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.
It’s no secret that I struggle both mentally and physically with the relentlessly progressive nature of Friedreich’s ataxia (FA). Just when I think I’ve got the hang of coping with advancing symptoms and the adaptations they require, new challenges enter my path.
I feel like I’m constantly putting my life on hold by letting FA dictate where I spend my time and energy. Instead of adjusting on the fly, I let FA call the shots, thereby forcing everything else in my life to pause or make room. It’s especially unfair to my family and friends, and isn’t good for my mental well-being.
If you find yourself in a similar pattern and hope to change it, my advice, which I hope to follow myself, is this: Symptom progression doesn’t pause for anything, so don’t let it pause your life. Keep going.
I’m not saying, “Symptom progression is inevitable, so drown out your FA symptoms by focusing on the other things in your life,” because that isn’t possible, nor would it be safe. I’m simply suggesting that we be aware of the power we’re giving FA when we push pause on our life, and that we make note of our patterns. That way, we can hopefully come up with less disruptive ways to cope with disease progression in the future.
I have been dealing with FA and its many symptoms for almost a decade now. When I was diagnosed, I often caught myself thinking that progression didn’t really bother me, because I was so sure that a cure would be found before FA disrupted my life in any significant way.
Was this naive? Probably. Was it counterproductive? Not necessarily. Did it help me practice coping with what my future held? Definitely not. Am I still hoping for a cure in my lifetime? Absolutely.
So how can I incorporate this hope into my new plan for handling FA progression-related pauses?
I intend to hold on to the hope of a cure swooping in and saving me with a loose grip so that I don’t stop moving forward while waiting for one. If I keep fighting to find the best way forward, I will be prepared to work any potential treatments or cures into my future.
Disease progression doesn’t pause for hardships like illness or heartbreak, or for celebrations like vacations, memorable events, or milestones. So why do I spend so much time and energy adapting to FA? I think that on some level, I’m trying to regain control over my life.
There’s a surprising sense of freedom in acknowledging that I don’t have any real control over what FA does to my body, but I do have the power to control how I handle my symptoms. And I choose to keep moving forward.
“For the Spirit that God has given us does not make us timid; instead, his Spirit fills us with power, love, and self-control.” — 2 Timothy 1:7