Second Position: Communication
The dance is a poem of which each movement is a word.
— Mata Hari
It all happened in the blink of an eye. And now those eyes are everything. For most of us, they are our means of observing our surroundings. They are how we receive the world. For Judy, the eyes are how she becomes part of it. They are the only means for her to convey all the thoughts and emotions bouncing around her brain. And she does it letter by letter. After some trial and error in the weeks following her stroke, Judy and her parents determined the most practical method: Divide the alphabet into four quadrants. Raise your eyes when the number for the proper quadrant is reached, then raise them again at the proper letter within that quadrant. So the word HOPE, for instance, becomes "1-2-G-H… 1-2-3-N-O… 1-2-3-N-O-P… 1-A-B-C-D-E."
By now, nearly two decades later, Judy's family, friends, and caregivers have become remarkably adept at the process—a method simple enough that even the nurses' young children often spell with her, rather enjoying the mystery and sport of it. Her parents notice that Judy doesn't settle for linguistic shortcuts. She'll be talking to her mother, for instance, and they'll be the only two people in the room, but Judy will insert "Mom" into a sentence—as in "Let's have lunch, Mom. I'm hungry." Because that's what people do.
Judy's eyes are the only means for her to convey her thoughts and emotions. And she does it letter by letter.Translation of Judy's eye movements is particular to the person doing the translating. On one hand, there are the meticulous communicators who allow her to complete each word, even though it's clear that when she begins with T-O-T she's saying TOTALLY, a favorite of hers. At the other end of the spectrum are the overzealous intuitive types who translate B-R-A-I and then frantically start wondering what's wrong with her brain, when in reality she was only asking them to fix her braid.
Judy is tolerant of them all, but imagine the patience required—and the potential for frustration. How desperately must she wish that the deliberateness of the process wouldn't diminish the power of an angry retort or an impulsive reaction or even a punchline. In The Diving Bell and the Butterfly, author Jean-Dominique Bauby, who died sixteen months after being locked in by a stroke, put it this way: "The keenest rapier grows dull and falls flat when it takes several minutes to thrust it home." Consider all of the means of expression that most of us take for granted—the shoulder shrug, the furrowed brow, the sideways glance, the wry smile—and then picture trying to convey those emotions one letter at a time. Yet this is her only means of communicating her core being. Her eyes are the windows to the soul.
It is a soul that aches to shine. Before publication of Bauby's autobiographical account (which became a critically acclaimed motion picture), Judy managed to blink out a short book about her early experiences, Locked In: A Young Woman's Battle with Stroke, published in 1996 and available from booksellers online. Equally impressive, the woman who cannot speak has become multilingual. Because she lives a stone's throw from the Quebec border, she communicates in French or English with her care-givers, depending on their native tongue. She knows Spanish from her days at Cornell, started learning Hebrew a few years ago, and is currently being tutored in Latin. "I think it is empowering to express myself in many languages," says Judy, an observation echoed by her mother. "There aren't a whole lot of challenges that she can succeed at in her life," says Anne, "and this is one in which she can."
Third Position: Independence
To dance is to be out of yourself. Larger, more beautiful, more powerful.
— Agnes de Mille
The days following the stroke turned into months. She was transferred to a rehabilitation center, where her roommates included a blind woman who couldn't see Judy's eye movements and an elderly lady with dementia who claimed Judy spoke when no one was around. For all the wonderful nurses who took the time to understand her preferences, there were others who all but ignored the fluttering eyes that amounted to her only call bell. For every doctor who helped her to eventually breathe on her own, there was the clueless podiatrist who ripped her toenail off without anesthetic, an event so painful that Judy involuntarily sat up in bed.
Judy surrounded herself with stuffed animals. She placed posters on the wall and a mobile of dancers above her bed. But it wasn't home, and her parents were determined to find her one. "Our wish right at the outset was to give Judy as much independence as possible and as much control over her life as possible," says Anne, a home childcare consultant. Canada's universal health care had removed most financial obstacles from Judy's treatment. Indeed, says Ken, who works in a small consulting business, "we would have been bankrupted otherwise." But the normal course of action was for Judy to be placed in a chronic-care hospital for the rest of her life. So the Mozerskys petitioned the government, called in support, negotiated, cajoled. Finally, through a program in Ottawa called Disabled Persons Community Resources, they found her a home.
For more than eighteen years now, she has lived in an apartment building that has an attendant program. Her nurses work in two eight-hour shifts during the day, and an attendant checks on Judy in her room every hour at night. Often, she is unable to rest well, since the stroke damaged part of her brain's sleep center. If she's uncomfortable, the attendants will reposition her. If she has to be moved, they are available to transfer her onto the track lift above her bed and into her wheelchair.
In some respects, time stopped for Judy the moment she felt something burst in her brain. 'I still feel like a nineteen-year-old,' she says.It is a two-bedroom apartment, and Judy has a roommate. The deal is this: free rent in exchange for a promise (with some exceptions) of being home from 11 p.m. to 7 a.m. In typical fashion, Judy wonders, "What kind of person has no social life and can be in by eleven at night?" She has shared her apartment with eight different women, but her current roommate, Lisa Young, has lived with her for nearly six years. Young is a sort of surrogate daughter to the Mozerskys and, if need be, their eyes and ears to assess the performance of Judy's caregivers—a rotating cadre of seven nurses. "It's an intimate relationship," says Anne, "so having people that she likes to spend time with is critical."
Many of Judy's caregivers have been part of her life for years. They are more than nurses, more than people tasked with keeping Judy in good physical condition with daily range-of-motion exercises. They are her translators and her chaperones on trips (often in a modified van) to the nearby mall or the hairdresser or the restaurant. They are her conduits to the world and the voices that transport her to other ones. Judy's eyes are unable to scan writing, so her nurses read to her. It is all about human contact. A book on tape can't laugh with her or re-read a passage or stop to scratch her nose.
Paradoxically, these caregivers are the very people who provide Judy with a sense of independence, most often in the form of a surprising hobby: cooking. Unlike many victims of locked-in syndrome, Judy has developed the ability to swallow certain foods if enough of it is properly placed on the back of her tongue. "It certainly adds a dimension of quality to her life," says Anne. But it is the preparation that most appeals to her. Judy's shelves are lined with dozens of cookbooks, their pages marked with suitable challenges. She and a nurse will choose a recipe, and Judy will oversee creation of an artichoke casserole or a seafood risotto. Says Chantal Nickerson, a cheery blonde Ottawan who has been one of Judy's caregivers for eighteen years: "She's turned us all into Martha Stewart."
But maybe there's also a bit of Martha Graham—Judy Mozersky as kitchen choreographer. As Graham once said, "Dance is just discovery, discovery, discovery."