A Fight To Be Heard

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

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.

 

If there was one thing that matched Harmon's hunger for reading, it was his appetite for food.

"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."

 

John Filek remembers vividly the day in 1993 that he first met Christopher. Eighteen years old at the time, Filek was an incoming freshman at the University of Minnesota and had heard about a job opening for a personal care assistant who knew sign language. Having been raised by two deaf parents, Filek was fluent.

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