Silent Sufferers and Walking Wounded -- the Brain Injured
Posted August 1, 2007 | 11:01 AM (EST)
Read More: Breaking Living Now News
An ambulance blazed by the house. In our small summer community, the word spread fast. Some teens had been horsing around across the lake, throwing rocks in the water. One boy had been accidentally hit and his skull crushed on the left side of his head. He had been airlifted out of the small community hospital nearby to a trauma center downstate. The other boy was in shock.
I didn't know the boy, but I thought immediately of his family, of the pitted road they would all travel this night and the weeks and months to come, nursing him back from a brain injury. I knew this road well.
In the real world, traumatic brain injury (TBI) -- the leading cause of acquired cognitive disability -- has been described as a silent epidemic. Prior to the wars in Iraq and Afghanistan, I'd never given any thought to a brain injury. I could not have defined it, nor told you its symptoms. I only knew that anything affecting the brain sounded scary.
Under-funded, underappreciated and misunderstood, brain injuries remain a threat to public health. When allocating budgets for research, it has always been the poor stepsister of the neurosciences.
Astoundingly, in the U.S. alone, 1.5 - 2 million people a year suffer a brain injury. You might be shocked to learn, as I was, that figure is more than AIDS, breast cancer, MS and spinal cord injuries combined -- annually. And yet so little is understood about it. It wasn't even on most people's radar until the war.
Anywhere between 2.5 - 6.5 million people live with permanent impairment from a brain injury. Exact numbers are hard to lay your hands on because these are the people, as one doctor told me, "who live in the back rooms of homes all over America." They are a secret, silent minority.
People with these injuries and their families are often ashamed. There is an obvious stigma attached to anything affecting the brain. The ill-informed associate it with being retarded, slow or unable to function. But in so many cases, this is how it manifests itself to others.
Most sufferers are often unable to work or resume their old jobs because they can't seem to focus, concentrate or process information. Short-term memory is commonly affected.
The brain injured are called "the walking wounded" because their impairments may not be immediately obvious. Often people appear "normal" on the outside, but inside, things are terribly scrambled. Family members and friends can lose patience with explanations about "my injury" that may have happened years earlier. But especially without proper and ongoing therapy and rehabilitation, problems may persist.
Most commonly, those who have been in car accidents and suffered a frontal lobe injury, may have difficulty organizing simple steps, performing basic tasks, anticipating the next move or even remembering what just happened five minutes ago.
In January 2006, when a roadside bomb exploded next to my husband's APC in Iraq, we joined the ranks of this silently suffering group of Americans. We became one of the families who would take a long, uncertain journey to watch and help and wait interminably for their loved one to heal. And when the healing seems to slow down or plateau, the family is left with the unanswerable questions about how long it will continue. We were one of the very fortunate few who had a tremendous outcome. We are a lucky, lucky family.
Returning to work and reporting on the brain injured and veterans' care, Bob's journey shone a big spotlight on what so many members of our military are dealing with. Traumatic brain injury is already the signature wound of the war. And this new awareness has turned a much-needed beacon on the civilian population, who live every day with the consequences of car accidents, sports injuries, simple falls or spills, playground accidents, domestic violence, or, like the visiting family in our community, kids just horsing around.
A brain injury is not a pretty disease. And it has a dark side, which can range from personality disorders to outright rage and anger. I learned of one Marine's wife who had to be put into a safe house with her kids after her childhood sweetheart, hit by an IED in Iraq, had tried to strangle her in her sleep for the third time. And then there is depression. Coming to terms with the "new you" and processing the fact that you can no longer do what you used to do is devastating to many.
"Bob looks great!" people would say to me when we came out of our hibernation after his last operation to replace his missing skull. And he did. Yet I wanted to scream, "But how does he SEEM?" I knew the parts that had been broken and were gradually healing. I watched every painfully slow, tiny improvement and knew each deficit as surely as I knew every freckle on my twins' little bodies.
A brain injury is incredibly isolating. This is most acute if the loved one has lost the "filter" that we all apply to stop ourselves from speaking out or telling folks exactly what we think of them. The awful haircut on Aunt Bess, the giant wart on the new boss' face -- someone with a brain injury can "tell it like it is." This makes even the grocery store a situation fraught with embarrassment, and you can forget about a neighborhood cocktail party or a company BBQ.
The wars in Iraq and Afghanistan are creating a whole new generation of caregivers as well as wounded. Many of these wives are very young. And in other cases, it is Mom who gets a second chance at nursing her wounded son or daughter, not in their infancy, but in a new kind of horror, one that most often involves a circumscribed life and shattered dreams. Learning to cope with deficits like traumatic brain injuries, amputations, PTSD, personality disorders and outbursts can be a lonely and frightening path.
Relationships change when the person has changed. "For better or worse" takes on a whole new meaning when one spouse no longer recognizes the other, or when a frontal head injury has led to dis-inhibition or has badly tinkered with their personality or temperament.
Marriages with a brain injured spouse often don't survive, as caregivers report feeling neither married nor unmarried, emotionally and sexually unfulfilled. Naturally, there is often a real inequality in the relationship. I imagine it as a mother to a child. Where is the desirability in that? And how does love stay, I wondered in those weeks Bob lay in a coma, when a relationship has twisted so badly, and resentment, fatigue and sadness replace shared dreams, partnership and independence? And worse, to me, what if apathy replaced love?
The brain is the slowest organ in the body to heal. Neurons, those millions of tiny filaments that help fire the electrical connections throughout our brains, re-grow at a rate of one millimeter a month, painstakingly slow. That is why recovery from brain injury can take months and years, and the trajectory for that improvement may not be at all linear.
Current medical wisdom believes that there is a critical window of time after an injury, within the first year and a half certainly, where intensive rehabilitation can help rewire the brain appropriately. And that makes cognitive rehab one of the most critical components in therapy. In addition to speech, occupational therapy and physical therapy, cognitive rehab helps to "knit" the brain back together by exercising it as a muscle. It may be as elementary as crossword puzzles or flashcards or as complicated as writing exercises to expand the mind and jostle memory paths.
It is the cog rehab piece that is often overlooked in therapy, or not available, especially in the case of the returning vets. Not every rehab facility offers this and especially in smaller towns, there may not be a trained professional at all. No surprise, insurance often vastly limits the number of hours that are allotted. Due to the outdated idea that the brain has an end date for healing, it is often suspended after a period of time.
The vast numbers of people returning from the war with these injuries, an estimated 15-30 percent of the 1.5 million cycling through Afghanistan and Iraq, are helping to redefine what we collectively know about brain injury.
In the past there has been a conventional feeling among doctors that a brain injury is mostly finished healing after two years. There is growing evidence, and certainly many have told us, that the brain continues healing years beyond. Tricia Meili, known to the world as "the Central Park Jogger" told me that 12 years after her horrible beating, she is still seeing encouraging, ongoing evidence of recovery.
If none of the other facts and statistics move you. Let me hit you in your collective wallet. The annual cost for new cases of brain injury in the civilian world is between 9 -10 billion dollars as a country. Lifetime costs per person are between $600,000 - 1,875,000. That is a lot of chinkaluppas, as my father would say. And that doesn't even include our vets. Add that to the human cost of the war.
So what's my point? Well, the sad fact is how little we actually know about the brain and how much more research needs to be done to understand this most complicated of human organs. Government funding for this type of research and all of the neurosciences has been whittled down to a tiny nub over the past six years. Neuroscientists are desperate, feeling as if with proper resources we could be on the cusp of some major medical break-throughs.
Real empirical studies on the quality of life after brain injury are scarce. Impressions and information about patients are often inferential because lack of funds for research means that doctors rely mostly on the observations of family members.
The sad reality is that after aggressive treatment following traumatic brain injury, many patients are often relegated to custodial care in a nursing home setting, spending years without careful neurological assessment, proper therapy or imaging studies to track improvements. Often times, like with many returning vets, the patients live far away from the academic medical centers where they should receive ongoing testing and monitoring.
At the same time we are tackling our veterans' care and demanding sufficient cognitive rehabilitation, we need to remain focused on the other Americans who are suffering from this disease. Only then will we be able to better understand how to help the legions of silent sufferers.
And only then will we be able to best serve those brave Americans who have so generously served us. There is a plaque in the cemetery at Iwo Jima in Japan, "They gave of themselves today so that you could have your tomorrow."
Let's not make all the sacrifices of this current war happen in vain. Let's fight to support, prevent and heal this new generation of wounded, and all the generations of brain injured to come.
In the meantime, I am saying a prayer for the young boy and his family across the lake as they begin their own rollercoaster journey. Welcome to the club, I say with a heavy heart. It's a club in which no one wants to be a member.
For more information:
Brain Injury Association of America -- has a branch in each state that can help and offer assistance.
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