Editor’s note: Jeffrey Campbell has been a JDMS patient since 1972.
Sometimes your goals can’t easily be measured by simply a time or place. Sometimes, just completing what you set out to do is reason enough to continue. In hindsight I can’t even tell you how I finished the race…just that I finished. It was simply another step in my journey of coping with juvenile dermatomyositis and learning how to work with the gifts God left me.
My story is the same as the stories of many children with JDMS, with one slight twist. In 1972, when I was three, my pediatrician was able to diagnose my condition on the first visit and rush me to Chicago to start treatment. Prednisone was the treatment used and its side effects were many. Calcium deposits, arthritis, cataracts, and thinning skin all remind me of my condition every time I wake up; yet they don’t stop me from getting dressed, going to work, and training for my next race. What made the biggest impact was how Dr. Lauren Pachman allowed and encouraged my parents to make sure I was involved with sports and exercise. The irony is that I may not have even seen Dr. Pachman had it not been for the advice of a visiting nurse during a trip for treatment.
The nurse had heard of Dr. Pachman and pulled my parents aside. She said if I were “her kid” she’d make sure I became one of Dr. Pachman’s patients. One year later, I began seeing Dr. Pachman and saw her until I finished college in 1991. There were countless trips from my Indiana home through rain and snow. During it all, she focused on my quality of life as I continued to improve. Baseball, swimming lessons, and physical therapy were all part of my routine until high school, when I took up tennis. Two years later I made varsity, and fell in love with the idea of pushing myself to each new level. It was then that I started my “things-to-do list”. I still have the list today and continue to actively pursue new challenges.
College was an exciting time, not only because I was on my own for the first time but also because I learned more about what my body could and could not handle. I also learned about the value of money and pursued scholarships. Because I was a good student, I was able to get sizeable grants, scholarship money and loans.
Now, at age 34, I look for new challenges. My condition has stabilized over the last ten or so years and I am medication-free. I am actively employed at the JCPenney corporate office in Plano, TX and plan to attend graduate school this year in pursuit of my MBA. While my muscle enzyme tests are still above “normal”, they are very stable. My body has learned to adapt and allowed me to complete the Chicago Marathon in 1998 and my first Sprint Triathlon in 2002. Every day brings a new opportunity and a chance to cross one more goal off my list, and I feel that new treatments and research have made the condition more bearable. While nobody knows what the future holds, I still go back to a fortune cookie I received last year which read: “It’s not the destination, but the journey that counts.”
Scholarships for JM patients
One grant I received was from the State of Indiana through its vocational rehabilitation program. It provided a sum of money each semester plus an additional amount for books. The amount granted was based on the school and student need. My high school guidance counselor told our family about the program. I met with the representative each semester to discuss grades, make sure I was still on schedule with classes and not falling behind, and to discuss career options.
There are a few things from my experience that I can offer as advice:
- Each student must actively ask about potential scholarships for students with disabilities. As a student, I didn’t like to think of myself as disabled. My doctor and counselor filled out forms, explaining the condition and how it affected my normal daily functioning. My parents’ income had to meet the “student need” requirements as defined by the financial aid department of the university and the State of Indiana. Today, students can find out about these programs more easily by researching available scholarships through the Internet. Most states have a Vocational Rehabilitation Department, and you’ll find the list at: http://www.parac.org/svrp.html.
- Colleges and universities now have scholarship information listed on their school Internet sites. One university in particular, The University of Tennessee, has an entire site devoted to students with disabilities and what it can offer. It also has scholarship information categorized by disability. The link to that site is: http://ods.utk.edu/scholarships.html.
Students should discuss their situation with college or university financial aid offices. These offices can offer invaluable advice on what scholarships may be offered for incoming students and what services are available (wheelchair accessibility, note-taking services, etc.).
College should be a rewarding experience where kids with myositis can both learn from and interact with diverse people. It helped me grow as a person and taught me life lessons I could never replace. Mostly, it taught me an independence that I believe everyone struggling with this condition strives for.