‘I Am Not a Nitwit’ : 68 Years With Cerebral Palsy: An Unusual Book Dispels Myths

From the time she was a tot, Bebe Thompson has wanted desperately to tell the world that no, she is not stupid, no, she is not helpless and, yes, she can feel and need and want.

She is 68 now, and her condition is worsening. She can neither talk nor walk, let alone write, because of cerebral palsy.

But, with help from a retired schoolteacher, a worn letter board and an indefatigable spirit, she is finally telling her life story.

She has completed an autobiography, aptly titled “My Mother’s Pride.” It is dedicated to scores of unsung handicapped people and their families.

“The main reason I want to tell my story,” Bebe says in her book, “is to encourage others who now have this kind of birth defect that they can still lead good lives.”

“I am writing my story down,” she adds, “so my sisters will know that I really wanted to help myself, to prove I do have a good mind--if only I could control the spasms in my arm muscles. I want them to know . . . I am not a nitwit like some people who came to visit thought.”

Message Is Clear

In person, her message comes through just as clearly.

“I knew people doubted me, but I thought it was my own life,” she said in a recent interview. Confined to a wheelchair, she painstakingly spelled out each word on the board on her lap.

Her head bent low and her concentration intense, the small, white-haired woman born Eva Elizabeth Thompson, but always known as Bebe, tapped out the sentences with her left index finger and bent knuckles, choosing from among 116 words that are painted on the green, wooden board, the letters of the alphabet and a row of numbers.

As she worked, her weaker right hand gripped a yellow cord attached to the board and her left foot jerked uncontrollably--a telltale sign of the incurable congenital condition that afflicts perhaps 700,000 Americans.

The process of communicating just the two sentences took several minutes and several tries, even with her two sisters filling in the inevitable semantic gaps.

“I realize I can’t be like everyone else,” she spelled out, again letter by letter, word by word. Still, “I am not giving up.”

Known for Determination

Those who know Bebe best--her sisters, her beloved mentor, her nurses and other patients at the nursing home where she lives--aren’t surprised by such determination.

“You never, ever tell Bebe she can’t do something, because she doesn’t know she can’t do it,” said her sister, Lois Strobel, 66.

Another sister, Faye Campbell, 76, agreed.

At least once a year, for instance, Bebe asks--make that demands--to dress herself.

“She says, ‘I want to dress myself. I can do it. I can do it,’ ” said Jean Dzemyan, director of nursing at Haven Convalescent Home, a small, cheerful facility near the Pennsylvania-Ohio border.

It is precisely that kind of doggedness, that yearning to think and do for herself, that prompted Bebe to ask nearly two years ago that her thoughts be put on paper for posterity.

Her condition had begun to deteriorate and she was capable of doing less and less for herself.

“She was acutely aware of this,” Dzemyan said. “She wanted something to say, ‘Here, I did exist. The world’s not going to forget me.’ ”

Teacher Helped Out

Despite her physical decline, her mental abilities were blossoming every day, thanks to Eleanor Susko, 70, who had offered to teach Bebe to spell after she retiring from business education in 1979.

Until then, Bebe’s education had been primarily snippets gleaned from her younger sister, who shared her homework with her when they were young. Her mother and grandmother also used flash cards to teach her arithmetic and continually recited the alphabet to her, stopping at the letters of the words she was trying to express.

Bebe communicated primarily through sounds and gestures that only her family could understand. She acquired her first letter board when she was in her mid-50s, at the suggestion of an Easter Seal Society camp counselor.

Bebe was cared for at home in New Castle until she moved into the Haven Convalescent Center in 1972. Many other cerebral palsy patients of Bebe’s time ended up in mental institutions, according to George McNally of the United Cerebral Palsy Assns. Inc.

Doctors often told parents then, mistakenly: “Don’t try to train this person. He’s a vegetable. He’s not going to amount to anything,” McNally said. “It still happens, though with much less frequency.”

Not All Are Retarded

Although mental retardation occurs in some cerebral palsy cases along with the spasms and impaired sight, hearing or speech--the condition is caused by damage to the brain before, during or shortly after birth--some patients have been able to pursue medical, legal and other professions, according to McNally. They can expect normal life spans, although some may die young from respiratory problems.

“The biggest thing is the communication,” McNally says. “People who are ill-informed or not informed at all figure that if they can’t communicate, they must be retarded.”

Determined to shatter that misconception of herself, Bebe began working earnestly on her autobiography in January, 1986, after years of spelling lessons with Susko, who used crossword puzzles and cassette tapes as tools.

Every Wednesday or Thursday afternoon at the nursing home, the retired teacher carefully jotted down Bebe’s recollections, conveyed via the letter board. She would take the notes home, type them up and return with them the next week for Bebe’s approval.

The weeks of work stretched into months.

Organization Problems

“At first, she jumped around at different parts of her life. She would be 40 one week, maybe 29 the next week,” Susko recalled.

It was a tedious, sometimes exasperating process for both of them.

Perhaps Bebe’s roughest task was relating the time, when she was about 3, that visitors to the family’s home called her a nitwit. Alone in the room with her, they presumed she was mentally retarded and could not understand.

They were wrong.

“I knew what they meant,” she says in her autobiography. “It . . . hurt to hear them talk about me.”

Because she had never told her sisters about the incident, Bebe was somewhat uncomfortable putting it in print. Equally touchy, she knew, were her references to what she perceived as her well-meaning but overprotective family.

Her parents, now dead, often balked at Bebe’s attempts to feed and dress herself, according to “My Mother’s Pride.” Her mother was especially proud of her disabled daughter--hence the book’s title--but afraid she might hurt herself.

Her sisters and older brother, Harley, also dead now, were supportive but similarly protective.

“She knew some of the things she was going to say was going to hurt her loved ones, and she really didn’t want to do that,” said Doris Parker, 61, another resident at the home who helped with the book, “but she felt this was something that needed to be heard.”

Eight-Page Book

In August, 1986, after eight months of work, the final word was written, the final editing done. The result was eight typewritten pages--no literary masterpiece, but definitely poignant prose.

“The day it was all finished, I read it to her,” Susko said. “I was in tears, and she was too. I said, ‘What do you think about it Bebe?’ She said, ‘Uuuh-oooh, did I do all that?’ ”

Because of a flu outbreak, there was no celebration at the nursing home to mark Bebe’s achievement.

Susko made copies of “My Mother’s Pride” for herself, Bebe, family members and the nursing home, and there was talk about sending it to a religious publication. The two women went back to working crossword puzzles. In May, Susko, a widow, moved to Fort Walton Beach, Fla., to be closer to her children and grandchildren.

Bebe gave a going-away party for her dear friend and teacher, and a tearful Susko promised to write about her new life.

Bebe promised to write back.