Traumatic brain injury survivors know life can change in an instant
It was 1992, Labor Day weekend, when Joe Evans was left for dead.
He was 20 years old. Newly discharged from the Air Force after the first Gulf War, his motorcycle, a Honda Hurricane 1000, hummed beneath him along a two-lane highway on the outskirts of Phoenix, Ariz. It was dusk. A car approached and passed him. He later passed the car, and that’s when it hit him. Suddenly he was flying. His bike went one way. He went the other. His helmet flew off upon impact. The car drove on.
Twelve hours later, a hunter caught something out of the corner of his eye. It was the white sock of Evan’s foot. He was lying in a drainage ditch, more than 200 feet from where he’d been ejected from his bike.
Evans had just started a new job the day before, so he had no medical insurance, and the military wouldn’t help with health-care costs because he’d had an early discharge. Basically on medical welfare, they stuck a tracheotomy tube down his throat at a nursing home, supposedly forever.
“I was expected by rights to die,” says Evans, whose voice and eyes are warm and patient.
Luckily, his dad got him into a community hospital, where, to everyone’s surprise, his trach could be removed in one day, though it’s usually a slow process. Seeing unexpected signs of recuperation, he was transferred to the renowned Barrow Neurological Institute in Phoenix about six weeks later. He was legally blind, with severe swelling in his head. He couldn’t walk or talk.
“I was a blind, mute, quadriplegic when I first woke up,” he says.
He’d suffered a TBI—an acronym slowly becoming more recognizable with the general public—a traumatic brain injury.
About 1.5 million people suffer a TBI every year, according to the Barrow institute. Many of them are soldiers returning from the wars in Iraq and Afghanistan. Roughly 30 percent of veterans treated at Walter Reed Army Medical Center in Washington, D.C., have been diagnosed with a traumatic brain injury. Most of those injuries came from being near improvised explosive devices, or IEDs. And just as the public and health providers have had to learn more about a different, but related set of letters, PTSD (post-traumatic stress disorder), the average person is just beginning to hear about TBI. Harder to see and slow to diagnose, it’s been called the “invisible wound” and a signature injury of the wars in Iraq and Afghanistan. Those soldiers are waking up to a life Evans, and others like him, have been living for years.Mr. Joe
Though initially not expected to live, Evans walked out of the hospital six weeks after being taken to Barrow.
“I’d been the escape artist there,” he says. “I could get out of any restraint.”
He was becoming a danger to himself and other patients. They let him go early with the idea he’d be back for therapy. But he didn’t come back. He did his recovery himself. Self-conscious, with unclear speech and weighing barely 100 pounds, he worked out at a gym to recondition his body. It was the gym of a community college, where he was taking a class about how to use your memory. (Taking a class is something people who’ve had a traumatic brain injury often find difficult to do, given that some have difficulty retaining new information.)
Evans was also handling the legal investigation of his accident at the time. Not being able to remember it well, he truly had to investigate it like anyone else would. Attorneys had told him there was no way he could win his case. But he was able to prove he’d worn a helmet that flew off when he hit the ground and that it was a hit-and-run. He was able to claim an uninsured motorist clause on his own insurance for it. The case was settled out of court.
With one case under his belt, he intended to transfer to law school. But in an English class, he did a report on occupational therapy and found himself drawn to the profession, given his experience treating himself. He’s since become a certified occupational therapy assistant who works with special needs students for the Washoe County School District. He and his wife, Kim Evans, have a 4-year-old daughter but would also like to foster a special needs child.
“You used to tease the special ed kid in high school,” says Evans. “But now I’m the special ed kid.”
You wouldn’t know it to look at him. What most people can’t see is how Evans has trouble swallowing sometimes, or how his left leg is weaker than the right, giving him a tendency to limp after a particularly long day. Or the daily aches and pains that run through his body, especially from his left ankle to his hip. As for his speech, it’s a nearly unnoticeable millisecond behind most people’s. He looks perfectly normal.
Yet he says he’s a completely different person now.
“I still have the memories I had before the injury, but it’s like they belong to someone else. Everyone who knew me before says I’m calmer now, less arrogant.” He says he’s had a chance to reevaluate his priorities.
The brain being a sensitive thing, TBIs affect everyone a little differently. Rather than becoming calmer, many with a TBI are more erratic, angrier and sometimes violent. Their side effects may be more severe, with more heavily slurred speech, swaying body movements, dizziness, sleep problems—things that can affect their ability to do their jobs or get along with their families. Not everyone can do what Evans did— take a traumatic event and turn it into something useful for their lives and others.
“One of the most frustrating things is, if I could do this now after an injury, what could I have been capable of before the injury?” says Evans.
Evans is now trying to spread a general awareness of traumatic brain injuries throughout the community. He’s on the board of the local Traumatic Brain Injury Council and is president of the Head Injury Association of Northern Nevada, a TBI support group.
“Even professionals in rehab settings, some of their beliefs have been totally wrong about TBI,” says Evans. “Some people in my own profession have been the most discriminatory, though not at the school district. As far as they know, I’m Mr. Joe, the O.T.”Everything can change
It’s about 10 minutes before 7 p.m. in the Renown Rehabilitation Hospital cafeteria. Two people are here in this sterilized room, a woman sitting quietly at a table, and Richard Eades, who’s eating a roast beef sandwich and drinking a Pepsi. They’re both waiting for the monthly Head Injury Association of Northern Nevada meeting, informally called the TBI support group, to begin.
“We try to help other people and ourselves,” says Eades about the group. “It seems like people don’t really care. Like ‘What’s wrong with you?’ Like you’re mentally retarded.”
His voice has a slight nasal tinge, his body sways a bit, and he uses his hands to accentuate his words. A stranger might know something was wrong with him but wouldn’t necessarily know what.
Eades was run over by a drunk driver 18 years ago in an accident that killed his cousin and gave him a traumatic brain injury.
“People look at you like you’re, uh, like something’s wrong with you,” says Eades. “I’m sorry to say it: The world is screwed up. People don’t understand what’s wrong with people like us.”
Just then three more group members walk in. “Richard!” Eades apparently hasn’t been to a TBI meeting in a while. He play punches one of them as they banter back and forth. “You behave!”
More people file in, some in costume, as tonight is the group’s Halloween party. Once all are settled, they sit around a table, and group president Joe Evans begins the meeting. There’s a guest speaker tonight, April Wolfe from the city of Reno. She’s a therapeutic recreation specialist, who tells them about things like a local wheelchair rugby team and an adaptive sports equipment rental program they could get in on. Then, by way of introductions, the members go around the table giving their names and, if they feel like it, telling the stories of their accidents:
There are people whose loved ones have suffered a TBI—a woman whose boyfriend got in a wreck while driving to visit her; a caregiver for someone who had an accident three months before.
There’s 23-year-old Ryan Hume, dressed tonight as the Grim Reaper. He’s a ham, constantly vying for attention and making jokes. His speech is difficult to understand and often needs translation. But he tells his story: When he was 17, he was getting ready to jump off a cliff and into Lake Tahoe. Mid-run, his friend told him to watch out for a woman swimming below. But it was too late for him to stop; the information caused a hiccup in his dive instead, causing him to hit land and then roll into the lake. He was submerged underwater for three-and-a-half minutes. Someone with CPR happened to be swimming there at the time and kept him alive while a rescue helicopter that happened to be flying nearby came down to save him and take him to a hospital.
“There really is a god and a devil,” says Hume. “Both of them spoke to me in my coma.” And both seemed to be with him the day of his accident.
Marc Salerno is Hume’s friend and roommate at a local TBI house operated through High Sierra Industries. A hugely positive person, Salerno says TBI stands for “Totally Beautiful Individual.” Dressed as The Joker, he explains how he was shot in the right eye with a .22 in a gun accident. He was in a coma for nearly nine months. “I tell people I was just trying to get caught up on sleep,” he says with a smile. “I’m just thankful to be alive.”
Many of the people here tonight feel like they died in a way when they had their accident and, for better or worse, were reborn.
“Debra” sits beside her husband “Lou”—they asked that their identities remain anonymous—and tells of the car accident they had 38 years ago that broke every bone in her head. She’s now wheelchair-bound and dealing with both physical and psychological pain. With her short-term memory loss, she may ask her husband to make her tea and by the time he’s brought it to her, she’s forgotten she asked for it. She’ll take unscheduled “naps” where she just passes out. She knits a green scarf as she talks. The knitting, she says, has helped strengthen her arm.
“However old you are, I died at 20,” says Debra. “I had to start over at 20.”
“Welcome to my world,” says Hume, adding that it was like someone knocked him over the head, and he had to start all over again.
Joe Eassa describes how he was driving to work one day on a two-lane highway, his seatbelt strapped on, when he got into a head-on collision. The seatbelt broke upon impact. He woke up eight weeks later in the hospital. He had to relearn how to do everything—walk, talk, move, drive. He lost his sense of smell and has a left-side weakness. He’d done auto parts work all his life and could remember everything about it, but when he wanted to go to school to be a physical therapist, he discovered he couldn’t hold on to new information.
“I was killed when I was a little kid—22 years at the time,” says Eassa. “When I woke up, I was a different person. I’m a lot happier about different things. Fortunately, I have things to be happy about. It was like growing up all over again. I like riding my bicycle a lot. Those wheels were close to being wheelchair wheels.”
While the stories vary, there’s a hard truth they all share: Everything can change in an instant.Trauma overlap
If 1.5 million people get a traumatic brain injury every year—be it from a roadside explosion, gunshot, car accident or nasty fall—why are we just starting to hear about it? The call for TBI awareness is largely due to the numbers of veterans coming back with one. Since October 2001, 1.64 million soldiers had been deployed to Iraq and Afghanistan. Of those, 320,000 experienced a traumatic brain injury.
RN&R contacted every veteran-affiliated organization in Reno for a month, and even hit up social networking sites, to find a veteran with a TBI to share their story here. By press time, we turned up empty. But the service providers charged with caring for them shared their expertise.
“It’s been our experience that when the war first started and there were a lot of TBIs coming back, they basically got them medically stable and forgot about the services they need for lifelong,” says Kelleen Preston, a TBI program specialist in the Office of Disability Services and a member of the Traumatic Brain Injury Council. “There isn’t a lot of information provided to the service providers concerning what the needs are for people with TBI.”
In fact, Veterans Affairs didn’t come up with a screening process for TBI until 2007. “So I don’t believe incidents are up; I think it’s because the screening was up,” says Alicia Adams, a registered nurse and program manager at the Department of Veterans Affairs. “We’ve gotten better at identifying PTSD and TBI.”
And yet, unless veterans are referred to a special polytrauma center for specialized treatment—the nearest being in Palo Alto, Calif.—they receive the same treatment for TBI that they would for PTSD: a variety of weeks-long treatments for symptoms management, anger and substance abuse issues and optional trauma-focused therapy. A neurologist decides their individual treatment needs. More severe TBI cases can be referred to a polytrauma center, which provides a treatment plan for the local VA to do with the veteran.
“The brain stem can become rattled within the cranium, so there can be very subtle damages when it appears nothing has happened,” says Edwina George of the Reno Vet Center, which provides veterans counseling. She says a TBI is hard to spot from a therapeutic standpoint. “[People] often come in with PTSD but discover through the treatment process that they have TBI. The brain can be injured in very subtle ways, so it looks like PTSD sometimes.”
Dr. Cara Eggers, a clinical psychologist with the Department of Veterans Affairs, explains that many symptoms of PTSD and TBI overlap. These include noise sensitivity, sleep problems, impaired concentration, memory problems, impulsivity, depression, irritability and aggression. All of this depends upon the part of the brain affected. Meanwhile, there are very few studies done on coexisting treatments for TBI and PTSD.
“Because many people who have TBI initially also have PTSD, PTSD treatment for both populations is important,” says Eggers.
People often don’t realize they’ve had a traumatic brain injury for months or even years after it happened. When they come back from war, veterans get screened, but they’re often in a hurry, says Eggers, and don’t realize until later the full extent of their problem.
Adams says that, with explosions, concussive waves flow in the brain, which can bruise the brain depending how close the person was to the blast. She says the person may not realize they’ve gotten a brain injury. It’s often family members who alert them to the problem by noticing they’re acting different than they did when they left for their service.
“We get veterans come in saying, ‘I don’t know why I’m here. My wife made me come.’ That’s quite common,” says Eggers. “The most frequent complaint from family members is, ‘This person is much more irritable.’ The second most common is the veteran has pushed people away so much that the relationship has suffered.”
Adams and Eggers say it’s important that people who’ve had a TBI get help, for a variety of reasons. For one, people who’ve had a brain injury are more likely to get another, says Eggers, adding that a 2009 study found people with mild TBIs had more medical issues and missed more days of work, even more so than people with PTSD.
“Getting help early before these things spiral down for veterans and their families, that’s really important,” says Adams.
“I think our society is becoming more aware of these sorts of injuries in these wars,” says Eggers. “As people become more aware, we’re hoping people understand more about these issues.”
That’s the hope of Joe Evans, as well.
“Regardless of our physical appearance or how we sound when we talk, it doesn’t mean we’re stupid,” says Evans back at the group meeting. “What’s on the surface is not what may be going on in our minds.”
He continues, “The biggest thing is how your whole life can change … [Finger snaps.]”