Once Upon a Wish (24 page)

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 that 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.”

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.

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.