Why I'm Grateful Paul Newman Created the Hole in the Wall Gang Camp

I belt show tunes at the top of my lungs as we drive along a long, winding, wooded road. There is excitement in the air and joy in my heart, and I know I am about to have the best week of my life. I’m headed to a magical place where sadness is trumped by love and “no” is a word sparingly used.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I’m going to camp.

Now this camp is no ordinary summer camp. The story of the camp is not ordinary. The staff is not ordinary. The counselors are not ordinary. The campers are not ordinary. The magic at camp is not ordinary. Every single person and aspect of the Hole In The Wall Gang Camp is extraordinary.

At this camp, I’m also a singer, ukulele player, artist, writer and possibly the biggest “Hamilton” fan you will ever meet. I’m also living with Ehlers-Danlos syndrome (EDS) and many of its comorbidities. The list of medicine, infusions and various medical care I need on a daily basis is long enough to intimidate most experienced doctors and nurses. And for that reason, it’s difficult to attend most ordinary camps, which is why I’m a part of the Hole in the Wall Gang Camp.

In 1996, Paul Newman, the world famous actor, race car driver and all around incredible person, had a simple yet transformative idea. He envisioned a place where every child, regardless of their medical conditions, could have the experience of going to camp. He wanted every child to be able to let loose, meet other kids like them and raise a little hell. In 1998, after two years of hard work, imagination and determination, this camp was born. And the rest is history.

Fast forward 18 years. It’s June 17th, 2016, 10:05 a.m. Our white van, filled to the brim with boxes of life sustaining equipment (and my ukulele, I can’t forget my ukulele), makes a sharp left turn off of a long wooded road. The only thing marking this important turn is the carved wooden sign stretched between the trees. We pull in, crossing the dirt dam at the edge of the lake, and I know I am home.

Familiar faces greet us with lit smiles and wide eyes that hold more than words can accommodate. “We’ve got a camper.” And with the affirmative “Bring ‘em down” on the walkie talkie, we drive to admin. More faces greet us at the administration building. Hugs and smiles and more hugs are followed by helping hands ready to carry my bags. There are three categories for where my bags need to go.

1. The cabin where I sleep. This is my blue duffel bag, one backpack and a pillow.

2. The infirmary. This includes three large cardboard insulated boxes filled with seven days worth of life sustaining IV bags, and one more gigantic cardboard box for all of my supplies and medications. (Otherwise known as the things taking up all the space in our van. But it’s vital to me being alive, so I guess it’s fine.)

3. Stays with me. This third section contains two things. The bag I’m attached to currently keeping me alive, and my ukulele. Like I said, I can’t forget my ukulele.

As we walk into the infirmary, the paint on the mural surrounding me depicts the magic that happens at camp.

And the people around me? Well, they are the magic.

We get settled and organize my things with my nurses. I’m in the red unit this year. As my mom and I go through each medicine and procedure I need while I’m at camp, I’m surrounded by more red trinkets and decorations than I’ve ever seen in my life. Well actually that’s a lie, I got to look at equally as many green things in the green unit’s room last summer. But you get the point.

I meet with this summer’s dietitian. (Only the cool camps have dietitians, am I right?) We go over my oral diet: If it can drain out of the tiny plastic tube in my stomach, I can eat it. If it can’t? Nope. My diet this week (and every other week) consists of chocolate frosting, mashed potatoes drowned in gravy, water, hard candy, popsicles, chocolate milk, juice and frozen Gatorade. Yum. The wind blows in my hair as we ride away from the infirmary and to cabin circle in a golf cart. There is no need for wheelchairs at camp when we have golf carts that can seat a whole cabin of campers.

Blue, yellow, red, purple, green. Each unit is tucked into a nook of trees. They contain three cabins, each cabin with eight campers and five counselors. These cabins hold so much more than people. They hold friendship. They hold laughter. They hold tears, and the most precious memories of countless campers and counselors alike. Most importantly, they hold the feeling of inclusiveness and love that you feel knowing you are surrounded by people who understand you.

Camp is the only place I know besides the hospital where you are surrounded by people who don’t think it’s weird to have the long, protruding line up your neck where your central line is, or to have to take handfuls of meds multiple times a day. Need to eat through a tube in your stomach or your heart? No biggie. Because each and every camper knows their life is a precious gift that has to be fought for. We all know our lives cannot be taken for granted and often do not go the way we planned, but are still amazing and beautiful.

Many of the counselors and staff know this to be true as well. Some of my favorite people at camp are the camper turned counselors, and this summer I got to meet the first camper turned nurse. Seeing people like you be a part of camp their whole life is a feeling you can only understand at camp. You see people like you thrive and not just survive.

In the center of it all at camp, there is a flagpole that proudly flies the camp flag. At the first night of each session, camp has a unit fire drill contest that ends with raising the flag. As it is raised, we sing one of my favorite camp songs that shows the understanding and connection each camper, counselor, and every single member of the Hole in the Wall Gang Camp has:

“This joy that I have,
the world didn’t give it to me.
The world didn’t give it,
the world can’t take it away.”