Giving of Oneself at CFRI Summer Camp

by Bob Wright, a 30 year old adult who has cystic fibrosis

Fall 1994

It's twenty some odd years ago. I'm at a summer camp for kids with cystic fibrosis. Most of us are pale and skinny, not having many opportunities to play outdoor sports like "healthy" kids. We look around for kids we know, kids we have met in the hospital or at camp last year. We do crafts, eat camp food, ham it up in skits around the camp fire. We have Summer Camp Olympics where everyone gets to participate, regardless of health. And where everyone wins at least once.

Our counselors, one to a kid, are mostly college students. They have excitement and energy. They encourage the frail and the shy to try new activities and then hug them when they do. They tell us stories as we crawl into our sleeping bags and wake us up with orange juice and laughter. Once the morning therapy is over, we run from one activity to another, bonding with other kids who look just like us. Time flies. Soon the week of camp is through and we're on the bus, sniffling quietly as we leave our new-found "family" behind and go home to a family that doesn't quite seem the same. Years go by and the memories we made as kids stay with us like pictures in a scrap book, faded but profound.

Now it's twenty years later and I receive a package in the mail. It is an application to attend this year's CF Summer Camp. As I open the envelope, my mind goes back in time and I feel the sunshine and smell the green grass. I can see the faces of many friends I made at summer camp when I was young. Suddenly, I feel a certain reluctance to go back. Since I'm an adult, camp is no longer a vacation away from parents and daily routines. I will no longer run wild with a counselor chasing me around the old buildings and trees. It will never be the same.

I will be asked to organize some of the events I used to be mesmerized by. Much of the magic gives way to behind-the-scenes work. But as I grimace over the work to be done, I also realize that there is a part of summer camp I alone can make happen. There is a role I alone can play. With a disease that often kills its victims young, few adults with cystic fibrosis are around to be able to go to summer camps. And the ones that are healthy often don't choose to go to summer camps for kids. They are busy with their lives, making the most of what is usually a fleeting life. There isn't time for holding the hands of someone else with CF. They are busy holding the hands of spouses and family members who are reluctant to let them go. I feel for what they must go through. And I know that if I were sick and dying, I would feel little call to go to a summer camp and watch the kids play like I would like to. But miraculously, even though I have CF, I am healthy enough to work, play and take vacations like everyone else. So summer camp is more than just organizing and working. It is an opportunity for me to make contact with a whole new generation of kids with CF, some of whom will grow up and live to be healthy adults. I am the link to their future as they are the link to my past.

My decision made, I fill out the forms and send in the envelope. I make calls and start to borrow books from the library about skits, jokes and field games for all ages. But as I do the work of helping to put on summer camp, I keep in mind the image of what an adult with CF must look like to those who are adjusting to the fact that they have a fatal disease. And the real magic of summer camp dawns on me; it's the gift of being healthy enough to give myself away.

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