I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Since the beginning of my journey with Friedreich’s ataxia (FA), worries about the future have plagued me. Would I have a future? What would it look like?
As I learned more about FA, one word stood out: progressive. Everything boiled down to progressing symptoms: My balance and coordination would progressively degenerate, my speech would become progressively slower and more slurred, my dexterity would progressively deteriorate, and my fatigue and scoliosis would progressively worsen. Basically, I would progressively become more disabled as time went on.
This was a horrifying reality to accept. I know the future is unknown for everyone, FA or not, but I now had all these new concerns. When would I need a walker? When would I become a full-time wheelchair user?
I desperately wanted a doctor to tell me when I would hit these dreadful milestones. I know that’s impossible, since disease progression with FA isn’t like clockwork, but I felt it was necessary to plan for my future.
The best the doctors could tell me was, “Your rate of disease progression will likely stay the same. If your symptoms are 10% worse in a year, they will likely be 10% worse the following year.”
It’s like the parable about the frog: If you place a frog in warm water and slowly, degree by degree, turn the heat up, they won’t notice until it’s boiling. I feel like I’m the frog and FA is the heat. I am progressively becoming more and more disabled, and eventually, I’ll be in a boiling pot, fully disabled.
But I can’t focus on the temperature of my FA waters. I can’t live in fear of reaching boiling, even on the days when the heat is noticeably increasing. All I can do is accept the current state of my progression and try to keep moving forward.
For my friends and family who see me regularly, my symptom progression is less noticeable. Just as kids don’t grow inches overnight and you don’t develop new wrinkles in a day, you don’t necessarily notice the changes that happen slowly, because the daily progression is often imperceptible. But we all know what’s coming.
My son, Brooks, 7, and my daughter, Collins, 5, have seen me go from walking independently to needing occasional help, then to using a walker full time. They have seen the heat slowly increase, but they don’t know why or what the endgame is.
The other day, Collins and I were chatting. She told me that one of her friends was having a new kitchen built in their house while they were still living in it. I explained that this was called a renovation and that we would do one someday.
She got excited and asked me to explain what we were going to do, so I told her that one day, my legs will get worse and I won’t be able to walk anymore, and when that happens, I’ll be in a wheelchair. At that time, we’ll have to renovate the bathroom and the kitchen to safely accommodate my needs.
This morning, Collins watched me bop around the house packing lunches and backpacks, making breakfast, and cleaning as I went. She suddenly came over to me, hugged my legs, and said, “I don’t want your legs to stop working and for you to need a wheelchair and a new bathroom.”
Even though all I wanted to do was cry and say, “Me, neither,” I had to help guide her into our unknown future. I gave her a huge bear hug and explained that it would be a while before that happened. And when it does, we’ll adapt, just like we did when I started using my walker.
While I know the basics of what FA has in store for me, my future is as unknown as anyone else’s. I plan on facing my disease progression with adaptability, grace, and patience while I trust in God, the one who holds my future.
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