Shifting into High Gear: One Man's Grave Diagnosis and the Epic Bike Ride That Taught Him What Matters

Shifting into High Gear: One Man's Grave Diagnosis and the Epic Bike Ride That Taught Him What Matters

by Kyle Bryant


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Product Details

ISBN-13: 9780757321528
Publisher: Health Communications, Incorporated
Publication date: 02/26/2019
Pages: 220
Sales rank: 118,980
Product dimensions: 5.40(w) x 8.40(h) x 0.60(d)

About the Author

Diagnosed with a debilitating disease called Friedreich's ataxia (FA) at age seventeen, Kyle Bryant set off across the country to raise awareness. Today, he is the founder and director of rideATAXIA—a fundraising program of the Friedreich's Ataxia Research Alliance (FARA) which welcomes thousands of participants who raise 1 million dollars for research every year. As the public face of FA and spokesperson for FARA, Kyle is in the vanguard of individuals who lend their passionate voices to the rare disease community. As he struggles to manage his own declining health and keep the FA research torch burning for a cure, his one-to-one grassroots efforts provide hope for recently diagnosed patients and those well into their journey, inspiring and coaching them toward the finish line. Kyle lives outside of Philadelphia, which is the base of operations for FARA, where he rides his beloved recumbent trike throughout the year.

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Chapter 1

I'm the Guy Wearing Handcuffs

Let's put it this way: When you're seventeen and you stumble like you're drunk, something's wrong.

I didn't know it was coming. For several years, my physical abilities had been declining.

Big time.

At first, the signs were small. When I grabbed a pen to take notes for class, the handwriting didn't look like mine. I would toss a ball up to catch it, and it landed in the grass. When I walked downstairs, I had to concentrate on not falling over the railing.

Soon, navigating a sidewalk became a challenge. I'd grab onto anything for support—the edge of a table, a bush, or the shoulder of a stranger.

I'd struggle to get a key in a lock, pour a glass of milk, or carry a cup of water into the living room. The spilled drink, the broken glass, and missing the keyhole were adding up. I was turning into an old man at seventeen.

The doctors ran tests, asked questions, and caused my family to orbit around an unknown that threw everything into question: What was happening?

After a year of visits to various doctors, neurologists, and finally the UCLA Ataxia clinic, my genetic material got sent to a lab. The results said I had Friedreich's ataxia (FA), a degenerative neuromuscular disease, which is most often diagnosed in children between the ages of five and fifteen.

When the doctor explained the results, the medical terminology sounded like a foreign language, but I understood enough.

I understood the invisible force that had pulled on me for years. I understood all the times I couldn't make the baseball team, stumbled during band practice, fell over on my bicycle, or couldn't leap over the railing when I was a lifeguard. I tuned into my anger, my despair, and the growing mistrust of my body when I couldn't perform simple tasks.

But when the doctor said it shortened life expectancy, my world burned.

This wasn't my reality.

I lived in a small Northern California town, at the base of the Sierra Nevada mountains. My reality was defined by the song I played in the car—the windows rolled down as I turned into my high school parking lot, perhaps thinking about how I was going to get beer that weekend, or how I should leave the bleach in my hair longer next time to achieve a more translucent look. I was confident, athletic, the high school prom king.

The facts of this new identity contaminated my existence. I faced a continuum that I could not change.

I thought, "You're going to hit bottom, dude."

I was going to die.

Crawl Before You Can Walk

Imagine walking down a city street.

Your feet feel ten times heavier. Rather than walk, you stumble. You're crossing deep sand, wearing a tight bodysuit that restricts every movement. Maybe your vision shakes a bit, like you're experiencing sudden earthquakes with each step. At unexpected moments, your balance throws you off. Add these symptoms up and you have the onset of FA.

The optimal body corrects quickly, which allows most of us to walk and maintain balance. With a neurological disease, that correction happens slowly. They call it loss of proprioception and it's a hallmark of FA. Functional proprioception allows us to sense our body parts in space without looking. We can close our eyes and feel the wind, listen to the sounds around us, and remain standing.

But people with FA lose that capacity. With FA, if you close your eyes, you hit the ground. Your body loses a clear relationship to gravity.

Now, keep walking down that sidewalk. You're grateful for any patch of grass on the horizon. You're thinking, "Man, if I fall, I'm falling right there. Oh, there's a tree. I can stabilize myself. Sweet, I'm coming up to a railing. Here's a bench. Let's sit down."

That's a lot for a seventeen-year-old to handle—or anyone, at any age.

That's why on a Friday night, after leaving a college party, I was the guy who ended up sitting on the curb, wearing handcuffs.

I lived in Davis, California, at the time—twenty-one and embracing college life at the University of California. I planned to major in engineering, graduate, and get a decent job.

The party was loud, typical, and roaring drunk with twenty-somethings. When I left the house to make my careful crawl back home, the cops arrived and saw a young man stumbling down the sidewalk. Remember, I'm the guy wearing a super-tight-full-body-denim-suit-strapped-in-with-rubber bands, gravity pulling on me in unpredictable ways.

The policeman pointed to the curb. "Sit," he commanded.

I plopped.

I glared at the suburban Davis neighborhood. Davis is one of those towns in California where most of the soccer moms have PhDs. Modest single-story homes lined the streets, tidy lawns, Volvos parked in the two-car garages.

The Central Valley blew hot against my back and the entire suburban community conspired to rise against me—the students standing on their front porch, the neighbor walking his dog, the stout officer leaning over me on the curb.

I shut down and refused to communicate. The cops wouldn't believe me, anyway. They're not going to listen to a "drunk" college kid.

I could have defused the situation by addressing it head-on, but it was easier to feel victimized. It was easier to be pissed. I wanted to lash out, hurt someone. I felt sorry for myself, and I wanted to draw attention to that fact.

"Screw you!" I ranted. "You don't care about me. You don't know what's going on."

My buddy Sean tried to stand up for me. "My friend has a condition that causes him to wobble." But that was useless.

The policeman didn't try to keep the smirk off his face. To him, I was so drunk that it was a medical emergency. Pretty soon, a fire truck arrived, paramedics, more police, more flashing red lights.

All for me.

I understood the dubious look on the officer's face. Why would he even know?

Friedreich's ataxia is an unknown disease. It affects one in 50,000 people, making it officially a "rare" disease. In the U.S., the National Institutes of Health classifies a disease as rare if it has a population of less than 200,000, and FA only affects roughly 5,000 in the U.S.

But rare diseases are hardly rare. Look across the American landscape, and you'll find more than 30 million people—10 percent of the population—facing the unknown of a rare disease. It's a shadow that moves in many directions.

Eventually, things got sorted out and the cops drove me home. But, for me, things were just getting started. Why should I have expected a policeman to know about my illness? I barely understood the disease myself.

Most affected people don't want to look at disease. They don't want to witness their own finite existence stumbling down a city street, wheeling through a grocery store, or eating through a tube.

That was me.

American culture is built upon a pull-yourself-up-by-the-bootstraps mentality. We're a "do-it-yourself" society. You hear people say, "I'm grateful for my health." They often mean, "I'm glad I'm not disabled."

That's the lens through which I saw myself. I experienced my youth as an "able-bodied" person, and I had all the preconceptions—and ignorance—about disabilities. I would see a kid in a wheelchair and think, "Oh, poor thing."

We are wired to view "difference" as a deficit. I had a vision of myself as a functional person, and it wasn't someone with a neurological disease. My vision and my reality were starting to diverge.

No matter how well intentioned, liberal-minded, or compassionate we behave, we fault people who are not able-bodied. Even when we extend compassion toward someone's physical state, we identify their inability to operate within a "functional" range. Our range. A comfortable framework. In that moment, we place ourselves at odds with other human beings who simply want to do their thing.

I perpetuated this thinking.

One would think that when I became a young man with a disability, I would gain some perspective—embrace an alternative view.

But I was slow to change.

I started to see myself as flawed, a liability. How could I provide for myself, or for a future family? How could I build a career when I couldn't walk? How could I face challenges as I became more dependent upon others?

After my diagnosis, I walked around in a fog. This wasn't happening.

I was ashamed that I might hold my friends back. I was ashamed that I might give up when things got difficult. I was ashamed that I was the weak link in my family, worried that my parents would have to care for me for the rest of my life. I didn't want anyone feeling sorry for me.

We all have a vision for our lives. That includes everyone around us. We want our moms and dads and brothers and sisters and friends to be happy, sometimes more than ourselves. As my disease cast its long shadow, someone had to take the blame. After all, it's my disease. Why should I limit the dreams and hopes of others?

When the policeman told me to sit on the curb, my only solution was to push back. My shame became the reason to make my push, even though it was a destructive force.

©2019 Kyle Bryant. All rights reserved. Reprinted from Shifting Into High Gear: One Man's Grave Diagnosis and the Epic Bike Ride That Taught Him What Matters. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442.

Table of Contents

Prologue: An Autobiography of Stitches ix

Chapter 1 I'm the Guy Wearing Handcuffs 1

Chapter 2 When Infinity Knocked on My Door 31

Chapter 3 This Ride for Bailers Only 57

Chapter 4 The One-Legged Man and the Ten-Year Walk for Jesus 79

Chapter 5 Following Your Dreams? Prepare for Roadkill, High Winds, and the Stench of Oil 93

Chapter 6 The Queen of Walmart 103

Chapter 7 This Cure Not for Heroes 117

Chapter 8 Change Sounds Good in Theory 137

Chapter 9 Finding Graceland 157

Chapter 10 The Journey Continues 173

Acknowledgments 195

About the Author 197

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