The newsletter of the Memory Disorders Project at Rutgers University

Real story of Laurel 

It was a miserably gray and rainy morning. The note read, "7:45 AM. I'm off to walk a dog . . .P.S. I'm singing in the rain." With an ever-present sense of humor, Laurel had written her parents a message before leaving for her pet-sitting duties. "We always write where we're going," says her mom, Grace. "But her notes are precious."

Laurel, who once taught textile design at a university, ran long-distance, and was happily married, never imagined she'd be living with her parents at age 47. But in 1979, she suffered brain damage after being attacked during a run. After 19 days in a coma, she woke up a different person.

"When I came out of the coma, I thought I was 13 years old, and I was actually 26. I didn't remember I was married; I didn't remember a whole ream of things," Laurel says. Her brain damage had resulted in a condition called anterograde amnesia, which is an impairment in the brain's ability to form new memories. The damage also caused her to develop epilepsy.

Even six years after the injury, when Laurel divorced and moved to her parents' home, progress toward relearning what she once knew was slow. "When she first came she didn't know anything about spending money, she didn't know how to dress well-everything was knocked out. It's been a long walk forward, but now she dresses beautifully, manages her own Visa account, balances her own bank statement," says Grace.

Laurel also works at a local grocery. "When people ask me what I do, I say I'm a bag lady." Only after a confused pause does she add that it's groceries she's bagging. "I love to make people's jaw drop," Laurel laughs.

Still, the on-going process of retrieving her old memories or forming new ones is "frustrating," she says, and far more disabling than the epileptic seizures. "The memory is more difficult to deal with because I get things juxtaposed and misconstrued. Even when I just walk around the neighborhood, I often walk in the wrong direction."

A beeper goes off. Laurel looks down at her watch and reads the message. "That's beeping me for the dog walk," she says. Laurel's memory helper is a computerlike watch that she programs to remind her when to take her pills, do her pet-sitting chores, go to work, visit her weekly Internet chat room. The other way Laurel compensates for her memory is with Post-It notes. Yellow squares scrawled with messages dot her bathroom mirror, the fridge, and a spot by the phone.

Her parents have also been a constant support in helping Laurel manage the practicalities of daily life again. "It's endless patience and love, those are the basic elements," notes Grace. "Even today, when Bud and I are working at our desks, we can sometimes get 15 questions in an hour." But, she adds, "the repeated questions and interruptions of daily life-it's part of us now. You love your children and there isn't anything you wouldn't do for them. That's the way it is. She has to live with two old people and we have a child with us for life. But it's give and take."

Memory problems, however, haven't stopped Laurel from rekindling the interests she used to have as well as finding new hobbies. As she often stresses, "I can think. I just can't remember." In fact, she's gone a lot farther-literally-than most uninjured people.

Sit down with her and she'll proudly have you flip through her photo albums: Laurel standing next to the Great Wall of China; Laurel in the Provence region of France, painting a watercolor of the countryside; Laurel on safari in Kenya. Her photos help remind her that she's been to a particular place, even if she can't remember being photographed. In April 2000, Laurel went on a walking tour of Provence. Two years earlier, she cruised down China's Yangtze River. Vietnam and Morocco are next, she hopes.

"One of the first trips I ever remember taking was when we were very young. My parents put my three brothers and me in the back of a Volkswagen bus, and we went on a wonderful trip across the country to many of the national parks. I guess I got my wanderlust really embedded."

Before enrolling with a tour, Laurel makes sure the tour operator is aware of her special condition. To prepare for any trouble, her father has helped put together an emergency package: an extra copy of her passport, all her medical information, a list of her doctors and phone numbers, copies of her prescriptions, as well as extra medication. Once there, Laurel says, "I always tell the tour director that I have no sense of direction and that I can very easily get lost." One way she avoids that is by staying close to another travel companion, which, she adds, has "worked quite well."

Closer to home, Laurel keeps busy too. "She always says she don't know how anybody could be bored," remarks her father, Bud. And in Laurel's case, it's hard to imagine. Aside from cooking-she always has a tin of fresh oatmeal cookies, her specialty, ready for guests-she knits sweaters and sews quilts, some of which she's even shown in craft shows. With the help of tapes, she brushed up on the Spanish she used to know. And, together with her father, she took typing lessons at night school. "She spends 15 minutes to an hour every day practicing her typing. The chat room is the incentive for that," he says. For several months, Laurel has been getting together once a week on the Internet with other people who have memory disabilities. "We exchange ideas and frustrations. I find it helpful."

Her work is another venue for support, she says. "One thing I like about my job is that I have wonderful conversations with the customers who come through my line. In that little blip of time, if I'm feeling down about something I have an ear because they're standing there doing nothing. Or if they have something that they're frustrated about, I can give them a little bit of advice. And you know, when you give someone advice it makes you feel good." Just the previous day, she recounts, a woman who ran long distance came through her line. Laurel told her about her own frightening experience. "She listened to me sincerely. And I think she'll either carry some kind of protection or go with a companion after she learned what happened to me. And that just made me feel better."

Laurel takes an active role in treating not only the soul, but also the body. She's always looking for new medications or therapies that might help her. "She does an awful lot of reading of traumatic brain injury publications and epilepsy publications," says her father. "Often, Laurel will send letters to people doing research." A test subject for various different studies, "she's not afraid to try something new," he notes. The effort has sometimes been fruitful. She's managed to get a new drug that reduces her seizures to just a couple times a month.

Yet most rewarding for Laurel have been the pieces of missing memory that even now continue to return. "Often I find myself saying things I didn't know that I knew. It's almost like a third person relaying the information, which to me is fascinating. It made me realize that all of that information is not lost. It's still there." Moments like that, she says, are "really exciting and encouraging."  

Futher Reading:

  • The Brain Injury Association provides information and resources about brain injury. Visit the BIA web site: http://www.biausa.org.
  • The Head Injury Hotline provides information on living with brain injury, including consultations and referrals to healthcare, legal professionals, and patient support. They maintain a website at: http://www.headinjury.com