I spent my first week at summer camp in inconsolable tears. I was a young girl just diagnosed with type 1 diabetes. My parents shipped me off to summer camp. It was their solution for helping me deal with my disease. I cried morning, noon, and night. My two counselors were desperate to halt my hysterical tears, but there was no consoling my nine-year-old mind. I was shuffled from counselor to counselor, from nurse to nurse, more so as a respite for them than attempts to end my tears. I was miserably unhappy and homesick, bound to turn diabetes camp into the worst experience of my life.
In my mind, my miserable camp experience was all my parents' fault. How dare they leave me to the throws of two inexperienced counselors in the wilds of the woods at an unfamiliar place with other kids with diabetes? How dare they separate me from my friends and family for a week? How dare they force me to bond with strangers to whom I felt I could not relate—even on the smallest level? How dare they send me to a place where no one knew my routine of taking shots, or my method of checking blood sugars, or my way of eating according to my meal plan? Worst of all, how dare my parents, after that first miserable week at diabetes summer camp, force me to go back a second year?
Twenty years later, I am now the director of programs for a nine-week summer camp for children, teens, and families affected by type 1 diabetes. That is the story I tell when nervous parents call my office to talk to me about prospectively sending their child to summer camp for the first time. I tell that same story on opening day as anxious parents drop off their children to camp. For some of the parents, it will be their first time in years turning their child with diabetes over into someone else's care.
In chatting with parents, I tell them how grateful I am that my parents had the courage to rage against my stubborn attitude—and dare to push me towards the diabetes summer camp experience, not just once, but again and again. I am amazed that, although not "camp people," my parents somehow understood the benefits of the independent camp experience for me as a young girl with a chronic disease. They understood the significant impact and power that camp had in bringing together a group of girls affected by diabetes into an environment that promoted growth, interdependence, independence, health, and new knowledge.
The importance of the summer camp experience for children with diabetes, or any chronic condition, cannot be understated. As a director of programs of a type 1 diabetes camp, I see daily the power that camp can have in really changing the lives of children and families that struggle with the condition.
I hear so often from the campers "no one else gets it." "Gets what?" I respond, secretly knowing the answer. "Gets how I feel when I'm low, or high, or when I have to do a shot, and I don't want to. Or gets what it's like having to eat in class when no one else is allowed, or when I'm not allowed to eat in class because I'm low, or when I have to go to the nurse's office just to take my insulin. Or gets what it's like to wear an insulin pump, or what it's like to have to deal with questions every day, or what it's like when someone tells you that you shouldn't be eating that because it has sugar in it."
The list goes on and on. "No one else gets what it's like." And the truth is, no one else does get it outside an environment where so many people have "it." At no other place but summer camp for kids with chronic conditions like diabetes can someone utter, "I'm low" or "I'm high," or "I hate being attached to this tube sometimes"—and immediately ten, twenty, thirty people around inherently understand what those words mean. At no other place can a child utter, "I hate this disease," or "I feel ugly because I have to wear this pump and I have needle marks,"—and there is immediate help, advice, empathy, support, and understanding—right then and there from people who also have felt just that way.
Staff at camp "get it" because most of them "have it," or have lived so much in "it" that they understand "it." By being in an environment where people just "get it" without having to explain, campers are offered a new support seldom felt elsewhere—a new sense of belonging and a silent connection with others that is rarely reached in any other environment. With an unwritten understanding comes friendship—and friendship lies deep between those with diabetes. For many, camp is the first time that they can breathe a deep sigh of relief and enjoy the respite from trying to and needing to explain.
It's a beautiful thing to watch campers pick up new knowledge at summer camp, knowledge that can help them manage their disease better. It is wonderful when a camper comes to camp and does her first independent injection because all of her friends are doing theirs and someone has taken the time to show her how. It is so moving to watch a girl choose a new finger to poke with a sharp, because her best camp friend is doing it, or to watch a camper finally learn how to use an insulin pump because a staff, wearing a pump, is taking the time to teach her how to press the right buttons.
Campers at diabetes camp are inherently immersed in knowledge sharing and information. The environment is conducive to sharing, and it is unavoidable. Kids inevitably learn new skills by watching their fellow campers and staff, and by being gently encouraged to try new things—whether it is giving a needle, doing a finger poke, jumping in the lake, or going on a five-day backpacking trip. I cannot count how many children come to camp and achieve "firsts" because of the support. At diabetes camp, those "firsts" open up doors that have sometimes been locked for years. A first shot means that a child and her family can now begin to consider sending that camper to her grandparent's for a sleepover. A first finger poke in a new finger means that a parent doesn't have to worry as much about nerve damage in his child's single finger that has been repeatedly poked again and again. A first conversation about drugs and alcohol, and all the challenges faced in the real world, means that campers are leaving us a little bit more knowledgeable about their disease—and a little bit more empowered to make the right decisions that will promote their health when the time comes.
Not only do kids learn to take better care of themselves—and are inspired to do so knowing there is a whole community out there struggling with growing up just like they are—they gain new knowledge that can be used to better their own care.
Laughing at It
I was sitting in the audience at our variety show last summer during a family camp session when a family got up, their youngest child with diabetes, and proceeded to do a skit about an "Insulin Shop." The crowd responded with laughs of hysteria. At diabetes camp, we frequently have visitors from "The Incredible Humalog" (The Incredible Hulk), "Insulina Jones" (Indiana Jones), "The Insulin Fairy," "Super Syringe," and "The Bolus Wizard." We share funny diabetes stories and tell diabetes jokes—making light of a sometimes serious and frightening disease.
We teach parents and campers that it is okay to laugh sometimes about their condition, even through the most challenging of periods. Campers begin to laugh and share the lighter side of a chronic condition. The laughter often spreads to even the saddest of people. Campers learn that sometimes it is okay to laugh, and that they are capable of making that laughter happen. This laughter leads to confidence, confidence leads to coping, coping to thriving, and thriving to living life.
As miserable as I may have been that first summer, how grateful I am now—as a healthy, confident woman with diabetes—that my parents decided to send me to summer camp. As much as I pushed against it, they pushed back, and thankfully, they won. I am convinced that in that first summer they must have seen a little glimmer in my saddened eyes that told them that I would eventually fall in love with the camp and everything about the camp experience. Camp for children affected by chronic illness has changed so many lives, mine included. This is just one of many cases in which I utter those dreaded words that all of us hate to utter, "My parents were right." And how right they were!
The Diabetic Youth Foundation's Bearskin Meadow Camp (www.dyf.org ) is in its 70th summer of operation, founded not long after the discovery of life-saving insulin. The residential summer camp is located in the Sequoia National Forest, California, at an elevation of 5,800 feet. Over the course of the summer, it serves 850 children, teens, and families affected by type 1 diabetes, and the camp serves another 800 affected by diabetes during its year-round programs.
Janet Kramschuster, C.T.R.S., director of programs for the Diabetic Youth Foundation, operators of Bearskin Meadow Camp, has attended and worked at residential diabetes camps for the past twenty years in Nova Scotia, Massachusetts, and now California. Kramschuster is a certified recreation therapist and is pursuing her master's of science in recreation and leisure studies.
This article was originally published in the Winter 2005 issue of Bear Facts (Vol. 4, Issue 1), a newsletter published by Bearskin Meadow Camp.
Originally published in the 2007 July/August issue of Camping Magazine.