The risk of falling is always present with Friedreich’s ataxia

When it comes to falls, I have 3 main fears

Kendall Harvey avatar

by Kendall Harvey |

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Stumbles, accidents, and falls come with the territory of many physical disabilities, especially ones like Friedreich’s ataxia (FA) that impair balance and coordination.

Although my falls have become less frequent since I was outfitted with the necessary mobility aids, these incidents remain a fairly unavoidable reality in my life. While I’ve accepted my limitations and try to humbly and peaceably live within them, falls still happen.

The scariest part is that my falls are becoming more spastic. As my friend, FA spokesperson Kyle Bryant, once said, “My brain doesn’t tell my limbs where they are in space.” Basically, those of us affected by FA don’t receive the billions of messages from our body and its surroundings that a person without FA does. Most people will feel a loss of balance that their body will automatically try to correct. My body doesn’t get those messages.

When I’m losing my balance, my body begins a frantic spiral. I flail around, trying to either stay on my feet or grab something to steady myself. These actions result in a complete loss of control, usually ending with me banging myself up on my way down to the ground.

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Facing my fears

Knowing this, I’m terrified of falling. I’ve already endured three catastrophic falls, two ending in broken bones and one in a bruised bone. I desperately want to avoid adding to those numbers. But I have two other fears related to falling — and the first of them is hurting someone else.

As I explained, I’m completely out of control when I’m falling, which, unfortunately, means that anything or anyone around me is in the warpath, so to speak. I’ve fallen a few times around my precious 7-year-old daughter, Collins. Regrettably, I once knocked into her and banged her against her bathroom vanity. Miraculously, no one was hurt. We were both shaken up, but physically OK.

However, that incident haunts me. I fear the next time won’t end so well.

My last, and most vain, fear is embarrassing myself. I desperately want to be “normal.” I know that using mobility aids makes me look anything but, so I try to appear as in command of my body as possible. I try not to reveal how desperately I cling to the lifeline of my mobility aids. I try not to look as disabled as I feel.

Most of my falls happen at home. While that’s likely because home is where I spend most of my time, it’s also where I’m most comfortable, and where my tight grasp on my defenses has the greatest chance of slipping.

However, I suffered an embarrassing and dramatic public fall in front of many friends, acquaintances, strangers, and children last week.

Our local church was hosting its annual vacation Bible school, or VBS, which is a week full of games, snacks, songs, stories, community service, and fun for kindergarteners through fifth graders. The campus buzzes with nearly a thousand people. I always volunteer to be part of the administrative team, and it’s a blast!

A family of four poses for a photo in front of a backdrop that looks like a scientific laboratory. The words "Making Madness" are featured in large purple text, and a computer screen reads "Lake Hill Church VBS."

Kendall Harvey, back right, with her family at Lake Hills Church Vacation Bible School in June. (Courtesy of Kendall Harvey)

On the last morning of VBS, I was trekking to my spot at the information tent. I was using the ramp on the sidewalk, just as I’ve done hundreds of times, when it happened: I lost my balance. Fortunately and unfortunately, there wasn’t anyone close to me when I began my typical FA spiraling. I slammed my knee onto the concrete, buckled sideways onto my hip, and rolled onto my back.

Horrified onlookers sprinted to my side and helped me to my feet. I was quickly nursed with an ice pack, Neosporin ointment, and bandages. Physically, I knew I’d be OK; the cuts and bruises would heal. But my ego took a beating.

Still, I know that falls will happen, so I’ll continue rolling with the punches. I refuse to sideline myself or cushion my existence, so I’ll keep taking precautions, adapting, and moving forward to a better tomorrow.

“Do your best, prepare for the worst — then trust God to bring victory.” — Proverbs 21:31 (The Message)

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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