Traumatic Brain Injury: Putting the Pieces Back TogetherMar 2009
March is Brain Injury Awareness Month—a time when brain injury survivors, their families and advocacy groups join forces to build public awareness about what many call the “silent epidemic.” The Health Journal will introduce you to four Hampton Roads residents whose lives have been dramatically altered by brain injury, as well as local organizations helping survivors rebuild their lives, piece by piece.
By all appearances, Jim, Mary and Larry can’t be more different. Jim is in his 60s, with a stature that leaves him looming above a crowd. He speaks candidly with a tinge of gruffness, but not in an off-putting way. Mary, a 40-something former nurse, would be lost in that same crowd with Jim because of her small size. She has a quiet, breathy voice that belies her amped-up energy. Larry, also in his mid 40s, has an average build, above-average looks and is boisterously charming and funny.
The one striking similarity that binds them together is hidden out of sight, but definitely not out of mind. They are living with the effects of traumatic brain injury, or TBI.
“My whole life changed tremendously when I [had] the accident more than 30 years ago,” remembers Jim, who was stationed with the Navy in Scotland at that time. “My personality changed completely because of my brain injury. I couldn’t be compassionate or loving anymore, and my behavior became impulsive and inappropriate. I was depressed and angry because I knew I was a different person, and I felt like I had no control over myself. After years of therapy, I’ve learned to adjust my life and focus on my strengths instead of my weaknesses.”
What is TBI?
The Brain Injury Association of Virginia (BIAV) identifies brain injuries as either non-traumatic or traumatic. Non-traumatic injuries can result from stroke, lack of oxygen, infection, brain tumors, shaken baby syndrome, some types of whiplash and exposure to toxic substances. Traumatic injuries, like the ones Jim, Mary and Larry endured, are categorized as either an open- or closed-head injury. With an open-head injury, the skull is crushed, seriously fractured or penetrated. Closed-head injuries are the more common of the two and are usually the result of falls, motor vehicle crashes, assaults and sports/recreation accidents in which the skull remains intact.
All brain injuries can lead to physical, cognitive and psychosocial or behavioral impairments ranging from balance and coordination problems to loss of hearing, vision or speech. Fatigue, memory loss, difficulty concentrating, anxiety, depression, impulsivity and impaired judgment are also common after a brain injury. Even so-called “mild” head injuries can have devastating consequences that require intensive treatment and long-term care.
The National Institute of Neurological Disorders and Stroke (NINDS), headquartered in Bethesda, Md., says symptoms of a TBI can be mild, moderate or severe, depending on the extent of damage to the brain. A person with a mild TBI, for example, may remain conscious after the injury or may experience a loss of consciousness for only a few seconds or minutes. Other symptoms of mild TBI include headache, confusion, lightheadedness, dizziness, blurred vision or tired eyes, ringing in the ears, a bad taste in the mouth, fatigue and/or lethargy, a change in sleep patterns, behavioral or mood changes, and trouble with memory, concentration, attention or thinking.
A person with a moderate or severe TBI may show these same symptoms but may also have a headache that gets worse or does not go away, repeated vomiting or nausea, convulsions or seizures and an inability to awaken from sleep. Also symptomatic of moderate or severe TBI are dilation of one or both pupils of the eyes, slurred speech, weakness or numbness in the extremities, loss of coordination, and increased confusion, restlessness or agitation.
Friends empowering friends
Jim’s injury occurred when he fell off a bike and hit his head on a rock. Mary and Larry were hurt in separate car accidents. All of them remember what their lives were like before their accidents. Larry, for example, reminisces about the days when he had his own apartment. However, because of their resulting disabilities, none of them will ever be able to live independently again or realize many of the dreams of their youth. But together, they have found the hope of achieving a more empowered life through their membership at the Beacon House, a “clubhouse” for brain injury survivors, located in Virginia Beach.
“If I wasn’t able to come to the Beacon House, I would be sitting around the house all day,” says Larry, who is not employable because of his brain injury and, therefore, lives with family members. “All of my friends are here, and I feel like I am part of a community. We all sign up for chores every day, and my chore is to take out the trash, which makes me feel useful.” Remarkably aware of his injury, Larry nonetheless says he has trouble seeing past the present moment.
The Beacon House is one of only 16 brain injury clubhouses in the nation, seven of which are in Virginia—a testament to the state’s commitment to improving mental health services. Unassuming on the outside, the day facility is outfitted with comfy couches, several round tables for eating and activities and a kitchen for cooking the midday group meal. At least 31 people with brain injuries, ranging in age from 29 to 62, congregate there weekly. Essentially, they come because they have a difficult time fitting in anywhere else.
“People come as many days as they want—it’s all voluntary,” says Joann Mancuso, director of programs at the Beacon House, who has spent the last 30 years working with brain injury survivors. “Many of them come five days a week because they really have nowhere else to go, and here they have a sense of belonging.” Most of the club members are well-adjusted to life after TBI, adds Mancuso, though some still feel angry about the unexpected turns their lives have taken.
The Centers for Disease Control and Prevention report that brain injuries are the nation’s leading cause of death and disability among children and young adults, and an estimated 28,000 individuals are treated for brain injuries in Virginia hospitals annually. Out of those 28,000, approximately seven percent sustain brain injuries severe enough to result in some level of lifelong disability.
According to the Brain Injury Association of America (BIAA), based in Washington, D.C., brain injury is often called a “silent epidemic” because it affects people in ways that are invisible. An injury, left untreated, can lower one’s performance at work or school, interfere with personal relationships and bring financial ruin. The annual estimated cost to the nation exceeds $60 billion, and consumers mistakenly believe employer health plans or the government will pay for needed services in such a health crisis. In reality, insurance policies are geared to wellness and routine care, strictly limiting the type and the amount of rehabilitation available to most people.
Mancuso and Matt Buckley, executive director of the Mary Buckley Foundation (also based in Virginia Beach), are committed to ensuring local brain injury survivors are given opportunities to improve their lives, no matter their income level. Buckley started the Foundation in 2005 after his wife, Mary, suffered major brain damage from complications of a routine foot surgery in 2004, which ultimately led to her death in 2006.
In 2008, due to the overwhelming success of the six other brain injury clubhouses throughout Virginia (the closest being in Newport News), Mancuso and Buckley were awarded a state contract to establish the Beacon House. The new clubhouse replaced the S.E.E.K (Survivors Exploring Empowerment and Knowledge) day program, which Mancuso founded in the 1990s and directed for more than a decade.
Building a healing community
The International Brain Injury Clubhouse Alliance, based in Canada, defines a brain injury clubhouse as a community of people who have sustained devastating, life-altering events and need the support of others who believe that healing is possible for all. Through participation in a brain injury clubhouse—typically a free service—people gain opportunities to form friendships as well as access education, employment and the services and support they may individually need. The first such clubhouse for the mentally ill, Fountain House in New York City, opened in 1948 and has served as a model for others worldwide.
Dr. Scott Sautter, a clinical psychologist with Hampton Roads Neuropsychology, says programs like the Beacon House are beneficial on many levels, especially for many brain injury survivors facing depression and anxiety. “If you are not aware that you have a [brain injury], then it is not going to present as emotional distress,” says Sautter. “But if you recognize that you do have a problem and you are aware of it, then there is a strong probability you will become depressed.”
Patricia Haldeman of Williamsburg knows all too well how a lack of professional understanding about brain injury and a subsequent failure to intervene can have a devastating effect on someone with such an injury.
Just shy of his third birthday in 1987, Haldeman’s son John ran behind a playground swing and was struck hard on the right side of his head. There were no obvious signs of concussion or external injury, and the pediatrician advised against an emergency room visit because John didn’t lose consciousness and his eyes were equally dilated. Twenty-four hour observation at home did not reveal any obvious signs of trauma, and Haldeman thought everything would be OK.
In reality, the blow to John’s head had caused a closed-head brain injury. Haldeman soon knew something was wrong. “The first change that I remember is that he went from being completely laid back, affable and easily redirected to having an extremely anxious demeanor,” says Haldeman. “He refused to go to bed at night, and he would hold onto my leg going into nursery school.”
Despite the almost immediate physical and behavioral signs that continued to worsen as years passed, Haldeman says John’s injury remained undiagnosed for the next 16 years because the medical professionals and school systems the family encountered were unaware of the possible symptoms of traumatic brain injury. “My numerous pleas for help to physicians and John’s teachers were ignored,” she says.
The neurologist who finally diagnosed John with a brain injury at age 18 described the inconsistency between John’s high I.Q. and his failure to achieve academically as a major symptom that his difficulties were related to a TBI—one that potentially could have been identified by physicians years earlier.
“He had a really enormous intelligence—but it was just kind of stuck, and he knew it,” says Haldeman. “If he had been diagnosed, he probably could have been a physicist and had a relatively normal life. He would have always had problems, but if you learn when you are a child how to strategize around them, then it just becomes part of your life. He could have coped. He had enough skills. He could have made it.”
After he was diagnosed with TBI, John was placed in a nationally known brain-injury treatment program. But because he had struggled alone for so long, John could not let go of the long-standing patterns of adaptation he had created.
“When John did not immediately respond to their methods of treatment, even this group of professionals, trained in assessment and treatment of brain injury, used shame as a teaching tactic,” says Haldeman. “Since John had suffered shame throughout most of his life because he was unable to succeed, without any known reason for his failures, this shame tactic caused him to give up.”
Haldeman says that at the age of 22, John purchased a gun, put it to the exact area of his head that had suffered the injury and caused him a lifetime of social, psychological and emotional pain, and pulled the trigger. “I’m sure he just didn’t know what to do and had looked to me—and I couldn’t help him,” says Haldeman tearfully. “In many respects, I feel like I failed him, along with the medical community. I think if the injury had been diagnosed, John could have found a way in this world and could have made a way for himself. I think the psychological damage from the judgment [of others] and the isolation that went with it is really, in the end, what killed John.”
Since John’s death, Haldeman has dedicated her life to raising awareness and understanding of TBI. In conjunction with the Brain Injury Research Center at Mount Sinai School of Medicine in New York, Haldeman launched the Web site “Brain interrupted” (www.braininterrupted.com) to share John’s story and educate physicians, neuropsychologists, psychologists and educators, as well as parents, family members and friends of people who have experienced a TBI.
The official position of the National Institute of Neurological Disorders and Stroke is that anyone with signs of TBI should receive medical attention as soon as possible. Because little can be done to reverse the initial brain damage caused by trauma, medical personnel try to stabilize an individual with TBI and then focus on preventing further injury. Moderately to severely injured patients typically receive rehabilitation that involves tailored treatment programs in the areas of physical therapy, occupational therapy, speech/language therapy, physiatry (physical medicine), psychology/psychiatry and social support.
Dr. Joseph Koen is one of six neurosurgeons with Neurosurgical Specialists, located in Norfolk. He is also part of a team of doctors at Sentara Norfolk General Hospital’s Level I Trauma Center, which serves all of Hampton Roads. There, a team of trauma physicians and nurses—and pilots aboard the Nightingale air ambulance—meets the critical care needs of over 52,000 local residents per year. Koen says many of his patients could have prevented a brain injury by following simple safety precautions, such as wearing a seatbelt and a helmet (see side bar on page 22). “I would argue that the most important aspect of TBI is prevention,” he says.
Educating the public and medical professionals
The Brain Injury Association of Virginia (BIAV) hosts numerous programs and events throughout the year and is actively involved in increasing awareness of TBI by educating the public about the physical, emotional and behavioral consequences of a brain injury.
Each year, Marylin Copeland, BIAV’s resource coordinator for Hampton Roads, organizes a presentation for Dr. Paul Aravich’s neuroscience class at Eastern Virginia Medical School. More than 100 medical and physician assistant students and professors attend to hear TBI survivors and their family members talk about how brain injury has affected their lives. “The main point of this presentation is to help these future medical professionals understand more about brain injury and how survivors have negotiated life and continued to grow and change since their injury,” says Copeland.
A BIAV program entering its 26th year is Camp Bruce McCoy, which is held each spring at the Triple-R Ranch in Chesapeake. The nation’s largest and longest-running camp for brain injury survivors, Camp Bruce McCoy is a recreational program designed to provide challenges, build confidence, foster new friendships and, most importantly, be fun.
Twenty-nine-year-old Wes Ashberry of Mathews County has attended Camp McCoy for the past five years. At 17, Wes was involved in a car accident that left him with a brain injury and the inability to communicate verbally. Ashberry’s mother, Theresa, says though her son has verbal limitations he makes it clear just how much he enjoys his annual camp experience: “He has developed his own sort of sign language and communicates with other gestures as well. He lives for Camp McCoy, and he looks forward to it from the moment he leaves each year to the time he is able to [go] back. It gives him a sense of independence and the chance to get away from Mom and Dad—he just has the time of his life, and [he] gets to do fun things every day like horseback riding, swimming, canoeing and archery.”
“Fun” is something 44-year-old Larry also tries to bring to those around him at the Beacon House through his sense of humor and positive outlook. He also initiated a program in 2002 to share his experiences as a brain injury survivor with the community. He, along with two other Beacon House members, visits 10 Virginia Beach high schools annually in the fall and spring (often just before prom night) to talk to approximately 4,000 students about the importance of making smart choices, such as not drinking and driving, to protect themselves and others from harm. (Larry’s brain injury was the result of a car accident in his early 20s—caused by driving under the influence of alcohol.)
“You know what I like?” asks Larry. “Every time we go back to talk to the students at the school, all I hear is ‘Hi Larry! Hi Larry! Hi Larry!’ I look at the kids and smile, because it makes me happy that they remember me. Because of my brain injury, I don’t remember them—but they remember me.”