A Fight To Be Heard
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."
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.
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.
After he was shown through the door of Harmon's home in Eagan, Filek saw a frail figure napping on the blue velvet couch. A strange scene for a job interview, he thought.
He sat down next to Harmon, who was now awake. The two began signing and discovered that they had much in common: their passion for trading cards, their love of science fiction—they had even attended the same karate class together as kids.
What was intended to be a 15-minute interview turned into a two-hour conversation of frenzied hand signals and, eventually, a lifelong friendship.
"He's offered me so much wisdom, strength, and support though the years," says the boyish, goateed Filek. "He was there for me when I was having relationship problems, when I was frustrated with school. He's just always been there."
But Filek noticed a change in his friend after the tracheotomy. "I'd come visit him and that brilliant wit and all the fun were gone." Now the two sat in awkward silence, Harmon staring into space.
Filek knew his friend was depressed, but he didn't know how bad it was until March 1999, when he was confronted with his most difficult assignment. Harmon asked him to read a letter aloud to his immediate family: a formal announcement of his intent to go off his respirator and G-tube on June 2, less than three months later. Harmon was essentially pulling the plug on himself.
His reasoning was coldly existential. Life, as he saw it, entailed eating and breathing and moving. And here he was on a G-tube, respirator, and wheelchair. How could he go on living when he embodied all the opposite qualities of life?
Initially, Filek refused to participate, but ultimately decided he had an obligation to communicate his friend's wishes, even if he disagreed.
The Harmons filed into the living room and Filek read the letter. "I cannot bear the idea of living as a machine," Harmon wrote. "I entered this world as a human being and I intend to leave this world as a human being."
His mom pleaded for him to reconsider. His physician, Dr. Olson, begged him not to do it. "I understand why you want to do this," he said. "But I want you to understand how much we don't want you to do this."
But no one could sway him. No one, that is, except an old friend who showed up unexpectedly. Kelly Dunn, whom he hadn't seen in seven years, told Christopher that she didn't want the burden of breaking the news to her six-year-old daughter Megan, whom Christopher had recently met.
"If you do this, you're going to have to be the one who explains it to her," Dunn said.
He couldn't do it.
One cold January day in 2000, Harmon received a letter from Hennepin County Adult Services. As Filek read it aloud, Harmon sank into his wheelchair.
The letter informed him that the 84 hours a week of interpreter services paid for by the county were set to expire at the end of the year and would not be renewed. He'd have no lifeline to the outside world, no way to escape the prison of his body.
"Most people don't realize how important communication is," Harmon says. "Communication is the crux of civilization."
With Filek's help, he looked up the Minnesota Disability Law Center and was directed to Bud Rosenfield. The fast-talking, passionate attorney agreed to help.
During four days of testimony in a snug conference room in the offices of Hennepin County Social Services, Rosenfield made his case before the Minnesota Department of Human Services. He argued that interpretive services were essential to Harmon's well-being. Without an interpreter, how would he tell nurses if his G-tube gave him troubles again?
The administrative appeal went before Referee Lawrence Grewach, who split the difference, ruling that Hennepin County was obligated to provide interpreter services for 40 hours each week.
But the county appealed, and District Court Judge Deborah Hedlund ruled in its favor. "Hennepin County does not have a duty to provide Christopher Harmon with interpretive services for any activity he may feel appropriate," she wrote in her March 2001 decision.
With the verdict, Harmon was plunged into solitary confinement. He lay in his bed most of the day, staring at what he could just make out as the ceiling.
His family did what it could to help. His mother hung flashing Christmas lights throughout his room in the hopes of keeping his mind stimulated. Friends scrounged up cash to pay for a few hours with an interpreter, but the money quickly ran out.
Desperate, Harmon contacted Rosenfield. "We have to appeal this," he told him. "I can't live like this."
Rosenfield was willing to carry on, though he wasn't optimistic.
"From here on out, it's only going to get tougher and tougher," Rosenfield said. "It's harder to win at the Court of Appeals level. Do you understand?"
But as summer arrived, it dawned on Rosenfield that the odds might be better than he originally thought. Reviewing the legal documents, Rosenfield realized that because Grewach had granted Harmon the 40 hours of interpreter services a week, the state had admitted that it had at least some obligation to provide for Harmon. The state had sat out the District Court appeal, leaving it to the county to fight. But with the case moving up a level, the Attorney General's Office was forced to play its hand.
"They were stuck in a catch-22," says Rosenfield. "On one hand, they didn't want the county to pay for it, because that would create a burdensome precedent for all the counties. At the same time, they couldn't claim that they had no responsibility to bear, because they were legally bound to defend the Grewach decision. So they decided to settle."
On August 1, 2001, Harmon received a call informing him that he was to meet with a representative from the Attorney General's Office later that week.
On a hot summer day, Harmon—flanked by his mother and Filek—waited at one end of a large square table. Representatives from the county, the Attorney General's Office, and the Department of Human Services explained that a federal program was on the books that gave those on medical assistance a lump sum to spend at their discretion. Although it wasn't likely to be implemented until at least a year later, the state was willing to make an exception for Harmon. He'd receive 70 hours a week of interpreter services fully funded by the state.
"We're looking at each other going, 'Pinch me, this has to be a dream,'" recalls his mother, Robin.
It was during the latter stages of this court battle that Harmon found inspiration to write.
"One night I was lying in bed crying and I asked God for death," Harmon says. "But he didn't give me death that night. He gave me a memory of 10 years prior."
Harmon remembered lying in bed as a black-and-white movie played on TV. To this day, he's unsure if it was his imagination or a burst of madness, but for a brief moment he saw the television clearly. Half-convinced his condition was miraculously cured, he tried to stand up, only to fall back down.
"I tried to remember what the movie was," Harmon says. "I found out it was Shirley Temple's The Little Princess."
Convinced the vision was a sign, Harmon bought a copy of the film and watched it over and over, his eyes inches from the screen. Set in Victorian England, the film tells the story of a young girl whose father is sent off to war. While he's away, the girl adjusts to her new life in a seminary. After her father is reported killed, the girl becomes a slave. But eventually, she manages to reunite with her injured father at a hospital.
Harmon couldn't help but draw parallels to his own life: Just as Shirley Temple's character longed to be reunited with her father while held captive in a seminary, Harmon longed for human contact while he was held captive in his own body.
Over the years, Harmon had written several stories, which he stored in a box under his bed. Now he thought he might be ready to write a full-length novel.
"Chapter one," Harmon mouthed to Filek as they both sat at the computer. "Enter. 'Locked in the Shadows.' Enter. 'October 31, 1934.' Enter. Tab. 'It's all there in the shadows. All the truths of who I am.' Enter. Tab. 'Maybe someday, I will know.' Ellipsis. 'Signed, Jessie Bell.'"
With the help of interpreters, Harmon worked 70 hours a week for four months on what would become Treasures of the Shadows, a 236-page children's book.
"I try to project my experiences and my feelings into the protagonists," Harmon says. "My imagination is all I have; I am able to live through the characters I create."
But Harmon wanted to do more than just echo the themes he saw in The Little Princess. He wanted to try his hand at writing his own screenplay.
He contacted St. Paul-based IFP Minnesota, a nonprofit organization that promotes independent filmmakers. Executive Director Jane Minton suggested that Harmon hire a veteran screenwriter to guide him through the process.
Harmon searched online and came across Doug Klozzner's homepage. A 10-year veteran of the industry, the 37-year-old musician-turned-screenwriter had written and directed a short film called "Take One" and now worked as a professional script doctor.
Harmon asked Klozzner if he would like to work with him. Klozzner was drawn to Harmon's vision, and when he discovered Harmon's bio, he realized his new client wasn't the typical aspiring screenwriter.
"Yes," replied Klozzner. "I'd be interested."
Harmon envisioned a story set in the 1800s. The protagonist was a young girl named Serena who is determined to reopen a boarded-up theater—the wellspring of her imagination—and provide costly medical aid to a young friend.
Klozzner suggested that the film be set in the present day, and to steer away from too much sugar by introducing a grittier backdrop.
And by July 23, Sparkle, Serena! was finally ready for a public reading.
Over at the Center for Independent Artists in south Minneapolis, the script's reading is almost underway. About 100 people show up for the event. Klozzner and Harmon excitedly note a few producers among the crowd. The food and coffee are in order. Harmon looks dapper in his light-blue polo shirt and Dockers. As he promised, they fit just fine.
Standing beside the semi-circle of eight actors seated in folding chairs, an interpreter reads Harmon's introductory speech. As she addresses the crowd, all eyes focus on him, for the words they are hearing are his.
"What is film?" he asks through the interpreter. "It is sound and color and motion. And look at me: I'm deaf, blind, and quadriplegic. How could I possibly pursue a career as a filmmaker when I have all the opposite qualities of film?"
There's a bit of nervous laughter, then the speech continues.
"The real movie isn't on the screen—it's in our minds. The silver screen is just a mirror that reflects what is already inside of us. I lost my voice in 1998. But through filmmaking, I've found a way to speak again."
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