My Journey

     Before the doctor even said a word, I knew.

On a Friday in the spring of 1998, he walked into the exam room with that “this-is-not-good, so-prepare-for-the-worst” look.

We’ve gone over the results again, and you’ve contracted it,” he said. My mind went blank. I swear even the ticking of the yellow clock on the wall ceased for what seemed a lifetime. I couldn’t breathe, couldn’t think, couldn’t register anything else that he said. I couldn’t even pronounce this thing that I had, but I knew that moment was the beginning of a long, painful journey.

I was diagnosed with Juvenile Dermatomyositis (JDM), a disease where the immune system attacks the skin and muscle cells. If untreated, it can shut down more important muscle systems, including the heart and lungs. It is a little-known disease and affects only about three children per million. I was diagnosed only six months after first showing symptoms so I was still able to walk and my major muscles were still functioning when I began treatment.

Immediately after my diagnosis, I was put on three powerful medications (prednisone, methotrexate and quinacrine). While they helped control the disease, the side effects were not pleasant - I gained a lot of weight, got a reddish-purple rash on my face, and was always tired. I was on these drugs, and others, for the next five years. I would slowly be weaned from them, but then have to go back on, over and over.

That Friday I became a science experiment. Every week, I’d go for a check-up and every week, a new batch of medical students would be there to study my rash, take pictures, test my strength, and ask questions about every aspect of my life. I got so sick of being studied, analyzed, questioned, poked and prodded that I just wanted it all to stop. Instead, things went downhill. Two years after I was diagnosed, the JDM got worse and I was hospitalized and pumped full of every drug they could think of (or so it seemed). After a week I was sent home to rebuild my life again.

My life was shattered with my diagnosis, and any hope of a normal childhood was dashed. I was forced to grow up in the span of months, not years. I didn’t get to run around, ride my bike, or learn to rollerblade - my muscles were too weak. I couldn’t go many places for fear that my weakened immune system couldn’t fight off infection.

I lost most of my friends; for five years, there were only three people who consistently talked to me in school. Emotionally, I had more complex feelings than any eight-year-old should have to deal with: constant terror of a relapse, anxiety about taking the right meds at the right time, and near-depression at being shunned by those who months earlier had called me their “best friend.” My life felt like hell on earth for five years.

That Friday, March 6, 1998, I became a new person. Having had to deal with those issues, those worries, I found a strength within myself to carry on. I faced each day with determination that no matter how hard it was, I would make it through. I lived that way for five years, not looking toward any kind of future. Now, eight years later, I can remember and say that I made it through, I am in remission. Now, those five years are part of my past, and I don’t think I’d want to change any of it. That Friday, March 6, 1998, will forever be the most important day in my life.