Peggy Sue Lebba, who suffered a traumatic brain injury that at one point rendered her incapable of communicating with others, shared her remarkable story of recovery at an event sponsored by the Brandeis Neuroscience Club on Monday evening. Professor Arthur Wingfield (NPSY) reviewed the basics of the human brain and Professor Laura Lorenz (HS) spoke about her own policy research.

On March 11, 2002, Peggy Sue Lebba was on her way to a lecture in Phoenix, Ariz., with several of her colleagues. While on a shuttle bus, she was knocked unconscious by a falling sign. It hit the left side of her head, the area of the brain associated with the application of language. Before the accident, Lebba had been a clinical researcher and a published author with a master’s degree in education. “I had a pretty cool life,” she remarked.

Initially, there was little indication that her injury was severe. Other than a headache, she felt fine. In fact, worried about being late, she was eager to get to the lecture she and her colleagues had planned to attend.

Lebba was diagnosed with a concussion. Several days after the accident, however, she gradually lost the ability to communicate. For months, she and her doctors were unsuccessful in pinpointing the problem. Repeated visits to neurologists were discouraging. She was told that she was stuck—that the improvement she had seen so far was the only improvement she would ever see.

“It’s probably the most devastating thing to hear ‘OK, this is it,” she reflected.

It was not until she found a brain injury support group that Lebba found what she so desperately needed. The group provided her with the emotional support necessary for coping with the realities of her new life.

Lebba confessed that she was initially skeptical about joining a support group. She laughed as she told the audience that she imagined the group as a roomful of people crying while weaving baskets.
She was, however, pleasantly surprised.

“It really changed my world,” she said, her eyes lighting up. The support group met for open and honest discussions. It became a social outlet for Lebba and the other members—a time when they were able to relax and laugh with like-minded company.

Since joining the group, she has experienced considerable progress.
“Something happened,” she says. “My speech improved dramatically. It was great.”

Hearing that she had a chance to improve, and then seeing that improvement, was huge for Lebba.
“I can actually go through the world without people knowing I have a brain injury.”

Professor Lorenz is a research associate and lecturer at Brandeis’ Heller School for Social Policy and Management and also serves as Program Director for the Supportive Living Inc. Brain Injury Rehabilitation Research and Wellness Center in Lexington, Mass.

She described her professional duties, which includes working “with a group of transdisciplinary colleagues to plan and implement a program of research to support the social, cognitive and physical rehabilitation of individuals living with long-term brain injury.”

In her work, Lorenz conducts “Photovoice” workshops, using an interactive program through which long-term brain injured individuals take pictures and create captions for them. The activity allows participants to share their experiences, and the use of photographs eliminates communicative barriers.
“Photovoice” serves not only to share experiences but it is also used to “collaborate for change.” First, participants get together adn learn about the camera and the project. They then take photos individually. Afterward, they discuss the photographs and reflect on their experiences with the rest of the group. Finally, they write or dictate the captions for the photographs. Lorenz explains that participants “were free to do what fit best for them within the parameters of the project.”

Through her support group, Peggy Sue Lebba was able to participate in a “Photovoice” workshop, facilitated by Professor Lorenz. Among the nine participants, six had a traumatic brain injury, two had brain tumors and one had suffered from stroke. All of the individuals were between the ages of 40 and 60.