A rare disorder left him deaf, blind, and quadriplegic.Then the county took away his voice.
A Fight To Be Heard
STORY BY MATT SNYDERS
PHOTOS BY KRIS DRAKE
It's a Thursday afternoon and Christopher Harmon is busy making the final preparations for a public reading of his debut screenplay, Sparkle, Serena! From his modest, well-lit apartment in Burnsville, the author/screenwriter/producer cracks wise over the phone with his publicist, Kris Howland.
"I'm showing up in my birthday suit, Kris," he declares, his dark eyes glimmering impishly. "You got a problem with that?"
They get down to discussing his actual wardrobe: light blue polo shirt, a brand-new pair of Dockers. "Don't worry, they fit fine," Harmon says.
"So about the food?" Howland asks.
"Cheese, crackers, watermelon."
"Strawberries?"
"Sure, strawberries."
"Coffee?"
"Why not?"
Harmon verifies that every detail is going according to plan. All without saying a word.
Deaf, legally blind, quadriplegic, and dependent on a respirator, the 37-year-old sits peacefully in his wheelchair as a ventilator hisses behind him, coaxing air into his lungs. Next to him, a young, blond assistant cradles the phone on her shoulder and deftly flashes sign language to him. The interpreter, a trained lip-reader, peers at his mouth and relays his response over the phone, simultaneously signing his words back to him so he can make sure her interpretations are accurate. So polished is the process that the conversation unfolds as naturally as the spoken word.
"He could very well be the most handicapped person in the world," Howland says later. "It's simply amazing what he's been able to do."
In 1976, Al and Robin Harmon noticed that their six-year-old son Christopher ran a bit slow, but they thought little of it. He was a happy child—a little hyper at times, sure, but certainly not unhealthy. So what if Christopher lagged behind the other kids as they chased the ice-cream truck down the street in their Indianapolis neighborhood?
But as the months rolled by, the Harmons began to worry that something was wrong. Al remembers speaking to Christopher at the supper table and noticing his unfocused glance.
"He was more or less looking at my hairline," he recalls. "Of course, when your kid refuses to look you in the eye, you're first thought isn't, 'Oh, he must have a serious neurological condition.'"
The Harmons suspected that their son was simply rebelling. He ignored calls for supper and swerved his bike recklessly through oncoming traffic. Sometimes, he'd drop to the floor in an uncoordinated heap, for no apparent reason.
Exasperated, the Harmons sought professional advice at Indiana Regional Medical Center. The doctor suggested that Christopher might be rebelling because of his new baby sister, Jamie.
"The doctors told us he was just going through a sibling rivalry phase," says Robin. "They told us to exercise stricter discipline."
This only compounded his bad behavior. He lashed out at his sister and playmates and constantly lied to avoid further reprimands.
"I was being disciplined and I didn't know why," Christopher says. "I was acting like a cornered animal."
One day, as he sat at a table lost in his coloring book, his head jolted back and his cheek exploded in hot pain. He realized he'd been hit. "I said to my parents, 'Why'd you hit me?' They said, 'You know why.' And of course, I had no idea."
His parents brought him back to the hospital. Sitting in a booth, Christopher was instructed to repeat the words he heard.
"Hot dog," a voice said.
"Oggleman," replied Christopher.
It was clear his senses were weakening, but doctors couldn't offer a diagnosis. The quest for answers eventually led to the Children's Hospital of Philadelphia, where Al and Robin learned that their son might be suffering from spinocerebellar degeneration, a rare disorder that affects the nervous system. His case was complicated by the fact that he had contracted meningitis as an infant in Japan, where his father was stationed as an army intelligence officer.
"It's possible that his spinocerebellar degeneration is somehow linked to meningitis," says Dr. Kenneth Olson, Harmon's general physician since 1992, "but there's no way to be certain."
As is common with spinocerebellar degeneration, Harmon was experiencing the onset of ataxia—the progressive degeneration of muscle control and balance. He could make out basic vowel sounds, but couldn't discern consonants. And he had limited central vision.
But he could still read. He had to crouch down within six inches of the page to see the text, but he devoured 10 books a week, losing himself in the mysteries of Victor Appleton, Arthur Conan Doyle, and Ellery Queen. Shortly after moving with his family to a split-level in Eden Prairie, his bedroom bookshelf swelled with paperbacks.
"You should have seen my mother and me when we went to the library," Christopher recalls. "I always checked out the maximum number of books allowed. I could walk, but I wasn't very balanced, so my mother—a very petite lady—had to carry them all. We'd stagger out of the library like a couple of drunks: me because of my condition, her because of the enormous weight."
Around this time, a 10-year-old Christopher made his first lifelong friend. Kelly Dunn went to a neighboring school but attended the same adapted physical education class. During their monthly field trips, the always-cheerful Christopher inevitably greeted her with the same line: "Hey, remember me?"
Dunn, who was blind herself, was happy to hear him. "He was always really fun," she says. "He was kind of a rabble-rouser. He could still move around some at this point, and he'd instigate water fights during the field trips, or sometimes even food fights."
The two stayed in contact through high school. They'd often dine out, her reading Braille with one hand and signing to him with the other. "We probably looked pretty odd together," Dunn says with a laugh.
Harmon went on to graduate from Jefferson High School in Bloomington in 1988 in the top 10 percent of his class. At his graduation ceremony, to a crowd of more than 6,000 people in the now-defunct Met Center arena, he delivered a speech that moved many listeners to tears.
"No one can make you feel inferior without your permission," he said from the dais, quoting Eleanor Roosevelt.
Christopher Harmon relies on interpreter Joan Lisi-McCoy to communicate
"He used to come down here and visit us and we'd take him out to eat very often," says his grandmother, Mildred Longo, who lives in Bradenton Beach, Florida. "He'd order a steak and the little guy would eat the whole darn thing."
In 1996, Harmon was eating with a friend at Boogie's Diner in the Mall of America when he noticed something wrong: He was having trouble swallowing. A sharp fragment of a tortilla chip lodged in the back of his throat. Terrified the shard would go down the wrong pipe if he inhaled too deeply, Harmon limited his breathing to hesitant gulps for 10 anxious minutes until it softened into a harmless pulp.
The incident would prove a harbinger. Harmon went on to choke three times during the next two years, each episode reinforcing what he'd long suspected but was reluctant to admit: The ataxia was creeping into his throat.
Afraid of asphyxiating, the young man who once devoured 12-ounce tenderloins now found himself eating spaghetti, Cream of Wheat, and generic stews out of a blender. His five-foot-seven frame eroded to a paltry 73 pounds.
"They could have used me as a model for the human skeleton," Harmon says. "You could see every one of my bones."
In November 1997, doctors told Harmon that if he wished to survive, he'd need a gastrostomy tube, or G-tube—a plastic hose that feeds nourishment directly into the stomach. He'd never eat solid food again—not even the soft, potato-based spaghetti his mom's Italian relatives made from scratch.
"I felt a sinking feeling when they told me that," says Harmon. "My soul was crushed."
Two months after going on the G-tube, he was wracked with excruciating stomach pains. Never one to show his suffering—damages to his nerves had bolstered his already-high threshold for pain—Harmon now fought back tears and was constantly throwing up.
At Fairview Ridges Hospital in Burnsville, doctors performed an endoscopy—a camera survey of the digestive tract via the throat—and discovered that an imbedded section of the G-tube was rubbing against his stomach and lower intestine.
After the endoscopy, Christopher was sitting with his mother in the hospital room when he turned to her and uttered what would be his last audible words: "Mom," he said meekly, "I'm going to puke."
He lurched forward and a crimson geyser expelled from his mouth. Screaming hysterically, Robin lunged forward and took her son in her arms, watching helplessly as his eyes rolled back.
Doctors rushed in and escorted her out of the blood-splattered room. An artery in Christopher's stomach had developed an ulcer from rubbing against the implanted part of the G-tube. She had just witnessed its rupture.
As doctors struggled to staunch the bleeding, Robin paced the waiting room. A doctor emerged 15 minutes later and gave her the news.
"He's gone," he said. "Do you want us to revive him?"
Robin was well aware that Christopher's living will ruled out life support. Did she dare go against his wishes? After all he'd been through?
She thought about his life up to that point. She thought about the struggles, the hardships. But most of all, she thought about his unrealized potential.
"Revive him," she ordered.
Christopher remained in grave condition for three and a half weeks. He developed double pneumonia as a result of aspirating a substantial amount of blood. Surgeons performed a tracheotomy to keep him breathing. His sleep apnea and ever-deteriorating breathing muscles meant the tracheotomy would be permanent. Christopher remained unconscious, oblivious to the grim news awaiting him.
When he regained consciousness, his foster caretaker signed to him his options: He could close his eyes and slowly let go, or he could fight. If he chose to fight, she warned, his life would be harder than it had ever been. He would now be on a respirator, in addition to the G-tube. Worse, his voice would be silenced forever. What would it be?
Christopher's lips mouthed one word: "Fight."
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