A wound that won't heal: The trials in surviving brain injury
From USA TODAY last year
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It used to be a given that they'd die -- roadside casualties of car crashes, bike accidents, falls and violence.
That was before rapid-response helicopter rescues, trauma centers, high-tech neurology.
Now emergency medical advances save traumatic brain injury victims by the ambulance-load, creating a burgeoning army of walking, talking wounded. They are, say survivors, a silent disability group millions strong, receiving little or no help after the initial accident.
But that may soon change.
Last summer, Congress, supported by families, survivors, scientists and athletes, passed the Traumatic Brain Injury Act. The law gives official recognition to TBI and authorizes $24.5 million over the next three years for research, medical consensus-building and state grants. Money distribution starts this year.
''It's a tiny amount, frankly, but it's a good start because it makes people want to get involved,'' says George Zitnay, president of the Brain Injury Association, one of the act's most forceful proponents.
While some are still unsure of the act's healing powers, many affected by TBI see it as the first outstretching of the nation's hand to its brain injury survivors. Others note its potential to save lives: More than 50,000 die each year from brain injuries -- a third of all injury deaths in the USA.
''We've had brains since we were cavemen and we've had TBI since then, '' says Jane Summers of Durango, Colo., a doctor and injury survivor. ''But now we're at a point where it's becoming recognized.''
Adds Evelyn Buzzell of Groton, Mass., mother of a TBI survivor: ''We' re not letting this be buried any more.''
The invisible injury
At the supermarket checkout, you may not notice Clara Lyon's disability. There's no wheelchair to clue you in. No seeing-eye dog or personal attendant.
''When you're behind me in a line, you don't know I'm different from anybody else,'' the Woodhaven, Mich., woman says. But ''I may have forgotten how to write that check. You may get mad at me for not having it ready and you may yell at me.''
Lyon suffers from a traumatic brain injury. She was never in a coma, never hospitalized, never even unconscious after being rear-ended in traffic 21/2 years ago.
But that normally unremarkable accident was enough to bang Lyon's brain against the bumpy ridges of her skull, causing severe headaches, memory loss and organizational problems while leaving her intelligence intact -- often the case in TBI.
The irony and pain comes in the awareness. Survivors remember what they should be able to do, but simply can't do it after the accident.
'Panic'' is how Lyon describes those first few months of ignorance. ''I was losing a lot of information. If it was Monday, I would swear, 'Where did Saturday and Sunday go?' It was just a total fuzzout.' '
Lyon's injury puts her at the mild end of the traumatic brain injury continuum. Others are more severe.
Such is the case with James Brady, White House press secretary during the 1981 assassination attempt on President Reagan. Brady took a bullet in the brain and has been recovering, and advocating, ever since. Although better known for gun control efforts, he and his wife, Sarah, established The Brady Institute for Traumatic Brain Injury at Jamaica Hospital Medical Center in New York.
Professional athletes also are often affected. For many, such as former Chicago Blackhawks hockey player Michel Goulet or football quarterbacks repeatedly flattened by sacks, multiple concussions can lead to dizziness, memory loss and sometimes retirement.
But no matter what the long-term effects, TBI survivors say they are never quite the same afterward.
''Having a TBI is like you're going through a death and you have to grieve yourself,'' Summers says. ''You're fortunate enough to be alive, to survive your accident and attend your own funeral.''
Facts and figures
Because researchers are only now grasping the scope of the problem, statistics on brain injury are incomplete. At this point, the federal government estimates about 1.9 million Americans suffer some kind of traumatic brain injury each year. Half of those injuries cause at least short-term problems; about 260,000 are injured severely enough to be hospitalized, according to the Centers for Disease Control and Prevention.
And although a brain injury can happen to anyone, the typical victims are young men, whose behavior often puts them at risk.
One of the main problems, for researchers as well as victims, is recognizing TBI for what it is.
''There are people out there falling through the cracks,'' says Rick Waxweiler, director of the CDC's division of acute care, rehabilitation research and disability prevention. ''It sometimes takes them years to realize . . . what's going on -- why their grades are going down, why they're failing at work.''
Rampant misdiagnosis compounds the statistical nightmare.
That's especially true in mild cases, where the injured look healthy and never get to a hospital, but visit a family doctor later for their unexplained ailments.
''You can't get anybody to listen to you,'' Lyon says. It took eight months of pain and confusion before Lyon finally learned what was wrong.
In Massachusetts, Evelyn Buzzell believes her daughter Elizabeth's undiagnosed TBI from an auto accident in 1985 led to her suicide attempt five years later during her medical residency. ''She would call me in tears. 'I don't know what's wrong. I study harder but I can't learn it like I used to,' '' Buzzell recalls. ''We had a lot of signs.''
Sarah Raskin, an assistant professor of psychology and neuroscience at Trinity College in Hartford, Conn., says that although controlled studies verify mild TBI symptoms, medical providers' suspicion of the disability may add to the lack of support.
''People . . . think they're making it up,'' Raskin says. But ''I just can't believe this many millions of people will all come up with the same symptoms by coincidence.''
By gathering accurate numbers under the new TBI act, policymakers and the medical community will begin to sort out this disability. And that, says Waxweiler, is ''the first step in every public health problem.''
Coping with TBI
In extreme injury cases, a family's struggle for help often comes after the emergency is over.
That's what happened to the Frenches of Parsons, Kan.
''I brought home this monster and there was nobody out there'' to help, says Mary, a wife and mother of three. A 1995 van accident turned her husband, Jay, a responsible man who was holding down two jobs, into an irritable, irrational child, she says. ''I couldn't understand. I thought he was just being a jerk.''
A few months after the crash, an orthopedic surgeon sent Jay to a rehabilitation doctor who suggested Jay might have suffered an undiagnosed head injury. So Mary did some research on their home computer.
And then she found it. Symptom after symptom, story after story. All so achingly similar to the turmoil going on in her own home. ''I just sat there and cried, because you're not alone. Even though these people are so far away, you're not alone.''
Now, at least, she had a medical explanation for her husband's erratic behavior: Jay had a traumatic brain injury.
''We'd have probably ended up divorced,'' she says, if Jay was never diagnosed and she hadn't discovered an on-line way to vent.
Months of cognitive therapy helped Jay somewhat. But seizures and limited outpatient rehabilitation have slowed his recovery and kept him from returning to work. ''It kind of takes away your manhood, your feeling of importance,'' Jay says.
And the lack of income has taken its toll on everyone.
''Trying to raise a family of five on $1,000 a month of workmen's comp doesn't work,'' Mary says. ''If it weren't for church and family, I don't know where we'd be.''
Jay and Mary's sadness has trickled down to the children, especially the oldest. The 4- and 6-year-olds are happy to have their daddy as a playmate, but 10-year-old Brandon remembers Jay before the accident.
Father and son often fight now. And although he doesn't like to talk about it, Brandon once told his mom, ''I just want my old dad back. I don't like the new one.''
Neither does Jay.
''It seems like I never have a day without clouds.''
Hoping for acceptance
The support and information chasm the Frenches stumbled into is all too common, advocates say.
While half the states have some sort of TBI council or task force, only 20 fund services and 17 provide TBI-specific case management, says Susan Vaughn, director of the Missouri Head Injury Advisory Council.
Without state direction, shattered families nationwide have become experts in rehabilitation, psychology and bureaucracy -- patchworking a therapy regimen for their loved ones from existing, often inappropriate, mental health and mental retardation services.
Those living with TBI fear that a few million dollars sprinkled across the nation simply won't make a dent in correcting the deep care discrepancies across state lines.
So for now, families and survivors are hoping the act becomes a federal bullhorn that spreads the word.
Someday soon, supporters pray, the growing TBI population in schools, offices and playing fields will force the nation to recognize this public health wound. A wound that only exposure can heal.
Says Lyon: ''This needs to be as common a household word as AIDS, seatbelts and cancer.''
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If HU-211 is effective in coma patients who have suffered TBI, it may also have application for less severe, but still debilitating, injuries.
-Ariella |
