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Stories and Testimonials

Chapter Eighty
Julia Speaks With Her Eyes
Joyce Sabari, PhD, OTR, BCN, FAOTA

Welcome to my voice of silence.
Life is a precious shell.
Hold it for as long as you can.
Remember, it is only a shell
Which contains the powerful mind.
It says you can do anything
Be anything.
So say what you will say.
Julia Tavalaro

Julia Tavalaro, accomplished poet and author of Look Up For Yes (Penguin, 1998, with Richard Tayson) is unable to speak or move any of her limbs. When multiple strokes left her paralyzed and uncommunicative, she was a 27-year-old housewife and young mother with no literary background.

It was 1967, a time when people with severe disabilities, particularly those who could not communicate, were considered to be "vegetables." After medical intervention failed to restore any of her physical function, Julia was sent to a back ward at a municipal hospital for long-term custodial care. For 6 years, she was bedridden, fed through a tube, and treated as if she were brain-dead. To her family and friends and to the hospital staff, that's what she was and would always be. Astonishingly, what no one knew was that Julia's brain was very much the opposite of dead. For those 6 years, Julia lived a nightmare-alert and aware of everything going on around her, yet unable to move or to communicate her awareness in any way to those who came and went from her room.

I am proud that, from 1973 to 1981, as Julia's occupational therapist at Goldwater Memorial Hospital , I was able to play an important role in giving her back her humanity. Working closely with Arlene Kraat, a speech pathologist, I helped enable Julia to communicate and resume active participation in life. The day that Arlene noticed the merest movement of Julia's eyeball in response to Arlene's words, and called me in to help evaluate whether Julia could possibly be alert and aware, was probably the most joyous day of the preceding 6 years of Julia's life. When we determined that Julia could indicate "yes" and "no" by looking up and looking down, the world reopened to her. It was a moment none of us will ever forget.

After that breakthrough, I did the typical things occupational therapists do. I set up a positioning system that allowed Julia to sit comfortably in a wheelchair. I worked with her to develop the ability to eat foods by mouth. I carefully assessed Julia's potential for any kind of voluntary movement that could be harnessed for use to control a communication system or a power wheelchair. When we determined that she could develop useable head motion, I devised exercises and activities that would help Julia gain motor control. I scoured the growing literature about available technology for people with severe disabilities. Together, Julia, Arlene, and I tried out numerous devices and strategies. Many of the things we tried did not prove feasible for practical use. But we did enable Julia to reliably communicate with a switch-based scan system and to actively read and manipulate the pages of a book. After many failed attempts, Julia finally was able to use her head movements to drive a power wheelchair.

It wasn't until years after I had left the facility that Julia was given the opportunity to use her abilities to develop her talents as a creative writer. Volunteer poets from New York University and an organization called Very Special Arts began to conduct ongoing writing workshops with Goldwater residents. Julia attended these sessions on her own, driving her wheelchair to the classes and using her communication system to tap out poetry-letter by letter.

Julia had a great deal to say and an unusual talent for expressing her profound insights. The workshop leaders, and then others in the writing community, noticed and nurtured Julia's gift. Her works have been published in international poetry journals. She has been featured in articles in The New York Times, The Los Angeles Times, and numerous syndicated newspapers.

In 1997, after Julia worked for 2 years with Richard Tayson, a gifted poet himself, Kodansha Books published her book, Look Up For Yes. In 1998, the book was printed in paperback by Penguin Publishers. This success enabled Julia to leave Goldwater Hospital . She now resides in a private nursing home and enjoys a close relationship with her family.

I am grateful to Julia for including several vivid recollections of our relationship at Goldwater Hospital in Look Up For Yes. In particular, I thank her for the following passage:

"During my last occupational therapy session with Joyce in March 1981, she touched my shoulder and said, 'You might want to view my leaving as a door opening for you, Julia. Though it may be scary to go through that door, I think you'll find a higher degree of independence if you take the chance and wheel across. My leaving might give you a clear indication of what you can do for yourself.'"

I am proud that my words and deeds were a source of empowerment for Julia.

Occupational therapy is about mundane activities, like eating, doing simple daily choices, and exerting control over the routine tasks of daily life. When I worked with Julia, I never imagined that someday she would be writing poetry or that she would publish a book. My hope was that, through our work, she could tell others what she wanted for breakfast. My occupational therapy treatments were typical and ordinary, but they I am proud that they gave Julia the ability ultimately to do spectacular things with her eyes and her brain.

Copyright © 2003 by SLACK Incorporated.

 


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