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.
Summer is in full swing for my family. My daughter, Collins, 6, and my son, Brooks, 8, finished school the last week of May, and it’s been nonstop chaos ever since. With camps, trips, sports, tutoring, working, exercising, chores, play dates, and more, our summer has been action-packed.
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Every time there’s a change in my routine, my body needs a little while to adjust to the “new normal.” This summer is no different. Because of my progressing Friedreich’s ataxia (FA) and its ever-changing symptoms, I don’t have the luxury of simply falling into familiar patterns. The body I have this summer is a little more disabled than the body I had last summer, and I’ve had to patiently figure out what that looks like.
Last summer, for example, loading my walker in and out of the car to take my kids here and there wasn’t a very daunting task. I could do it relatively mindlessly, in fact. Now I need to leave about five minutes earlier to safely account for this task taking more time. I must have my hands completely free, firmly plant my feet, and lean against my car before lifting my walker out of my trunk. Then I slowly make my way to my destination.
My kids are patient and helpful, for which I’m incredibly grateful, but unfortunately, loading and unloading my walker from the car isn’t a task they can take over. My need to move more slowly and intentionally is just something we’re all getting used to.
My son is playing all-star baseball this summer, which means that we travel to youth association baseball facilities all over the surrounding Austin, Texas, suburbs. Every facility is different and, therefore, an adventurous test of my abilities. I use my electric mobility scooter most of the time, and it’s been helpful and humbling all at once. I feel like everyone is staring at me, trying to figure out what is “wrong” with me.
I also had to fly to Atlanta to get to Emory University’s neurological hospital for my semiannual clinical trial visit on the first Friday in June. Nothing makes me feel more disabled than traveling cross-country for these visits. What with waiting for accessible bathroom stalls to become available, being frisked by Transportation Security Administration agents, politely smiling at condescending glances, waiting for an Uber that has trunk space for my walker, struggling my way through the neurological exam, and scheduling to do it all again in six short months, each trip is a physically, mentally, and emotionally draining battlefield.
My daughter and I then took a break from summer chaos and tagged along with my parents on a trip to Huntington Beach, California, for a week. It was a lovely time, but like most experiences, it was emotionally complicated by FA. Not being able to run on the beach and dip my toes in the Pacific Ocean with my daughter, who’d never been there before, was gut-wrenching. Her joy was overflowing, and I desperately tried to soak it in to combat the rising and all-consuming anger I felt at being trapped in my disabled body.
It’s so easy to get lured into funks while I process the reality that this is my life. But staying in that bitterness is both unproductive and unfair to those around me. I just need to allow myself pauses to recognize what triggers my negative feelings, process those feelings, and find a way forward.
I don’t think I’ll ever feel that this disabled body I’ve been given is fair, but that doesn’t mean I can’t enjoy life with it. I just have to take time to accommodate the bad so that I can bask in the good.
“Let all that I am praise the Lord; may I never forget the good things he does for me. … He fills my life with good things. My youth is renewed like the eagle’s!” — Psalms 103:2, 5 (New Living Translation)
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