December 14, 2007

The phone rings in Christopher Harmon’s small Burnsville apartment. The metronomic whir and hum of a respirator is the only other sound until a trusted assistant, Joan Lisi-McCoy, takes the call.

“Legacy Pictures,” she announces. “Joan speaking.”

Legacy Pictures is the name of Harmon’s independent film company, whose chief mission is raising the $5 million Harmon says is needed to turn his screenplay “Sparkle, Serena!” into a full-length family feature.

He’s the self-published author of a children’s book, “Treasures of the Shadows,” and is shopping around three other manuscripts for a series he calls “The Hourglass Tales.”

Harmon’s creative life is his sanctuary. Writing, fund-raising and sending dozens of query letters to would-be publishers are all in a day’s work.

Harmon, 37, is deaf and legally blind. He’s quadriplegic, takes liquid nourishment through a gastric tube and depends on the respirator most hours of the day.

A rare neurological condition called spinocerebellar degeneration has been picking off his muscle and sensory functions one by one since he was a boy.

Doctors predicted he wouldn’t live past 15. Harmon almost died twice while hospitalized for his conditions. Another time, despondent over his dark and shrinking world, he had to be talked out of doing the job himself.

He’s lived for two years in a Section 8-subsidized unit at West Apartments, a Burnsville complex for people with disabilities. Harmon has four interpreters who, between them, are with him 10 hours a day. A registered nurse or a personal-care attendant is in the apartment round the clock.

"Unable to speak, Harmon communicates by mouthing sentences to his lip-reading interpreters. The interpreters relay the words of others to him in American Sign Language. They work in close range because of Harmon’s limited vision.

The interpreters have also been the conduit for his writing, done on a computer with a large screen and oversized letters.

Conversing and writing are painstaking for Harmon, but the translation reveals a person with undimmed optimism, a wholesome wit, many friends and allies and a methodical approach to fulfilling his dreams.

Thus, he insists that calls be answered with the “Legacy Pictures” salutation.

“You never know who will call,” Harmon said, with Lisi-McCoy interpreting. “Maybe Julia Roberts will call. And I would probably faint dead on the floor for a while before I could handle the call.”

“He’s never thought like that,” said Harmon’s mother, 57-year-old Robin Anderson of Eden Prairie. “Dear God in heaven, if he can go at this full bore, then I would be so disloyal to him if I didn’t truly have those same feelings. As long as he draws breath, he’s going to do this. I no longer have those feelings that you wondered about. I did have those for quite a while. He was put on this earth for a mission, and my guess is he’s headed the right way.”

Besides, Harmon has talent, say people who ought to know, even if they’re boosters also.

“The quality of the work is there,” said Doug Klozzner, a Manhattan scriptwriter Harmon hired to refine “Sparkle, Serena!” into a screenplay. “Now it’s all perseverance and passion and drive. And if he starts to slow down, I’m going to be the first one to kick him in the ass.”

Always tenacious

Harmon was born in South Bend, Ind., the oldest of Alford Harmon and Robin Anderson’s two children. The couple divorced when he was young.

“He’s always had this drive and passion, even as an infant,” Anderson said. “His little sister was the type who just kind of roly-polied through life. Not Christopher. He was constantly making things work his way, even in infancy. … I always saw a tenacity in him.”

His health problems began with a case of spinal meningitis at age 3.

“Then, when I was 6, my sister was born. Her name is Jamie,” Harmon explained. “At that time, I started developing some behavioral problems. I was not listening to my parents and would ride my bike in front of oncoming cars.”

Sibling jealousy, said the family doctor, who advised the Harmons to be stricter with their son.

They were, but soon their son was falling over for no reason, and as he puts it, “starting to act like a caged rat.”

Testing at Indiana University revealed deficiencies in hearing, vision and balance. He got in the way of cars because he couldn’t see them. He lashed out at people in reaction to discipline he didn’t understand.

“My problems,” Harmon said, “were physical, but because of the punishment, I was developing some psychological problems. Like beating up a dog, if you do it enough, the dog will turn and attack you.”

The spinocerebellar degeneration, a form of ataxia that bottlenecks communication between the spinal cord and the cerebellum, was finally diagnosed at Children’s Hospital in Philadelphia.

Shortly after that, the family moved to Eden Prairie, where Harmon started third grade. He was in a wheelchair by then, deaf and legally blind, but scored higher than most third-graders on scholastic aptitude tests. That didn’t stop the school district from putting him in special education for a year and a half, Harmon said.

The mixed messages he got from adults in the school system produced a painful identity crisis that followed him into adulthood, he said.

“I would watch the other kids outside on the playground through the window and wish I could be with them,” Harmon said. “I would often imagine myself running around with them. I think that’s part of the reason I have such a well-developed imagination now. I think the artist inside of me was born in that special-education classroom. When you’re trapped inside your own body — can’t see, can’t hear, can’t move — you have to rely on your own powers of imagination and project yourself out to lead a normal life. ”

Harmon spent the rest of his school years in mainstream classrooms working with sign-language interpreters. He graduated with honors from Bloomington Jefferson High School in 1988. Harmon was selected to give the graduation speech at the old Met Center. Because of diminishing vocal capacity, a classmate spoke the words Harmon had spent many nights preparing.

“He had people weeping,” his mother said. “He was always a good writer. But that was the first time I really sensed a gift.”

Condition worsens

Meanwhile, his physical deterioration continued. By age 19, walking — even with assistance or a wall to lean on — was out of the question. Over a three-day period in his early 20s, he lost function in his hands. The young man whose literary tastes ran toward mystery and science fiction could no longer hold a book or type.span>

“I knew all along I had a progressive, degenerative disease,” Harmon said. “I knew that (loss of critical functions) would happen, but once it did, it really impacted my lifestyle. I became dependent on human support to do most of the things and activities of daily living. I was depressed for months. Then I got used to it and moved on. I found different ways of doing the same things.”

His swallowing muscles eventually gave out, requiring insertion of the gastric tube in November 1997. Little did Harmon know the “G-tube” would set off a new and harrowing string of crises.

He was hospitalized in January 1998 with intense stomach pain. The tube, Harmon said, was rubbing against an artery on the wall of his stomach. The artery burst while he lay in the hospital bed. Harmon vomited, violently spewing blood and aspirating it into his lungs.

“He basically drowned,” his mother said. “And blood being where it doesn’t belong turns into poison.”

Harmon nearly died.

“The doctor came out and told my mother I was gone, asking (relatives) if they want to resuscitate me,” he said. “My mother was fully aware I had a ‘DNR’ — Do Not Resuscitate — in my living will. But she told the doctor to go ahead and resuscitate me.”

Anderson admits to the transgression, saying she’d been told the will was essentially voided by the invasive procedure of inserting the G-tube.

“In a moment of panic, Mom went on a technicality,” Anderson said.

Harmon had a tracheotomy and was tethered to a respirator. No longer able to speak at all, he returned to the Eagan foster family with which he’d been living. When his care became too intense for the family to handle, he was moved to a St. Paul group home.

“There is a famous line in ‘Star Wars’ referring to Darth Vader,” Harmon said. “He was more machine than man. That’s how I felt. I looked at myself and saw all the plastic and metal inside me and all around me. I felt so much more machine than man. I didn’t want to live anymore.”

In March 1999, he made an appointment with his doctor to have the G-tube removed. Because he would stay alive for a few days, he reasoned, death would be by natural causes, not suicide.

With timing that still amazes his mother, an old friend reappeared in Harmon’s life. He had met Kelly Dunn, a flamboyant redhead who is blind, in an adaptive phy ed class back in elementary school. They remained close in high school and afterward, when Dunn attended the University of Minnesota.

After losing touch for years, Dunn reconnected with Harmon through e-mail. She visited at his foster home just when he was preparing to die.

“I don’t want to get mushy,” Harmon said, “but we found an old spark when Kelly found out what I planned to do. She told me I had to explain this to her daughter, who was 6 years old at the time.”

Harmon decided he couldn’t.

“I don’t think it’s for me to say,” Dunn says now about her role in the decision. She lives in New Brighton with daughter Megan, now 15, and works for a company that makes assistive equipment for people who are blind or have low vision.

“I just pointed out that I thought there was more in his life that he still needed to accomplish,” Dunn said. “At that time, he was going through a lot of depression. I believe in God, and I don’t believe it’s up to us to decide when we go. Obviously, there were people in his life that wanted him around.”

Harmon’s struggles weren’t over.

In 2000, he was informed that Hennepin County Adult Services wouldn’t renew funding of the 84 hours a week of interpretive services the agency provided. Aided by the Minnesota Disability Law Center, he appealed the decision. For 18 months, services were reduced to a couple of hours a day, with family members chipping in what they could, Anderson said.

“We said he’s not safe,” she explained. “He can’t communicate with the staff.”

Harmon appealed to the state Department of Human Services. An administrative referee ordered the county to restore some of the services. The county then appealed, and a district court judge ruled in its favor.

Finally, as the Harmon camp prepared its case for the state Court of Appeals, the attorney general’s office crafted a settlement agreement.

Harmon would be granted a special waiver allowing him discretionary access to a lump sum from a federal program for people on medical assistance. It restored his interpretive services to 70 hours a week.

“I laid in bed all day, no human contact,” Harmon said of his 18-month purgatory. “I was in complete isolation. That was hell. When I finally won, I was spiritually and emotionally devastated from the effects of the isolation. I didn’t want to live anymore. I asked God for death. Well, he didn’t give me death. He gave me a memory of a black-and-white movie I had seen a long time ago.”

Sparkle, Christopher

The film was “The Little Princess,” starring Shirley Temple. The movie’s plucky star, whose silver-screen smile and dimples warmed hearts during the depths of the Great Depression, remains one of Harmon’s biggest inspirations.

“When I was in isolation, I had to live through my imagination,” he said. “After I won my case, I had full-time interpretive services. That’s when I realized I had life cupped in my hands. Now I have newfound freedom that I never had before. The real question was: What the hell was I going to do with myself?”

Only with the help of interpreters who read his lips, typed his words and followed his muse could Harmon write his books and movie.span>

“I will dictate everything to the interpreter, including the keystrokes, like ‘enter,’ ‘comma,’ ‘quote,’ ‘tab,’ ‘paragraph,’ ” Harmon said.

He published “Treasures of the Shadows,” the 236-page first book in his “Hourglass Tales” series, in October 2006.

Set during the Depression, it’s the story of 9-year-old Jessie Bell, an orphan who stumbles upon an abandoned manor deep in the woods of Pennsylvania. The discovery transports her into a magical world and inspires her to fight an evil business tycoon who wants to destroy the manor.

There are parallels to the author’s own life, from the fight to save his interpretive services to Jessie’s thrice-daily porridge, which Harmon likens to his liquid meals.

“Also, the main character loves to read, like me,” he said.

“Sparkle, Serena!” — the title an ode to “Sparkle, Shirl,” a phrase Shirley Temple’s mother used to inspire her daughter — is about a girl who cooks up a way to raise money for a friend in desperate need of medical aid.

The girl, Serena Graham, convinces the owner of a boarded-up theater to reopen it so she can put on a dance show and help her friend. But as she prepares for opening night, her own doubt and other nefarious forces threaten to derail the dream.

“It’s a beautiful story,” said Brian Schiller of Florida, who received grants to make a still-unreleased documentary about Harmon and spent several months this year shooting in Burnsville. “It’s been honed and honed and honed over the years.”

“It has a happy ending,” said Klozzner, the Manhattan screenwriter who worked with Harmon for months over the phone. “It’s set in Long Island. Christopher had a very strong idea of telling a story that thematically kind of mirrored his own struggles, his own belief that the human spirit is triumphant in overcoming obstacles.”

Klozzner flew to Minnesota for a July reading of the script at the Center for Independent Artists in Minneapolis. Actors were hired and an audience assembled in a typical Hollywood ritual.

“I’ve been to a lot of these readings,” Klozzner said. “Judging from my experience, it was really one of the better ones. It garnered the response from the audience that we wanted, and it got better as it went along. The audience seemed to get more absorbed and enthralled in the story.”

Harmon has received guidance from IFP Minnesota, a St. Paul-based nonprofit that promotes independent filmmakers and photographers, but has yet to land that angel investor with $5 million to make a family film.

A comedy fundraiser planned for next August at the Acme Comedy Club in Minneapolis should help a little. The show’s producer, Timm McCoy, husband of interpreter Joan Lisi-McCoy, said the goal is to raise $100,000 in start-up funds. McCoy, a video producer who has worked in TV, radio and film, said comedian Emo Phillips has committed to performing. Other special guest announcements may be forthcoming.

Meanwhile, Harmon can be found most days in front of his computer, with an interpreter, inching toward his dreams.

“One day we were sitting here working on query letters (to book publishers),” Lisi-McCoy said. “Chris looked at me and said, ‘Why are you smiling?’ I said, ‘Well, I just realized how much I like working here.’ I really enjoy it. I consider Christopher my friend. He has a wonderful sense of humor. … We laugh a lot.”

John Gessner is at burnsville.thisweek@ecm-inc.com.

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