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.
The first thing I experienced after my Friedreich’s ataxia (FA) diagnosis in 2013 was fear for my future.
I remember reading words like “wheelchair-bound,” “terminal,” and “average life expectancy of 35.” That meant I had already lived more than half of my life. And while my first 25 years had been wonderful, they weren’t enough. I wasn’t done.
I didn’t want to spend my remaining years as a disabled lab rat. I was terrified that the vision and plans I’d had for my life were now out of reach, as my future would be determined by FA.
Fear took over my life. It drove my decisions, behavior, and attitude for longer than I care to admit. Reacting from a place of fear took my life in interesting and unexpected directions.
I became a dedicated student of my disease by trying to learn everything I could about it. I threw myself into passionately building “Team Kendall,” a place where people could learn about FA, read my story, and get involved in our mission to cure FA. I changed careers. My husband and I decided to make the most of our “good years” by starting a family. My friendships were either strengthened, rekindled, or strained. My faith was tested in ways I never deemed possible.
I always thought that I had a firm foundation in my faith, but when I switched from letting faith drive my life to letting fear control my life, everything changed — and not for the better.
I was constantly anxious and felt out of control. I was so afraid of my future that I became convinced that if I fundraised enough, networked enough, and worked hard enough, I could change my future overnight, and FA would vanish. But a nagging voice in the back of my mind would constantly remind me that FA was unavoidable, and fear would take over again. After all, I was only one victim of this cruel, relentless disease. What real difference could I make?
After living in this unfulfilling mindset for a while, I chose to relinquish my fears and desperate quest for control to God. The past eight years have shown me what a difference living a life of faith can make.
I have raised over $225,000 for scientific research aiming to treat and cure FA. I have built the best network of friends imaginable. I have received support and encouragement from wonderful people who follow my story from around the world. And most importantly, I am no longer driven by a desperate fear of the future.
That’s not to say that I am no longer afraid of what FA has in store for me, but I can acknowledge that FA is only a part of my future. It doesn’t define me. It doesn’t rule my life.
I choose to act from love, faith, hope, reality, and courage. Fear will always be in my life, but as a passenger, not the driver. As 1 Corinthians 16:14 in the Amplified Bible says, “Let everything you do be done in love [motivated and inspired by God’s love for us].”
My pastor, Mac Richard, shared a wonderful sermon on Sunday. He said, “You are here to make a difference that represents the difference that God has made in your life.”
Thanks to God, my life is beautiful and wonderfully complex. I am honored to share that with the world.
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