“Do you want to change a child’s life?” This title jumped out at me from a classified ad in my university’s newspaper that was seeking volunteers for a camp for children with special needs. I was intrigued at the notion of spending a week helping children with hemophilia and other bleeding disorders, especially as I was a college student with freedom in the summertime for such endeavors. Three months, one interview, and two orientation sessions later, I was having the time of my life.
As a kid I attended summer camp a few times. I have memories of canoes, crafts, archery, swimming, and field sports, but what was most memorable was goofing off with newly made friends in the cabin or on our way to the mess hall or our next scheduled activity. These are all the types of things that take place at camps for kids with special needs, but that interaction with peers becomes all the more important. For one week a year, kids with chronic conditions are no longer viewed as different or left on the sidelines, but instead are the norm. Kids can compare medications and treatments, be free of eyes staring at their scars, crutches, or wheelchairs (except when they are showing off by popping wheelies), and, most importantly, enjoy one another’s company without feeling like an outsider. In addition, the parents of kids with special needs are often, understandably, quite protective. While that intense love and attention is a mainstay for children while they are in hospitals or out of school, it can feel overbearing when parents are reluctant to allow their kids to participate in the activities their other friends are doing. A week in the company of enthusiastic volunteers, a medical team, and trained camp staff who not only allow these kids to ride horses, shoot arrows, paddle canoes, and go mountain biking but actually encourage them to do so can be a much-needed breath of fresh air. While I think camp is a great activity for all kids, I think it holds tremendous value for those dealing with chronic conditions.
As the classified ad promised, my first experience at a special needs camp was indeed life changing, but it was my life that was changed. I was so enthused by the spirit of community among the children and volunteers, and so humbled by the strength of children bearing great challenges with grace. I got hooked on camps, returning the following summer to the same camp as well as volunteering at another camp for children with HIV/AIDS. The third summer I was planning to attend both camps again, but these plans were derailed by rheumatoid arthritis. It was the summer before my diagnosis, and I was swollen, fatigued, in pain, and without any answers. My body just wasn’t up for the high level of activity and energy output that playing with kids and supervising them 24 hours a day for a week required. However, the summer after my diagnosis I was on Enbrel and ready to volunteer again. The next year it occurred to me that there must be camps for kids with Juvenile Rheumatoid Arthritis [JRA] as well, so I searched for one and discovered Camp FunRise. As familiar as I am with morning stiffness, I smiled as soon as I heard the name. After a phone interview with the director, I began making travel plans to attend. I ended up being a counselor at Camp FunRise for three summers, and again, it was life changing in all that I learned from the kids.
For instance, I discovered that children as young as two years old are diagnosed with JRA. After my own diagnosis of rheumatoid arthritis I did quite a bit of research on RA, but I had never taken the time to learn much about JRA. I hadn’t known that some parents first worry about their toddlers’ joints when they are struggling to learn to walk. The kids at camp were ages eight to twelve, but some of them had already been dealing with JRA for many years. There was one twelve year old camper whose JRA had relegated him to a wheelchair until the advent of Enbrel. It was hard for me to fathom that this active boy had until just a few years earlier been unable to walk, and I felt deeply grateful that I was diagnosed shortly after Enbrel came onto the market, rather than years before the existence of biologic drugs. While that boy was no longer in a wheelchair, there were a couple of other children who had to utilize them sporadically throughout the week. I marveled at how big these kids could smile and how loud they could laugh from the seat of a wheelchair. If you ever want to witness grit and perseverance, you should volunteer at a special needs camp.
Not only did all of the campers have JRA, but several of the other counselors had rheumatoid arthritis, so it was the first time I was around other adults living with the same disease I have. One of them had herself been diagnosed at two. She was the epitome of a person with an “invisible disability”: young, vibrant, beautiful, strong, yet she had struggled with an autoimmune condition almost her entire life. Being around her gave me hope, as she’d already had the disease for 20 years but was very active. Another counselor called herself “the bionic woman” because five of her joints had been replaced, the latest of which was her jaw. She had suffered unimaginable pain (her account of having a dislocated hip was devastating to listen to), yet she had one of the brightest smiles and sunniest dispositions of anyone I’d ever met. She had also managed, albeit with some difficulty, to have a successful teaching career.
She certainly taught me a lot, as did all of these children and counselors. The first few years after my diagnosis were confusing, depressing, and discombobulating. Learning that I had a degenerative autoimmune condition at the age of 22, I worried about what my adulthood would look like living with a disease. The people I met at Camp FunRise showed me that a life with RA did not need to be devoid of fulfillment, success, and activity. Rather, life could still be full of joy, friendship, celebration and fun. I was inspired in realizing that people much younger than myself dealt with RA with strength and humor. Likewise, I was inspired by people who had had the disease much longer than myself, some of them for decades, and continued to meet their challenges with fortitude. My experiences as a camp counselor did indeed change my life, and my experiences as a volunteer at Camp FunRise changed my life with RA.
When was your last flare?