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Julia Understands Everything : 29 years ago, Julia Tavalaro had a stroke that left her dead to the outside world. But inside, life was burning more fiercely than people imagined. This is the story of that life and her remarkable journey.

December 17, 1995|Richard E. Meyer | Richard E. Meyer is a national correspondent for The Times. His last article for the magazine was on Loving County in West Texas

Arlene and Joyce taught her to use her head motion to operate devices that let her express herself and get around. They brought years of patience to the task, along with a rebellious disregard for naysayers. Julia, for her part, brought eagerness and unflagging persistence. Little by little, everyone realized that the sign over Julia's bed was right. Today she writes on a computer. She presses a switch with her cheek to run it. She rolls around in an electric wheelchair. She presses a switch with her chin to drive it. She goes wherever the wheelchair will take her, and she says, with little inhibition, whatever she wants to say, to anyone and everyone. To talk, she uses a card with the alphabet printed on it in rows. Her visitors move a pencil down the card, pointing to each row of letters, one by one. When they reach the row containing the first letter in the first word of whatever she wants to say, she raises her eyes. Then her visitors point to each letter in the row. When they reach the right letter, she raises her eyes again.

Her computer scans an alphabet grid and prints out the letters she chooses. In her writing, Julia is so vivid and so expressive that she has become an accomplished poet. She attends a creative writing workshop for patients, sponsored at the hospital by New York University. Her work has been read publicly at New York University, together with the work of such poets as Yevgeny Yevtushenko and Sharon Olds. Julia and an editor, Richard Tayson, are preparing her book of poems and memoirs to be published next year by Kodansha America.

She is still paralyzed. Her arms are contracted into fetal curls, and her legs are hyperextended in front of her. She is thin. She has recurrent bouts with pneumonia. The hospital refuses to let her doctors talk about her, but Dr. Jeffrey Saver, a neurologist at the UCLA School of Medicine, who analyzed data from her records, says that pneumonia can be a significant threat to someone with her inability to avoid aspiration.

Twice she has slipped out of mechanical lifters all the way to the floor, and once she broke two leg bones in a wheelchair wreck. "I was spinning in 2 wall," she says on her letter board. "It kept spinning until they shut it off."

She hates to be reminded of what it was like to be locked in. She demands that nurses dress her each day, for instance, in a color-coordinated outfit that she chooses from her locker. It bothers her when they do not comb her hair, when they do not keep her bedside neat, when they do not use her letter board, when they do not position her well and when they decide things for her or take her belongings without asking. Such things stir a fear in her of being locked in again. They are, she says on her letter board, "a torture."

She is quick with thanks, but she can be blunt. Nurses who mistreat her are "bitches" or "vultures" or worse, especially those who are so rough that they bruise her. She particularly dislikes one nurse whom she accuses of stuffing a pillowcase into her mouth to shut her up. She still howls, snarls, bites and bounces her hips to tell them to "kiss my ass." She protests to hospital administrators, state health officials and even the mayor. If she is ignored, she parks her wheelchair in an administrator's doorway and refuses to move.

Julia "can be difficult," says Lily Tu, director of nursing. But Rima El-Asmar, assistant director of patient relations, says her complaints "are usually reasonable."

She guards her independence. Wherever she goes, she carries a sign that says: "Please don't push my wheelchair. I could move myself. Thank you." But Julia is hardly grim. She laughs easily. Her humor can be wry, self-deprecating, teasing, slapstick, sarcastic and risque. She keeps a calendar of male strippers on her clothes locker. Not long ago, she and a favorite nurse got into a discussion about sex. A few days later, with the help of an accomplice, Julia presented the nurse with a box of multicolored condoms. One of them glowed in the dark.

Twice friends have smuggled in vodka and Collins mix to make her favorite drink. Once she even played the ponies. A member of the hospital staff brought her the Racing Form. He read it to her, and she picked her favorites. He placed her bets. All her horses lost, but she loved it.

Her relationship with George is in tatters. He had not taken her wedding ring; its disappearance is a mystery. Nor did he bring any rich women home from the country club. In fact, he moved back in with his own family, and they helped him raise Judy, who is now married and a mother herself. Her relationship with Julia is still painful. George and Judy see Julia only rarely. Julia says George has abandoned her. He denies it. At one point, they talked about divorcing, but then Julia suffered an attack of pneumonia, and neither of them pursued it.

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