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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 on 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 rare disease as 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.
* * *
OKAY, IT'S IMPOSSIBLE, SO LET'S BEGIN
Many see disease as an obstacle to living a formidable life. Perhaps that's the underlying shadow to all illness. Disease reminds us of our limitations, our fears, as if disability means the end.
This message says Don't overextend yourself. Don't push beyond your edge. Be wise and, above all, live in moderation.
Without a doubt, moderation is safe. Most of us want to feel safe. We keep our lives limited, and make sure not to overdo. Most of us barely touch our potential because we buy into this thinking. We play a little golf, swim a little, work a little, play some cards, shoot some pool, write occasionally, or play guitar sometimes.
We all want to be well-rounded people doing everything in moderation.
However, there are a few people who get really good at something. Often these people are viewed as having unhealthy obsessions. But these are the people who excel and achieve great things.
Think the Wright Brothers; the first person to scale Mount Everest; the first man on the moon; the first woman to swim the English Channel ...
Philippe Petit, the man who walked a tightrope strung across the span of the World Trade Center, was obsessed with the impossibility of his feat. In the documentary about his stunt, Man on Wire, he refers to this impossibility, over and over, until he says, "And slowly I thought: Okay, it's impossible. That's sure. So, let's start working."
This is a powerful concept.
When we accept the understanding that the fruits of possibility and the limits of impossibility are closely aligned, we can make the choice to move ahead, knowing the risk.
We need more obsessive people in this world — individuals who run straight toward their fear, and lean beyond their limits. If you want to pursue a dream, then you abandon your list of "what ifs" and make a risky decision.
Reaching for extremes, however, has the potential for extreme failure, and this fear often prevents us from moving forward. That's moderation, when you accept the conditions of your fate without argument.
We can all change the direction of our lives. But we must be willing to take an objective look at what's standing in the way. I wasn't willing.
My journey toward self-acceptance was not a straight line. I didn't want to do the work. I didn't want to see my disease. I struggled to redraw the boundaries of my life with my limited set of perceptions. I thought I was defective, a half-rated human body, and I clung to this belief like a pit bull.
* * *
A LOVE STORY ENDS IN AFRICA
When it came to the topic of love, for example, I was a complete disaster zone. How could I love when I'm disabled?
So, when I blundered into my college relationship with Abby Hoskins, I found out. I leapt in front of a semitruck (metaphorically). I figured what the hell. I'm a twenty-year-old kid. Seize the day. There she appeared: blond, blue-eyed, and bubbling over with life. I couldn't lose. My friends looked at me sideways every time I started raving about her. They mumbled into their coats, What's going on with Kyle? Dude's got tunnel vision.
Abby proved to be quite the bodyguard. She almost knocked out a guy at the next college party for insulting me. A romantic gesture — if you consider punching romantic — that initiated an unraveling of sorts, just as we were getting started.
We wandered through the party, a maze of dark hallways in the sprawling suburban home, college kids standing and leaning against walls, mad laughter, a classic college gathering in a red-plastic-cup-keg-in-the-backyard sort of way. Students littered the backyard with biting voices. Clusters of guys knocked back shots of tequila in the kitchen.
When we left, I grabbed Abby's hand and we stepped onto the front porch, where we squeezed past a tall, blond guy. The wind blew the scent of freshly cut grass into the open door. Just then, the blond guy called at Abby.
"You're going home with him? He walks like a faggot."
Abby stopped. For a split second she debated whether to let it go or react. She walked back up to the guy and he smiled. He probably thought, Hey, I got her attention. Maybe this is going to be good for me. So, he was caught off-guard when Abby's fist crashed into his jaw. He doubled over and grabbed his face, checking for blood and lost teeth.
Inside, I cheered. Here was a woman who not only stuck up for me, but also defended the honor of an entire demographic of individuals. Plus, seriously, who even uses that word? Bottom line: Her reaction was badass. Of course, in my typical self-destructive fashion, I seized upon the opportunity to feel sorry for myself.
It kicked in as I grabbed her hand and pulled her away, even while he was still hunched over.
"I don't need you to stick up for me," I blurted on the way up the driveway.
That wasn't what she expected.
"What the hell are you taking about?" she said, suddenly defensive. "There was so much wrong with that comment. What am I supposed to do?"
"Well, I could have handled it," I said. That wasn't true. I knew there was no way I could have handled it, but I wouldn't admit it. I would have made a fool of myself and gotten my ass beat.
I was pissed, but my real anger was about not being able to take care of myself. I felt like I needed to respond like a man, all macho. Instead, I was insecure.
I resented the fact that my girlfriend was doing the punching instead of me. I staggered toward home, heart pounding, fists clenched. The moment triggered a nerve. It introduced a buried notion that ate through the final months of our relationship.
No matter how much I tried to ignore my disease, it touched every aspect of my life. I couldn't separate myself. How could I embrace intimacy as an "impaired" man? Who says "forever" to a man in a wheelchair? How could a partner live with a dude who eventually won't be able to feed himself?
Considering those uncertainties, I struggled to lock in something that promised certainty. My pursuit of Abby was a sweet college crush, for sure, but during the process, I created a perfect set of working blinders. After all, I came to the relationship thinking that my disease was a flaw, and I couldn't remove myself from that perception.
That semester, Abby finished her final year of college. After graduation, she volunteered at an orphanage in Ghana, Africa, arranging her assignment through the humanitarian organization, Ananda Marga, which had established deep relationships with the communities in the North Tongu District in the Volta region. Abby wanted to become a positive force in the world, and this adventure was a first chance.
She had always talked about leaving. "It's going to suck when we have to break up," she said. I would get pissed off and frustrated and sulk around for a few days, but I supported her adventure. I thought of the scene in John Steinbeck's Of Mice and Men, where Lenny is holding onto the mouse — he doesn't want to let go, he loves it so much. He squeezes the mouse so hard that it dies. I was no Lenny and I wanted Abby to thrive, but I didn't really want to let go.
I couldn't stave off the inevitable, but I traveled to Africa to visit Abby for three weeks. She took time off from the orphanage in the capital city of Accra and we traveled into the countryside to visit the Mafi-Zongo Water Project, managed by Ananda Marga. They worked with local leaders to provide safe water to the outlying communities. As a young engineer-in-training, part of my focus was on water treatment, so I was interested.
We traveled with a monk who was dressed in bright orange robes. He had a long white beard, and impressed me with his careful vocabulary and thoughtful reflections. He also loved listening to Brittany Spears.
(Continues…)
Excerpted from "Shifting Into High Gear"
by .
Copyright © 2019 Kyle Bryant.
Excerpted by permission of Health Communications, Inc..
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