Dream for a Dollar

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

For seven years we attended a specialized camp for children with muscular dystrophy, a one-week hiatus for young people who depend on others for their survival. In 2000, we attended for the last time. I would be turning twenty-one, the oldest age allowed. Dan, though three years younger, refused to return without me.

Let’s be honest: We are evolution’s mistake, our bodies a joke of nature. We make people uncomfortable and people so often don’t know how to relate to us. We must be miserable, we must be sensitive, we’re probably demanding. People pity us, but when we recall all the crazy things we have to deal with, usually we laugh. Looking back, camp was like a stage for a comedy routine, an insular microcosmic world where the disabled and able bodied clashed. Dan and I can see the comedy to our conditions where others might see tragedy. We can live with ourselves because we can laugh at ourselves. If this is a joke, I guess the important question is who gets the last laugh.

The camp is at what they call a hospital school, a thoroughly accessible campus, dorms furnished with hospital beds and Hoyer lifts, an elementary and high school with wide halls and parking spaces in place of desks, a recreation center, and an actual hospital. A network of covered walkways connects all the buildings, like highways for motorized wheelchairs. Strategically placed loudspeakers connect all parts of the campus to the voice of institutional authority. Further afield, there’s a barn with horses and chickens, a track (for wheelchair racing perhaps), and a nicely paved nature trail that leads to the lake and loops through the woods. You’ll notice a loudspeaker on one of the trees. There’s a dock on the lake and a pontoon boat with a weight limit of six chairs at the dock—campers are strapped into their life preservers and their 200-pound chairs in case the boat goes down.

There’s also an unpaved trail up a steep incline off the paved nature trail, and a wide-open, undisturbed field at the top. You’d never know it existed without a bit of curiosity and faith in an off-roading chair.

During the school year, young people board at the hospital school. The philosophy is thus: A hospital school allows children to focus on their studies in a perfectly accessible world without the distraction of being different, where everyone is like them and understands being disabled. To avoid comparison completely, they don’t even give grades. Parents have the comfort of knowing their children are being cared for and educated, just not by them. A few students are left there year-round.

Everyone at the summer camp has one of the 40 types of muscular dystrophy. The most common type of MD is Duchenne. Most of the campers are young boys with Duchenne (girls with MD are rarer due to how the genetics work). 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 the inability to manufacture new muscle tissue and the deterioration of existing muscle mass.

Most children with Duchenne die of respiratory or heart failure at the onset of their twenties. If they’re lucky they reach the last year of summer camp.

Dan and I both have vague prognoses regarding life span: for some, the course is faster than others. For us it’s slower. So far, so good. Nonetheless, Dan’s disease renders him far weaker than me and he already depended completely on the care of others, whereas I could still do much for myself.

The camp is comprised of two other groups: an army of nurses and counselors. The nurses, though it may not be obvious to outsiders, are the ultimate authorities. Counselors are trained how to care for campers, but the nurses are educated and certified to care for the disabled. They doll out the daily medications, they decide what is healthy and safe, what disabled children can and cannot do, as dictated by their vast knowledge of our diseases. They keep their eyes on the campers to prevent liability. The counselors run activities, take care of the campers, and obey the Director, who obeys the nurses in the end.

Dick, the hospital school’s athletics director, was the camp director that year. Picture Boston Mayor Tom Menino, only younger and balding, with the build of a bullfrog and the voice of Jesse Ventura. Permanently attach a megaphone to one hand and the man we lovingly called Megadick is complete.

Arriving to camp on the first day is slightly like being committed. Campers and parents wait in a line for their chance to hand over medications and have medical documents and camp applications reviewed. Admission is denied without proper paperwork. In fact, my first year to camp at the age of twelve, my doctor hadn’t sent the required forms in time, so we were turned away while the doctor was contacted and forms were faxed. In the meantime, I was crying at the local Friendly’s because I was already nervous, my fears of being a misfit even at camp out of control. Back then I could still walk with difficulty, but I sort of waddled, so it was embarrassing. Everyone else had motorized wheelchairs; would they make fun of me because of how I walked?

It all turned out great, and that first week was one of the most memorable of my life.

Meals are served in the rec. center, one half of the gym converted to a make-shift cafeteria (when not eating, kids use the tables as an obstacle course for racing). The rec. center, a large building divided by a wide thoroughfare, gym on one side and a pool behind locker rooms on the other, is like the camp’s town center. There’s a café on one end and the athletics office where Dick hangs around sheriff-like opens off the thoroughfare.

On the first day of camp, dinner is traditionally followed by a game of all-campus capture the flag. The first dinner is the Director’s chance to lay down the ground rules for the week before the fun starts. As Dan and I finished our meals that first night, the squeal of a megaphone alerted us to the fact that Dick had risen to speak.

“CAN YOU ALL HEAR ME?” Dick’s voice boomed, followed by a squeal, the sound echoing in the gym’s less-than-ideal acoustics. He lowered the megaphone, adjusted the volume. Dan and I looked at each other and chortled.

“Alright,” he continued, “welcome to camp everyone. We’ll start our game of capture the flag shortly, but firstly I’d like to go over some camp expectations. Our goal this week is to give you some freedom—from your parents, from home, and all that. So, to me, freedom is all about cooperation. What does cooperation mean? Well, first of all, it’s important that you listen to your counselors and the nurses. They’re here to help you out and make sure you have fun but they’ll also be making sure things go smoothly. So you need to listen to them.

“It also means looking out for each other. Please don’t go out alone. If you go out on your own, make sure you’ve got a buddy with you in case you need help, or go with a counselor.

“It’s about communication. Make sure your counselor knows where you are or where you’re going at all times and if a counselor asks you to do something, do what they ask.

“Cooperation is also about boundaries. Please stay in the main campus area unless you’re attending an activity. I don’t want you out on the nature trail alone where no one can hear you.

“Lastly, make sure a counselor is with you at all times, if I haven’t mentioned that.

“So, freedom is all about cooperation, and if we all cooperate and you follow the rules and listen to your counselors and stay together, you’ll have freedom here at camp. We’re going to have a great week! Counselors, let’s get the game started at 7, alright?”

Dick turned off the megaphone and went back to his table. A second later he popped back up and the megaphone squealed to life. “The nurses would like to remind campers that meds will be distributed at breakfast, lunch, and dinner, and that bedtime is at nine. Thanks.”

Dan and I contemplated where Dick’s philosophy of freedom fit with thinkers the likes of Locke and Hume while dinner was cleared and campers arrived in the gym for capture-the-flag instructions.

Dick arrived and the megaphone went to his lips. A central walkway divided the campus in half: this would mark the border between the red and blue team. A small road looped around the campus: this would be the boundary for the game. The year before, there had been a bit of a scandal when counselors hid the flags beyond the disabled children’s reach, requiring a counselor to retrieve it and thus stealing the children’s fun. So this year, counselors were limited to the role of assisting the campers, but the flag had to be accessible by wheelchair.

Dan and I tended to go rogue during the game, searching out weaknesses in the border patrol and clever routes of sneaking around, occasionally racing for safety from wheelchair pursuit, engaging in witty taunts, or enduring puerile insults ourselves.

An hour later, the distant sound of Dick’s voice amplified by megaphone called the campers back to the gym. No flags had been captured, but it was getting late so we were out of time. Dick congratulated both teams’ defensive capabilities and invited us to ice cream in the make-shift cafeteria.

This was the first year that the traditional capture the flag had no winners, and a sense of failure seemed to follow the campers towards their dessert. Come to find out later, a flag had been captured but Dick ended the game promptly at eight, before it could be smuggled across the border.

After dessert, Dan had to take his bedtime medication. We were the last to approach the nurses’ cart at the edge of the cafeteria, the rest of the campers on their way to the dorms.

“Is there any bread?” Dan asked them. “I need some bread to swallow my pills.”

“I don’t see any,” the nurse said brusquely, glancing to the tables where meals were served as she dropped the pills in a cup. “Ok, here you go, drink these down.”

“I need a piece of bread to swallow the pills or I’ll choke.”

“Well I don’t think we have any bread, everything’s put away. You’ll just have to do without.”

Dan was understandably persistent. “I have some bread every time I take medication because I will choke if I don’t have something to swallow with the pills.”

Exasperated, the nurse stormed off to the café to find some bread. “The world does not revolve around bread, you know!”

Dan finally got his bread and was able to safely take his pills.

I suspect that even the nurses lapse into the logic that if we all have the same disease, we must all have the same needs, and treatment good for one is good for all. In truth, needs are so varied that we all may as well have our own, personalized disease.

At camp, children put their chairs to heavy use, and recharging them each night is a necessity. The nurses have a strict rule regarding wheelchair charging: chairs must not be charged while campers are sitting in them. According to the nurses, this act will increase the chances of one’s chair exploding. This poses a problem when chairs run low on juice during the day and a kid just wants to sit there and charge a bit to make it through the day. Kids don’t want to be removed from their chair—this would mean losing the only form of independence they have. Removing one of these children from their motorized chairs constitutes a harsh punishment.

(It had, in fact, been used as punishment the year kids decided that crashing into each other’s wheelchairs was an effective way of solving disputes. The worst vehicular assailants had their chairs impounded for a time.)

I asked around. Not a chair in history has ever exploded while charging; the government just got scared that it could happen. One in a billion was enough of a risk to make this universal policy. Children in wheelchairs, being that much more vulnerable, must be protected against the serious threat of chair explosions. At one point in history, when battery-powered chairs were new technology, gases could build and ignite while the batteries charged—or something like that. Since then, technology has improved considerably but the old rules apply, just in case. In reality, all campers charge their chairs at home feet away from their beds. My chair charges right beside my head. I’m still alive, at great risk, according to the nurses.

At the hospital school, all chairs are taken to one room in the bowels of the building where they are charged behind blast-proof doors.

My second year of camp at the hospital school, Dan and I shared a dorm room. The following year he had to start using a CPAP, a breathing device involving tubes and a face-mask that assists night-time breathing for those with sleep apnea, which meant he had to dorm in the hospital where nurses could oversee him. For several years we were separated. When they noticed our inseparability in proceeding years, they allowed me to be his roommate. In this hospital, they like to keep their patients well refrigerated overnight—maybe they keep better that way. So to avoid frost bite by air conditioning, our counselor found us some down comforters.

(Speaking of keeping warm: If at any point you couldn’t figure out where Dan had gone, you could usually find him in the locker room parked under the hot air hand dryer, using his head to repeatedly turn it on. “If I sit just right, it blows down my shirt,” he informed me the first time I found him.)

Each morning, Dan was eager to have his CPAP mask removed but inevitably lay there for an hour or so patiently breathing filtered air until a nurse arrived to turn off the machine. Counselors were forbidden from turning the machine on or off because they were not trained to do so, even though they were there earlier to start getting campers out of bed. A nurse’s certification is required. After all, a CPAP is a complicated device. The nurse came in, pressed the green “OFF” button, and left. Dan could now get out of bed.

On days that I got up earlier than Dan, I went over and pressed the off bottom. I may not have been trained to press off-buttons, but I was also not a counselor and cared more for my friend’s discomfort than the nurse’s silly rules.

Every morning I brushed my teeth and combed my hair in the dorm room’s bathroom, but had to wait until I got up to the rec. center to use the toilet. I had learned that the dorm room’s toilet was crammed between the walls of the narrow bathroom, no room for a wheelchair to pull up beside so I could scoot myself over. It occurred to me that the hospital school, while completely accessible in most respects, had not been built for accessibility. It had been built for disability. It assumed that everything would be done for the disabled children who lived there. What need was there to design for independence?

At past years of camp, breakfast had been pretty good—eggs and bacon and waffles. This year it was bagels and muffins every morning. I had discovered that the Café at the other end of the rec. center, visited by the school’s year-round staff, prepared the breakfasts I enjoyed. I had to pay for it myself, but crispy bacon is worth almost any price.

Being responsible and courteous, I went to the rec. center office, which served as camp headquarters, to get permission. There was a front desk type of set up on the main corridor of the center that kids could pull up to. Tracy, the demoted camp director from years previous, was sitting at the desk. She served as the hospital school’s entertainment director and had been well-liked as the director for her easy-going, fun-loving, and motherly nature. She would certainly give me permission, so I thought to ask her first. I posed my question, but as she opened her mouth to respond, Dick sauntered out from his office.

“What’s this?” he said, looking between the two of us with a smile.

Tracy withered with annoyance. “He wants to get breakfast from the Café.”

“Oh. Well.” Dick frowned, then spun to the nurse behind him. “Nancy?” They huddled and talked in hushed voices. Tracy rolled her eyes as I waited. I grinned.

Dick returned. “Technically campers are supposed to eat the food we provide, but if you enough money and that’s how you want to spend it…. You need to have a counselor go with you, though.”

I reminded him that I was twenty-years-old and currently attending college in the city and was fully capable of ordering some eggs and bacon. No matter. A counselor followed me over to order my breakfast like a body guard. The counselor I found was two years younger than me.

As I waited, I turned to the counselor. “Now if the bacon attacks me, I want you to be prepared.”

Our second night at camp, nurse Maggie showed up to help Dan get to bed. Maggie and Dan had become friends in previous years when she’d helped him. She was older, full of energy, and Irish down to the accent and the attitude. They shared a sassy repartee as they remembered previous years. One of the things Dan liked most was her genuine and honest nature. Maggie didn’t have patients, she had friends, and she lit up every room she entered.

“What’s it like going to school here?” Dan asked at one point.

“Oh, you wouldn’t want to go here, Danny.”

“Why not.”

“It’s not for you, you’re too smart. Some of the dears here, they don’t learn as well as you, it’s not their fault—they can’t help it. Everyone would need more attention than you; a smart young man like you would starve for lack of a challenge.”

“Is it that bad?” he said.

“Oh, dunno as I’d say bad, it is what it is, you know? But not everyone here can count out change. Not everyone can read. The kids who come here have so many challenges, Danny, in many ways you’re the lucky one. You’ve got a strong mind. You’re going to be someone, this disease can’t stop you, I just know it.”

They shared a hug—I got one too—and Maggie bid us goodnight.

The next day I wondered as I saw the children who boarded all year round, outsiders to our special camp. They seemed to wander aimless, some of them, a nurse attendant with them. Some would just find a place to park and stare off. I felt bad for them. Freedom is something everyone craves, but I realized it is something not everyone will know. I was twenty, and as a college student living in the city I had a full grasp on freedom. Dan would be going off to New York for school, reaching out for his freedom as well. Both of us naturally rebelled against conformity and dependence. Despite all the freedom camp offered, we both realized in our own way that it was still a place of dependence.

The highlight of each week of camp is the Red Sox game. If not for me, the Red Sox game would be Dan’s only reason for attending. Near the end of the week, the entire camp loaded into a fleet of buses and vans to make the journey to Boston’s Fenway Park. There was only one year we didn’t go—during the baseball strike—and we instead attended a minor league game. We’d had to sit in the garage beside the field, with an annoying clown who spent most of his time standing beside us, reaching a hand into his pocket to squeeze a squeaking ball. It was creepy.

Before we loaded up this year, Dick gathered all the campers in the gym for another chance to use his megaphone. This speech was a rundown on the plans for the evening, where we’d be sitting, and safety precautions he wished us to follow.

“There’s going to be a lot of people there so you will need to drive carefully.” Like we hadn’t been driving wheelchairs out in the real world for most our lives. “Remember, motor vehicle laws apply to wheelchairs, too, so you can be charged with vehicular assault if you hit someone.”

I could see the headline: “Man in critical condition after high-speed wheelchair hit-and-run. Police on lookout for handicapped child in bright red wheelchair.”

Dan and I, being among the oldest campers, were allowed to sit in the roof box, which, from my experience, was the best place because it was a small seating area with its own food stand and bathroom. I tend to wait an inning or two before getting food—a nice Fenway frank on a bed of relish smothered with ketchup and mustard. At about the fourth inning I felt like a snack, and had been told the concession stand didn’t card, so dared to order a beer (I would be turning 21 a few days after camp).

It was just as I was getting into my snack and my beer when the counselors with us told us it was time to go. Dan and I shared an incredulous look.

“The game is barely half way over,” I pointed out. We’d always stayed for the entire game before.

“I know, but Dick says it’s time to go,” the counselor explained. “We have to get back to camp by nine.”

Dan scoffed. “You’re kidding me. Dick’s making us leave for bedtime?”

The counselor shrugged. “Apparently the nurses were upset last year when the campers got back at 11 and they had to spend another hour getting them all to bed, and putting campers to bed is not the job of the overnight nurses.”

“We’ve always stayed when Tracy was the Director, how come it’s a problem now? I only just got my beer, it’s expensive here!”

“Why do you think Tracy’s no longer Director?” the counselor leaned in to whisper conspiratorially. “Tracy didn’t listen to the nurses, she insisted this week was for you kids, and that pissed them off. Dick obeys them. I know it sucks, but what are we going to do?” The counselors were no happier—they came to this camp because they wanted to help disabled children have fun—but they had to be professional.

Dan was mute with outrage. He parked against the wall of the stadium as the campers were loaded back into the buses and vans, the sounds of fans’ cheers roaring overhead. I could see on the faces of all the other campers the disappointment of leaving early. There was also resignation in their eyes. They were used to having no control, to others doing and deciding for them. The Sox fans in the group sat together, looking ready to revolt. Once again a game played with no winners. I asked if Dan and I could go for a walk around the block to cool off a bit while the other campers were loading. Doing so was forbidden, too dangerous without a counselor, and they were loading the buses.

I pointed down the street. “You see that building down there? That’s where I live for most of the year. I can’t count the number of times I’ve walked down this street on my own.”

Walking around the block was forbidden. End of story.

On the last day of camp, I found Dan on the high school balcony after breakfast. The high school was a rectangle, elevated on columns above an open garage underneath, with a wide balcony all the way around. The walkway leading to the school was a bridge high over the road that looped the campus. Dan went there because he liked the seclusion and the view. A vine-covered hill rose on the other side of the road with a view across the central field and the clock tower.

“I’m not coming back next year,” he said.

“Why not?”

“What’s the point? You’re not going to be here. We can’t even watch the Red Sox game. I don’t know if I could stand it all alone.”

“Yeah, I know. It used to be different. It never seemed so institutional before.”

Dan looked at me. “We were different before. We were younger. We’re growing up now and we want to be free, but they’ll never stop treating us like kids. They’ll never stop treating us like cripples.”

I had a sense that Dan wasn’t just talking about camp. He seemed too deep, and I was afraid he was depressed.

“We have fun, too, though, don’t we?”

He smiled at me. “Hell yeah. After a year in the real world—the normal world—I start to believe I am different, even though I know I’m just the same. I’m treated different. It wears you out, you know? Camp was like a relief, a recharge, a place I didn’t have to worry about being different. Like…recharging mental batteries.”

I chuckled. “I like that.”

“But I think I’ve gotten all the charge I can get. It’s not the same any more. It’s not the freedom it used to be. It feels like just another trap.”

An image appeared in my mind, of that steep path off the nature trail, and the wide-open field at the other end. “We don’t have to let it trap us,” I said.

“What do you mean?”

“The field,” I said.

I had discovered the path the year before, and I had showed Dan. We had gone up to the edge of the field, but there was a point at which the ground sunk down into high grass and we dared go no further. Dan talked about the field after that, and how cool it would be to cross to the other side. We visited the field several times that year. Even if only to enjoy a quiet place beyond the pavement. But each time, Dan would sit there and gaze out over the open expanse. I imagined Magellan as a boy standing on a Portuguese coast, gazing out, dreaming.

Dan’s eyes lit up when I said the word and I saw the spirit of all the world’s explorers looking back at me.

“Let’s do it. Let’s cross the field.”

Dan grinned. “The counselors, the nurses, they’d never let us do it.”

“I know, and that’s why we’re going to do it.”

A flash of worry. “What if we get stuck?”

“Then we’ll get each other out.”

Friendship could be defined by his smile.

The field was something dangerous and exciting, something no one there had probably ever crossed before. It was far removed from the grips of the infirmary and yet right there to be found. Many before us had probably been coaxed by it, but it only won the brave at heart and adventurous of spirit. It invited only those who fought for the virtues of reason and liberty. It invited us, and we accepted.

Dan was instantly obsessed with the idea, intoxicated with the possibility of defying his own dependence. We had activities during the day, but there was a period between the last activity and dinner—a free time—that would be the perfect opportunity. The counselors allowed the two of us to go for rides around the campus at least, so we would claim to do the same, only this time we’d make a break for the nature trail.

The plan went without a hitch and soon enough we were rolling full speed away from overly strict nurses and overcautious counselors. We waited to make sure no one was around when we took the path leading towards the lake then bolted down without stopping. No one would see is beyond the main campus. We were good to go.

That’s when we saw Tracy, the previous camp director, making her way back from the barn. “Hey guys! Where ya headed?” No accusation, just a friendly question.

Dan and I exchanged glances and looked back at Tracy wide-eyed. Tracy gave us a side-long glance, then turned to look at the opening to the nature trail. When she looked back, she smiled.

“Just be careful, you two. And of course, be back by nine.” She winked and started walking away, heading up to the campus. “I never saw you!” she called back.

Dan and I grinned and took off down the trail.

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. There was no trail, only high grass. There was a risk: we could get stuck. There was a goal: the trees on the far side of the field. Crossing the field meant forging our own trail, and this is a revolution when forced to follow the paved paths that limit our mechanical legs. How many people have stood before something surmountable, even as trivial in nature as the field, and decided to take the action of walking away? We made a statement to ourselves, Dan and I, that though we may be weak of body, we were strong of will.

Dan led the way, seeking the path of least resistance. 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,” Dan announced.

“Seriously?” I said.

“To boldly go where no cripple has gone before, to seek out new life and new civilization.”

“Nice touch.”

Dan looked back. “You think so?”

“Yeah, definitely. You got it a bit backward though.”

“Crap, did I?”

“Yeah, ‘to seek out’ comes before ‘to boldly go’.”

Dan raised his eyebrows. “You’re a nerd, you know that?”

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

“It goes down here…,” he warned.

“I hope you don’t sink in and disappear.” But with a final shove the boat took to water and settled.

“I’m in!”

Following the path of his wheels, I entered.

We were off.

Slowly but persistently we made our way. The sound of the dry grass being crushed beneath my chair gave me the feeling of standing at the prow of a ship, watching the sea turn white as the ship cut through the water. Seeds and other pieces of grass flew up in front of us: the spray. A path was cleared and our course defined behind us: the wake. I was a sea captain proving the world was round, and Dan was an explorer seeking the New World.

A praying mantis leaped out from the grass and landed on my thigh. I screamed. A sea dragon had sprung from the waves and attacked my ship. I wrestled the beast valiantly, vowing to fight to the death, and finally threw its menacing head back into the waves to contemplate its demise.

The mantis carefully placed aside, I made haste to leave it behind.

Dan’s chair suddenly tipped to the side and his wheels spun, grass tangling them. “Ahh crap! I’m stuck!” He tried moving his chair side-to-side, tried to turn, but his chair refused to move.

“Stop moving, I’m right behind you.” Dan had little choice.

I turned my chair around, the back being more solid, and charged backward full speed into him. The jolt set him free and sent him on his way. The prevailing winds of determination blew us on. After much dreads and dangers the land of the far shore began to show itself. We were almost there. Finally, with shore a rowboat’s trip away, we paused. I had thought we were as far as he wanted to go, being so close.

“Have you reached America yet, Dan?”

A moment of contemplation. “I think I can touch the trees…I’m really close.”

I realized then this was not just philosophical, this was physical. Though in my mind we had finally reached the far shore, Dan was intent on claiming his goal, on holding his victory in his hands. He wouldn’t come this far and have nothing to show for his labors.

Dan brought his chair back in an attempt to turn around, but the grass would have its say again. “It doesn’t like me going forward,” he said. Somehow, the way he’d crushed it down backing up prevented him from going forward. So he went backward instead hoping to extricate himself from the patch of tough grass. But every time he went back, the grass barred his way forward, forcing him back yet further.

“It likes me going backwards.” Doing so only dragged him deeper into a trap. Ruthless was its claim on Dan’s chair; ruthless was its game with Dan’s mind. “Uh oh, I think I’m getting stuck.” He pushed his joystick full forward to no effect.

“Don’t go backwards any further,” I said, “the grass only gets higher behind you.” I watched in dismay as my friend fell firmly into the clutches of a crisis. He went back again, hoping to create a runway with which to gain full speed and break through. By now, he could go no further, grass as tall as his chair blocking the way behind him. Gun his chair as he might, the grass wouldn’t give.

“Chair’s bucking now,” said Dan matter-of-factly. We looked at each other with wide-eyed “uh-oh” expressions. “We’ll get each other out, right?”

I nodded. Somehow I knew and he knew that 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. “Yeah, we can do it.”

“Wait, I have an idea,” he said.

Dan’s chair is equipped with elevating footrests along with an elevating seat and a reclining back. It’s like a recliner on wheels. He inclined his footrests all the way up, increasing the amount of distance between his feet and the grass. Getting his footrests out of the way, and the resistance they created, gave his front wheels direct access to the grass. Dan gunned his chair forward. Wheels crunched forward over the grass and Dan drove free at last. The weight of worry and the fear of failure were lifted. We could do this on our own.

With intrepidity Dan drove the last few feet and pulled up to the tree. With a frail arm he reached out and took hold of a low-hanging branch. A wind blew across the field and the grass bowed and cheered, 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 the world, or inspired the masses. It was the look of a man who stands atop the highest mountain, sails the widest sea, plants a flag on the moon. And this all seemed so profound simply because we grew up learning that this is something we can not do, because other people fear for us where we should fear nothing, because other people can just walk there but we have to sail a sea.

We traveled back with a new sense of domination: the domination of our own lives.

I had my camcorder that year, the journey captured on film. Once we’d returned across the field, Dan shared his thoughts.

“Well, now, here we are at the end and just thinking about what it means,” Dan began, sitting by the trees where we started. “This entire idea was born of our own independent ambition, our own courage, our own adventurous spirits. We saw something—the field—and we took it. We conquered it. If only the other kids here could see that, and could do it themselves, forge their own paths through their own fields, without people tagging along, 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.

“On the first night of the week we played capture the flag and there were no flags captured and Dick said, ‘There are no winners.’ And on Friday night we went to the Red Sox game and we had to leave early. Once again: no winners….

“But after this, who actually believes that?” Dan looked off over the field and smiled.

When you look at the bright faces of these children and understand what they go through, you realize that this disease is worse than evolution’s joke. This disease ruins these children’s bodies and steals their lives. They will never know so much that others take for granted, yet they will know too much in their short lives. They know they make the able-bodied uncomfortable. They’ve ignored so many stares. Many flinch upon seeing them. These children see that flinch too, and it stays with them deep in their hearts and souls. They know they’re different and that hurts, because they know they’re just the same.

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