EDISON, N.J. — Without the calendar taped to the refrigerator in her parents’ kitchen, Kim Valentini wouldn’t know where her dad was. It’s not that he travels far or even that he’s hard to reach. It’s because she can’t remember from hour to hour — sometimes minute to minute — where he’s told her he’ll be.
Before she started inscribing his answers on the kitchen calendar, the 36-year-old New Jersey woman would find herself calling as many as seven times in a single afternoon to ask the same question: “Where are you, Daddy?”
Eleven years after a devastating car wreck, Valentini still lives with a brain injury that’s left her short-term memory spotty while whole sections of her long-term memory seem to have been erased.
She remembers she once worked as a contract administrator, but she can’t recall exactly what she did in her job. She remembers she used to like to ski and to dance, but she can’t recall why she liked to do either. She remembers an “old Kim” who was successful and confident, with a foolproof memory and a quick mind — but she can’t recall how to be that person now. She remembers that there was a car accident, but can’t recall the details of the night when, she says, “the old Kim died.”
Valentini's car crash contributed to some sobering statistics. More than 5.3 million people in the United States are living with long-term disabilities because of traumatic brain injury, or TBI, according to the Centers for Disease Control and Prevention. Each year at least 1.4 million Americans suffer a TBI — more than are struck by heart attacks.
Experts call it “the silent epidemic,” in part because the official numbers most likely underestimate the size of the problem. A TBI can do significant damage without leaving any visible signs, so the initial injury is often dismissed as just a bump on the head.
“There are countless ‘walking wounded’ who look just fine on the outside, but who aren’t the same on the inside,” says Jonathan Lifshitz, an assistant professor at the Spinal Cord and Brain Injury Research Center at the University of Kentucky Chandler Medical Center.
What's made TBI more visible is its emergence as the signature wound of the Iraq war. Advances in body armor and emergency medical care have allowed thousands of U.S. soldiers to survive bomb blasts that have devastated their brains. And now, ABC News anchor Bob Woodruff has brought TBI into America's living rooms with the story of his own brain injury suffered in a roadside explosion while he was reporting in Iraq last year.
But most cases of traumatic brain injury, like Valentini's, happen far from the war zone. More than 40 percent of TBIs are the result of traffic accidents — the most common cause of this type of injury.
Ironically, advances in protective equipment — seatbelts, airbags, helmets — may have led to increases in TBIs over the past decade or so, Lifshitz says. That’s because people who once would have died from injuries in an accident now live, but with badly wounded brains.
Brain damage is forever
Right now no one fully understands what happens when brain injuries like Valentini’s occur. But experts note that serious damage can result even if there are no visible indications of injury to the head, or even signs on a brain scan.
Therapy can help people cope with the changes, but it doesn’t repair the damage. Brain damage is forever, Ciceronesays, likening TBI to the loss of a limb.
“If you lose a leg, you wouldn’t expect it to regrow,” he explains. “It’s a long road going from the injury to learning to live a fulfilling life, but with limitations.
“We’re not looking to make you who you were. We’re trying to teach you to live with the person you’ve become — who you are now.”
The long road for Kim Valentini began when she woke up in a hospital in Virginia after an accident in which the Ford Bronco she’d been driving flipped over four times at high speed.
Valentini’s first memory after that accident is of her family crowded around her hospital bed and someone telling her she’d been in a coma for 17 days. She remembers asking for some Excedrin to quiet the throbbing in her head.
When she was released from the hospital, Valentini needed to move back in with her parents in Edison, N.J., so she could learn to walk and talk again.
Every sentence a struggle
The speech problems were especially distressing for Valentini, who’d been at the top of her class in high school and college. Every sentence was a struggle as common words eluded her. Often she’d blurt out a word that was close somehow in meaning to the one she was searching for — “bowl” instead of “pot,” for example. Even today the right word is often hard to come by. “My mom and dad joke that I speak in ‘Kimmerbonics,’” Valentini says with an easy smile.
Elusive words weren’t the only issue. If multiple conversations were going on at the dinner table, Valentini found she couldn’t focus on one. The longer the chatter went on, the more anxious and agitated Valentini would get. “It all sounded so loud in my head,” she remembers. “I’d be like, ‘Please just stop!’”
Valentini’s odd collection of symptoms are typical of those experienced by TBI sufferers, says Dr. Douglas H. Smith, director of the Center for Brain Injury and Repair and a professor of neurosurgery at the University of Pennsylvania in Philadelphia. The disparate symptoms stem from the diffuse nature of the damage that occurs in a TBI: Although the front sections of the brain are often affected, nerve cells connecting many other areas of the brain sustain injury.
Retraining the brain
Therapy for TBI focuses on teaching patients strategies to cope with their more permanent deficits and getting the brain to rewire as much as possible.
Sometimes brain cells can be coaxed into doing jobs they weren’t originally designed to do, says Dr. Mel Glenn, director of outpatient and community brain injury rehabilitation at Spaulding Rehabilitation Hospital and an associate professor at Harvard Medical School in Boston.
Just as an amputee can learn to walk in a different way using a prosthesis, a TBI sufferer can learn by practicing certain mental exercises to overcome some of the deficits caused by the injury.
The new circuits may not work as efficiently as the old ones, but sometimes they work well enough, saysCicerone of the JFK Johnson Rehabilitation Institute.
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'You're not the same person'
During the first two years after her accident, Valentini made impressive progress. She was convinced she could get “the old Kim” back. And, she says, “I was working really hard because my goal was to become independent so I could be my fiancé’s wife.”
But after two years, her fiancé told her he couldn’t wait for the old Kim. “He said, ‘I still love you, but you’re not the same person I got engaged to,’” Valentini says. She suspects her fiancé was also frightened by the responsibility. “I was very fragile,” she recalls.
That loss was almost too much. Suddenly therapy seemed like a chore, Valentini remembers. The goal that had been driving her was gone.
Glenn isn’t surprised by Valentini’s experience. “Marriages often fall apart,” he adds. “Spouses will say, ‘This isn’t the same person I married.’ Sometimes they’ll stick it out. But it’s not infrequent for someone to say, ‘I’ve got to move on with my own life.’”
And it’s not just spouses, Glenn says, adding, “I’d say it’s extremely common for them to lose friends left and right and to be cut off from their social networks.”
Generally it’s the families like Valentini’s who stick it out, Glenn says.
But while Valentini’s family continued to provide support, the funding for her therapy ran out. Valentini signed up for temp work, but never managed to keep a job for more than a few days. Employers didn’t understand when she wouldn’t remember what she’d been working on just a couple of minutes before. It was a low point, Valentini says, adding, “I couldn’t even do jobs that other people used to do for me.”
Things started to turn around in early 2005 when Valentini was offered a chance to enroll in a new intensive program at the Center for Head Injuries at the JFK Johnson Rehabilitation Institute. The program was designed to test therapies for people who had suffered brain injuries years before.
Therapists have been helping Valentini come up with strategies to remember words and to organize her life. They’ve taught her to leave Post-it notes when she gets up from her seat at work so she’ll remember where she left off.
And just this past month things seemed to come full circle as Valentini got her driver’s license back. Doctors at the center figured out the right medication to control the mild seizures that had plagued her since the car accident that had taken away so much.
It was one more step on Valentini’s long road to a new life. She knows the old Kim is gone forever. But, says Valentini, “sometimes I’m not even sure I want her back.”
With a job that absorbed almost every minute of her time, Valentini says the old Kim didn’t have time to appreciate much else in life. “This has been an awakening for me,” she says. “Now I’m seeing things most people don’t have time for. I have the time to stop and smell the roses.”
Linda Carroll is a health and science writer living in New Jersey. Her work has appeared in The New York Times, Newsday, Health magazine and SmartMoney.
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