FA Progression No Longer Has Total Control Over My Life
Columnist Kendall Harvey is done pushing pause on the things that truly matter
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
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.
About the Author
marsha church
I have had ataxia since 2008, i was diagnosed when i was 45. my cousin got it in his late 20s. I try to live day by day, and struggle some days, and other days, i am fine. I dont let it control my life, but sometimes i dont go out to the place i love to go which is the pond...My friends understand but it took awhile for them to understand what i am going through. this article was very touching to me...And i appreciate it..
Karina Jeronimides
it's hard to move forward when because of bladder issues, and inability to shower independently, you can no longer take a plane to go see your mom and ailing brother, or when you cannot afford a wheelchair van or a driver to go see your daughter's soccer games or visit your older daughter who just left for college and is only 2 hours away. Sleeping outside of my home has become so exhausting and so expensive, that I don't leave it. All I do is work and take care of health issues. I see friends every other weekend and they don't have their own issues, they don't get mine at all. I've had FA for 3 decades. I too used to believe in a cure, but now i really don't. And it's not the reason why i get up in the mornings.