Stories That Helped Her Fill In the Blanks

Now, almost seven years after the motorcycle accident that left her 24-year-old daughter severely brain-damaged, Karen Brennan struggles to put into words how “the most profound experience” of her life changed her, fearful of sounding too New Age-y as she speaks of having become more spiritual, of having a new view of the world.

Brennan has chronicled the experience movingly--with an occasional dose of black humor--in her new book, “Being With Rachel: A Story of Memory and Survival” (W.W. Norton).

A professor of creative writing at the University of Utah, fiction writer and poet, Brennan deals daily in narratives and, as she sat bedside through her daughter’s four-month coma, she would try to break through to Rachel by telling her daughter over and over who she was, from her premature birth to her years as a school track star in Arizona. Inventing what she couldn’t remember, Brennan would persist above the beeps and hisses and gurgles of the machines that were keeping Rachel alive.

The smallest flicker of an eyelid would give Brennan hope. Then, one day, Rachel whispered, “I want my mom.” “When she woke up she was pretty oriented to who she was and where she was,” Brennan says. At first she was in a wheelchair, but after months of physical therapy she is now able to walk with the aid of a cane, albeit it slowly and off-balance.

As she recovered, “I’d give her little writing assignments, try to get her to think of narratives,” Brennan said. Rachel had lost her short-term memory, and, Brennan reasoned, “Maybe narrative generates memory instead of vice versa.” Over and over, she answered her daughter’s questions: “Where am I? What day is it? What year is it?”

Brennan knew that the function of the brain cells, or neurons, is to convey information accumulating along a complex circuitry of other neurons to produce thoughts and actions--and that when either transmitters or receptors are interfered with, memory is incapacitated. She began to see parallels between brain theory and the theories of narrative she taught her graduate students--that an author’s style and chosen structure might be a kind of map of the brain and, therefore, a map to the way a person remembers.

Brennan thought encouraging Rachel to write stories might jump-start her memory. The experiment met with limited success. “Tell me a story,” Brennan would urge. “Make something up.” At first, Rachel’s stories were far from being narratives. She would write, “There is Justine with a bee on her head.” When Brennan prompted, “What about Justine? What about the bee?” Rachel shrugged, “That’s it. The end.”

In time, “she did improve, up to a point,” Brennan says, but even when she began giving her stories endings, they were “childlike, really primitive,” and when Brennan would praise her effort--”not bad”--Rachel was apt to ask, “What was the story again?”

Brennan persisted and saw the payoff. “As Rachel’s narrative sense gets better, her memory gets better. People are always astounded [to see] a person with brain injury who is eloquent and very funny. She did a [bookstore] reading with me the other night, and she was terrific. Years ago she would have gotten confused halfway through. She’s much more sequential now.”

Rachel has retrograde amnesia, typical of those who have suffered severe brain injury and lengthy coma, which means that she may recall things from the remote past, but not things that happened more recently. Erich Hansen, a Tucson neuropsychologist who has worked with Rachel, believes Brennan’s approach was “immensely important” in redeveloping Rachel’s sense of self by “cueing her to remember things that she had remembered well but had trouble retrieving.”

Hansen says Brennan’s use of narrative to jog Rachel’s memory helped give Rachel some coherence in her drastically disrupted life. But, he adds, “I don’t think the narrative approach would necessarily facilitate new learning.”

Poor Prognosis

“Being With Rachel” begins in August 1995, with an early morning phone call from a neurosurgeon at Denver General Hospital to Brennan, who was summering in San Miguel de Allende, Mexico. Rachel had been in a motorcycle accident near Steamboat Springs, Colo., and was in a coma. The doctor said her CAT scan was “very, very ugly.”

She had not been wearing a helmet. The diagnosis: Diffuse axonal injury. Or, as Brennan puts it, “It was kind of like a giant whiplash.” Despite being prepared for the worst--including grim predictions from a social worker described by Brennan as “queen of the false-hope cops”--Brennan refused to have her hopes dashed.

Post-accident, Brennan’s team included her two ex-husbands--Rachel’s father and stepfather--as well as brothers Chris and Geoff, sister Margot and Margot’s husband, Steve Kerr, the professional basketball player now with the Portland Trailblazers. On a recent visit at the Pacific Palisades home of Kerr’s mother, Ann, Brennan talked about Rachel and the book.

At first--as Brennan was introduced to a grim world she describes as “a particularly grisly episode of ‘ER,’ ” a world of ventilators and monitors and tracheostomies--Rachel’s doctor prepared Brennan for the worst: “We don’t know if Rachel will wake up or not. We may have to make some family decisions.” The first encouraging sign came in the third week when Rachel opened one eye and, with her thumb, began caressing her mother’s hand.

Describing Rachel’s fight for recovery, Brennan neither portrays herself as a martyr nor soft-pedals the realities. Six months after the accident she brought Rachel home and, as a single woman trying to balance her career and be caretaker to her daughter, she felt overwhelmed and inadequate, as though she and Rachel were moths “trapped between screen and window,” batting their wings in futility.

There were times when she thought of ending it all--for both of them. “Rachel would be screaming about wanting to die. She was so unhappy. There seemed to be nothing anybody could do. I used to just look forward to the time she would go to sleep. I would get down on my knees in front of God and I’d pray.”

The doctor advised her to leave the house when Rachel was having those outbursts, but, Brennan says, “it just felt wrong, with someone screaming about wanting to die.” Instead she’d go to her bedroom, put a pillow over her head and “pretend this was happening to someone else.”

But in chronicling the experience, Brennan says, she did not want to write a horror story. “I wanted to write a tribute to Rachel. She’s shown amazing courage. She just has this great spirit.” And she thought writing about it “might deliver me to hopefulness.”

Her account does not whitewash what she calls the “grotesqueries” that accompany brain injury. Among these were Rachel’s lack of inhibition, which led her to say outrageous things at the most inappropriate times, and confabulation, the fabrication of wild stories to compensate for memory loss. She developed a disconcerting guffaw of a laugh--haw-haw-haw. And, alarmingly, she announced one day that she’d had sex with a man who drove her home in a pizza delivery truck. Due to her willfulness, tactlessness and inappropriate behavior, she was labeled a misfit at several vocational rehab facilities. The frustration, perhaps, felt by this former free spirit and ski bum.

Finding Serenity

A onetime lapsed Catholic, Brennan has become “sort of a non-lapsed Catholic. I now go to church and I believe in the power of prayer. There’s something about turning your life over to a force that’s greater than you that brings you some sort of serenity.”

In writing of Rachel’s struggle, Brennan spares no medical details. But, she says, the only thing that Rachel, once a toned runner, objected to seeing in print was that she had gained so much weight during the months of medication and inactivity. “She ultimately gave me grudging permission to say it.”

Rachel, contacted by telephone in Salt Lake City, said, “I love the book. It kind of makes me feel like a hotshot because I’m the main character. I like to read about myself because my memory is like totally freaking out.”

What bothers Rachel most are her physical limitations. “My right hand’s really out to lunch. I had to learn to write with my left hand.”

Her fluency in Spanish remains intact, burned into her memory, and she hopes to use it to get a job. “I’m so ready just to work like a normal human being. I really would like a job, that and a boyfriend; then I’d be perfect.”

Rachel’s loss of short-term memory may be permanent. But her sense of humor is unaffected. Brennan tells of her daughter recently showing her a new address on a letter from a friend. When Karen asked who the friend was, Rachel replied, “I have no idea. But I think just for the comic value of it I might initiate a correspondence.” She recognizes people she knows when she sees them but, Brennan says, “she just doesn’t remember where she knows them from.”

Today Rachel has an apartment in a group transitional living center for the disabled about five miles from Brennan’s home in Salt Lake City. Letting go has not been easy for either of them, but Brennan felt she “had to do the tough-love thing,” that Rachel would not progress if “mother was hanging around remembering everything for her.” She sees her almost daily. “When I’m not there being her mom,” Brennan says, she copes. “She figured out on her own how to take two buses to my house.”

Brennan still worries about Rachel’s judgment and has warned her repeatedly not to hitchhike. “She doesn’t have much judgment about consequences, which is a narrative thing--’I’m doing this, and this might happen.’ She was always such a tough girl. She thinks if she gets in trouble, ‘I’ll just run away from this guy, or fight him.’ ”

Progress yo-yos. The bad moods, marked by hours and hours of screaming and aggressive behavior, were found to be a reaction to Ritalin. When Rachel was switched to Risperdol, a mild antipsychotic, “it was like a miracle,” Brennan says. “Rachel’s never going to be the able-bodied person she was before. But I have high hopes for her. I hope that I can see her employed, having a routine every day, having a circle of friends she sees every day, maybe a boyfriend, having a life. Not a spectacular life, but an ordinary life that she can feel proud of.”

Recently, Brennan asked Rachel, hypothetically: If there were a surgery that would make you whole again, would you want it?

To which Rachel replied, “I don’t think I would.” Placing her hand over her heart, she said, “I’ve learned too much that I wouldn’t want to let go of, all the stuff this has given me.”