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.
I’ve said it before and I’ll say it again: Life with the progressively degenerative disease, Friederich’s ataxia (FA), is hard. Having FA means adapting to relentless disease progression that sneaks into all the parts of my life — physical, mental, and emotional — and complicates them.
It’s a difficult way to journey through life, but I’m oddly used to it. Adjusting has become routine.
That’s not to say that my soul is not weary from the constant strain of having to quickly adjust and move on to get through my daily routines, but I have adapted to FA’s demands on my body.
Winter is a tricky time for me. The cold temperature affects my neuropathy, and that exacerbates my lack of sensation. It’s usually only my feet and fingertips that suffer numbness, but when the weather turns cold, it extends to my lower legs and hands, leaving my extremities dangerously in the dark about where they are in space. That numbness, coupled with rigid muscles tense from the cold, is a recipe for frequent falls. I’m thankful for long sleeves and pants that cover all of the painful bruises these falls inflict on my battered body.
Falling has forced me to come to terms with the upsetting fact that I’m getting closer to being completely dependent on a wheelchair. The days of being able to walk independently are in the distant past, and I fear that I’ll soon need more than a walker to help me get around.
I have high hopes for my balance-assisting mobility service dog, Hank, but he is about eight months away from being ready, so I need to be realistic about my abilities in the interim. I am likely approaching the stage of my disease progression where I will need either a wheelchair or a scooter to reserve what little physical strength and energy I have.
My good friend and physical therapist had the best response when I told her I wasn’t ready to give up my mobility, even though it felt like my body was begging me to do so.
“It’s not giving up!” she said. “Just like the walker wasn’t giving up. It’s just a step you will take to keep you doing everything you love while staying safe and less fatigued.”
She’s right. It’s not giving up. It’s adapting. My disease progression requires me to adapt all day, every day. And although this step seems huge, heartbreaking, and final, it is a step I must take to keep moving safely forward in the life that I love.
When will it happen, and how will it look? I’m not yet sure. My physical therapist and I are working on a plan. How will I handle the change when it comes? Will I remember this perspective and handle it with grace? Time will tell.
In the meantime, I was reminded of my favorite lyric from “O Little Town of Bethlehem,” which is just one of the many Christmas songs I am listening to right now. “The hopes and fears of all the years are met in thee tonight.”
I am filled with hopes and fears, but I trust the one who holds my future. God’s grace has sustained and blessed me this far, so I have no reason to doubt what lies before me.