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The Long Road Home
David Krempels is helping people with head injuries to find the way back to themselves
By Bill Burtis
Photographs by Kindra Clineff
When David Krempels '73 graduated from UNH with a major in political science, he wanted to save the world. "I cared about injustice and wanted to change things, the way most of us did. That was part of the '60s and '70s. That was why I majored in political science," he says.
He didn't go directly into world-saving, however. He became a carpenter, then a building contractor. He got involved in church and community organizations, enjoyed sports and played on some community teams, fell in love and got married.
Then, 20 years after graduation, Krempels created an organization that really does save the world for some people--people like him. To understand what it means to be like David Krempels, you have to know his story, how the life he once had ended in an instant, and how he built another over the next eight years.
It was a June day in 1992. Krempels was 42 years old, a successful businessman, part owner of a successful contracting business in New Hampshire's Seacoast, and just married. He and his wife of two days, Ettamae, were traveling on the Maine Turnpike when traffic stopped for construction near Portland. A tractor-trailer behind them didn't stop. Ettamae died in the demolished car, and Krempels was taken to the Maine Medical Center in a Level 4 coma.
Eventually, miraculously, he came out of the coma and recovered sufficiently to be transferred to a rehabilitation center in Dover, N.H. It was there that the horror of his situation slowly became clear to him. "When I finally understood that Ettamae was dead, I cried. When I realized that I couldn't work, I cried. I found out that I wouldn't even be able to play softball, and I cried. On the days when I had no money and no food and I was really hungry, I cried. I cried for two years," he says.
Krempels had to relearn how to walk, eat, speak and write and take care of himself. "I realized that I could either curl up in a ball and die, or I could try to reclaim a life with what I had," he says.
With the help of a small group of loyal friends, Krempels did reclaim a life. It wasn't easy, and he wasn't always sure he would make it. Looking back, he's a little surprised at how far he's come.
"I'm amazed I've recovered as well as I have," he says. "I'm a little clumsy; my balance and coordination are poor; mild hemi-paresis on the right side, a slight limp. My speech is deliberate, a little slurred; I sometimes sound drunk. But I get around fine. On a good day, if you didn't know, you wouldn't know.
"Cognitively ... who knows? I have some problems: memory, concentration, organization--what the neuro-psych guys call executive function. I'm learning to compensate. I carry a Daytimer and write everything down."
Krempels' recovery wasn't helped by the financial problems that beset him almost immediately after his discharge from rehab. When he lost the ability to work, he lost his independence. "I was totally dependent on food stamps, fuel assistance, loans from friends," he recalls.
His application for Social Security disability payments was approved after a long string of hearings and appeals, and then it took nine months for the first check to arrive. "On my most desperate weekend, I kept opening the cupboard where I kept the staples of my diet: bread, cereal, crackers. Empty. No food, no money, no idea what to do. The only time in my life I have known the terror of hunger."
Two years after the accident, Krempels' civil suit against the trucking companies and turnpike authority came to trial. A jury awarded him a lot of money and a chance to build a new life. He resolved to make the most of it.
Krempels grew up as the son of a minister, in whose footsteps he was expected to follow. "I found his doctrine too hard," he says. "But I did get the part about caring for people. I have a really soft heart, and I always wanted to alleviate suffering."
With his money problems behind him and his future still uncertain, Krempels decided to dedicate his new life to helping others who were going through what he had gone through and whose cupboards now were bare.
In 1995, he called together a cadre of friends who had helped him through his two-year ordeal, and he told them he wanted to use some of the money from his lawsuit to create a charitable fund to help people who had suffered head injuries.
"That's David," says Effie Malley '78, a close friend and a consultant to Krempels' 2001 Brain Injury Support Fund. "That's the way he thinks. Right away he was saying, 'There must be a lot of people like me.' David wanted to keep people from suffering through the poverty and loneliness he had experienced."
In addition to Malley, the friends who were called upon to help establish the fund and to serve on its board of advisors included social worker Lisa Hansen '84, who was Krempels' case manager at Dover Rehab; Jim Fisher '89, also a social worker and an old softball buddy who visited Krempels nearly every day during his recovery; and Portsmouth lawyer John Ahlgren, who argued Krempels' case in civil court.
"We used to meet for coffee at Ceres Street Bakery to read applications for grants, all of us caught up in David's mission to help people who are in really dire straits," Malley recalls. And the 2001 Fund has helped people--more than 220 of them--giving away $600,000 since its inception. But after a few years, Krempels and his friends decided that they needed to do more. "There was a need for people to connect with other people," Krempels explains. "Somehow we needed to go beyond helping people to pay their bills and to satisfy the need for human interaction."
In a sudden turn of events unimaginable to most of us, many head-injured people lose jobs, hobbies and the simple, everyday abilities that most humans take for granted. Soon they may, and often do, lose homes, marriages and friends.
"This is a very misunderstood disability," Krempels observes, running a hand over his close-cropped sandy hair. A lean man with a ready, engaging smile, he explains that people with head injuries are often perceived as "stupid, retarded or drunk. They are none of these things, and the people they were--the minds they possessed--are still in their bodies. But their ability to express themselves is very damaged in some cases. So they are misunderstood out in the rest of the world."
The effects of brain injuries are often complicated and perplexing. Some individuals have obvious disabilities and may be confined to a wheelchair; others seem to be unscathed, yet cannot take care of themselves day to day. People around them are often confused and perhaps embarrassed by them. The result, and perhaps the biggest challenge and danger facing the head
injured, is isolation. "The way I put it is that a lot of us are sitting home smoking cigarettes and watching TV," Krempels says. "That may not be really fair, but it describes the problem."
So in February 2000, Krempels approached the directors of the 2001 Fund with a new idea. "I had become fascinated with this clubhouse idea--a place where people could meet and socialize in addition to obtaining services they might require. I asked the board to commit to it, and we hired Effie Malley, who really knows how to get things going." The result was a new community service program called Steppingstones, which opened for business at Portsmouth's Community Campus on Oct. 18.
On Monday, Wednesday and Friday mornings, by the big stone fireplace in the atrium of the Community Campus, the members of Steppingstones circle for their community meeting. Seated, standing, a few in wheelchairs, they represent a variety of ages, backgrounds, circumstances. But their common bond--a brain injury caused by a fall, car crash, industrial accident, stroke, tumor, or even gunshot--makes for close connection, understanding and friendship. The camaraderie comes through in smiles and expressions, touches and the in-jokes they exchange, sometimes with words so halting or slurred that only a practiced ear can catch the meaning.
Leading the meeting is Carrie Fagner, executive director of the eight-month-old program, which already serves some 80 members. An animated young woman, she holds the group's attention with a blend of energy, enthusiasm and tenderness, leaning forward to speak, softly but clearly, as she describes the day's opportunities to "socialize, relearn old skills and acquire new ones, and contribute whatever they feel they can."
This meeting is the touchstone of the program. One by one the members speak their names (many head-injured people have a hard time remembering names) and state their preferences for the day's activities. On this particular morning, one member from the gardening group suggests that the members might plant flowers along the building's walkway. The travel group is taking an imaginary trip to Japan, meeting in the craft room to make fans, discuss Japanese culture and begin planning a Japanese meal. There is a report about a missing member's hospital stay, and a thank-you card goes around the circle for signatures. It will be sent to the person who organized a recent trip to a legislative hearing on funding for handicapped programs.
"This is a member-driven program," says Fagner, who came to Steppingstones after working at more traditional programs for people with disabilities. "Our members find their own level of participation, picking the activities they enjoy and find rewarding. There is something here for everyone."
Each day is structured so that members can come when they want and participate as long as they want. Activities are organized in one-hour blocks. The program is coordinated by Fagner and managed collaboratively by members, their personal-care attendants and students and faculty members from the occupational therapy department at the University of New Hampshire.
After each member has had a chance to express him or herself at the morning meeting, the group disperses throughout the Community Campus. A few go upstairs to practice computer skills or hang out around the pool table, laughing and critiquing each other's abilities in "structured games." Others head to the greenhouse or to the Head Start classroom to read stories to the children. Some volunteer to do office work for Steppingstones or other Community Campus programs, while publications group members meet to discuss the next Steppingstones newsletter.
"Being at the Community Campus is a huge gift, because we're not isolated and we get to interact with all the other people and programs here," Krempels notes. The campus, which includes classrooms and other facilities used by a variety of community-service organizations, opened in 1999 under the auspices of the Foundation for Seacoast Health. Seven programs are headquartered here: Families First, the Community Child Care Center; the Portsmouth Head Start Center; the Portsmouth Early Education Program, New Heights, which provides activities for adolescents in grades 6-12 during out-of-school hours; Info Link; and the Family Harbor, which works to investigate and prevent child abuse. "The relationships with kids are vital," Krempels observes, "because they're not afraid to ask 'What happened to you?' That's a question it's important for us to be able to answer."
Taking advantage of the Community Campus kitchen, half a dozen Steppingstones members have chosen to spend part of their morning "Cooking with Alice and Robert." The countertops and island cutting board are a swirl of activity as they prepare lunch for the rest of the members.
The "Robert" of the cooking-instruction team is a Steppingstones member who was a chef before his injury, and "Alice" is Alice Seidel, a UNH professor of occupational therapy. She directs the 15 students currently working at Steppingstones. Without them, the program would be much more limited, Fagner says.
Seidel, busy helping members prepare salad, observes that the Steppingstones experience is as important to the students as they are to the program. "There is nothing like this anywhere else," she says. "Here you see people with disabilities going about ordinary activities in a very healthy environment. Students get to see that people with brain injuries are not sick people, but normal people who have suffered an injury."
UNH senior Adrienne Smith is helping a Steppingstones member who is patiently pouring batter into a muffin tin. She explains that this is the kind of retraining many members need in order to become more independent. "So much of occupational therapy depends on the individual," she says. "It's really rewarding to be working with people who are working so hard themselves to overcome barriers."
Across the kitchen, Tina Monroe '01 is helping with dessert. "You can sit in a classroom all week talking about working with head-injured people," she says as she rummages in a drawer in search of utensils. "But the truth is, until you've worked like this, you're not a real occupational therapist."
David Krempels frequently drops by at Steppingstones. He's delighted with the way his vision has taken shape. He can tell the program helps people, he says, because "I see people smile and laugh. A couple of people who came when we first opened broke my heart. Their lives were gone, shattered, their families and careers lost. But after a few weeks here, they were smiling and laughing and making friends and feeling like they were worth something. What matters, I think, is that people feel like people and have a reason to get out of bed in the morning, just like everybody else. That's a big deal to me." ~
Bill Burtis is a free-lance writer in Lee, N.H.
For more information about Krempels Foundation grants, please contact: Lisa Hanson, grants program director, The Krempels Foundation, Box 4388, Portsmouth, NH 03802, phone: (603) 659-2001, e-mail: email@example.com. The foundation's Web site address is http://www.braininjurysupport.org/index.html.