Navigating unexpected events, both good and bad, in life with FA
My disability brings many 'I never thought I'd have to' moments
The decade that I’ve been living with Friedreich’s ataxia (FA) has been full of unanticipated highs and lows. It has also been full of chaos, monotony, blood, sweat, tears, laughter, praying, research, victories, failing, falling, rallying, trying again, and celebrating. Amid all of those moments, a few stand out to me — particularly the unexpected “I never thought I’d have to” events.
This month, I’m once again forced to do something I never thought I’d do even once: I must, for the third time, go to the Department of Motor Vehicles and declare that I am disabled to the point that I require special accommodations.
I first requested an accessible parking placard to hang from my rearview mirror in 2018, when I regularly relied upon shopping carts, strollers, and helpful hands to get from point A to B. It seemed insignificant and monumental all at once. I had no idea how much a little blue piece of plastic would change my life.
I was pleasantly surprised by the benefits of parking in designated accessible spots, such as less demand on my progressively incapable body, thanks to the shorter walks from the car to my destination. Tasks outside of the house seemed less daunting when I knew that the parking situation would be a little safer.
But the placard has also brought negativity to my life. It’s a constant reminder that, even though I’m doing “normal” things like running errands or chauffeuring my children around, I am not “normal.” In fact, I need government-sanctioned approval to accommodate and aid my abnormalities as I attempt to function normally. It makes me sad that I need so much help.
As my symptoms have progressed and my needs and disabilities have changed, my dependence on accessible parking spots has increased. I need the extra space to safely get in and out of my car and to and from the trunk for my walker, wheelchair, or scooter. I rely on shorter walking distances from the car to my destination to preserve my energy.
Life events I never anticipated
In addition to the parking placard, FA has brought many other “I never thought I’d have to” moments into my life.
I never thought I’d have to buy a mobility aid, but I’ve now purchased over a dozen. I never thought I’d participate in a fundraising event that would fuel lifesaving research for something I face, but I registered Team Kendall for my 10th rideATAXIA on Nov. 4. I never thought I’d participate in a clinical trial while desperately hoping it would prolong my life, but I’m in my fifth year of one. I never thought I’d have to pull myself out of bed despite my tired body begging me for rest, but that is my daily reality.
I also never thought I’d welcome two babies into the world and constantly thank God for their health. I never thought I’d find such amazing friends who feel like family. I never thought I’d get to travel and experience so many wonderful things with the love of my life and our young children. I never thought I’d be in a position to share my life experiences with others to inform or inspire them.
I once believed FA would make these wonderful moments impossible, and that makes accomplishing them feel even sweeter. Those moments also make it easier to get through the “I never thought I’d have to” times.
I realize that everyone, regardless of ability or disability, has to do things they never expected and gets to do things they never anticipated. That is part of the human experience. The important thing to remember is that all of your feelings about those experiences are valid. It’s the actions you choose in response to those feelings that matter most.
As for me and my life with FA, I choose to process the bad and celebrate the good.
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” — Romans 15:13
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.
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