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The Way They Are

At the Mill House, brain injury survivors work to piece together memories and build new lives.

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The members of the Mill House are here because they suffered severe brain injuries, whether from a car crash, work accident, operation, stroke, fight or fall. For some, the injury happened in childhood or soon after birth. Others had their adult lives, their marriages and careers, thrown suddenly off track.

The effects of a brain injury are difficult to generalize because every person experiences them differently. Some discover they are quicker to anger, or more impulsive, or they find odd things funny. The ability to recall words and to walk is often affected.

"I could spell, always!" says Nancy Perkins, a former waitress who was struck by a car in a hit-and-run two-and-a-half years ago. "But simple words I can't spell."

Short-term memory grows hazy. Conversations between Mill House acquaintances often begin, "What was your name again?" and end, "Nice meeting you."

One consequence is nearly universal. Surviving a brain injury means adjusting to a new body, a new mind, a new self that doesn't work quite as well as the old one.

"It's such a devastating disability, because folks really are aware of their previous life," says Lance Elwood, executive director of the Mill House. They often believe that, after a while, "things will turn to normal," adds program director Jason Young.

That's why this house was built, to ease the passage from "I used to be …" to "Now, I am."



Bruce Abbott is a narrow man, compactly built. He has about him the tough look of a range-hand — maybe it's his iguana-skin boots — or a biker, which he was. "I used to race at Daytona and all the major tracks on the East Coast," he says, with a little pride but little nostalgia. He crashed his motorcycle during a race in 1999, on turn three at Road Atlanta in North Georgia. Unhurt, he stood and tried to signal to the other racers to avoid his capsized bike. Two crashed into him.

Next thing Abbott knew, he was speaking to God.

"God appeared to me as an old man, because that's how I anticipate him," he says. God told him he listens to all prayers, even if he doesn't answer them in ways expected.

And God told Abbott he would live. "I said, 'Cool.'"

Next thing he knew, he was staring up at a paramedic. "I said, 'Why are you beating on my chest?' He said, 'I'm trying to resuscitate you.' I freaked that paramedic out."

Abbott lay in a coma for 43 days and then awoke. But the body he found himself in was not the agile one he knew, that once could race and run and shoot.

Before the accident, Abbott says, he worked as a police officer in Waynesboro and served as a Green Beret and a Ranger in the Gulf War. "Hoo-ah," he says with satisfaction, although he's unable to deliver the old military shout with the vigor he had then.

Recently, Abbott was diagnosed with Kennedy's disease, a slow-progressing degeneration of muscles that has weakened his limbs and tightened his vocal cords. A raw deal all around.

But Abbott, 45, says he's doing all right. He pulls out a small picture of a pink-wrapped baby, his new granddaughter and closes his eyes to remember exactly when she was born. She'll be 3 months old Nov. 18, he says. "I'll watch her grow from an infant to a young woman. I may even watch her get married someday."

Abbott has been married three times. His last wife left him after his injury. "She forgot the part 'in sickness and in health' in wedding vows," he says with grim humor. Since then, he's become friends with a woman who's also living with a brain injury. "She accepts my disability, and I accept hers," he says.

He's working now, too. After a job coach couldn't find anything to suit him, Abbott went out and found a job himself, at the Chick-fil-A at Regency Square Mall.

Hungry shoppers never stop lining up at the counter during Abbott's 11 a.m. to 3 p.m. shift. He shifts a little on his feet as he takes orders, moving side to side almost imperceptibly. His section of the counter is spotless.

It seems like a complicated job, dealing with harried customers and sorting out orders and change. "Not really," Abbott says a bit wearily. Not compared to what he used to do. But it's a start. He turns to the next customer. "Can I help you?"



The Mill House staff hope all their members can someday do what Abbott has done — learn to accept their new selves, figure out ways to compensate for their disabilities, and find jobs.

It's called a clubhouse program, which means members — with help from Young and three full-time coordinators — direct daily activities and make decisions about how the place is run. People think of a clubhouse as a place to hang out, Young says, but the day revolves around work, not play.

Members (and that's what they're called, not patients or clients) number about 40. About 15 or so participate per day, arriving around 9 a.m. Some catch rides to the house on Staples Mill Road from friends or family members. Some take the CARE bus run by GRTC.

The house consists of three large, sunny rooms, a kitchen and a few small offices on the first floor of a 1920s building that was first a doctor's home and office. It's a warm, inviting space with potted plants, tropical fish and walls painted bright colors chosen by the members.

Each day begins with a meeting where members talk about events coming up and review work assignments. They choose to work in one of two units. One is kitchen and maintenance, which includes cooking a meal for the members every Tuesday and Thursday as well as cleaning and maintaining the building. The other is communications, which means answering phones and greeting visitors, writing articles for the bimonthly newsletter, soliciting and tracking donations.

The latter is the preferred domain of Robert Priest, who on a recent Tuesday sits in the computer room with a cigarette tucked behind one ear, typing up the list of members' fall birthdays for the newsletter.

Priest, 47, was one of the first members at Mill House and regards the program with a proprietary air. He is always quick to offer a tour and answer questions, including those addressed to other members. He has been living with his brain injury for 29 years, longer than nearly anyone else here.

"You know what it means to pigeonhole somebody?" Priest asks, resting his hand in one of the wooden cubbyholes where members receive their mail. "Pigeonhole — you know what that means, don't you? Put 'em in a category." That's what happened in other programs he tried, he says, where they only told him what he couldn't do. He found himself "just kind of hanging out, doing the same thing I tried to get away from."

At the Mill House, he says, he has learned how to work with computer programs, something he never got the chance to do in his old life working construction and carpentry jobs.

Wednesday mornings, staff members drive Mill House volunteers to a neat gray building in the country, the Unitarian Universalist Community Church in Glen Allen. They thoroughly clean the church each week and in return, the Mill House receives $110 per week. The money goes into the members' joint account, which they use to pay for monthly social programs, new computers and other perks.

An outsider may wonder why members travel so far to the Mill House — some from Petersburg or Chesterfield County — to do chores. The answer, they say, is that working in the company of people who understand your struggles is infinitely preferable to lying around the house.

"Just staying home in bed all day long, watching TV? I was sick," Hicks says of the years before he found the Mill House. "I thought about killing myself. … I was hurt here, hurt here," he says, tapping his heart and his head.

The Mill House day includes more than work. Members meet their therapists and counselors there and volunteer with Meals on Wheels. Once a month, they go on evening outings to the mall, museums or movies. October's event was an Imax film, "Forces of Nature." "You felt like you're up in the hurricane," Priest says.

The outings are a favorite, as are birthdays and other special events at the Mill House. But the overarching goal for members is to find a J-O-B.



Alphonso David Hicks used to work for Richfood Inc., driving a forklift in a warehouse. Made $800 a week, he says with pride.

Nine years ago, when he was 25, a car struck him while he was stopped at a red light on his way home from work. He came near death. But, as he puts it, "God say, get your butt down there, boy!" He lay comatose for five months.

"I met the lady that did it," he says, and wasn't angry. "I don't care about me," he explains, "because I'm living, I'm all right. … I'm fine." He was more concerned, he says, about the children in the woman's car. "Everybody makes mistakes, and she made a mistake. … I want to know, Is she OK? Are her babies OK?"

Hicks was not OK. "After my accident, I was about two years old," he says. He had a tube in his stomach and a tube in his throat. He had to learn to walk and talk, eat and wash again.

Now Hicks' words spill from his mouth quick as water. Only a slight limp tethers his feet. "I want to learn how to run," he says.

He's been working since he was 16 — before the accident, that is — and he's tired of watching TV. "I'm going to get my car, once I get my license back," he says. Once he has a car and license, he says, "I want to go back to my job."

That's not going to happen, the Mill House staff tell him gently. He's got to concentrate on finding different work to do. But Hicks doesn't understand why he can't catch a break.

He lists his best qualities: "my personality, my love for my life, my niceness." He's a good worker, respectful, he says. "I can do just about anything."

But does he feel like himself again? "No, not at all," he says, and pauses. "I do and I don't. I'm happy and I'm not happy."

He can do things better, he says, but can't remember things any better. His wife left him. "After my accident, she did me wrong, because she knew the memory wasn't there," he says, with a rare twinge of bitterness.

She has custody of their three children, who are just as beautiful as Al says: Corinne Brianna, 12; Alphonso David IV, 15; and Jessenia Yamilia, 17. Although he sees them often, he carries wellworn pictures of his "babies" in his wallet always. "When I go, I want them with me," he says.

"I just hope God has good plans for me," he sighs. Like arranging, somehow, for him to drive a forklift once again. Or — and he has recently come to acknowledge that there are now ors in his life — work in a supermarket, maybe. "What else can I do?" he says.

"One thing at a time, that's all I know how to do," member Raymond McCray offers.

"Yeah, life's getting much better," Hicks says.



"Brain injury's a relatively new disability," Program Director Jason Young says. Not too long ago, many of the injuries the Mill House members sustained would have been fatal. More advanced medical care means they survive, but figuring out a future is a considerable challenge.

People don't realize the enormity of the problem, Young says. Traumatic brain injury — which includes everything from mild concussions to fatal blows — is nine times more prevalent than breast cancer, he says, and 43 times more common than HIV. About 2,000 Virginians per year sustain permanent disabilities from brain injuries.

For many years, Executive Director Elwood says, state officials could only tell families of brain injury victims "there's nothing out there." According to Young's calculations, in the 2003 budget the state spent only $8 per disabled survivor of brain injury, compared with $552 per person with mental retardation.

Five years go, Patricia Goodall, brain injury director for the state's Department of Rehabilitative Services, managed to scrape together enough state money to pay for a program in the clubhouse model exclusively for people with brain injuries. Elwood, the co-founder of Career Support Systems, a company that helps people with disabilities find jobs, and his business partner, Joanne Ellis, submitted their proposal and the department awarded them the funding.

It wasn't much. The money they had at first, $200,000 for two years, supported only a three-day-per-week program. It was the first clubhouse program for people with brain injuries in Virginia. Money from Henrico County and other sources allowed the Mill House to extend to four, then five days per week.

But in the summer of 2001, the money ran out and the Mill House shut down for a month. Then, a new grant from the Commonwealth Neurotrauma Initiative "gave us a three-year period of whoosh" - relief, Elwood says. "Somehow, someway," he says, the Mill House's doors will stay open.

The organization, now five years old, is growing into something bigger and, for members, reassuringly permanent.

Last year, funding for the Mill House was placed in the state budget. Young hopes that in the upcoming legislative session, a new Medicaid waiver will pass that would pay for more services for people with brain injuries. Elwood wants to create a working board of directors. And this year, for the first time, there's a waiting list to join the program.

The office of Career Support Systems is just upstairs from the Mill House, and Elwood's staff coaches members there on finding jobs and supports them while they're working. Mill House staff help members figure out challenges like transportation, child care, how to handle conflicts with co-workers and how to remember when their shift begins.

The Mill House also teaches compensatory strategies, "kind of crutches for your brain," Young explains. Nearly every member carries a slim black daybook for writing everything down, from medical appointments to what time the bus comes.

Priest has developed his own memory strategies. If he wakes up and sees he has laid out his clothes on the dresser, he says, he knows he's going to the Mill House that day. He brings an extra peanut-butter-and-jelly sandwich with him every day, because he knows someone will forget theirs. When he waits for the bus on his front porch, he hangs his teal lunch bag around his neck so he won't forget it. Some of his strategies might seem "kind of dumb, or childish," he says. "I just do what works, you know?"

Several members have succeeded in finding work. "We have at least four members who have gotten jobs and they seem happy so far," writes Perkins, the former nurse, in a recent newsletter article titled "We Got Jobs."

Raymond McCray, who says he intended to enter the field of psychiatric health care before an operation to remove a blood clot claimed three-quarters of his cerebral matter, now takes tickets at the Regal Cinema South Park. He demonstrates his greeting: "Good evening. Please proceed to theater thus-and-such, and enjoy your critique."

(Yes, Raymond always talks like a professor as a consequence of his injury. "I did have the opportunity to respect your presence last week," he says, meaning he recalls meeting you then. And "I'm grateful for your beneficial analysis," he says, smiling, when you compliment him on his prodigious vocabulary.)

"Some of our members seem to be able to move on after getting a job; you don't see them as much," Perkins writes. She has been sending out applications, but no luck so far.



Bayla Rackley has a master's degree in American history from North Carolina Central University, with a concentration in African-American history, specializing in African-American institutions.

By all rights, she should be teaching classes, grading essays, discussing her research with colleagues. She never thought she'd be spending her morning punching construction paper to make hundreds of tiny leaves to decorate the tables for the Mill House's silent auction in November.

"We were hit by a speeding 18-wheeler," Rackley says. Her husband was killed instantly, and the doctors initially told her family that no one had survived the crash. "So you know I was pretty messed up," she says with wry humor.

The doctors revised their assessment. She would live, they told her, but she'd likely spend the rest of her life in a nursing home. "I said, 'No, not me,'" Rackley recalls. So she lived, and she learned to get along.

After some time in rehabilitation, she was able to cook and clean, dress herself and brush her teeth. But these actions were nothing but rituals her body remembered, she says, while her mind swam in a haze. "I lived on instinct. That was so interesting to me," she says, with academic detachment.

Three years passed, and Rackley gradually became aware of herself again. "I used to trip all the time," she explains, but had no idea why. One day, she looked down and saw that her right foot wasn't behaving. It seemed stuck, and dragging behind her.

"I found out why I trip so much," she said to her doctor, and related her discovery that something was wrong with her foot. She was partially paralyzed on her right side, the doctor told her, and had been that way since the accident. That moment of self-awareness marked the beginning of her healing.

The road would be long. Thirteen years of rehabilitation and a never-ending process of learning to live with damaged memory, visual and physical abilities. She must focus carefully on every step, she says, because a small stumble means she'll lose her balance and fall.

"It's not easy to accept a lot of losses," she says. The first time Rackley visited the Mill House she doubted she'd ever fit in. She enjoys the symphony, the ballet and other interests no members shared. But a few weeks ago, she decided to try again.

"I'm more well now. That's the only way I can put it," she says. "I've come so much farther than anyone expected me to." Meeting her for the first time, you wouldn't guess she'd been injured at all.

She has been trying each year "to do something in a progressive mode." She goes on dates occasionally, and hopes soon to find work in a university setting. "I can always monitor exams, pass out test papers," she says.

"I feel that I need to be a voice for the head-injury community," Rackley says, but that's not as easy as it sounds. She calls her condition "the most discriminated handicap" because people can't see, and don't understand, a brain injury. "I've been called so many things," she says, like crazy and delusional.

"It's so hard. I'm injured, not stupid. And did I ask for this? No. This could happen to anybody."



It seems only natural that Mill House members would be angry. Angry at the drivers who struck them or the doctors who couldn't fix them up new. Furious at their faulty memories, their limping legs and stubborn fingers.

Many of them were angry, once. Priest says, "I was real — what do you call — irrational," when he woke from his year-long coma. He remembers picking up bedpans and throwing them at nurses who teased him. But now he says his accident must have been the work of God, since it steered him away from drinking and other errors of his young life.

These days, Priest, like many other members, has traded frustrated fury for good-humored patience. There are things to look forward to, from cooking chicken Parmesan next Tuesday to getting a job, to falling in love. "I got plans — well, we got plans," Hicks says, looking toward Young.

"You never know what happens in life," Hicks says. And no one knows that better than the people at the Mill House.

But getting a chance to live after you die is a blessing. No doubt about that. S



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