That’s probably the reaction of most people when they first try the sport, as I was that spring day. But in my case there’s a twist: I have multiple sclerosis. MS is a chronic, progressive disease of the central nervous system common among young adults and affecting nearly 2.5 million people worldwide. It can affect everything from vision to muscle control. If the disease progresses, an MS patient can find it difficult to walk.
My journey into the world of MS started when I was 20, a junior in college. It came out of nowhere; I woke up one day and felt a tingling in my left foot. I expected it to fade away, but two hours later it was still there. The next day the same pins-and-needles sensation had spread along my left leg, and within a week the entire left side of my body had turned numb. So had half my face. At one point I held an ice cube in my hand until it melted completely. I felt no sensation whatsoever. I knew something was seriously wrong.
Our family physician ran some tests but ultimately detected nothing. My mother sought a second opinion from a neurologist, who subjected me to further tests, including an MRI and a spinal tap. Thanks to my mom, then, I learned I had MS. It was she who gave me the news. She came into my bedroom and took a deep breath. “That was the doctor,” she said, having just gotten off the phone. “You have multiple sclerosis.” She broke down crying, and so did I.
Those words left me dumbstruck. I had MS. Even though I’d heard of the condition I was naive about it. I had no idea how it progressed or what would happen to me, except that it was obviously nothing good. Would half my body go numb again? If so, how soon? I had an image in my head of people in wheelchairs. And for about 30 minutes I went into a flat-out panic.
Then I realized something. I could stare at the ceiling and feel like a victim, all “woe is me.” Or I could educate myself about my MS and try to take charge, face my fears head on and combat it. I had a choice. And I resolved to try to control the disease rather than let it control me.
My first step was to start treatment immediately with an interferon drug that I inject every other day. (Starting treatment after a first “attack” is important, as it may help delay disability.) Luckily, in the six years since I was diagnosed, the disease has progressed little. Every once in a while, especially when I’m tired, my fingertips will get tingly or my eye will twitch. Otherwise I’ve experienced no episodes anywhere near as severe as that first one. That’s promising news, because the first five years with MS often foreshadow the rest of your life.
As a result, nothing has held me back from living my life as I’ve wanted. I finished college. I started a band, as a singer and guitarist, and toured the country, playing concerts from coast to coast, and recorded two albums. More recently I started a job as a computer engineer for the U.S. Department of Defense, and I’m pursuing a master’s degree in engineering.
All along I stuck with my MS treatment. I’ve taken nothing for granted nor accepted any limits. I even got a tattoo on my right bicep that both expresses my overall attitude and serves as a reminder. It says, “Unbroken.”
Still, being an MS patient is no picnic. I’ve faced a certain stigma, for example. When I tell people about it, they automatically assume it’s a debilitating disease. A few years ago I came across a survey that showed how widespread such misconceptions can be. Half those surveyed believed MS to be fatal (usually untrue), and 40 percent said MS meant life consigned to a wheelchair (also usually untrue). Believe me, I get a special satisfaction from shattering that stereotype.
My parents deserve credit too. When I turned 21, for example, they gave me an unusual birthday gift: a scheduled trip to go skydiving. Yes, it’s true: my own parents wanted to mark this milestone by sending me out the door of a plane. They knew about both my aversion to heights and my need to conquer it. They wanted to challenge me and, in so doing, invited me to challenge myself.
At 12,000 feet I might well have frozen in place. But for me, a person with MS, staying put is never an option, and so out the door I jumped, right into the unknown. In a single, contradictory, altogether symbolic act, I sought both to let go of my need to control my life and also to maintain a grip on it.
The wind buffeted my face as the landscape below came closer. It dawned on me there was nothing I could do anymore. Either my parachute would open or not. The decision was largely out of my hands and nature would take its course. I accepted that now. I would just go along for the ride and enjoy the scenery. My free fall made me feel remarkably free.
The parachute opened fine, and down I floated to a safe landing. It was the best birthday gift ever. It just goes to show you that attitude is a muscle you should flex every day. That’s one reason why I still go climbing, too, despite my fear of heights. Whether it’s on cliffs, mountains or boulders, I’ve climbed roughly once a week since I started three years ago, and it’s taken me everywhere from Las Vegas to Italy and Switzerland. So far I’ve done all it without a wheelchair, walker or cane—in fact, without any hint of disability.
Here’s how I figure it: if I can defy gravity, I can defy this disease.