Brain Injuries Change Lives

First appeared in NY Times
At a crowded vigil on Sunday night in Tucson, Representative Gabrielle Giffords held her husband’s hand as she stepped up to the lectern to recite the Pledge of Allegiance.


It had been one year since a shooting at a Tucson supermarket killed six people, injured 12 others and left her with a severe brain injury. Ms. Giffords’s appearance was greeted by an enthusiastic crowd that applauded her remarkable progress toward recovery.


The man next to her, fighting tears, offered his own remarks. “For the past year, we’ve had new realities to live with,” said her husband, the astronaut Mark E. Kelly. “The reality and pain of letting go of the past.”
Captain Kelly was speaking of the survivors of the shooting. But his words echoed the sentiments of many brain injury survivors and their spouses as they grapple with interpersonal challenges that take much longer than a year to overcome.


Until recently, there had been little evidence-based research on how to rebuild marriages after such a tragedy. Indeed, doctors frequently warn uninjured spouses that the marriage may well be over, that the personality changes that can result from brain injury may do irreparable harm to the relationship.


Captain Kelly and Ms. Giffords largely have kept private their own experiences in this regard, and they declined to be interviewed for this article. Still, therapists are beginning to understand the obstacles that couples like them face, and what they are learning may lead to new counseling techniques to help restore the social links that give lives meaning.


Contrary to conventional wisdom, many relationships do survive after a spouse suffers a brain injury. Some studies find divorce rates well below the national average among these couples. A 2007 investigation found that the divorce rate was around 17 percent in couples followed for as long as 90 months after a spouse sustained a brain injury.


That is not to say these couples are always happy.


“Two or three years later, they want a whole lot more than simply to be alive,” said an author of the 2007 study, Jeffrey S. Kreutzer, a psychologist at Virginia Commonwealth University in Richmond. “While people may technically be married, the quality of their relationship has been seriously diminished.”


Dr. Kreutzer and other psychologists at V.C.U. are among the few therapists in the country trying to develop marriage counseling techniques tailored to couples dealing with brain injuries. Traditional marriage counselors often hope to restore people and their relationships to their original luster. For Dr. Kreutzer and his team, recovery often means teaching uninjured spouses to forge a relationship with a profoundly changed person — and helping injured spouses to accept that they are changed people.


The research is still in early stages, and in many ways the therapeutic toolbox is not much different from that of regular marriage counseling: Couples coping with a brain injury are taught to communicate better, to focus on positive developments and things they like about each other, and to set aside time to inject a little romance and fun into a life that can be consumed by doctors’ appointments and paperwork.


But other traditional techniques can backfire with these couples, the researchers have learned. For example, said Emilie Godwin, another V.C.U. psychologist, encouraging partners to remember what sparked their love in the first place can mean “highlighting the things that have probably been lost.”


“You’re asking people to just look forward, to not look back at all,” she said. “To try to recreate a relationship.”


The Stranger in the Living Room


About a month after surgery to remove a brain tumor in 2006, Terry Curtis turned to his wife, Vicky, and offered her a divorce.


“I told her she was free to leave,” he said. “I’m not the person you married.”


Mr. Curtis knew he had become cold, impulsive and incapable of focusing his attention. But it would be 18 months before doctors explained to the couple that complications from surgery had caused a brain injury.
Mrs. Curtis, 60, was once drawn to her husband’s “sparkle,” she said. After the injury, he “flat-lined” emotionally, and he suffers from depression, anxiety and a lack of motivation.


Her husband sometimes makes erratic decisions, she added, like the time he decided to take a do-it-yourself approach to the plumbing at their home in Coralville, Iowa. “Not a good picture when I got home,” Mrs. Curtis said. “And you can yell at him like a little kid, but he didn’t know any better.”


Once a software programming analyst, Mr. Curtis, 57, has “a lot fewer interests” than he did before the injury, and he estimates he has lost 90 percent of his friends.


“It’s a new you,” he said, “and they just can’t cope with that.”


Brain injury can be isolating, psychologists say, as the mental symptoms may last well beyond the obvious injuries. Strangers and friends often do not understand the root of a survivor’s socially inappropriate behavior.


Even relatives well versed in the changes wrought by brain injury constantly struggle not to take outbursts or remarks personally, therapists said.


“The word that describes it is just ‘lonely,’ ” said Mrs. Curtis of her role as caregiver. “My life is sitting in the living room quiet while my husband just sleeps.”


Guilt is the tie binding many people to a dependent stranger inhabiting their spouse’s body after a brain injury, Dr. Kreutzer said. But guilt is not unique to the caregiver who might fantasize about getting away. Studies show that few of the injured can work and that about half suffer from major depression; many feel inadequate because of their inability to provide financial and emotional support.


But Mrs. Curtis said she was staying with her husband not out of guilt or an obligation to take care of him — though she couldn’t say she had never contemplated leaving.


“If I was that unhappy, I would make the arrangements for him to be taken care of and get out,” she said.
Counseling has helped Mrs. Curtis, who works in administration at the University of Iowa, to manage her expectations, both for Mr. Curtis’s recovery and her own responses.


“We’ll have a whole day where he’s just fine, and it’s just like the old Terry,” she said last month. “And then he’ll say something out of whack, and I’ll say, ‘Oh, yeah, it’s 2011.’ ”


Psychologists say this type of halting progress adds to what they call “ambiguous loss.” Every day, reminders of the damage appear and disappear, and often couples struggle with grief that is never fully resolved and must constantly be reassessed.


Though the Curtises have not quite let go of the “old Terry,” their relationship is not identical to what they had before his injury. It has become a “combination,” Mrs. Curtis said.


Said Dr. Godwin: “People hold on to hope that just as when they survived the crash and they had this miraculous recovery, that they will overcome these challenges that other people may not in this miraculous way. That’s not going to happen.”


But some couples do manage to put their lives, and relationships, back together in the years after a traumatic brain injury. In 2002, while Hugh Rawlins was in an induced coma, half his skull removed to allow his brain to swell, doctors told his wife, Rosemary, that he might be angry, even abusive to their 14-year-old twin daughters — when and if he learned to talk again.


Mr. Rawlins had been struck by a car while riding his bike near his home in Glen Allen, Va. As he entered rehab, doctors warned that the couple might soon face bankruptcy and divorce.


But after years of halting rehabilitation and a devastating, failed attempt to return to his old job, Mr. Rawlins is a financial executive at a midsize engineering company. An avid surfer before the accident, he rides the waves off North Carolina’s Outer Banks, where the couple spends almost every weekend.


He never became the aggressive misanthrope doctors warned about. And he’s back on the bike.


But each positive step in Mr. Rawlins’s recovery has posed difficult challenges for his wife. Fearful, she hid the car keys as he learned to drive again. His determination to ride his bike sent her into therapy.


“All of a sudden I was in this position of always telling what you can do, what you can’t do — it’s horrible,” said Mrs. Rawlins, who documented her family’s ordeal in “Learning by Accident,” a self-published memoir.
Mr. Rawlins may have suffered a traumatic brain injury, but it was Mrs. Rawlins who, like many others caregivers, ultimately received a diagnosis of post-traumatic stress disorder.


Despite progress toward stable relationships, many couples stay trapped in a pattern in which the uninjured spouse does everything for the survivor, even when it’s no longer necessary, researchers have found. “No one likes to have their freedom stolen from them,” said Dr. Godwin.


Before they entered counseling, fights over Mr. Rawlins’s limits sometimes ended in a silent stalemate.


“There’s always a bit of the rebellion in me, and she’d pull me back just as a mother would or a father would to their teenager,” said Mr. Rawlins, now 55. “Sometimes she was right, and sometimes I could do it.”


The accident rocked the couple out of their “midlife doldrums,” Mrs. Rawlins said. As Dr. Kreutzer tells his patients, some post-injury changes can be positive. Mrs. Rawlins was thrilled to find her once wry and stoic husband is much less emotionally inhibited.


“The touchy-feely stuff, that shows more in me now,” he acknowledged.


More and more, Mrs. Rawlins believes that her husband is back to his “old self.”
She’s just no longer sure she remembers who that was.