How I continue to adapt to life with my ‘darling disability’
Despite the challenges I've faced due to FA, I still lead a full life
I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. What led me to that diagnosis was a quest for answers about why I was losing my athletic abilities.
I was always very active, participating in cheerleading, swim team, softball, volleyball, track, and any other sport possible. My childhood was happy, and I was just like every other kid my age. I love sports and all things active and outdoors.
In early 2013, I noticed some troubling developments while playing sports or exercising. I was slower, weaker, less sure-footed, and I’d tire easily. I was falling in sand volleyball when I wasn’t purposefully diving for the ball. My body didn’t respond the way it always had when I’d go for a jog, chop vegetables, carry heavy laundry baskets, or sing along to fast songs. I knew that a 20-something who has been healthy and active her entire life doesn’t start losing her balance and becoming weak, slow, and tired for no reason.
My five-month journey of appointments, blood work, imaging, Googling, worrying, and receiving “normal” test results came to a halt on Aug. 19, 2013, when my doctor said, “Kendall, I feared that this might be the case. You have Friedreich’s ataxia.”
After going through periods of shock, mourning, and information gathering, I decided to regain control of my life. I had an idea of what my future could hold and decided that FA would simply have to fit into that picture.
The progression of my disability, and of my column
When I started writing my column for Friedreich’s Ataxia News in 2018, my disability was still very minor, in the big scheme of things. I couldn’t run, jump, or play sports, but that was about it. My life still felt fairly normal, only now I knew what the future had in store for me, given the progressive and degenerative nature of FA.
Therefore, I decided that I would still have the darling American Dream; I would just adapt and make the necessary changes to accommodate my symptoms. I named my column “My Darling Disability” to disarm FA and set the tone that I was still going to live a full life, despite my disability.
I truly didn’t grasp how disruptive this “darling” disability of mine would be. I didn’t realize how this sleeping giant I was harboring would reach into and disrupt every aspect of my life. That is the power of hindsight. Yet, despite the physical, emotional, spiritual, and mental disturbances I’ve faced due to FA, I still lead a blessedly full life.
Life requires grit and grace, especially with a disability. I don’t plan on quitting my quest for the life I seek, no matter how un-darling my disabilities seem at times.
Therefore, I make a weekly choice to continue to view my life as mine.
One of my favorite sayings is that life doesn’t have to be perfect to be wonderful. I truly believe that, and it is at the heart of my column.
Because of my foundation of faith, I also believe Romans 8:28, that “God causes everything to work together for the good of those who love God and are called according to his purpose for them.”
I hope that “My Darling Disability” has made readers’ lives a little brighter.
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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