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.
On Feb. 25, I attended the Fearless Mom conference at Lake Hills Church in Austin, Texas. There, I heard from Andy Andrews, the New York Times bestselling author of “The Traveler’s Gift,” “The Noticer,” and more. He said, “Perspective is how you choose to see things. Perspective is the only thing that can totally change the results without changing a single fact.”
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If you have followed my column, “My Darling Disability,” for any length of time, you’ve probably noticed that I mention perspective frequently. I truly believe that having the right perspective can make all the difference in life, especially when facing health challenges such as Friedreich’s ataxia (FA).
As my symptoms have progressed over the past 10 years, causing me to be dependent on a walker for the last four, my perspective has evolved, adapted, and changed — but the one constant has been knowing that I am “fearfully and wonderfully made.” It’s easy to embrace the wonderful parts of my life, such as my fulfilling roles as a wife, mother, friend, and daughter, but the fearful parts have been a challenge.
When I notice myself getting sucked into a negative mindset because of the obstacles I face with FA, I push myself to update my perspective with this either-or: “Kendall, you can either live a disabled life, or you can live life with a disability.” It’s a small but powerful distinction.
To me, living a disabled life means that your disability controls your life. You let what you can’t do dictate everything — your choices, mood, habits, plans, mindset, and so on. You give your disability all the power.
When you live life with a disability, your disability is only a part of your life. You’re still in charge of your choices, mood, habits, plans, mindset, and so on. Yes, your disability can and does influence those, but it doesn’t have complete control over everything. You still have the power to live the life you choose when you take a full account of your abilities.
For example, when I live a disabled life, I avoid activities, yell at my loved ones, sleep horribly, and get sick and tired, which inevitably leads to falls. It’s a vicious cycle where I end up drained, just cursing life and FA.
When I live life with a disability, I make plans to go about my activities safely with the necessary accommodations and take care of myself by getting enough sleep, exercising, and eating well. I end up focusing on things that fulfill me and truly enjoy life.
Although FA is progressive and constantly changing, requiring frequent adaptations, the fundamentals don’t change, and that makes planning accommodations easier. I know that when I wake up tomorrow, I’ll still need my walker, my speech will be slow and slurred, my toes will be fragile and numb, and I’ll move slowly. I can either accept that and live my life around it, or I can let it overpower me and define me.
I know that changing my perspective won’t change my physical outcome or allow me to overcome my symptoms, but it can change how FA affects my life.
“Because you have these blessings, do all you can to add to your life these things: to your faith add goodness; to your goodness add knowledge; to your knowledge add self-control; to your self-control add patience.” — 2 Peter 1:5-6 (ERV)
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