Once Upon a Wish

by Rachelle Sparks

  Plain and simple. Pills would make him better. They needed to.

  But it was not guaranteed.

  Medicine was used to mask the symptoms, to place a cover over Dystonia’s ugly face, not to cure it. There was no cure.

  Dr. Sharma started by prescribing Garrett half a pill. From everything Linda had read online, most patients who were going to respond to the medicine started responding around pill two. After a week of waiting, videotaping, and watching the videos for the slightest improvement, Dr. Sharma increased his dosage. One pill.

  Garrett finished fifth grade in a wheelchair and spent his summer taking another half pill at a time. Wait a week, take half a pill. Wait a week, take another. Watching for the slightest improvement, for Garrett’s body to move just a little less, bend less, twist and spasm a little less, was pure torment for Linda.

  By pill two, she was convinced. This was not going to work.

  “It doesn’t work for everybody,” Dr. Sharma had warned, and those words haunted Linda.

  They continued their indoor activities, continued their reinvented life, as they waited and watched, still hoping to reach that magic number—that perfect number of pills that would give Garrett back his freedom.

  The magic number was six.

  For the first time in months, Garrett could almost feel his brain’s signals rushing through his overthrown body; he could almost hear their demands, imagine their shouts—“Move! Do as I say!”

  His legs, his hips, and his arms were slowly becoming his again, slowly belonging to his mind, slowly listening to its commands. As days passed, Garrett’s body succumbed to a steady flow of medicine, and he no longer questioned whether or not his body would continue to fail him, no longer wondered if he would be stuck in its shell, his mind remaining smart and capable. He no longer worried about living trapped for the rest of his life.

  Linda watched with hope as Garrett walked, but he had walked before. That’s how the disease had started. He could walk one day and not the next. He could run one day but barely be able to move the next. Was this one of those days? One of those days when, for whatever reason, Garrett’s disease let go of its grip for a few moments to tease him with false freedom?

  She could not entertain its cruelty. She could not let herself fully believe that Dystonia’s voice had been hushed forever. It was time to wait.

  6

  “Go, Garrett, go!” Linda screamed from the side of the pool at their resort in Africa.

  The hot sun beat down on them, on other tourists, on the free-roaming, wild animals beyond the walls of their resort, but Linda was only focused on one thing—Garrett.

  “Go, go, go!”

  It had been only a couple of weeks since Garrett started to walk. While Linda was still waiting for the disease to return, stick out its tongue like a mean, teasing child, they left for a trip they had planned months before—an African safari.

  Unsure of whether or not Garrett would be in a wheelchair when they planned the trip, still hoping the medicine would work, they had decided that waiting shouldn’t mean not living. It was time for an adventure—an adventure that did not include Netflix movies, card games, or baking cookies.

  When the sixth pill finally told Garrett’s brain to move his body, safely and normally, Linda’s skepticism made her drag Garrett’s wheelchair from the garage and into the back of their car before leaving for the airport. It was going with them. She wanted desperately to believe that Garrett was finally beyond the reach of Dystonia’s arms, but she couldn’t.

  They hauled the chair all throughout Africa, in and out of the van escorting them between the hotels where they stayed.

  “Crazy Americans” was written all over the driver’s face.

  “We might need it, I swear!” Linda said, feeling like a child explaining her need to drag around a big, heavy, unnecessary toy.

  From the time they had left their New Hampshire home, Garrett had walked everywhere. His body, without one flinch, one spasm, one twist or turn, never touched the wheelchair. They spent the first week of their trip at the resort in Nanyuki, Kenya, and the rest of it “glamping”—glamorous camping (hotel-style service in a large, military-type tent, complete with turned down sheets, hot showers, chocolates placed neatly on the pillows, and fresh towels daily). They had booked the trip not knowing if Garrett’s condition would allow him to “rough it,” so real camping was out of the question.

  While he would have preferred regular camping, would have chosen white water rafting down the Zambezi River or climbing Mount Meru, Garrett was satisfied with watching giraffes, gazelles, rhinos, elephants, and zebras from across the river that ran behind their resort.

  They saw baby lion cubs nibble one another’s tails, playing tug-of-war with small pieces of blankets, and, during a private van safari tour, watched a real-life episode of the Discovery Channel as two lionesses crept low, tracking with laser precision before pouncing on a helpless wildebeest. As Mike watched, enjoying the show, he was glad he had decided to add a little excitement to their trip, as he always did.

  He was the reason they had once rappelled down a waterfall in the Dominican Republic, climbed the inside of a ninety-foot-tall Strangler fig tree during a trip to Costa Rica, and ventured in canoes down the Rio Sirena with “Crocodile Dundee of the Osa Peninsula,” spotting anteaters and Jesus Christ lizards running along the water’s surface before chasing a baby alligator into the unknown. Mike was an adventure seeker with the desire to explore other countries—their people, their land, their ways—and the trip to Africa would be no different.

  In addition to taking a hot air balloon ride over a migration of a million wildebeests traveling eighteen-hundred miles from the Serengeti region of Tanzania to Kenya’s Masai Mara in search of greener grass, he had researched ways to not only view the country as tourists, but to see it through the eyes of its locals with a private escort to meet Tanzania’s Hadza tribe, one of Africa’s last tribes of hunters and gatherers.

  “How will we find them?” Linda asked before venturing into the wild.

  “You don’t find them,” said their guide, explaining that they are a nomad tribe, a wandering group that drifts like the wind. “They find you.”

  Linda, Mike, and Garrett became part of the beautiful, red clay African soil, torn by the tires of their Jeep, as it lifted in clouds from the earth and settled in thick, suffocating coats on their bodies and their vehicle. They coughed it from their lungs, wiped it from their eyes, as the Jeep drove further and deeper into Africa’s backcountry.

  Jutting rocks and dips of potholes forced them to crawl slowly along the road’s twists before suddenly, in the midst of their drive, in the middle of nowhere, Linda gasped as a man, toothless and covered only by a small piece of animal’s hide, jumped onto the hood of their jeep, dirty hands pressed against the windshield.

  She breathed a long, silent exhale as the man smiled, and she repeated the guide’s words to herself—“they find you.”

  They sure do, she thought, laughing.

  They pulled to the side of the road and followed the man to his tribe, which consisted of fifteen others. Beneath a tree sat a temporary, igloo-shaped hut made from twigs that would most likely disintegrate in a strong breeze. They spent the afternoon learning to make bows and arrows and following the Hadza to the area’s best hunting places. They were fascinated by stories of how the children walked hours to school and back, how the people shared hunted food, and showered only when it rained. They laughed and learned until the sun went down, then danced with the Hadza in the glow of the setting sun.

  It was another adventure in their travel logs.

  “Go! Go! Go!” Linda continued to shout as she watched Garrett race a little boy in their hotel swimming pool at the Sweetwaters Game Reserve near the town of Nanyuki, Kenya.

  The boys had jumped in, side by side, and Garrett, arms and legs tearing through the water, spray shining like diamonds in the sun, swam as though he had never been sick.

&nbs
p; His mind had taken back control of his body.

  Linda stood from her lounge chair, following the splash of Garrett’s stroke, perfect and determined, until his little hand slapped the hot cement on the other side of the pool, twenty-five feet from where he started. She knew he would soon be back to all of his adventures—they all would.

  She realized this as she thought of how Garrett couldn’t swim five feet just three short months ago. He couldn’t even stand in water without Dystonia grabbing and twisting his body, forcing him beneath the water to finish its selfish strangle. She had watched for months as he struggled through swim therapy, trying to let go of the pool’s side without going under, trying to stand straight without bending, trying to swim with a body determined to tangle.

  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.