheelchair for ease. It was over a year ago when I finally acknowledged my need for a walking aid, in my case, a wheelchair for traversing the college campus, but one I refused to use any other time. When I returned from class to my apartment, I left the wheelchair and got around by relying on walls, friends, or any other supports I could find.
I couldn’t ignore the symptoms of Friedreich’s ataxia by this time.
Planning for the aforementioned summer vacation of 2005, I strongly considered not bringing my wheelchair. I changed my mind at the last minute and packed it in the truck for our long road trip. I’d like to say I did so out of self-awareness and acknowledging how difficult it would be on my friends if I depended solely on them as my walking aids, but that wouldn’t be honest. I almost refused to bring a wheelchair only because I am “Headstrong.”
I am slowly realizing that when I adamantly refuse an activity, whether bringing a wheelchair on a road trip or trying to maneuver a Segway, it’s based on … fear. The progression of FA makes two lists in my head: things I can do versus things I cannot. It scares me that the first list keeps getting shorter and the second list keeps growing. The reason I didn’t want a wheelchair and didn’t want to try a Segway was that I didn’t want to add to the list of things I cannot do — going on a vacation without a walking aid or being able to ride a Segway.
As I get older, in a way I hope I am reestablishing my adventurous spirit. Fear is not a valid excuse for me. And not for you either, reader.
I will never know if I am or would’ve been able to ride a Segway. And that is a missed opportunity that I regret.
I see a lot of my friends with FA posting pictures, videos, and stories on social media of them doing indoor rock climbing.
Doing this is going to be incredibly difficult for me. I cannot depend on the use of my legs, except to maybe hold a position as my arms do the climbing. There is a very real chance that in my progressed state, I will leave the wall, frustrated, and unable to climb.
And there will be one more thing to add to my list of things I cannot do.
I’m not afraid of that, though.
I have no established plan to go indoor rock climbing, but I promise to you, reader, I will go this year. It will be nerve-wracking. I will make a follow-up post, outlining my success or my failure. And in either outcome, I will be OK and look forward to the next challenge.
Bring it on.
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.