One doctor prescribed Ritalin to help with symptoms—body movements, impulsivity—similar to Attention Deficit Disorder (ADD), while another recommended deep muscle massage, which he tried for four painful months. They heard, “This is so strange” from one doctor and “I’ve never seen this before” from another.
After seeing more than a handful of doctors, one told Garrett that he was pushing his body too hard with physical activity, while another had the nerve to insist he was making it all up, suggesting he visit a psychologist.
“He’s too coordinated,” the doctor said after conducting a series of standard tests—taps on the knees to check reflexes, challenges to hold his hands in place without moving—tests that Garrett had been through a dozen times.
Making it up? Linda asked herself.
After twelve different doctors—twelve misdiagnoses—and no explanation for the increasingly strange movements of her son’s body, she let herself entertain the doctor’s diagnosis. What if Garrett was making it up?
She let her mind dip into a dark place—Did something traumatize him that I am unaware of? Was he hurt at some point in his life and I didn’t protect him? Was there some behavioral reason Garrett was making everything up, craving some sort of attention?
Deep down, she knew her son—knew he wouldn’t make something like this up. But even deeper down, in the quiet of her soul, she questioned it, questioned why twelve different doctors had not been able to give them a diagnosis.
4
Linda, left with her own thoughts, tormented by that doctor’s words, watched as Garrett continued his life, despite his challenges. He remained hopeful and joined Vertical Dream’s rock climbing team, practicing three times a week, and asked his parents to build a rock climbing wall in their garage. They worked as a family all summer, drilling thousands of holes into plywood, placing endless climbing routes along the walls and ceiling.
Garrett spent hours on that wall, climbing, rappelling, and climbing again. He pushed himself, stretching from hold to hold, perfecting challenging angles, practicing perfect form. He gained strength with repetition, stability by climbing with a hacky sack balanced on his head—an exercise learned from competing on the climbing team—and confidence to maneuver holds, quickly and efficiently, by playing games of tag on the wall with his friends.
Toward the end of fourth grade, Garrett competed in divisionals, hoping for a place in nationals. Climbers from all over New England gathered for the divisional competition with hopes of qualifying for nationals, and Garrett, competing against other kids his age, reached for the wall.
Mike and Linda watched from below as their son climbed with the technique of a professional, the devotion of an athlete. He stretched great distances to reach holds marked with colored tape of the courses he was following, gripped tightly to the most difficult holds—smooth and rounded “slopers”—and reached the tops of every course without falling. As he climbed, dedication dripping down the sides of his face, Linda wanted to scream, “Reach to the left! Twist to the right!”
They could see from below the exact route he should have been taking, the holds he should have been grabbing, the perfect placements for his feet. With every pause, every hesitation, Linda wanted to holler guidance, shout direction. Instead, she watched. She knew what Garrett wanted to do, knew that his body would not listen.
Mike also knew in that moment that his son was not the same climber he had always been, and that he may never be again. It was obvious that Garrett’s nimble mind, for some unknown reason, no longer belonged to the same body—this was no longer the body of an athlete, of a competitive climber.
He’s done, Mike thought.
Garrett qualified for nationals that day, but while his family and friends rejoiced, he knew deep down, in the depths of his intuition, that competing was not going to be an option. He knew that, while on the wall, his mind had told his body to twist left, and it remained. He had told it to turn to the right, to reach for the next hold, and it did not listen. The twist that had started in his wrist, the involuntary way it turned away from his body, was just the start. He knew his body. He knew the way it should move, the way it should obey. And it no longer did.
In the midst of celebrating his feat, his placement in nationals, there was something unspoken between Garrett and his parents. They all knew that competing was not going to be an option.
That summer, an orthopedic doctor from Boston’s Children’s Hospital confirmed their concern and, in addition to advising Garrett not to compete, placed him on crutches.
“We need to keep him off his legs,” the doctor said.
There was still no diagnosis, no explanation for the way Garrett’s body was becoming a stranger to him. The way it moved, the small spasms in his back, the jutting of his legs, and the funny way he sometimes walked remained mysteries.
The Stuarts had always defined themselves as a traveling family, an outdoorsy family, an adventurous family. Garrett was only ten years old and had already traveled to more places than most adults would see in a lifetime. He had canoed and eaten termites in Costa Rica and held koala bears and tasted green ants in Australia. From the time he was a toddler, they had traveled together, camped, hiked, rock climbed, mountain biked, and skied.
It was time to reinvent themselves. Linda cheerfully bought games and set them up every evening. They couldn’t play outdoors, so their adventures would continue indoors. They played Yahtzee, canasta, and backgammon. They made popcorn and cookies, signed up for Netflix, and watched endless movies. Garrett, lost in his mother’s redefined world, her optimism, escaped to other worlds through books. He joined the adventures of Alex Rider, a fourteen-year-old spy in a series of books by Anthony Horowitz, and followed teenage criminal mastermind Artemis Fowl in a series of science fiction by Eoin Colfer.
On the outside, Garrett maintained a smile and looked untouched by the reality of his situation: not being able to play sports in the street with his friends, ride his bike, live the life of a kid.
On the inside, he was lost. Confused. Anxiously awaiting the day for a diagnosis, a reason for his body’s rejection of his mind’s instruction.
By the end of the summer—three months of fumbling through the house, through life, on crutches—Garrett’s condition worsened. Barely able to walk, Mike and Linda took him to see his primary doctor, Dr. Roger Wicksman, for yet another referral to another specialist. As Garrett lay on the long, cushioned table, Dr. Wicksman’s hands digging deeply into his muscles, Garrett grabbed at its sides, tearing strips of thin, white paper lining the table.
As Dr. Wicksman massaged his legs and hips, hoping to loosen and separate the muscles, Garrett ripped big pieces of the paper into smaller pieces, smaller and smaller, until little piles of white formed on each side of the table. This massage, called Rolfing, took place at every appointment and was a painful technique Dr. Wicksman thought would slow the progress and intensity of Garrett’s condition—whatever it was.
“Okay, we’ll see you in a few weeks,” Dr. Wicksman said when he was finished. As the doctor left the room, Mike, Linda, and Garrett stood, and as Mike followed Linda out the door, they turned to see Garrett standing in place near the table.
“C’mon, sweetie, let’s go,” Linda said.
“Mom, I can’t,” Garrett said. “I can’t move my legs.”
He stood as still as an old tree, its roots deep in the ground.
“What do you mean you can’t walk?” Mike asked, stepping toward his son. He placed Garrett’s arm around his shoulder for support as Linda held onto the other side of him.
“My legs won’t move,” Garrett said, panic creeping to the edge of his mind, pushed back by his parents’ encouragement.
“You’re okay,” Linda said calmly. “I’m just gonna go get Dr. Wicksman.”
She returned with the doctor, who took one good look at Garrett and said, “He’s fine. Looks like he’ll just need to use a walker for a short period of time until his body recovers from the
intensity of the Rolfing session.”
He’s fine, Linda thought, mocking the doctor’s words. What do you mean, ‘He’s fine’? He can’t move his body!
With an arm draped over her shoulder, the other around Mike, Garrett’s weight was too much for Linda. She slowly ducked beneath, letting his arm fall, the burden becoming Mike’s. She took one last look through tears before leaving the room. Hunched and frail like an old man, her ten-year-old son’s feet scratched along the doctor’s office floor, barely moving, as Mike guided him across the room toward the door.
There were two escapes from Dr. Wicksman’s office, but none from Linda’s mind. As she made her way down one of the hallways of the office, Mike and Garrett slowly making their way down the other, images of the way Garrett’s wrist had twisted when this all began more than a year ago, the way his body had gradually become a stranger to him, to them all, raced through her head at a dizzying rate. Her tears, which had remained invisible in her imaginary world where everything was okay until now, fell and became real.
This was no magical adventure. There were no poisonous berries hanging from make-believe, human-eating trees in this world. Bilbo and Frodo did not exist. Linda could not laugh or pretend her way out of what was happening. Garrett’s response of “fine” when asked how he was feeling could no longer fake its way to “suitable answer” status in her mind. This was real. Her son could not walk.
As a family, they had lived as though the elephant in the room would stomp its feet, crushing them, if they acknowledged that anything was wrong, acknowledged its existence. Videos Linda had taken of her son, proof to doctors who heartlessly accused him of making it up, were sugarcoated with Garrett’s attempt to mask the severity of his condition by fighting against his body.
When his leg jutted outward, announcing to the world that something was terribly wrong, he would turn it in, painfully forcing it back to normal. If he didn’t look sick, he wasn’t. If he remained strong, it might go away. Mike, Garrett, and Linda had kept all their fears, all their worries, inside. Three souls, countless secrets.
If they made cookies and played games, life could remain normal until a diagnosis made its way into their lives. Until then, they were a happy, normal family.
But not on that day. When Linda saw Garrett’s body fail him, completely detach itself from his mind, she lost it. Everything became real in that moment, and she could no longer pretend. She sobbed quietly, afraid of the long hallways echoing her cries. But it was too late. Garrett came around the corner, held up by his father, and saw her face.
“What’s the matter, Mom?” he said, terrified eyes.
Doesn’t he know? she thought.
“Well, I don’t know,” she said hesitantly, wiping away tears, evidence of weakness. “The fact that you can’t walk?”
She posed it as a question, a small part of her hoping that the answer could be changed. But she knew it couldn’t.
She reached for Garrett, hugging him tighter than she ever had before, as tears slid down his cheek. They both silently realized in that moment how important her positive outlook, the “Pollyanna” world she had created, was in their lives. He needed her to pretend, and together, in their embrace, they re-entered that world.
Linda never broke down in front of him again.
5
They left Dr. Wicksman’s office, went straight to the pharmacy to pick up a walker, and drove home, where Mike and Linda taught Garrett to walk for the second time in his life. Only this time, he wasn’t a one-year-old boy with toddler ambition and a healthy body.
His legs, his body, were broken. Mike and Linda taught him to push the walker forward, then shuffle his legs to catch up. Push, shuffle. Push, shuffle.
Slowly, over time, his mind’s determination pushed his leg forward, then eventually forced his feet to motion, heel to toe, heel to toe, and his other leg slowly began to follow. Garrett maneuvered through fifth grade using a walker, crutches, walking sticks, or his own feet, depending on the day.
Over time, the stranger that was his own body, unknown and unwanted, was becoming more understandable. Garrett was learning its spasms, its strange, sporadic, and involuntary movements that completely took away his ability to walk some days, hindering his ability on other days. He was learning to navigate his limitations.
On days his body would allow him to walk, Garrett made his way down the halls of his elementary school backward, chatting with friends as they walked normally, facing him. He grabbed onto walls in class, clutched desks, walked backward, working against his body’s desire to contort. As the school year dragged on, his attempt at normalcy became much more painful, the kids at school becoming less and less tolerant, more and more skeptical.
“There’s nothing wrong with you,” they would say when they saw him running at recess on good days, jumping from the wheelchair to catch a football.
There was nothing he could say to prove something was wrong. Nothing the doctors could say. It had been three years since his body had started its process of becoming a stranger, and there were no explanations—none for Garrett, none for his parents, none for his doctors, none for the kids at school.
On the day Linda took Garrett to get a wheelchair, her voice pushed through the lump in her throat.
“That one looks fun!” she said with as much excitement as her saddened heart would allow, pointing to a red wheelchair that said “Quickie” on the back.
Garrett stumbled across the room and climbed into Quickie, taking off immediately, sending the front end into the air. Arms in full motion, Garrett raced around the room, up and down a long ramp used for learning to ride. He practiced wheelies with the proudest smile.
“I can go anywhere I want!” Garrett hollered to his mom, zooming by. He had never felt so free.
Friends pushed him around campus at school, taking turns “chauffeuring” him around, and the wheelchair allowed Garrett to participate in sports and school activities. It was giving him back his life.
On a field trip to the Museum of Science in Boston, Garrett struggled up and down stairs, on and off subways, in and out of the museum. The twists of his body, the debilitating spasms of his muscles, made walking backward easier than stumbling forward and made running easier than walking in either direction. Getting on the subway to leave the museum, he lunged from his wheelchair, ran, and collapsed on his hands and knees before crawling quickly, racing against his body’s attempt to stop him with involuntary movements.
Dirty looks from strangers, people on the street who were convinced, like the doctor, that he was faking it, followed him around Boston, onto the subway, but Garrett didn’t care. At least he was outside, part of the world. He wasn’t going to let doubts from society take away the abilities he had left—walking backward and sporadic running. For some reason, his body hadn’t yet taken those capabilities away from him.
He was going to hold onto them until the day he knew why his body was becoming an out-of-control stranger—and that day came toward the end of fifth grade.
“I think it’s a condition called Dystonia,” said a doctor from the Spaulding Rehabilitation Hospital in Boston. He was one of the few doctors left in New Hampshire or in Boston whom Garrett and his parents hadn’t seen. The doctor told them he had recently heard of a patient with the disease.
“If you had come to see me six months ago, I wouldn’t have been able to help you,” he said before referring them to Dr. Nutan Sharma, a Dystonia specialist from the Neuroscience Center at Massachusetts General Hospital.
To a ten-year-old child, an answer meant a cure. The doctor would fix it, and he could continue his active life. To his parents, a possible name attached to his son’s condition meant a lot of research and, that night, a lot of tears.
They knew that running a Google search on an illness could potentially come with sometimes inaccurate, frightening information—literature that could kill you with worry. But when they searched Dystonia that night, long after Garrett was in bed, reassured tha
t everything would be just fine, not a written word was needed. Pictures of bodies, twisted like pretzels, looked almost inhuman, unnatural, and impossible the way they bent and contorted.
Videos were worse. Mike and Linda watched footage of these twisted bodies attempting to stand and walk with horrific, jerky movement, many of them with progressed Dystonia twisted and bedridden for life. With thoughts of any of these bodies belonging to Garrett, they Google searched and cried, hugged, talked, and cried some more, all night.
Through tears, they read that the neurological mechanism in Garrett’s brain, the part that makes his muscles relax when not in use, was not functioning properly. Linda thought back to the time they were camping and Garrett couldn’t keep up. It was the start of Dystonia. She remembered how his wrist had started twisting, his leg began jutting. That was Dystonia starting to take over. Garrett’s progression from spasms and stumbling to binding him to a wheelchair meant Dystonia was winning.
Linda cried harder than she had ever cried as they continued reading, learning how involuntary muscle contractions force the body into repetitive, twisting movements and awkward postures.
Was this their son’s future: lying in a bed and twisting into non-existence?
To uncover the truth, to find the answer, they visited Dr. Sharma, a leading expert on Dystonia and a clinical researcher of the disease. And they trusted her instantly.
“We’re going to do everything we can to get Garrett’s Dystonia under control,” she said to Linda and Mike.
Then she turned to Garrett. “This is what’s happening to your body,” she said, dark, caring eyes staring into Garrett’s frightened face. She drew a picture of the brain.
“This is the part where the brain tells your muscles what to do,” she said, pointing, “and it isn’t working right, so we’re going to give you medicine that will guide your muscles and tell them what to do.”
Once Upon a Wish Page 14