In the middle of Rhode Island is a place where teenagers who have MS (Multiple Sclerosis) gather for 5 days each summer. They travel from all over the US, Canada and even sometimes farther to greet old friends and make new ones. Some of them have just been diagnosed and do not know anyone with MS, let alone a fellow teenager. In five days they go from being strangers to being family. At MS camp not having MS is belonging to the minority.
In some ways it is normal summer camp, the teens kayak, do a ropes course and tell stories while roasting marshmallows around a campfire but in other ways it is so much more. The teens are able to talk about dating with MS, when to disclose their illness to friends, how to manage meds away from home, etc. They watch each other do medication injections and swap stories of diagnosis, spinal taps, countless MRIs and commiserate on how much they hate taking steroids for relapses. They talk about hospitalizations and how they were diagnosed, everyone compares symptoms and they soon realize that someone else truly gets what they are going through. MS is a greater bond than anything else. The pretty cheerleader from Colorado jokes with the awkward guy who bowls and loves to fish from Florida. Together they help another camper with his dinner tray, as MS has left him spastic with a noticeable tremor. Over dinner they look like normal teenagers, texting jokes to the far end of the table and trading SillyBanz (TM) bracelets.
Camp inspires me. For five days I belong to a community with these teens. Many of them have dealt with more medicine than adults two and three times their age. As a group these teenagers have a maturity that comes with having to shoulder a chronic illness. Before medical school when I shadowed MS clinic I would see these teens in the context of their neuro exams and symptoms. I was privileged to be able to look at MRIs and be present as they were given the diagnosis. I was there with some during neurocognitive testing and I got to know each better during the three hour test battery but only at camp did I have the opportunity to really spend time talking to these amazing teens about their lives.
Camp is transforming. A previous patient is now appreciated for his acting skills and silly jokes along with his fear of another relapse and the belief that maybe if he just forgets he has MS, it will go away. David doesn't skip his meds because the shot is all that horrible but more because by taking it, he reminds himself of his vulnerability and like all teenagers he thinks nothing will ever happen to him, except that it already did... (But he is still persevering, so this life lessons has been learned. Camp ends and David resumes his DMTs with the encouragement of the other campers. Camp success story #223.) Alisha plays soccer and tells the other campers of having to learn how to walk again and how horrible it was to miss her own HS graduation because she was in the hospital with a relapse. But then she talks about how she got a phone call from another camper and how much that cheered her, she reminds the campers that they need to keep in touch throughout the year, how sometimes that text, Facebook message or phone call can mean the world.
I have been honored to attend and inspired by MS Camp for the past five years. This summer I will be in my third year of medical school and busy with clinical rotations so unless I can arrange to have camp week off I won't make it. But 40+ campers will and once again they will find themselves in the middle of their MS Family in the Best Place on Earth.
In case you need more inspiration. See the video below. It is a little dated, as it was filmed during my first ever camp five years ago, but I think these teens tell it better than I can.
Update. Recent Facebook activity.
Alisha to David- "Camp 2011 :)"
David to Alisha- "I can't wait, best place on earth!"
13 Likes. 2 Comments.
Link to old photo album titled- Camp is Love.
***Names, details, identifying data changed, etc. Video filmed and posted to You Tube with permission.