Falling For Eli

Hell on Wheels

On January 31, 2010, in Feature Articles, by nshulins

EDITOR’S NOTE— Among this year’s (1991) college graduates is a most remarkable one, a student who has never uttered an intelligible word, tied his own shoes, or brushed his own teeth, whose IQ was once estimated at 50. Next month, 85-pound, wheelchair-bound Larry Harvie — musician, writer, computer scientist, beer drinker, jokester — will receive his diploma. For the community of St. Michael’s College, it will be a moment of collective triumph.

WINOOSKI, Vt. (AP) — A scientist’s mind and a comic’s soul rattle the cage of Larry Harvie’s singularly uncooperative body.

A body unable to walk and talk, or feed, bathe or dress itself. A body that, because of severe cerebral palsy, cannot pick up a book, climb out of bed or take itself to the bathroom.

Larry communicates with a small flashlight strapped to the side of his face. By moving his head, he aims the beam at a light-sensitive keyboard mounted on his wheelchair, hitting the letters one by one: Plink! Plink! Plink! A computer links them into words and utters them through a speaker. Like this:

“A l-o-t o-f t-h-e-s-e s-t-o-r-i-e-s g-e-t s-a-p-p-y,” he says. So let’s get something straight right away:

Larry Harvie doesn’t see his condition as tragic. Plink! Plink! Plink! “I-t j-u-s-t m-a-k-e-s l-i-f-e m-o-r-e i-n-t-e-r-e-s-t-i-n-g.”
At St. Michael’s College, the Catholic liberal arts school where he will graduate in May with a degree in computer science, life has indeed been interesting. Not just for Larry, but for the 120 or so students, faculty and staff who have taken turns these past four years feeding him, putting on his pajamas, brushing his teeth, and placing him on the toilet.

“We have a Larry consciousness,” says political science professor William F. Grover.

It wasn’t always that way.

Grover was a first-year teacher when he walked into his American government class in 1988 and saw the motorized wheelchair parked up front. He took it all in: the crumpled, 85-pound body, the strange gurgling noises, the spastic movements, the drooling.

“I thought: `Oh, God. I don’t need this.’ Then I thought, `Maybe he’ll just sit in the corner and not say much.”’

Larry has never been one for sitting in corners. “I see so many people giving 50 percent,” he says. “Larry Harvie is a person who does his best.”

He’s also happiest when surrounded by people, and so he has learned to guide them, with patience and humor, past the physical manifestations of his disease, beyond the severely crippled body to the undamaged person inside.

He’s had much success. In Livermore Falls, Maine, he attended public school, played bass drum in the band, went to the prom, kept score for the girls’ basketball team, belonged to the National Honor Society, attended Boys’ State, and graduated fifth in a class of 102.

At St. Michael’s, he has maintained a 3.5 average, played bass drum and traveled with a jazz ensemble, worked at the computer lab and written a political humor column.

Now, his biggest test lies ahead. “I am a damn good computer scientist,” Larry says, and his professors agree. But will anyone give him a chance to prove it? Who will hire him? What graduate school will accept him?

“Everyone keeps saying, `What’s he going to do?’ There are no answers,” says classmate Paul Lagermasini, who roomed with Larry in his sophomore year. “He wants to work for a corporation. But guys in suits aren’t going to want to stop and feed him lunch.”

As usual, Larry minimizes the obstacles. “People often make more of something than there is. I have a very straightforward view. I have some job to do, whatever it is. All I want is to do that job and to kick ever-loving butt doing it.”

For Larry, those 39 words are a long speech, taking several minutes to program. Behind the computer’s electronic monotone, the expressive blue eyes search yours for evidence of understanding.

“Larry’s always been very philosophical,” says his mother, Sandra Harvie, a forthright woman with a pragmatic optimism born of strong faith and 55 Maine winters. “No one gets through life without some trauma.” Hers came 26 years ago, when her second child arrived a month later than he should have.

“He was coal-black when he was born,” says Mrs. Harvie, who prayed out loud during the 45 minutes it took to get him breathing. Another 45 minutes passed before he cried.

Early on, she and her husband Lawrence, a machinist, were certain that the damage to their son’s body had spared his mind. When experts estimated his IQ at 50 and recommended a school for the retarded, the Harvies said, “No way in hell.”

Instead, his mother taught him herself, with made-up stories, alphabet boards and paper labels taped to everything: REFRIGERATOR, TABLE, COUCH. She knew she was on the right track the day she showed Larry a picture of San Francisco shrouded in fog. With an alphabet board and his one functional finger, he spelled a word, phonetically as she’d taught him: P-O-L-U-S-H-E-N. He was 5.

By then, a new test had proven the Harvies right: Larry’s IQ was 130. Not only was he not retarded, he was gifted.

By third grade, he was ready for public school. Mrs. Harvie got up early that first morning to take him, anticipating major adjustments. Larry insisted on taking the bus, and she wound up staying home. So much for adjustments.

Every day for the next 10 years, she went to school to feed him lunch. She never knew what she’d find: Larry out in the hall, having been tossed out of class for causing trouble; Larry peering into classrooms, making funny faces at the kids inside; Larry winging down corridors in his walker, kicking every door — BANG! — as he passed.

“I never did drugs or anything like that,” Larry says. “But I have been in trouble since Day One.”

If his handicap never stopped him from getting in trouble, neither did it shield him from the consequences. Occasional spankings helped send a message: “I was just another kid.”

In high school, Larry got his first voice synthesizer. And the personality that had been taking shape within the mute body burst free.

The electronic communicator that replaced his punched-tape typewriter was complicated, recalls Sister Jane Thomas of Shriners Hospital in Springfield, Mass., who delivered it. But by the end of the first day, “He had a name for every teacher.” The names were pure Larry: a bald science teacher was code-named “hair.”

The nun recalls Mrs. Harvie saying, “Well, at least there are no dirty words on that thing.” Larry’s eyes lit up. “A second later, we heard: `S-e-x s-e-x s-e-x s-e-x s-e-x.”’

Larry made sure he missed nothing. He played bass drum in the band with a foot pedal; on parade days, the drum was loaded in a cart and he marched. “He went to all the proms,” Mrs. Harvie says. “I would sweat these things out, but he almost always had a date. He’d get out there and dance in his walker.”

By senior year, Larry had traded the walker for a motorized wheelchair, conserving his energy for mental tasks.

After graduation, he went to Portland to learn to live on his own. “I chewed my lip a lot of nights,” says Mrs. Harvie. With good reason.

A man hired to care for him embezzled from him. A store clerk, convinced Larry was having a seizure, yanked him from his wheelchair and pinned him to the floor during a shopping trip. (Larry found this hilarious.) Police picked Larry up for taking his wheelchair on the freeway. (He was going to a picnic at the time.)

He hadn’t intended to go to college. “He felt enough money had been spent on him. He was going to get a job. His brother Patrick should be the one to go,” says Sister Jane, who talked him into it.

And so, in September 1987, the Harvies dropped Larry off at St. Michael’s.

“A million things go through your mind: What if there’s a fire in the middle of the night? How is he going to get in when he comes home from class? I cried awhile on the way home,” Mrs. Harvie says.

“I wasn’t scared,” Larry says.

He may have been the only one.

“This is not a place that’s super well-equipped to handle special needs students,” says Michael Samara, dean of students.

It is a place with a longstanding reputation for service, as well as a volunteer program cited by President Bush. At St. Michael’s, spring break doesn’t mean fun in the sun. It means building housing in Selma, Ala., or working in soup kitchens in Washington, D.C.

Still, the vast majority of its 1,700 students are white, middle-class kids from the Northeast: healthy kids, with sturdy bodies, pink cheeks and white teeth.

“Let’s face it, this is a Pepsi commercial,” says Samara. “The major obstacle for Larry here has been people’s discomfort. But I’m not aware of anyone who hasn’t gotten over it.”

William Grover, the professor who’d hoped Larry would sit in the corner, soon changed his mind. “I thought he would be a burden. I realized he was a treasure. He talked not to show that someone in a wheelchair could talk, but because he had incredible things to say. It became second nature to me to take the towel out of his bag and wipe the spit off his face during class.”

Most kids roll out of bed minutes before class. Larry’s morning routine takes two hours, and can’t begin until a visiting nurse shows up to help. The rest of the day, his needs are met by roommates or personal care assistants, some of them paid nominally with funds from Maine Vocational Rehabilitation.

Their biggest hurdle is fear. “It’s hard. You’re afraid you’ll hurt him,” says his friend Joe Caci, an accounting major who graduated last year.

Each task has a strategy, from giving him medicine — “The object is to get the pills down past my tongue” — to getting him dressed. “If you put the right arm in the shirt first, the left arm is much more cooperative when trying to bend it back in the empty sleeve.”

Because the muscles that swallow are paralyzed, mealtime is particularly unnerving, with much choking and gagging. “The first time I fed him I thought I was killing him,” says Chris Barnes, one of three students who share Larry’s apartment and help him in exchange for free rent.

Jennie Cernosia, director of student activities, dreaded taking him to the bathroom. “I was worried sick about dropping him. His butt’s so skinny, you have to sort of place him on the bowl so he doesn’t fall right in.” She soon forgot her discomfort. Unfortunately, she also once forgot Larry, leaving him there, incommunicado, an hour and a half. As usual, he took it in stride.

Acutely aware of how others see him, Larry tries different tactics to put people at ease, from Dan Quayle jokes to computer wizardry. Other methods are less apparent, like breathing and relaxation exercises to improve his control over the gurgling, drooling and spasticity that can scare people away.

He’s become more agile, thanks to assistant athletic director Zaf Bludevich, who puts Larry through physical therapy every week. Out of the chair, away from the formidable hardware that gives voice to his thoughts and mobility to his body, he is alarmingly small and defenseless, a dimestore turtle without the shell.

But that’s only the outside. Inside, he’s sturdy as a tank. “I look at it long-term, almost like restoring a car,” he says after therapy. “I like projects, which is one reason I’m in computer science.”

He also likes a good party — another opportunity to reveal the regular guy inside. “He’s at every party, usually at the center. The kids help him drink his beer,” says fine arts professor Paul LeClair, who directs the wind and jazz ensemble and shares Larry’s love of Count Basie and Far Side cartoons.

“He makes disarming use of four-letter words. It’s his way of saying `I can be punched around. I am real and I am a guy and don’t treat me with kid gloves.”’

Paul Lagermasini was among the first to recognize this and to act accordingly: “I’d jump on his wheelchair and take over the controls. I’d throw snowballs at him. Or put a towel on his head and walk away. Once, at a semi-formal dance, I went up and started dancing with him.

“He gives it right back, of course. He’s a riot. I’d lift him out of the chair and he’d kick me. Or bring up names of people I didn’t want to hear. He’s got more dirt on me than anyone.”

There’s another side to this friendship. Without Larry, “I would have been just an average student.” Instead, he played varsity soccer and was vice president of student government senior year. “A person who’s truly extraordinary changes you.”

As for Larry, “I have been to four cities on two band trips and held a job. In college, I have learned to take risks.”

And though he came as a student, he leaves as a teacher — not of academics, but of lessons infinitely harder to learn.

Frustrated by the demands of helping his roommate, Chris Barnes wrote Larry a letter apologizing for having been impatient. “I told him I couldn’t figure out how he could be happy all the time. Because I couldn’t find any way in the world.

“Larry wrote back that he looks at life as though he’s in the cockpit of some old crate nobody else could fly. So here God comes, and he looks at this old crate and at the sleek, shining ones beside it, and he thinks: `Now who can I find to get this thing off the ground?”’

For weeks, Larry’s been working at moving his feet, practicing for the day his parents will help him out of his wheelchair and across the stage to receive his diploma.

Then the lip-chewing will resume. “It’s a tough world,” says his mother. “I hope he can find a job he can take pride in. A job and friends. People he cares about who care about him. A life.”

Larry hopes so, too. He has dreams, like everyone: graduate school, a career, maybe even a house with a white picket fence.

Though he’s sad to be leaving, “We are all sad,” he says, all the graduates about to venture into the unknown. Sad and happy and exhilarated and scared. Who can say what any of them will find?

But while most have yet to discover what they’re made of, Larry Harvie already knows. “I a-m g-o-i-n-g t-o m-a-k-e i-t w-h-e-r-e-v-e-r I g-o.”

Kicking ever-loving butt all the way.

 

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