The autobiographical story of Judy Mozersky, a college student who cannot move or speak, has been recorded on audio tape by the National Library Service for the Blind and Physically Handicapped of the Library of Congress (NLS).
On Jan. 26, NLS released Locked In: A Young Woman's Battle with Stroke and honored Ms. Mozersky and her parents, Kenneth A. and Anne Mozersky at a special presentation in Ottawa, Canada.
Ms. Mozersky, an NLS patron and dual citizen of the United States and Canada, was greeted by Ruth J. Foss, head of the Collection Development Section, which selected the book, and Laura Giannarelli, narrator from the NLS Recording Studio, who recorded the book, and listened to her words on her NLS cassette playback machine.
"It was such an inspiring book to narrate and was much more upbeat than I originally had imagined," said Ms. Giannarelli. "My mother suffered a stroke when I was young, and I thought this was going to be very difficult to record. I thought I was going to cry. But I didn't, because Ms. Mozersky wrote in such an uplifting way. She has such determination, and her book focuses on coping and recovery. Her book is not a plea for sympathy. I felt I knew Ms. Mozersky after I had finished my narration."
In 1990, Ms. Mozersky, a 19-year-old Cornell junior, was "locked in" by an incapacitating brain-stem stroke that made her unable to move or speak but left the thinking part of her brain intact. In need of a way to communicate, she and her parents explored a variety of systems. Eventually they devised a spelling system in which Ms. Mozersky responds to portions of the alphabet using eye blinks.
Six years later, with the help of family and friends, Ms. Mozersky published her book in which she and others detail her progress from hospital care to the more stimulating environment of her Ottawa apartment.
Judy Mozersky was in her Cornell dorm washing her long hair before an exam when she had the debilitating stroke. In less than a year, she was using her hair in a ponytail to tie her head to the back of her wheelchair.
"I think one of the saddest human positions is with the head lowered," she wrote, reflecting on a time she spent in a hospital ward with other stroke victims. "So many inhabitants of the floor had their heads lowered. They were waiting to be fed or waiting to go to bed or something. They looked dejected and pitiful and pathetic. I couldn't hold up my head either, but people were always pushing it back for me. I would later work on holding up my head with a physiotherapist. Meanwhile the occupantional therapists invented a method to hold my head back. They tied my ponytail to the back of my wheelchair" wrote Ms. Mozersky.
Dictating the book and working with editors to prepare it for publication took more than a year. Though often exhausted from the effort, Ms. Mozersky was determined to explain that neither discomfort nor the uncertainty of the future could deter her from describing how she felt and what she thought.
In the intervening years, Ms. Mozersky has been rewarded by the fact that her book clearly meant a great deal to many of its readers, especially those who share difficult situations. She continues to hear from Americans and Canadians who want to let her know that such courage has inspired them to confront their own disabilities with similar courage. "That," says Ms. Mozersky, "is why I am beginning to think it is time for a sequel."
Fred Plum, chairman of the Department of Neurology and Neuroscience at Cornell University Medical College, says in the book's foreword: "Despite her devastating paralysis, Judy has lost neither her mental functioning nor her upbeat, young person's vibrant curiosity and focus on the future."
Ms. Mozersky closes her book saying, "My case is rare and unique, and no neurologist in the world can tell me what my future will be. It is very frustrating not to know what to expect from life. I want to know if I'll ever walk, if I'll ever talk. Unfortunately, I was meant not to know. Yet I remain undaunted."
One of the first things her family did was devise a way to communicate with Ms. Mozersky, who could move only her eyes and one shoulder muscle.
"The alphabet was divided into four sections or quadrants. My spelling partner would name the four quadrants — one, two, three, and four. I would look up for ‘yes' when my partner came to the quadrant that I wanted.
"The first quadrant contained the letters ‘A' through ‘F.' The second quadrant contained the letters ‘G' through ‘M.' The third quadrant contained the letters ‘N' through ‘S.' The fourth quadrant contained the letters ‘T' through ‘Z.' My partner wouldthen name each letter in the chosenquadrant. I would raise my eyes when my partner named the letter that I wanted. In this way, I spelled words and sentences."
Ms. Mozersky is the granddaughter of Sol M. Linowitz, recipient of the Presidential Medal of Honor. Mr. Linowitz was former U.S. ambassador to the Organization of American States, a co-negotiator on the Panama Canal Treaties and President Carter's special Middle East negotiator.
Said Mr. Linowitz, "Judy has told her story by blinking out the letters word by word, sentence by sentence, paragraph by paragraph, and chapter by chapter." Her entries in the autobiography are mingled with those of her extended family, doctors, nurses, physical therapists, tutors and many friends.
Lisa T: I had known Judy for almost 21 years. We had been best friends for most of those years… One thing I knew about Judy was that she never sat still. She was always traveling: to Europe, to the states, or to Israel with me. And she liked to experience different things, from ballet dancing to partying at school to getting involved with theater.
"Nobody would ever know this to look at me now, but I used to dance. I was never a serious dancer who devoted her whole life to ballet, but I loved dancing," she wrote, after going to the theater for a ballet but finding a rehearsal instead. "At the dance rehearsal that afternoon, each time the ballet instructor on stage would describe the dancers' movements my feet got very excited because they remembered the familiar steps," wrote Ms. Mozersky.
Ms. Mozersky never became clinically depressed, though the thought of institutionalization, and time spent on the strict rehabilitation ward, made her want to die, she wrote. Instead of succumbing, she fought to eschew every barrier to her freedom. One by one, the heart monitor, respirator, tracheostomy and stomach tubes came out. She learned to eat and drink without ingesting food or liquid into her lungs. Every one of these painstakingly won steps brought her closer to independence. Two years after her stroke, she moved to her own apartment.
"I was so glad to be free," wrote Ms. Mozersky.
Ms. Mozersky continues her Cornell studies toward a degree in psychology. She is particularly interested in reading biographies.
Locked In: A Young Woman's Battle with Stroke is available in print from two sources: National Stroke Association, telephone (800) STROKES, or through the Golden Dog Press, Box 393, 409 Oxford Street E., Kemptville, Ontario K0G 1J0; telephone (613) 258-3882. It is available to patrons of NLS as book number RC 47035. For more information about NLS: telephone (202) 707-5100; fax (202) 707-0712; TDD (202) 707-0744; e-mail firstname.lastname@example.org; or view the Web site at www.loc.gov/nls.