On Pins and Needles

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.