Defender of the handicapped

Posted Jan. 04, 2009, at 9 p.m.

When the walls close in, and the silence in the lonely dark becomes too intense, Patrick Carleton Harris of Bar Harbor lies in bed and remembers the first great adventure.

It was late summer 2003. He was traveling the back roads from Fort Kent to Kittery in his breath-controlled, turbo electric wheelchair, joyously cruising along while cars honked and cows mooed and bystanders cheered at the sight.

A small American flag rose above a hand-lettered sign on his chair that read, “Support Stem Cell Research.” He was greeted at town halls, the Orono campus of the University of Maine and the State House in Augusta, his visits covered by local newspapers and television.

Wearing a jaunty black beret and a blue windbreaker, he talked with whoever would listen about the promise of stem cells to repair spinal cord injuries. He encouraged handicapped Mainers he met along the way to dream big.

“I’m going to be a voice, a defender of the handicapped whose broken hearts don’t give them the will to stand up,” he told a reporter during the week-long trek, which left him exhilarated and exhausted by the time he rolled into Kittery.

It was a fine adventure, a rare and cherished time of freedom and a true test of his resolve to “fight from off the deck,” a phrase from his boxing days in the Air Force.

But that was five years ago. It’s been seven years since he was paralyzed from the neck down when he skidded out of control on black ice in Palmyra, driving one bitter night to a chalet he was building near the Sunday River ski resort in western Maine.

Before and after

Harris, now 51, has come home to Bar Harbor to be near his Fletcher and Beal relatives and the family’s long seafaring heritage, where he can smell the salt air and feel the comfort of familiar surroundings.

Not far from Hull’s Cove where he grew up, close to MDI High School where he graduated in 1976, he has come home to heal his spirit and regain the momentum on his mission to demonstrate through his physical adventures that others can transcend their handicaps.

Motionless in bed, but alert, like a becalmed sailor listening for the wind, Harris reflects on the realities of life as a quadriplegic, on the primal tension between body and soul when one is helpless beyond imagining.

“It’s like running an obstacle course,” says the former bodybuilder and athlete. “Living and surviving, and yet trying to fulfill my adventurous spirit. I don’t want people to pity me. I just want to follow my dreams and inspire others along the way.”

Harris was a serious weightlifter beginning in high school and worked as a strength coach at UMaine while earning his bachelor’s degree and part of his master’s in social work. He was a certified divemaster, competitive arm-wrestler, expert equestrian — a photo in his college yearbook shows Harris astride his white Arabian gelding Zachary on the Orono campus.

While living in Texas in the 1990s, he was employed as a licensed social worker in therapeutic recreation with troubled teen boys, sharing his love for the outdoors by leading Outward-Bound-type expeditions that included mountain climbing, scuba diving, primitive camping, sailing, bicycling and horseback riding.

“I was healthy and strong and proud of it before the accident,” Harris says, recalling the event of Nov. 30, 2001, and the shock of awaking in pain and confusion with a fractured C-4 neck vertebra and a severely bruised spinal cord. The doctors made it clear he would never walk again.

“There were times when I wished I had died, and there were times when I was out in my chair, looking down from a cliff or a hilltop, when I knew I could have ended it,” he says softly, and describes his slow progression through denial, bargaining and intense anger into “the deepest, darkest depression I’ve ever known.”

A mission to inspire

Harris attributes his gradual emergence into the light to his Christian faith and to a “prophecy” made by his mother, Alison Beal Fletcher, as she and his family gathered around him, stunned and heartbroken, in the early morning hours after the accident.

“The paralyzed have been delivered a mighty defender this day,” he quotes her as saying.

And so was born the mission to inspire others, to fight from off the deck, and eventually to accept his accident as a “gift” that enabled him to focus on what really matters in life and “convert obstacles into stepping stones.”

There were other adventures in the good years after the wheelchair trek. Harris jumped from a plane at 14,000 feet, strapped to an experienced skydiver, went scuba diving off Cape Elizabeth with vigilant divers on either side, hit the slopes at Sunday River on a specially designed ski-chair.

He wrote and, with the help of a state grant, in 2006 self-published a book, “Quadriplegics Can Do: A Social Worker’s Journey Navigating Paralysis,” which candidly recounts his story and offers practical advice for the newly paralyzed and their friends, families and caregivers.

He planned more treks, one to Washington, D.C., to deliver stem cell petitions to Congress, and another across the United States; a wildlife photo safari to South Africa; skydiving over the Grand Canyon; and a trip to Manitoba, Canada, to explore polar bear territory.

Setbacks

But then, the wind died. His beloved mother passed away in Bar Harbor in July. The chalet, custom-fitted after his accident for handicapped accessibility, was taken from him through foreclosure this past summer.

Harris came close to death last winter from a serious blood infection caused by his surgically implanted urination catheter, and he was back in area hospitals for more than a month recently for similar health emergencies. He has been plagued by bedsores, the serious pressure wounds that are the bane of the bed-bound and can lead to fatal infections like the one that ended Christopher Reeve’s life in 2004 after nine years as a quadriplegic.

And the book he wrote in a heroic, 18-month burst of energy by dictating hours a day to a caregiver –– and that he was counting on to fund more adventures and help pay his bills –– has sold just a few hundred copies. Boxes of unsold books fill the one bedroom in his apartment in the subsidized complex where he relocated last summer.

Research and hope

The 230-page “Quadriplegics Can Do” gives advice on topics ranging from working through the stages of grief at the sudden loss of healthy bodies to working the system for the support that quadriplegics and paraplegics are legally due, a frustrating challenge he knows well.

He writes knowledgeably about stem cell research as the best hope for the paralyzed to walk again.

“It will revolutionize medicine as we know it,” Harris says, describing the regenerative promise of embryonic stem cells. These undeveloped “master” cells from days-old human embryos have the potential to grow into any of the body’s specialized tissues, including cells of the spinal cord.

But such use of human embryos is unacceptable to those who believe that life begins at conception. One sour note on his 2003 trek involved a couple screaming “babykiller” in his face as he sat helpless in his wheelchair at a mall.

Due to the controversy, progress in embryonic stem cell research in the United States has been slowed by federal funding restrictions and intense political oversight. Although stem cell techniques that spare embryos are being developed, they must prove themselves as viable alternatives for tissue regeneration in humans.

Noting with approval that President-elect Barack Obama vowed during the campaign to ease restrictions on the research while maintaining strong ethical guidelines, Harris says, “It will open up, I know it will. I just don’t know if it will catch up with me.”

Wounded lion

In his small apartment in Bar Harbor, he’s surrounded by much of his 2,000-volume collection of nonfiction books and by cherished framed photographs. There’s one of his mother and stepfather, Wilson Fletcher, aboard Blackjack, a vintage Friendship sloop the couple chartered for years out of Northeast Harbor. Now retired as a captain, Fletcher, a local artist, lives nearby and visits frequently along with Harris’ sister, Robin.

Indian artifacts, many of them Cheyenne, adorn the walls. Harris, who studied Native American culture in college and later taught it, says his manitou, or Indian spirit guide, is the lion. The company he founded to publish his book is named Wounded Lion Publishing. He explains that “wounded lions at the end are [at] their fiercest.”

Is he fierce? He’s stubborn, he’s demanding, he’s impatient to resume his mission in the face of overwhelming physical and financial obstacles.

Treasuring his independence, Harris refuses to enter a nursing home, instead relying on government-paid helpers he hires. In 2003, it was a crew of devoted caregivers who enabled the trek by trailing him in his lift-equipped Ford van. His current staff attends him in three daily shifts totaling 89 hours a week, the maximum coverage allowed under the law, he says.

That means he’s alone up to 11 hours a day, and it’s a struggle when he needs help and none is available. Sometimes his caregivers can’t make it, and family can’t be there for him as much as he would like.

Divorced twice, he has two daughters, Alexandra and Taelor, from his first marriage, now grown with children of their own and living out of the area, although they and second wife Elizabeth call regularly and visit when they can.

Harris devotes a chapter in the book to “How Paralysis Can Affect the Extended Family,” and emotionally describes losing touch over the past seven years with siblings and relatives and friends. He calls that outcome “disheartening” but writes that it “challenged me to find my own path as a quadriplegic and to learn how to live independently.”

The path, Harris says, “could end at any time. Things can go wrong very quickly.” He talks matter-of-factly about the dozens of medications he takes daily, simple hygiene that requires hours, nerve pain from his still-intact spinal cord, violent muscle spasms, burning palms and soles of his feet, bouts of depression.

But on good days, with Native American flute music playing in his apartment and mighty-defender visions clear in his mind, he sees the mission enduring. “I’m still going to do it all,” he vows. “I want it so bad. I’m champing at the bit.”

Harris has outlined his next book, and points out that “Quadriplegics Can Do” has “Vol. 1” on the cover.

The wheelchair trek to Washington is “ready to go” when warm weather returns. He’s got a new wheelchair, a “super” turbo faster than his old one, and next summer he plans to motor down to the Village Green in Bar Harbor to sell books, which he deftly autographs by holding a pen in his mouth.

The van sits waiting in the back parking lot of his apartment complex, ready for the next great adventure.

“You know what’s funny, brother?” Harris asks. “In all my dreams, I’ve never dreamed I’ve been in a chair. I dream that I’m walking, standing up.” He pauses, lying in bed, listening. “Is that a good thing? I hope so.”

Patrick Carleton Harris can be contacted by mail at 15 Eagle Lake Road, Apt. 404, Bar Harbor 04609. Luther Young can be contacted by e-mail at loyoung@nasw.org.

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