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.
In August 2013, months of questions, fears, and wild speculation came to a shocking conclusion. The changes to my body and abilities were explained: I had Friedreich’s ataxia (FA).
The days, weeks, and months after receiving that diagnosis were some of the strangest of my life. As I learned what my DNA had in store for my body, I bounced between anger, fear, denial, depression, grief, and confusion about 12 times a minute.
I was anchorless and directionless for the first time in my life, and it overwhelmed me. All of the negativity surrounding that kind of diagnosis seemed inescapable. I remember thinking, “What do I do now? Because living like this isn’t sustainable.”
I hated that abyss of negativity and despair. Even though my diagnosis seemed determined to change every single aspect of my life, I decided not to let it. I refused to just sit back and accept the fate that FA had in store for me, so I decided to do something positive and productive: I was going to cure FA while living as “normal” a life as possible.
That’s when I found rideATAXIA, the exciting nationwide fundraising event that benefits the Friedreich’s Ataxia Research Alliance. I started Team Kendall in 2014, full of hope.
The past nine years since then have been a wild roller coaster of mobility aids, physical therapy, adaptations, injuries, and fears. But that time has also brought opportunities, friends, learning, growing, clinical trials, writing, growth, and hope. RideATAXIA has been a consistent source of H-O-P-E through the years.
H for humbling
My future is not in my hands. It’s in the hands of capable scientists fueled by generous donors, and in my loving God. Realizing that, depending on assistance, and living in that truth daily are humbling.
O for opportunity
I have the opportunity to redefine my possibilities, priorities, future, goals, and capacity. I also have the opportunity to share my story in the hopes of being a part of the movement to cure FA.
P for promise
As Jeremiah 29:11 (NIV) says, “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” I know that I’m not promised a life free of trials and hardships, but I’m promised hope and a future. So all I can do is foster that hope while striving to make the most of my future.
E for expectations
Team Kendall’s efforts this year, and in the past nine years, matter. I can say with confidence that I expect there to be more good days than bad days as we work together to find a cure. And what a great day that will be!
Since my diagnosis, I’ve had some of my best days, like when my children were born, and I’ve had some of the worst days, like when I obliterated my ankle. The one thing that’s been consistent throughout my journey is how desperately I’ve clung to hope.
Though the feeling of hope can be strengthened through rideATAXIA, seasonal fun, accomplishments of my loved ones, or just wonderful stretches of joy, the consistent source of hope for me is my faith.
I recently became obsessed with the song “I’m So Blessed” by Cain:
‘Cause on my best day, I’m a child of God On my worst day, I’m a child of God Oh, every day is a good day And You’re the reason why I’m so blessed, I’m so blessed Got this heartbeat in my chest No, it doesn’t matter about the rest If I got You, Lord, I’m so blessed
Team Kendall has raised nearly $250,000 through the years, and I’ll participate in my ninth rideATAXIA on Nov. 5. Please consider blessing the FA community with a gift of hope by considering Team Kendall as you plan your end-of-year donations, and together we will cure Friedreich’s Ataxia!