A Fight To Be Heard

A rare disorder left him deaf, blind, and quadriplegic. Then the county took away his voice.

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?"

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