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.
Last weekend, I had an old experience in my new, disabled body. I went to a wedding.
Most of my friends are in the “married and having babies” phase of life, so I haven’t been to a wedding in about four years — before I was dependent on a mobility aid due to my Friedreich’s ataxia (FA) progression.
In truth, I was nervous for months leading up to the joyous occasion. The bride is my best childhood friend. She was also my college roommate and the maid of honor at my wedding. At her wedding, I knew I would run into childhood friends I hadn’t seen in 20 years, and college friends I hadn’t seen in 12 years. Considering that I was diagnosed with FA eight years ago and began using a walker three years ago, it’s safe to say that these old friends didn’t know what to expect in meeting “Kendall with FA.”
Add in the complications of being in a wheelchair due to a foot fracture, and my husband being unavailable to accompany me until the festivities on Saturday, and the weekend quickly became intimidating.
Being there for my friend was far more important than my fears and insecurities. So, I gathered up all of my courage and decided it would be an adventure and a test of my independence and grit. In other words, I was too stubborn to let my body and my disability dictate my ability to celebrate my beautiful friend and her wonderful new husband.
I experienced many new things on this trip, including talking a valet through opening my wheelchair, opening a heavy hotel room door from a wheelchair, utilizing a roll-in shower with handrails, navigating elevators in a wheelchair, and giving and receiving countless wheelchair hugs. After each new experience, I said to myself, “See! You can do this disabled life! It’s not that bad!”
I was reminded of one of my favorite quotes from a “Winnie the Pooh” movie, in which Christopher Robin says, “You’re braver than you believe, stronger than you seem, and smarter than you think.”
I think that applies to just about everyone, especially those of us battling fear, insecurity, uncertainty, worry, and doubt due to physical disabilities.
Last weekend taught me a lot. I tried something old in a new body. It was a new but unexpectedly familiar experience. Although I was physically sidelined for a lot of the action, it was more fun than I expected.
My advice to others with FA is to step out of your comfort zone more often. It’s easy to let our disability dictate how we RSVP or approach events, but just because it’s easy doesn’t mean it’s right.
Remember Christopher Robin’s message and live boldly! Look for opportunities to test yourself. Give yourself a chance to shine. Take risks, though not foolhardy ones that will likely result in an injury. You never know when you may surprise yourself and what you can learn.
Boldly go forward. Try both new and old things with your “new” body. If we allow disability to dictate all of our choices, we have officially surrendered our power. We must take it back! It may be the best decision we’ve made in a while.
Symptom progression doesn’t have to mean a lack of life progression. Keep moving forward and living the life you want, even if the parameters are less than ide
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