How I Spent My Summer Vacation, Part 2

It doesn’t take that long for me to begin to wonder if I’ve made a serious mistake or not. I haven’t had much time to really think about what I’m doing, but that doesn’t mean I haven’t been playing it all out in my head. And by the time I make it to the tiny town of Vaughn, Washington, just west of Tacoma, the orientation for volunteer camp counselors has begun, and I’m starting to have major doubts about the decision I’ve made. Once again, I have ventured outside of my comfort zone, and I’m volunteering at a summer camp for kids with neuromuscular diseases.

Back in the summer of 2007, I volunteered at the Muscular Dystrophy Association’s summer camp for kids. It was a life-altering experience, and I vowed to return (read about that experience here). But as is often the case, the summers of 2008 and 2009 came and went, with the circumstances of life conspiring to keep me from spending a week in the woods with young people who have various forms of muscular dystrophy.

I came close to going in 2009, but the H1N1 (swine flu) scare shut down MDA camps nationwide. Kids all over the country were devastated by the cancellations, as camp is for many of them the best week of the year. It was under these circumstances that Camp Promise came into being, and through my good friends at Darius Goes West, that I was introduced to one of the women who created the camp. I was asked to volunteer last year, which I couldn’t do, but said I would do my best to make it in 2010.

A full year later I arrived at Camp Promise with my friend Ben in tow. Ben is the only one of my friends to step up to the plate when I try to gather a force of volunteers, and he isn’t really sure of what he’s gotten himself into. I don’t really know what he’s thinking, but by the time we’re done going through orientation, I’m freaking out completely. For starters, I have been put in charge of looking after two campers. At MDA camp the counselors never have more than one camper to look after, but I’ve got two. I glance at their files and see that Camper One is relatively low maintenance, but the other doesn’t even come close. As I read his file, I see that Camper Two needs help with everything. And by “everything” what I mean to really say is “every single thing that most of us take for granted.”

Camper Two is 20 years old, and I am going to have to feed him, bathe him, dress him, take him to the bathroom, brush his teeth, wipe his mouth, set up his respirator and make sure that for one week he has a good time and doesn’t get hurt. And to be honest, I’m pretty confident I can’t do any of these things.

DCFC0156.JPGThe campers arrive on the second day, after I’ve slept on the most uncomfortable bed I’ve ever had the extreme discomfort of lying on. I’ve barely gotten any sleep; my back is seriously hurting from the bed, and within minutes of meeting Camper Two, I’m helping him go to the bathroom. There’s no time to be uncomfortable. No time to hesitate. No time to mentally prepare myself for what I’m doing. I just do it. I feel like a combat trooper who’s been pushed out of a helicopter and landed in the middle of a fire fight. By the end of the day my back is in as much pain as I can recall experiencing (including my short-lived stint working for the United States Postal Services).

Things rapidly go from bad to worse. From my point of view, the camper-to-counselor ratio is off, which makes everything around me feel overwhelming. Plus there is the vast age difference between the campers (the youngest is six while the oldest is 36), which takes some getting used to. And though it seems ridiculous to mention, there’s the small fact that the camp is built on the side of a very steep hill. The hill is so steep that wheelchairs can’t go up or down, and instead have to use a switchback trail that zigzags its way for close to a quarter of a mile. This might not be that difficult to walk up and down thirty times a day for a week, but when you add in pushing some kid in his wheelchair, suddenly it is a new form of torture.

By the third day at camp (and the second day with the campers), I’m exhausted, my back is totally messed up, and I can’t help but feel that I’ve made a terrible mistake. Camper Two has an incredible list of needs, and I’m falling short of meeting even the most basic. The simple act of going to the bathroom is an ordeal that takes over thirty minutes, leaving both of us frustrated. And all of this leads to a bad combination of elements that begin to take a toll on me. I’m lying on my bunk, in a cabin that I share with eleven other guys—three counselors and eight campers—and even though I’ve been up for over 21 hours, I can’t get to sleep.

Five of the campers in the cabin use respirators to help them breathe while they sleep at night, and in the darkness of the cabin, all five machines create a chaotic electronic symphony, played alongside the sounds of five individuals having oxygen pushed into their lungs, only to be pushed up in sputtering wheezes and coughs of carbon dioxide. Throw in the sounds of the other guys snoring, one camper talking in his sleep (calling out for his mother), and a pain in my lower back that cuts deep and burns hot, and something in my mind kind of snaps.

I can’t tell you what the sounds in the dark cabin were like, only that it was a combined sonic assault that led me into a panic attack. I felt like I was drowning in sound, and the only time I can ever recall being that afraid of what I was hearing was a thunder storm when I was a kid. Within the wheezing and coughing and snoring and the electronic hissing and popping and humming there came a sound that seemed to be made up of everything that scares me most. It was an auditory vice that gripped my mind and soul, making me think of all the things I never want to think about, because these things all scare me so much. But lying there, in the cabin, all I could do was think about these things, and it all closed in around me, crushing me like I had never been crushed before.

Lying in the darkness, overwhelmed by sound, wracked by pain, I faced a lifetime of fears. I’m talking about the shit that I seldom admit to even myself. For a time, I thought about waking Ben up, packing all of our stuff in the car, and just getting the hell out camp. But eventually I fell asleep and got a whole ninety minutes of sleep. And when I woke up, I knew I could not run away out of fear. There was no running away for the kids at the camp, who have had to deal with pain and fear on levels I couldn’t imagine. And so even though I couldn’t help but keep wondering why I had come to this place, I knew I couldn’t leave. If I left, I would hate myself more than I already do. I would consider myself more of a failure than I already do. And most of all, I would have fallen short of doing the one thing every human being should do, which is whatever we can, despite the obstacles that stand in our way.

More than anything, I wish I could say the week got better, but “better” doesn’t really sum up where things went from there. Now, before I continue on this long-winded rant, I think I should give you all a quick crash course in muscular dystrophy.

There are many types of neuromuscular diseases, most of which are lumped together under the common name of muscular dystrophy. There are nine distinct types of muscular dystrophy, but there are more than 100 other diseases that share multiple and common attributes with MD. Some forms of muscular dystrophy can’t even be noticed, while others can do unimaginable damage to the human body. The effects of MD can be all over the place, ranging from a slow progression over a “normal” lifespan, to limited life spans that often end in late teens to early twenties. This is especially true for those with Duchene Muscular Dystrophy (DMD), an always terminal form of muscular dystrophy that until very recently ended most lives before the age of 30.

DMD is a leading genetic killer of children worldwide. Of the eight campers in my cabin, five have DMD, including Camper Two, who can talk, chew, and ever so slightly move the fingers on his right hand. He needs a respirator to help him breathe, and at night he needs a feeding tube to pump this nutrient-rich liquid stuff into his stomach. This is what DMD does to young people—mostly boys—and I’d go out on a limb and say that most of male campers have DMD.

DMD is one of those diseases you don’t want to know about, because the more you know, the more it messes with your mind. The more you know the more it causes you to question the fairness of life, the existence of God, and the inequities of a world that spends more on war than it does on saving its children. And at some point, the reality of DMD hits you. Or at least it hit me. And it hit me like a ton of bricks.

Statistically speaking, I have a very good chance of out-living even the youngest kid at Camp Promise. And when you’re hanging out with a group of nine and ten year old boys, knowing any one of them will be lucky to see the age of thirty, it does something to you. And it does something to you knowing that a 21 year old with DMD is closer to the twilight of his life than you are, even though you are twice his age. It humbles you, and angers you, and saddens you, and it makes you realize how precious ever single moment of every single day is. And it makes you realize how insignificant your pain and fear really is. And perhaps more than anything else, it makes you examine your own disabilities.

Of the nearly 40 campers that I spent the week with, I saw a far-ranging and varied demonstration of the effects muscular dystrophy can have on a human body. Many of the effects are immediately evident, and become part of what we use to identify people as “disabled” or “crippled”—a curved spine here, shriveled limbs over there. But the thing I’ve come to realize is that we are all disabled, crippled and damaged. Some wear their disabilities on the outside, and are forced to spend their lives in wheelchairs. And then are some—the “ambulatory asswipers” one camper calls them—whose disabilities are on the inside.

DCFC0184.JPGThe point I’m trying to get at is that none of us is “normal” or completely healthy. We all have something wrong with us, be it physical, emotional, intellectual, spiritual or any combination thereof. And depending on whatever damages or defects we have sustained and continue to endure, the more crippled we can become.

I have met people with muscular dystrophy that are bent and twisted and in constant physical pain, to such an extent that they have trouble getting through life. At the same time, I have met people with “emotional” dystrophy that are also bent and twist, and suffering from a different type of pain, and they too have trouble getting through life.

This is what I was thinking about on the forth day of camp. Everyone is crippled. Everyone is in pain. Everyone feels like life has dealt them a bad hand, and that their suffering is somehow unique. The key is some people take the hand they’re dealt, and play the card game of getting through this existence as best they can, while others wallow in self-prescribed misery, cursing the universe for singling them out as the sole participant on the game show of Life’s Incredible Torture Show.

By the forth day of camp I was in no less pain and feeling no less inadequate and useless than when the whole thing started. Taking care of Camper Two was still difficult. Going up and down the hill was brutal. Our cabin stunk, and sounds at night were deafening. But all around me were beautiful people, lost in the moment and enjoying life. All I had to do was look past the wheelchairs and the physical disabilities, and I was able to see young people riding the waves of life. And then I could hear their laughter, which was loud and soothing, and so powerful that it managed to drown out the sounds of the ventilators and the coughing and the wheezing.

Life is difficult. It is filled with pain and suffering. But somewhere amidst the pain and suffering, the difficulty and the frustration, the fear and the misery, there are beautiful things. Sometimes this beauty is a tiny sliver of barely visible light that is almost completely obscured by darkness. Or maybe it is a solitary musical note practically inaudible against the deafening howl of the stormy winds and pounding of the thunder. But the light is there. And so is that musical note. Both exist outside of us and inside of us. And all we must do is look and listen as best we can, until we clearly see and hear both—even if it is only for a fleeting moment.


2 Responses to “How I Spent My Summer Vacation, Part 2”

  1. airborne248 Says:

    Respect dude. I volunteer with foster kids who are separated from their siblings through adoption/foster placement/etc. It’s simultaneously one of the greatest, most heartbreaking, and perspective granting experiences I’ve had.

  2. L13 Says:

    massive respect as always

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