Camp Oasis is a week-long summer camp for child with Crohn’s disease and ulcerative colitis; 12 camps across the United States service 40 local-chapters of the Crohn’s & Colitis Foundation of America (CCFA). My experience with the camps are at the Pennsylvania location where I was a camper for eight years, and just this week wrapped up my fourth year as a volunteer counselor. More so than in years past, I was compelled to write about my experience after returning home from camp on Saturday. So here goes nothing.
My Story: A Brief Summary
I’ll tell my full story in a future blog post, but I was diagnosed with Crohn’s Disease in the fall of 2003. At 10 years old, it was quite an adjustment. As if the typical problems of a 4th-grader (i.e. play-dates, school crushes, etc.) weren’t enough I was given a whole new set of embarrassing things to deal with; frequent bathroom visits, near pants-shitting, medication side effects and lots of absences from school. I think one of the worst things was dealing with the side effects of Prednisone. While it’s an incredibly effective steroid that controlled most of my symptoms and helped me gain weight, it’s side effects were bad enough that I vowed to never take it again; most notable of which was “moon-face”. Google images provides some pretty startling before and after photos.
It was likely a CCFA mailing that introduced my parents to camp (then Camp Guts & Glory) and prompted them to register me for that summer (2004). Thanks in large part to Prednisone, my disease was somewhat under control when I attended camp for the first time. My memory of that first year of camp is simple — I hated it. Other than being an only child for the first eight years of my life, this was the first time I was ever away from home. Sure I had been to sleepovers, but my parents were right there if I needed them. They were two hours away. I cried, a lot. Not out in the open because that’s not cool, but when I was alone or under my covers at night.
When I got off the camp bus in NJ at the end of the week, I held my parents tight and told them I never wanted to go back to that place. Fast-forward to early 2005, around the time that camp applications were going out, I told my parents that I wanted to go back. To be honest, I’m not sure what prompted that decision; although, it likely had something to do with the fact we had good control over my disease and I was no longer on Prednisone. I mean, other than the body image issues specifically related to Prednisone, it really messed with my head. Let’s just say I was in a much better mental state. So, I returned to camp that summer. The rest, well, it’s history.
For the next seven years, that one week in August was the thing I looked forward to most all year. Forget my birthday or Christmas, I would have given it all up so that camp would come sooner. It seemed that nothing that happened throughout the year could beat those five days at camp. I mean, camp provided me with my first kiss, a pretty big deal when walking into 6th grade. But really, one of the greatest things camp provided me was perspective. Living with the disease was tough, but it wasn’t until I got to camp that I realized I actually had it easy. I met people who were dealing with things no one should have to deal with, especially a child. Surgically placed feeding tubes, daily tube feedings, missing colons and intestine, as well as pooping in a bag hanging out of their stomachs. These are just a few things campers, those living with inflammatory bowel disease (IBD) are dealing with.
The disease is so hard to treat because it’s not one size fits all. While one pill may make Johnny feel better, it may make Sally sicker. Peter may be able to enjoy spicy foods at the restaurant and popcorn at the movies, but give those to Paul and you’ll find him doubled over in excruciating pain. It was at camp that I saw the full spectrum, everything this terrible disease was capable of. It was most likely my experiences at camp that fostered my “it could always be worse” mentality. But that’s not all it fostered. It fostered life-long friendships. I found a family in these people, at this little camp in Pennsylvania. This year, my fourth as a counselor, I realized the profound impact camp has on a camper more so than any year before.
Camp Oasis: The Light
There’s a piece of the camp literature that I always found to be a bit over the top, especially as a camper.
A Life Changing Experience
Since all of the campers (and many of the adults) at Camp Oasis are living with IBD, our supportive community allows them to:
- See that they are not alone
- Try all sorts of new sports and activities
- Create friendships with people who truly understand them
- Gain confidence and independence
- Put aside their troubles, and just be a kid
Do you see what I’m saying? I don’t know how to really explain it, especially because that was the message I always relayed to family and friends about camp. It just seemed like it was trying too hard, I guess.
At any rate, it was something a camper said to me at a meal halfway through the week that caught me completely off-guard and really got me thinking. He said:
“I’m nothing like this at home. I’m pretty quiet and shy…”
Now, I know that might not seem like much, but let me tell you something about this kid. He stands tall, not because he is tall, but because he’s working with the perfect combination of cocky and confidence. Younger campers look up to him and if the attention he receives from the ladies is any indication, he’s not so bad on the eyes. So again, I was so surprised by his comment. How was it that at home he was nothing like the kid that sat in front of me?
I began to reflect further on my own experience. I always attributed camp and the disease to the person I am today. Struggling with the disease, overcoming adversity…. BLAH, BLAH, BLAH. Sure it was true and it definitely makes for a good college essay; you’ve got to play the cards you were dealt, right? For me though, I guess there were always distinguishable character traits. The person I was at camp was the person I was at home. But no, something was different. Confidence, or lack thereof. That was it. I don’t want to blow my own horn, but I was kinda cool at camp. Not that I wasn’t at home. At home, in school, I feel like I was free to roam through any particular group. It wasn’t distinguishable though, I didn’t have a clear place. At camp though, it was crystal clear. It was like I stepped off the bus each year and picked up some confidence that dropped out of someone’s bag, I got a huge confidence boost.
That extra confidence helped me to kiss the girl and talk to people I didn’t know, maybe someone I perceived to be the “cool kid.” I didn’t know it then, but this extra confidence I found at camp allowed others to perceive me as the “cool kid.” Each year after camp I brought more of that confidence home with me, until I brought home all that was available. I began to use this “camp-confidence” more outside of camp, until it one day became just plain old “confidence.” This final transition probably occurred around the time I was 18 or 19, which is when I finally ditched the rash guard I wore whenever I went swimming…. Through the majority of my childhood I dealt with crazy body image issues as a result of the disease making me too skinny/underweight.
You can see instances of this confidence-struggle everywhere at camp, most especially in new campers. Take the camper with a feeding tube in his stomach. He lies in bed while all the other kids are being social and playing around outside. It’s nighttime, so I ask him if he’s tired. He tells me he’s not. I ask him if he wants to go hang out with the other kids. He says he’s comfortable in his bed. I then remind him — it’s not like nobody out there has never seen a kid with a tube hanging out of his stomach, connected to a machine in his backpack…. He looks at me perplexed. Then something clicks. He smiles, puts his shoes on and goes out with the others.
That’s it, it’s real. I was always very open about my disease, while many, especially young kids and teenagers are not. I could tell people that I wasn’t feeling well or that I was in pain, but I was also good at hiding it. It’s one of those things that you can’t fully understand without experiencing it for yourself. At camp, everyone knows. The embarrassing symptoms you hide from your friends at home, you can laugh about with your camp-friends. Those annoying pills you have to take everyday or the last surgery you had, everyone at camp is eager to compare and contrast. Poop. It’s a focal point of the disease, but nobody want’s to talk about it, right? Wrong! At camp, we have entire conversations about poop. Maybe you can even find a good poop pick-up line to ask a girl to the dance. I mean, come on… Where else could actual SHIT, get you a girl?
Camper (4 of 121) Facebook Posts:
Camp Oasis is so many things to so many people. First and foremost, it’s a light. It’s a light in a pitch black room…
You’re alone in the dark. You can’t see anything, you can’t see yourself. Then, all of a sudden, you find a light. You turn it on and you’re surprised to see that you’re not alone. As you walk about, you come upon a mirror. For the first time ever, you can see yourself. You’re not what you imagined. You’re beautiful, you’re strong and you’re happy. Everyone can see you now.
– Michael Sharkey
A Counselors Dilemma
It’s much easier for a college student to volunteer a week of their time in the summer than it is for a working adult. I recognized that the very first year I returned to Camp Oasis as a counselor. Even those “adults” that return year after year, happily using their vacation time to volunteer, sometimes find that life gets in the way of them returning to camp. Sometimes it’s organization bullshit (I’m looking at you, Rich Geswell; CCFA, President & CEO) or problems on the ground throughout the week at camp, that make returning the following year seem like less of a priority. But then you think about the kids.
As a councilor, you’re there to facilitate that transition. Quite possibly the most important transition of their lives; that of who a camper is at camp to who they are on the outside. You can see it in a new camper every time, without fail. They arrive to camp as they were on the outside; quiet, scared and afraid to show the world who they really are. Each day you see more of them as they put down their walls. By the last day, forget about it. They’re all over the place and part of you, just a little piece, misses the quiet and shy camper you met on Day 1.
I was lucky in that I got to see my first group of campers all the way through to their last year. This year I somehow ended up with the second oldest group of boys, so I’m optimistic that I’ll see them off next year. But then what? My first year back as a counselor I became attached to a group of young boys. I’ve said it for the last three years — that at the very least, I’d like to be around to see them through to their last year. So that’s 3-4 years away. Ok, I have a problem though.
This year I met a cabin of girls, the youngest at camp. I fell in love. I have a fan club in them, I won’t deny the fact I loved that. They’re also the same age I was when I was first diagnosed, 10. So when they run up and give me a hug on the last day of camp, asking whether or not they’d see me next year. Who the hell am I to say, “no?” Of course I’ll be back next year! But what about after that? They’ll be finished in 7 years. Yikes, ok. So I only need to go back for another seven years. If only it were that easy. If I found those girls this year; surely, I’ll become attached to the next group of campers that roll in. And the next, and the next, and the next… It’s an endless cycle, I’m trapped.
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”In Memory of Zack Seigel — Donate to Camp