The Irony of Brain Injury
While some patients with a brain injury are able to return to work, others reveal how their often-normal appearance belies the lingering cognitive effects of brain injury.
David Aschmann is a cheerful and engaging 32-year-old single father of two young boys. He had a great job with a Boston software firm that sent him to places like London and Tel Aviv. But four years ago on a business trip to Paris, David was hit by a motorcycle and spent 28 days in a coma. When he regained consciousness, he had no memory of the accident and was surprised to learn he had two sons.
When he returned to the United States, David spent 13 months doing inpatient and outpatient rehabilitation in New England and three more years undergoing day program and outpatient therapy at Shepherd Pathways, Shepherd Center’s post-acute rehabilitation program for people with a brain injury. Now, he says: “Things are very different. I’m learning to live a new life.”
David, who lives in Atlanta, is one of more than 5 million people in the United States who have a brain injury, the leading cause of death and injury for people under the age of 45. Brain injuries are notable, in part, because unlike most injuries, which are visible – a broken leg requires a cast, a wound needs stitches – brain injuries are often invisible.
David looks normal, and in many ways, he is normal. But the lingering effects of his injury include struggles with processing speed, confusion and memory loss. Going back to his old job is not feasible for David, but he is volunteering at his children’s school. He has some difficulty with tasks that were easier for him before his injury, but he says he finds fulfillment in being involved at the school.
The disconnect between appearance and reality is confounding not only to those who have a brain injury, but also to people around them. Where people with visible disabilities often get the benefit of the doubt, those with brain injuries often do not.
“The assumption is that when people with brain injuries get out of the hospital, they should be OK,” says Terri Kohn, a licensed professional counselor at Shepherd Pathways. “If you look as good as before, the expectation is for you to be the person you were before. But that’s not the case, and friends and family may think you’re lazy, selfish and disinterested. The brain-injured person may not initiate tasks or participate in the family as before, and it can cause anger and frustration for other family members.”
Some people have a full recovery while others have lingering effects physically, emotionally and cognitively. The goal of rehabilitation is to optimize a patient’s independence and quality of life in the home and community.
“Brain injuries are very complex, and simply getting someone who’s been in a coma to walk again, and feed, bathe and take care of their self is a huge step forward,” says Debbie Page, a vocational rehabilitation case manager at Shepherd Pathways.
Kohn and Page are part of a rehabilitation team that includes a physician, speech, physical and occupational therapists, therapeutic recreation specialists, nurses and case managers. The team also includes the patient, family and others close to the patient.
“It is always a challenge to get everyone on the same page,” Page says. “We work hard to help patients and families move through their understanding of brain injury and adjustment to changes in their lives as they transition back to school or work.”
Kaela Matthews-Webb of Statesboro, Ga., says that when her firefighter husband, Lamar Matthews-Webb (see sidebar), was treated at Shepherd Center for a traumatic brain injury (TBI), the education and counseling she received – individually and in groups – was invaluable.
“They broke down the science of the brain and explained what had happened,” she says, “and they told me the plan, where they wanted to go. It helped me manage it all and understand that when he got frustrated as he progressed, it was normal and would get better. And it did. Shepherd’s whole approach put me more at peace. They were just awesome.”
For people who are unable to return to work or school, Kohn conducts support groups that provide a comfortable and supportive environment where they can come to terms with the changes in their lives.
“Their issues are the typical ones we see with brain injury – things like a lack of insight into their condition,” Kohn says. “They think, ‘I’m fine.’ But by the time they get to a group, they’re more aware of what’s involved. They have already been home and found that things that used to be easy are challenging. They go through a grieving process and learn how to cope with anger, sadness and anxiety.”
One such group meets weekly for two hours with Kohn in a conference room at Shepherd Pathways. This past fall, nine of them talked about their frustrations and the importance of the group to them.
Bonnie Short, 64 of Alpharetta, Ga., was injured in a motorcycle accident, then treated and released. After six months of cognitive problems and losing her job, she was diagnosed with a brain injury and referred to Shepherd Pathways. Although unable to find another job, working with a therapist and attending the group have given her hope.
“This is the only place where people understand what I’m going through,” Bonnie says. “It’s a beautiful thing where we share and we can laugh. We’re not isolated and alone.”
Seated next to her is Kim Guest, 50 of Roswell, Ga., who sustained a brain injury after a fall in 2010. Two years later, she still had recurring headaches and inner ear problems that made it difficult to think, talk and keep her balance. Her impairments required her to make a list to remind her what to do in the shower: Wash hair, rinse hair; wash body, rinse body; etc. Even now, watching television makes her nauseous. A trip to Walmart is so disorienting that Kim’s husband must wear a bright orange shirt so she can find him.
“My career was about people,” Kim says. “I was a hotel and restaurant administrator, but now it’s difficult to go to a restaurant and have dinner.”
Like some brain injury survivors, Kim finds social settings difficult. “I can’t keep up with all the people,” she says. “If I go to a wedding, I sit in a corner facing the wall so I can only see one or two people. Otherwise, it’s overwhelming.”
Keith Wilson, 53, of Atlanta, was hit by a car while vacationing in the Cayman Islands in 2001 and has been a member of the group since. Although he looks fit and healthy, he is unable to return to work and has had to deal with the suspicion that he is malingering.
“I was like a child and had to relearn things all over again,” he says. “I wanted to take leaps and get back to where I was, but I kept climbing that hill and sliding back down again. That hurts. That’s the hardest thing.”
Randy Nguyen, 20, of Norcross, Ga., was beaten in 2011 by five inmates while he was in jail. He spent seven weeks in a coma and a year later still experienced short-term memory loss.
“I’ll pack a lunch the night before I’m going out and put it in the refrigerator,” he says, “and five minutes later, I’ll get up and check to see if I’ve got everything. When I check it, everything’s there, but I keep checking like it’s going to disappear.”
Despite his experience as an executive before his injury, David Aschmann says his memory loss and lag in processing speed prevent him from taking on tasks that require leadership.
“I forget certain aspects and may not comprehend something until the next day,” he says. “Other times, I’ll sit there listening to people talk and I have no idea what they’re saying. It takes my brain a while to catch up. Some days, I’m quicker than others. People get confused when they see that. They have no clue what brain injury is about.”
Bonnie’s injury so affected her cognitive skills that she found it difficult to respond to things such as a simple, two-sentence email.
“What I think it says is never what it really means,” she says. “I get the words, but I’m not comprehending them right. And I can’t trust what I hear, either. It may not be what people are actually saying.”
The problem, Kohn tells them, is that their brains are not properly processing visual and auditory cues. “With these cognitive problems say ‘I’ll get back to you,’” she suggests, “but you’ve got to remember to get back to them. Jot it down, and after you process the information, then respond.”
Atlantan Michael Kaplan, 68, sustained a stroke during an operation that caused his brain injury. He has learned to repeat what people say to him. “And they say ‘correct,’” he says. “Otherwise, I lose it.”
One of the most confounding aspects of brain injury is that it can cause opposite reactions in different people. Shawn Webb, 24 of Carrollton, Ga., for example, sustained a TBI after being electrocuted at a construction site. Once easy-going, Shawn says that now: “Certain things set me off. My temper is worse than it used to be.”
Bonnie has had a similar experience. Before her injury, she says, “I had no highs and no lows. I never had any anger. Now, anger is the only thing I feel on a regular basis.”
On the other hand, Randy says he used to get mad easily. “But since my injury, it’s totally changed.”
The changed behavior– whether anger, confusion, memory loss or something else – caused by brain injury is often as hard on the family as it is on the person with the injury.
“The family may be aware of the problem long before the person is,” Kohn says. “But patients don’t have that awareness at first, and it takes them a while to catch up. And the family wonders what to do with them.”
“Sometimes they don’t want to have much to do with you,” Keith says.
His relationship with his wife was so difficult that he suggested they separate. “I hurt her more in six months than I had in nine years,” Keith says. “I told her I didn’t feel like I was a good husband. She says I’m the best husband in the world, but I don’t feel that way. My pride’s been taken away.”
Kim explains: “When someone says something to me, a lot of times I’m not sure what I heard or that I understood it, and I ask them to say it again. And if I still don’t understand, they look at me like, ‘What the hell’s wrong with you?’ I know my daughter is frustrated with me, because I used to be the mother with all the balls in the air. Now, most of the balls are on the floor, and she doesn’t understand that.”
Shawn adds: “I get emotional and speak my mind, and it usually hurts people’s feelings. My family says I’ve changed, and I have. I come across as being an (expletive). I don’t mean to, but it’s the first thing that comes to mind. I don’t filter it.”
Bonnie says: “I used to be a sweet, soft-spoken doormat kind of person.. Now I’m temperamental and outspoken. Things come out of my mouth before I can stop them, and I’m tired of my husband telling me to control what I say.”
Kohn reassures them that their emotions are part of the process of grieving the loss of their old way of life. Reclaiming a sense of self and security in a world where everything seems upside down can be terrifying.
“Those feelings come up, and you may be angry or sad for a minute or 20 minutes, and then for three hours everything’s OK,” Kohn says. “It’s an emotional roller coaster. As you recover, the hills of the roller coaster are not as dramatic, but that doesn’t mean they’re not there. Brain injury can happen to anyone any time. It doesn’t matter how old you are, what sex you are, your race or financial status. In that moment, your life changes dramatically, and the road to recovery is exhausting cognitively, physically and emotionally.”
As one client told Kohn, “Brain injury isn’t for sissies.”
The good news, David says, is “the emotional roller coaster levels out. You have to give it some time. It takes a whole lot of adjustments that will eventually become normal to you. At first, it seems like you’re in hell, but in time, it becomes normal, and you become comfortable with that type of life. It gets better.”
Indeed, in time, some not only adjust to their new normal, but are actually grateful for the new direction their lives have taken.
Kim says one of the casualties of her new life is perfectionism. “I used to be surrounded by needy people, and I did all the giving,” she explains. “Now, I’m the one who’s needy, and I have to be OK with the way things are. It doesn’t matter if things are perfect as long as they happen. That’s change, and that’s good.”
Randy says before his injury, “I was either gonna end up in a grave or prison. Luckily, someone was watching over me and said, ‘That’s not where I want you to be.’”
The stress of his job caused Keith to drink heavily, and his injury was “a godsend that got me off that bad road and on a very good road,” he says. “The way I look at life now is totally opposite. I know who truly loves me and who my true family is.”
Michael adds: “I can’t really point to where it happens but you finally accept that what you were before was a different person. Someone said God has us starting over, and that previous life wasn’t all that great. Actually, mine was pretty bad. I was doing a lot of things I didn’t want to do. This group made me realize that I didn’t like all that. I’ve gone through this brain injury, and now I’m human.”
David says the anger and confusion he felt in the first few years after his injury is gone. “I’ve gotten comfortable with the way things are,” he says. “I might be slow, but before, I was in a miserable marriage, and my sons were in foster care. Now, I’ve got custody of my sons, and we’re a happy family.”
Written By John Christensen
Photography By Louie Favorite
Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 743 inpatients, 277 day program patients and more than 7,161 outpatients each year in more than 46,000 visits.