July 4, 2013 by firstname.lastname@example.org
I’ve been off the radar this past while because I went to camp. Up in the Northern Minnesota Pines, one does not have much time or energy for blogging. Last week, was thrilling, terrible, difficult, challenging, and mind-blowingly rewarding all at once. I’m not going to say what camp I was at, or give names, in part to keep some privacy of our shared week, and in part because I want you all to relate to my experience a little more. It was a camp for kids like me is all I’m going to say. Oh yeah, and I was a camper myself as a kid. I decided to write this piece as a letter.
Dear Mom and Dad,
I just got home from the airport and I have to say, camp has thoroughly kicked my ass. I am so tired that the floor is moving in a sludgy, jello-like fashion. The lights are fuzzy. I’m so tired, that I’m not even tired. If only I could stop singing that song about the llamas. But I’m on autopilot for all things camp and re-assimilation to mainstream life is going to take a few days.
Camp knocked me down. It wore me out not just physically but emotionally. But I got back up and fought back and I think you’d be proud of me. And in the end, I grew more as a person in only four days than I even knew was possible for one’s character development. Allow me to start at the beginning.
Mom and Dad, was I ever that hard to manage as a 14 year old? Please say I wasn’t. Oh please god, say I wasn’t. It was my first round of dread to find out that I had the oldest girls at camp. I braced for impact of the onslaught of whining, drama, and total apathy toward activities that were designed for a much younger age demographic. I looked on in envy as the counselors during orientation made their nametags for their itty-bitty baby campers, who would be adorable and easily entertained.
The first night our girls arrived off the bus with tepid smiles, shuffling awkwardly from one foot to another as we waved and screamed like Group 1 cheerleaders on uppers, I knew it was going to be a long week. After introductions were made and campers were all checked in, we headed back to the cabin. The group dynamic, like an amorphous social blob, molded and shaped itself beyond any of our own control within hours. A clique had blossomed with a clearly defined leader and a clearly defined out-group. This is particularly frustrating as a staff member to helplessly witness when the point of camp is to provide a safe space of acceptance that these kids just don’t find at home. But even at a camp for kids like me, kids are still kids, and they don’t live in a vacuum just because they’re in the Minnesota boondocks. That was harsh lesson #1.
Mom and Dad, how did you keep up? Harsh lesson #2 was coming smack in the face with my own physical limitations. Just how quickly I became worn ragged was evident from the nightly appearance of a migraine onset. Side-note, I only get them 1-2 times a month in my natural habitat. Camp, this almost mystical place that was all my own for all those years growing up, stayed exactly the same. I was so different. I could feel it, my age weighing on me, even though I’m only 22.
Going to camp was like going from 0-60 in 3.2 seconds. My rather comfortable, quiet, sedentary lifestyle I had grown accustomed to from working at home was blown to smithereens. I was up at 6:30 every morning to get my bandages taken care of before morning activities (with the help of two very patient, good-sported volunteers). Following a four-activity morning rotation was lunch, where the tag-line should have been “eat it and beat it” for the amount of time we had to scarf down whatever appeared at the kitchen window. It doesn’t help that my EB makes me a naturally snail-paced eater. Then came rest hour (Blessed res hour!), afternoon down by the lake, dinner, evening theme night, cabin closing, and bed.
My lack of energy was a constant source of frustration. The smiley-bubbly, dive-right-in, up-and-at-em counselor I imagined myself to be turned out to be my co-counselors. Granted, I had a few more physical hurdles to jump through but I just couldn’t keep up, and at times I felt like I was failing my girls. I didn’t have the energy to stay up at night with my fellow staffers, which only made me feel like more of an outsider than I already was after having taken three summers off. Being a counselor is just plain hard. At it was like a sock right to the ol’ self-esteem when I felt like I was on the brink of not being able to handle it. Being mistaken for a camper left and right didn’t help feeling like no one was taking me seriously. The very thing that brought me to this place I so beloved was the very thing holding me back.
So you’d be proud of me mom and dad when I made a huge step forward by…well…sitting down. So this brings me to turning point #1: accepting the motorized wheelchair did not make me weak. Being a camp for kids with medical conditions, they had three motorized wheelchairs on hand and when I was offered one at first, I balked at the very idea. I’ve never used one and now wasn’t going to be the time. Then the day came that my feet hurt so bad I was in near tears during morning activities and I caved. In reality, it made me better as a counselor, able to keep up wit the pace more and be in a better mood because I wasn’t in such relentless pain.
To think, me, the founder of a disability organization at Duke, was so ablest that I was willing to endure so much pain just to avoid the “dreaded” chair. Being the counselor with the most severe presentation of a condition only made matters worse, as I felt like I needed to prove myself even further. Yet, the second I got over myself and my internalized ableism, things went uphill (literally). Granted, I almost took out one of my campers one my way out the cabin door at one point, but as they say, practice makes perfect Perhaps one of my favorite moments of the week was having a 7th grade boy with my condition show me that I was using the chair all wrong. Turns out that red button is a horn, not a power button! So much for that snazzy college degree I just earned.
And so Mom and Dad, this takes me to turning point #2: just because you have a skin condition doesn’t mean you don’t judge others, even if unintentionally. Just as I had a per-conceived notion about the power-chair, I had similar notions about my campers. Yes, 14-year-olds can be difficult (especially around those pesky 14-year-old boys) but they taught me more than I ever thought they would. On the second-to-last night, the girls began opening up before bed about how they had been teased and bullied because of their conditions. Every story was something I had been through. Every fear they expressed was something I still, to this day, struggle to overcome. Even the kids who presented “normally” had some mind-blowing things to say about earlier times when their conditions were in a worse state. It was humbling to say the least to learn so much from these girls who I wrote off the start as a bunch of teens just eager and ready for teen camp. I won’t tell you exactly what they said, that between me and my girls.
So all in all, Mom and Dad, it was a Week with a capitol W. I laughed, I cried, I rode a horse named Domingo. I screamed myself hoarse. I went canoeing. I got paint all over myself. I did NOT get a sunburn. I made new friends, and best of all, I danced to Born this Way at the camp dance with another camper who also has severe EB, cuz damn straight, Lady Gaga, we were born this way. It just took me a week on the lake to fully embrace it. This is what I learned at camp.
A new-found Megan