Once Upon a Wish (25 page)

The smack of Garrett’s hand on the side of the pool was like a snap of his fingers, breaking Linda out of her nightmarish trance—a reality check. Her son was healed. Dystonia was not coming back.

She finally believed.

   7   

Garrett walked through sixth grade flawlessly. He excelled in school as always, maintained straight As, and played basketball once again. This time, he could run steadily, controllably, up and down the court, his legs and mind strong. He did not stumble clumsily the way he had in fifth grade, when he was on the floor more than he was on his feet, when standing still to catch the basketball was impossible, when baskets were made by pure luck.

He spent his afternoons swimming in his backyard pool and venturing on bike with his parents through the area’s most scenic spots—Lake Massabesic in Manchester, New Hampshire, and Vermont’s Killington Peak in the Green Mountains. With his Dystonia still concealed, Garrett continued all the things he loved—spending time outdoors, running around with his friends.

One afternoon, during a game of football with neighborhood kids, Garrett ran the length of the grassy lawn, football cradled safely, touchdown the only thing on his mind. He ran and dodged beneath the bright sun on that free, summer day, when another
player, a kid much shorter and smaller than Garrett, crashed into his body, sending a rush of instant, numbed pain.

Garrett walked to the sidelines of their playing field and sat down, holding his left wrist, as sharp tingles took away any feeling left in his arm. It was the same feeling that had washed over his right arm after his fall at the rock climbing gym, the same feeling he had when he was eleven and sprained his ankle after jumping from a picnic table to slam dunk a basketball. He knew the feeling. When his wrist swelled to double, triple its size, he knew it was broken.

Again, his wrist was reset and cast, and while the bone slowly healed, taking back its strength and shape, Dystonia came out from hiding, creeping through Garrett’s body like a selfish snake. He remembered Dr. Sharma’s words—“Our bodies hold the genes for specific diseases, but most of us go our whole lives without those genes blooming. Injuries can sometimes trigger those genes and activate the disease.”

Dr. Sharma was certain that Garrett’s first fall, his first break, at the rock climbing gym had released the disease, had enabled its existence. Garrett wondered if this accident, this break, would do the same.

Within a week, he knew.

His body, once again, became uncontrollable, its movements sporadic and infuriating. But this time, it wasn’t a stranger; it was all too familiar.

Linda, who worked as a teaching coach in the school district, made frequent visits to Garrett’s junior high school and looked through the windows of his classrooms as she walked down the halls. She watched quietly, from a distance, as her son’s body jolted in his chair, his head thrown back, his body, once again, out of control.

It was time to increase his medicine. Half a pill, no improvement. One pill, a little. Over time, with more and more pills, the medicine would keep Dystonia out of Garrett’s mind until it forced its way back in, only to become defeated again by another pill.

Garrett got better, then worse, better, worse, throughout the seventh grade, until he was taking eleven pills a day. A strong force in his body, silenced but not killed, Dystonia always found its way back in, until Garrett was in the eighth grade and no amount of medicine was working. Its voice, its presence, was too loud, too demanding.

Garrett fought it with all his strength, body versus mind. He could feel the dance of his muscles in class, the way they seized up, clenched, jerked, twisted. With fingertips gripping the bottom of his chair, his back stiff, muscles tense, mind focused, he would hold himself that way as long as he could, until Dystonia squeezed its way through the strength of his mind.

During finals at the end of the year, the disease forced him onto the ground. He took his advanced algebra test on the classroom floor, the only place he could keep somewhat still as his body pulled at him, demanding attention.

Garrett’s wheelchair remained in their garage that summer as he fumbled through the house, lunging, jumping, crawling, running clumsily, and holding on to furniture. He used it only in public; his freedom, what was left of it, remaining at home, where there was no shame in crawling down the halls on all fours, sometimes his body’s only way of getting from one place to the next.

It was time, once again, to see Dr. Sharma, and though she offered to increase Garrett’s medicine, they all knew it was not going to work. Dystonia was determined to own and control his body.

“I want you to consider deep brain stimulation surgery,” Dr. Sharma said, explaining that the surgery would involve implanting
two leads into Garrett’s brain, a wire leading to a battery in his chest. The device would reroute his brain activity with electric impulses.

Brain surgery.

Those two words sent Garrett’s head into his hands, elbows to his knees, stomach into his throat. He was either going to throw up or pass out, or both. He sat there for forty-five minutes, speechless, head in hands, face white, sweat dripping down his back. He could not even handle the thought of getting poked by a needle or having his blood drawn. Brain surgery was out of the question.

Mike, who had been to every one of Garrett’s doctor’s appointments, could not make it to this one, and it was up to Linda to choke down her shock, letting out only words of comfort and encouragement. This was something they needed to consider, or Garrett’s fate would eventually lead him to bed for the rest of his life.

It was the biggest decision that they, as a family, would ever have to make. They researched the surgery online, read books, talked to several of Dr. Sharma’s patients, each of whom had some level of improvement with the surgery.

“We’ve been very successful with this surgery,” Dr. Sharma had reassured them.

The decision was never far from their minds. Debating it became a part of every meal, every activity, every moment. Did they let Dystonia take over completely, leaving Garrett’s body a living shell, a trap for his mind? Or did they opt for surgery, with all its risks, all its possible complications?

During good moments, when Garrett’s body twisted less, teasing with false hopes of normalcy, the decision was easy—no surgery. No probing, no drilling, no change. But in the next moment, when he thrashed and twisted and jerked, Garrett knew he had to at least consider the surgery, at least entertain the idea that it might actually work, that he might get his body back, his control.

After a month, they made a decision. Mike and Linda wanted their son to have a good life, and Garrett wanted his life back, despite the risk, in spite of his fear of needles, probes, hospitals, and doctors. He was going to have the surgery. Every day his body was drifting further and further away from him, and if surgery was the only way to get it back, that’s what he was going to do.

   8   

Garrett thought he could make it through his freshman year of high school and undergo surgery the following summer, but when many of his nights became battles with his body, hours spent pinning himself between his bed and a chair in an effort to stop from moving long enough to fall asleep, he and his parents decided it was time. He was physically and mentally tired of fighting it, only to lose every single time.

They scheduled the surgery for March, four months later, and Garrett, convinced it was going to work, remained determined to live the rest of his life with this disease as independently as possible. He was no longer in the fourth grade with the imagination of a child, the imagination that could turn a wheelchair into a race car. He no longer viewed the wheelchair as freedom the way he had when he was ten—it had become a cage in his mind, something that controlled and owned him.

The pills had made him better for a short period of time, had allowed him to walk and experience life the way he had before Dystonia ever entered it. That freedom had become a daunting tease. For Garrett, being confined to a wheelchair meant reverting, taking steps back in time, back in a direction he never again wanted to go. But while Garrett viewed it as his prison, Mike and Linda, over time, had started to see the wheelchair as his release, a way out, a way back into the world.

A few months before, as his condition worsened daily, they took a trip to Vancouver, Canada, and Seattle, Washington, determined to focus on the things Garrett was still able to do. They had learned over the years to work with what they had, to do what they could do to live life to its fullest. They knew their reinvention as game players, cookie bakers, movie watchers, was no longer enough, so after considering all of their options, they concluded, “Garrett cannot stand, but he can sit. He cannot walk, but he can float.” And from there, the idea was born to take Garrett paragliding.

Strapped to an instructor, Linda ran with all her might, feet pounding the earth beneath, eyes on the endless blue sky ahead as she plunged from the end of a mountain where time stopped, life paused, before gliding through the crisp air, white-tipped Mount Rainier in the distance, the city of Seattle below.

She coasted to the ground and watched Garrett, who ran as fast as he could—the one thing Dystonia had never taken from him—as he jumped from the edge, time, once again, standing still, nothing but that moment existing.

He floated, body still, dangling, as his mom watched from below, his dad waiting his turn.

Living by their newfound determination to continue doing the things Garrett could do despite his disease, during their trip they had already kayaked with whales, biked down the Freund Canyon Trail, rafted down the Wenatchee River, and now they were freefalling through time, emotions, reality. Their hope was renewed.

Garrett spent the next few months on his hands and knees, up against his hallway walls, running and collapsing, jumping and crawling, until the first day of ninth grade, a day he had been dreading all summer. High school was a time to impress the girls, hold their hands in the halls, fit in. A wheelchair allowed for none of those things.

As Linda drove him to school that day, wheelchair in the trunk, Garrett stared out the window. He didn’t say a word. He spent his first few weeks worrying about how he would maneuver through school—a campus with four levels on one side, five on the other, hallways packed with rambunctious teenagers. His thoughts became less and less about schoolwork and more about how he would make it from one class to the next.