By age 12, I knew my life would be different (meaning excruciatingly challenging).
Up until that fateful February afternoon basketball practice, I was like any other 12-year-old girl: active, curious about life, into competitive sports (which, I learned, would get me chased by kiss-hungry boys during recess). Heck, I even choreographed dances with my little redheaded sister, Shannon, to songs by Janet Jackson and Celine Dion, moments to this day she cherishes as “traumatic.”
I was ordinary in most ways except one: I spent summers with my family traveling with a sort of wild circus. But instead of billowing tents filled with exotic animals being bossed by ring leaders, our circus consisted of sun-baked race tracks and highly competitive drivers topping speeds of 220 miles per hour. Coming from a racing family with a combined total of nine Indy 500 wins, I was exposed early to a professional sport in which fame, family, fortune and ravenous ambition come together — and sometimes collide — to create a well-oiled industry that keeps fans returning for more, united by a passion for fast wheels.
Little did I know I’d be destined for wheels of my own, but not of the race car variety.
I can’t tell you what I had for breakfast that morning, or in what order I put on my Catholic-school ensemble. Conversations with my friends escape me. The only thing that stands out is the moment my body was ripped from the path of a comfortable, predictable existence and into something full of dark doubts and overwhelming thoughts that I would never be good enough or amount to anything worth living for.
Basketball practice always entailed passing and dribbling drills. On this particular day, my coach decided to split us into two teams for a scrimmage. I was successful at stealing the ball, but just as I was about to dribble it to the other side of the court, I lost control of it. I couldn’t breathe. I immediately sat on the sidelines, trying to regain control of my breathing, when a massive migraine pounded my brain.
Everything happened so fast from there.
The school called 911.
I was carried to the locker room and placed on my back.
The pain was unbearable. I was screaming.
Terrified, I tried to move my leg. It wouldn’t obey. Still on my back, I attempted to hoist it up with my left hand. It fell down limply.
An ambulance rushed me to the hospital, where doctors couldn’t uncover anything to explain my episode. I was sent home with a diagnosis of dehydration. Still unable to walk, my grandpa Leonard carried me into the house and laid me in bed, where I couldn’t control my own legs, let alone urinate. I fell asleep hoping it was all a nightmare that would evaporate as quickly as the morning sweat on my forehead. It didn’t.
My parents were out of town, so my primary care physician came to evaluate me at the house after being called about my situation. After seeing how the paralysis had hijacked my lower body, she placed me in the bath, knowing that water can help trigger the brain to contract and relieve the bladder. Nothing happened. Instead, tears spilled from my eyes, when I realized I couldn’t feel the water — neither its texture nor temperature.
Back to the hospital I went, where after a week of tests, my fate was finally handed to me in two words: transverse myelitis.
TM, doctors explained, is a disorder in which the immune system attacks the spinal cord. In some but not all cases, the onset can happen within 24 to 48 hours of initial symptoms. The masterful cablelike system that allows the body to move and feel suddenly becomes hacked, powerless to stop the forces racing to injure it; a virus, in some cases, triggers the inflammation that wreaks havoc.
The first years I was paralyzed, I believed my life was over. Because the lower part of my body could no longer feel or function, I felt I would only get to experience things in half. From that point on, nothing would ever feel complete. Half a body equals half an experience. I never imagined, laying in my hospital bed, that I would be able to make the mistakes we all grow from; I thought my disability would blanket me from absolutely everything.
I sit here today a 28-year-old, single, stubbornly independent paraplegic woman, driven by a passion for helping others with disabilities reach unthinkable heights while provoking not only corporations but also the public to realize that we are a group worth investing in.
During the span of little more than a basketball practice, my life changed forever — an experience I can now say was the worst and the best thing that happened to me. With the help of my mother, Shelley, we turned a devastating diagnosis into a powerful, yet small nonprofit called the Cody Unser First Step Foundation, dedicated to shining a spotlight on TM and improving the quality of life of individuals with TM and other conditions that cause paralysis.
Like many women my age, I am learning how to balance my flirty personal life with my professional aspirations of profoundly impacting others through advocacy and awareness. Also like many women, I love jeweled accessories. I attend loud concerts, gossip with friends and hide my insecurities until the guy I’m kissing on my couch insists on knowing one of them, as if his sudden desire to get emotionally intimate will make me kiss him longer or possibly go further. I know what it’s like to make mistakes after a late night out drinking too much, and how obsessive we women can get over mistakes we think will forever define us.
As time goes by, I have found myself overcompensating for the things I don’t have. I think this is common among people who lose something; the need to do things your “normal” self would not do to make you feel human. This pursuit can be dangerous in the sense that when certain senses are blocked, you fight for a wholeness that will never be.
I don’t have all the answers. I’m not full of inspiring quotes that will make you gasp “aah,” as if you were perusing the card-packed aisle of a grocery store. I am just a woman full of frustrations and questions about not only life, but how to inspire change in a society that still imposes restrictions on people with disabilities, both real and perceived, despite our strong desire for greater freedom. For me, change started with accepting myself as the rejected body I wanted nothing to do with.
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My Race Isn’t Over: Still Defining My Disability originally appeared on usnews.com
