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.
I’ve heard and read so much about the topic of fear, yet I still wrestle every day with my own fears related to Friedreich’s ataxia (FA).
I fear for both my present and my future. I’m afraid of falling. I’m scared I’ll be injured. I fear being judged, overestimated, and underestimated. I’m scared of missing out. I’m fearful of the negative way that FA is changing my body and personality. I’m fearful of new, debilitating symptoms. I’m fearful of the progression of already existing symptoms. And I’m fearful of what life in a wheelchair will look like for me.
I am afraid of how fearful FA has made me.
Acknowledging and overcoming
Before FA entered my life when I was 25, I never would’ve considered myself as a fearful person. Now, as you can see, complex and unresolved fears constantly swirl in my mind. Fear is an unwelcome and almost constant companion on my journey with FA.
Therefore, whenever I hear someone talking about the subject, my ears perk up. Fear is a common phenomenon in the human condition, so there’s no shortage of thoughts about it. I thought I’d share some of my own reflections and some commonly quoted words of wisdom in relation to fear caused by FA.
Self-help author Robin Sharma observed that the “fears we don’t face become our limits.” I can’t think of a more resonant quote when it comes to dealing with lifelong illness and disability. If I let my fear of falling establish my limits, for example, I’d never leave my bed. Instead, I identified my fears and did what I could to live with them. That includes exercising to strengthen my abilities and acquiring mobility aids to assist with my disabilities.
Frank Sinatra once said that “fear is the enemy of logic.” Logically, I know that most of my friends and family can see the real me, the Kendall beyond my FA-induced weariness. They don’t expect me to be inspiring, fierce, fearless, or optimistic every moment of every day. They know that my abilities, confidence, energy, and moods are fluid and constantly changing. But I can lose sight of that logic when I focus on my fears. The encouragement, grace, and support of those closest to me help me logically cope with my emotional fears involving FA.
An anonymous quote notes that fear “defeats more people than any other thing in the world.” It is so easy to let my FA-related fears defeat my body, mind, and spirit. It already has on several occasions. But I refuse to remain defeated.
There isn’t a quick-fix solution to overcome them, but one thing that helps me fight back is simply recognizing them and refusing to accept them. That process looks a little different depending on what I’m facing, but it almost always comes down to a resolution from me to simply keep going.
I’m a big fan of the Harry Potter series of books, which describe a stigma associated with saying the name of Voldemort, the villain, because doing so only empowers him. One of the main protagonists, Albus Dumbledore, explains: “Fear of the name increases fear of the thing itself.”
I tend to agree. Therefore, I hope that speaking about my fears will help me to overcome them, rather than living under their oppressive weight.
“For God did not give us a spirit of fear. He gave us a spirit of power and of love and of a good mind.” — 2 Timothy 1:7
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