Sail the Sea

Many don’t live past the last year of camp. All they want is a little freedom. Most are just boys who are bound to their wheelchairs for life. I am one of them, and so is my best friend, Dan.

memoir

We are evolution’s joke. Camp Florian brings out the comedy in our conditions. We can laugh at the world, because we can laugh at ourselves.

For seven years now, we’ve gone to a specialized camp for children with Muscular Dystrophy, a one-week hiatus for young people who depend on others for their very existence. In 2000, we went for the last time, mainly because I was twenty-one, the oldest age allowed. Dan, though three years younger, refuses to return without me.

The camp is held at the Massachusetts Hospital School, which is more of a hospital than a school. MHS’s campus consists of five dorms, a recreation center, a high school, an elementary school, a barn, a power plant, some offices, and a two-floor hospital. Covered walkways connect the buildings.

MHS is on a lake in Canton, Massachusetts. There are loudspeakers everywhere—even on the docks—to spread the sound of institutional authority. A paved nature trail passes the docks and makes a small loop in the woods. I can hear the loudspeakers from the farthest point of the nature trail. Off of the nature trail, there is an unpaved path, and at the end of which is a wide-open, undisturbed field.

Everyone at the camp has one of the 40 types of Muscular Dystrophy, or MD. The most common type of MD is Duchenne. Most of the campers are young boys with Duchenne, because it is rare for girls to get it. I have Becker Muscular Dystrophy, a milder form of Duchenne, and my friend Dan has Spinal Muscular Atrophy. The general theme of these diseases is that they render their carriers unable to manufacture new muscle tissue and cause continuous deterioration of existing muscle mass.

Most children with Duchenne die from respiratory or heart failure. Most die in their early twenties.

Dan and I both have vague prognoses regarding our life spans. For some, the course is faster than others, but for us, it is slower. So far, so good.

Everyone else at the camp is broken up into two distinct groups: Nurses and Counselors. The Nurses, though it is not obvious to everyone, are the real authorities. They give you your medication and tell you what you can and cannot do, as dictated by their vast knowledge regarding your disease. They would like to keep you under their noses at all times to avoid liability. The Counselors run activities, take care of the campers, and obey the Director, who obeys the Nurses so they stay happy.

The Nurses are like the camp Gestapo.

The first evening, a Nurse came to give Dan his medication and Dan requested a piece of bread to take with his pill so he would not choke on it. The Nurse told him there was no bread. “Just take the pill." Dan still insisted that he needed bread. The Nurse told him that the world does not revolve around bread. Dan explained further, until the Nurse decided to listen. He finally got a piece of bread so he would not choke on the pill.

The most important rule at MHS is that the campers must not charge their chairs while they are sitting in them. According to the Nurses, this act will infinitely increase the chances of the chair exploding. This is a problem, because frequently wheelchairs run out of juice after a hard day of driving, and most kids do not want to be removed from their chair, which means losing the only form of independence they have. Removing a child from a wheelchair constitutes a cruel joke.

There has not been a chair in history that has exploded while charging; the government just got scared that it could happen. One in a billion was enough of a risk to create a universal policy. Children in wheelchairs must be protected against the serious threat of chair explosions. At home, all campers charge their chairs a few feet from their beds. My chair charges right beside my head. I am still alive.

MHS was founded on the principle of individualized treatment. Instead, it has evolved into a system of blind equality, as nurses treat all campers the same, regardless of each camper’s idiosyncrasies, and unfailingly obey the rigid government-mandated precautions.

MHS was also founded on the principle of quality education for disabled students, without allowing them the distraction of being different. Somehow it justifies itself as a school while turning out young adults who cannot read or count out change. Those who attend become victims of an institution that treats the disease but not the person.

Dick, this year’s Camp Director, always spoke using a megaphone and quickly inherited the apt nickname "Megadick." He gave us a speech about freedom on the first morning. His definition of freedom depended on the assumption that you would do what the Nurses and Counselors tell you, always tell a Counselor where you are going, always go in pairs or have a Counselor with you, and do not go out alone anywhere without telling anyone. Then you will have freedom. These are simple things we ask of you, and if you cooperate, we will let you have some freedom.

So, basically, the word freedom sounded nice, but it had no actual place at this camp.

I am twenty-one, with a full grasp of freedom, and Dan was going off to New York for school and reaching out for his freedom, as well. At camp, we experience what it is like to have no freedom—to be trapped. Dan and I naturally rebel against conformity and dependence. At camp, we needed an outlet.

We found one in something not many would expect to find freedom in: something dangerous and exciting. We had discovered, at the top of an unpaved trail, that wide-open field waiting to be crossed and explored. The field was far removed from the grips of the infirmary, and yet right there, waiting to be found. It invited only those who fought the institution for the virtues of reason and liberty. It invited us, and we accepted. We planned our escape for a whole year.

There was no trail, only high grass. There was a risk: we could get stuck. The goal was to reach the trees on the far side of the field. Crossing the field meant forging our own trail—quite a task for one normally forced to follow paved paths that can’t limit mechanical legs.

We attempted to cross the field the year before, but stopped when we reached a large lump that separated two sections of the field. We thought it unwise to continue into the deep grass, and were running short on time, so we turned around. We pledged to return the next year.

Dan was obsessed with our mission, intoxicated with the possibility of defying his own dependence. We visited the field several times during the day and came back at night, just to contemplate the greatness of the idea. On a warm, sunny day, near the end of the week, we conspired to make a break from the suspicious eyes of the Nurses and the overcautious ways of the Counselors.

The last time we went to the field was different. This time it was something we would put behind us instead of something we could only see ahead of us. It was different because this time we were taking action.

Dan led the way. He looked for the path of least resistance, like a Mars explorer avoiding boulders.

When we reached the point from which we had withdrawn the year before, we sat on the lump and gazed out over the tall grass.

"The field: the final frontier—these are the voyages of Dan and Travis!” exclaimed Dan.

"Oh God, don’t be sappy," I said.

"To boldly go where no cripple has gone before… to seek out new life and new civilizations."

"To boldly go? You forgot the last line."

"Damnit, what was the last line?"

"To boldly go…where no man has gone before?"

"Yeah, I said that already."

"Did you?"

"Yeah."

"Well, you screwed it up."

After the rise, the serious exploration began. Ahead was an ocean of high grass. Dan drove off the rise and into the sea like a newly christened ship. His chair seemed like an overloaded barge as it sank into the grass.

"It goes down here…." announced Dan.

"I think you’re going to sink in and disappear."

But with a final shove, the boat took to water. "I’m in!"

It was safe, so I followed. The sound of the dry grass being crushed beneath me made me feel as though I were standing at the prow of a ship, watching the sea turn white as the ship cut through water like a slow-motion bullet through blue jelly. Seeds and other pieces of the grass flew out in front of us: the spray. A path was cleared behind us: the wake. I was a sea captain proving the world was round and Dan sought the New World.

A praying mantis jumped on my leg and I screamed. A sea dragon had sprung from the waves to attack my ship. I wrestled with the beast before finally throwing its menacing head back into the waves, and made haste to leave it behind.

Then Dan got stuck and had no choice but to wait for my approach. He had tried to turn around, but the tall grass tangled him, and his chair refused to move. I turned my chair and backed into his at full speed. The jolt got him free and set him on his way once again. The land of the far shore began to show itself. The prevailing winds of determination blew us on.

Finally, with shore a rowboat’s trip away, we paused. Though we had finally closed on the far shore, Dan was intent on touching the trees. He did not want to come this far and have nothing to show for his labors. He had to lay claim to his goal. But there was yet a struggle ahead.

"Have you reached America yet, Dan?"

"I think I can touch the trees… I’m really close."

He brought his chair back, in another attempt to turn around, but the grass would have its say again. Every time he went back, the grass barred his way forward. Its claim on Dan’s chair was ruthless, as well as its hold on his mind.

"Uh oh, I think I’m gonna get stuck," Dan said.

"Yeah, so don’t. Let’s just turn around now. We’ve made it this far," I said. He moved back again, but could not move forward.

"It doesn’t like me going forward," he said, pushing the joystick fully forward to no effect.

"Well, don’t go backwards any further," I said, watching in dismay. He went back again, hoping to create a runway on which he could gain full speed and break through, but the grass refused to give.

"Feels like it’s bucking now," said Dan matter-of-factly. Somehow we knew this was not the end. Every obstacle is just a question of how much thought and effort it takes to get free. If we think long enough, and jab at the problem with varied tactics, there is always a way.

"Ah, for Christ’s sake! Here we go," I said.

"I’d like to be going backwards," Dan said.

Then, Dan had an idea. His chair was fitted with elevating footrests, an elevating seat, and a reclining back. He inclined his footrests, increasing the amount of distance between his feet and the grass. This gave his front wheels direct access to the problem. With his footrest–and the resistance it created–out of the way, Dan gunned his chair forward. This time the grass gave, and Dan drove free. The weight of worry and fear of failure were lifted. Dan was now clear to grasp the tree.

He pulled up to the tree, reached out, and took hold of a branch. A wind blew across the field. The grass bowed and cheered, and the tree bounced with the excitement the wind had provided.

Dan had done it. He had touched the trees.

"Victory!" he cried out to the field, his witness. "We made it," he declared to me, his accomplice. The smile on his face could have lit up the world, or inspired the masses. It was the look of a man who stands atop the highest mountain, sails the widest sea, or plants a flag on the moon. This all seemed so profound because we grew up learning that this was something we could not do… because other people fear for us where we should fear nothing. Other people can just walk there, but we have to sail a sea.

We traveled back with a new sense of dominion over our own lives.

"Well, now. Here we are at the end and just thinking about what it means," Dan began, sitting by the trees where we’d started. "This entire idea was born of our own independent ambition, our own courage, and our own adventurous spirits. We saw something—the field—and we took it. We conquered it. And if the other kids here could see that, they could do it themselves. They could forge their own paths through their own fields, without people tagging along, and without people cleaning up after them. I mean, you get stuck, but you get out too. You get in, you get out, and it’s not always easy. But we made it through."

When you look at the bright faces of these children and understand what they go through, you realize that this disease is more than evolution’s joke. This disease is a disgusting rape of the perfection of purpose the human body has achieved–the purpose it needs for survival. This disease causes people to flinch when they see it. These children see that flinch too, and how that disease affects the minds and the souls of these children can be summed up in that flinch.

And they still smile. They still laugh. They still love life. I know; I’ve seen it in Dan’s eyes.