Fourth Position: Connection
We ought to dance with rapture that we might be alive… and part of the living, incarnate cosmos.
— D. H. Lawrence
Judy is nearly forty now. Her peers with whom she used to talk late into the night on the Hill are surrounded by daily reminders of the passage of time—the professional promotions, the kids running around the house, the unexpected wrinkles in the mirror. Judy's life is absent of such things, even (because she has no facial expression) the wrinkles. Bauby, the Diving Bell author, described it thusly: "Mysterious paradox: time, motionless here, gallops out there. In my contracted world, the hours drag on but the months flash by."
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. So this begs a question: Does she want to hear how her peers have moved on? There was a time, in the early post-stroke struggles, when Judy didn't want to see people, didn't want to even open letters from friends. As she put it, "I did not want to hear about their boyfriends or their tans."
Indeed, fear of causing pain has led to hesitation by some of her old friends. They wonder if she wants to be reminded that the parade of life continued for them while hers took an entirely different path. "I think she's come to terms with it," says Anne. "There are times when she feels sad that it's not going to be part of her life. But she takes genuine satisfaction and enjoyment when she hears from other people. She likes children, and she likes hearing about what's going on." As Judy puts is, "The isolation of not knowing is worse." So on the pink walls of her room—not far from the "I ª Cornell" bumper sticker—are a photo gallery and a collection of drawings made by the children of her cousins and her nurses.
Her friends write letters, and Judy writes them back several times a week. She hasn't joined an online social network, doesn't use e-mail—in fact, she doesn't even own a computer. "I honestly find it much more personal to write a letter by hand, and I think I feel more special receiving handwritten letters," Judy says. She is old-school, not necessarily because that's the way it was done in her pre-stroke days, but rather because it is an opportunity to put her mark on something. So she dictates her correspondence, and then she decorates it.
The stationery is piled high in boxes on her bedroom floor. Maybe she'll pick a Degas painting of a ballet class or a print of Yosemite Falls. Lining a shelf are alphabetized binders filled with stickers. Maybe she'll attach a long-stemmed rose to the front of the envelope and add a rainbow-hued butterfly floating above it. On the back of the envelope, where it seals, she likes to place a pair of ballet slippers. "It's her creative outlet," her father explains.
Among the people with whom Judy corresponds on occasion is Cornell President Emeritus Frank Rhodes, who suffered multiple injuries after being struck by a car in Florida in 2002. Afterward, he and Judy were able to commiserate about things like the quality of nursing care and the drag of physiotherapy. "It was sort of cute," says Anne, "that they were on the same wavelength for a short period of time." Judy's most faithful correspondent is Linda Mallett, former senior associate director of admissions at Cornell. For nearly two decades they have been writing, often once or twice a week. Nowadays, that photo gallery on Judy's wall includes snapshots of Mallett's grandchildren.
It is an interesting study of relationships. While some friends with whom Judy was close in college have drifted into the periphery, others whom she got to know primarily after her stroke have become vital parts of her social support group. The temptation is to wonder if one's reaction to her condition is a sort of litmus test of character, but that may oversimplify a process influenced by the complexity of emotional bonds.
Even strangers run the gamut of responses. There are those who stare when they see Judy out and about, her thick black hair braided and attached to her wheelchair to keep her head in place. There are some who turn away. And there are others who march right up to her and express everything from sympathy to curiosity. "For the most part," says Judy, "long ago I stopped worrying about people's reactions.
Fifth Position: Perspective
A sense of humor is just common sense, dancing.
— William James
What is most difficult about being locked in? Is it the snail's pace of communication? The lack of privacy? Of sleep? The countless physical challenges? Judy's answer is one that wasn't even considered: "My total incontinence." The list of hardships is so long that it would be understandable if self-pity was her default mood. And make no mistake, there are times when she is profoundly depressed. "The truth is," she says, "being locked in is a horrible and terrifying life."
But here is something interesting: Judy can involuntarily move air over her vocal cords in two instances—when she cries and when she laughs. Remarkably, she does the latter often. Indeed, occasionally her nurse will be in another room and will hear Judy chortling at some private joke. "Sometimes it gets so loud," says Nickerson, "that you can't help laughing hysterically yourself."
So while she may be motionless, she is far from humorless— and occasionally mischievous. While communicating with her care-givers, she may throw in a Yiddish word, just to throw them off their game. Even in the hospital in the weeks following the stroke, when she felt as if she was on display for the medical personnel who paraded through her room, she would blink out a question to her nurses in the midst of it all: "Are any of the guys cute?"
If humor was a diversion, hope was a bulwark in the very beginning, when Judy's prospects for recovery were unclear.
Although her parents found solace in other locked-in patients who showed gradual improvement, they soon realized that any progress was going to be measured not in months but in years. "I'm still hopeful that stem cell research will help me and other people," Judy says. However, that may be decades from now. One neurologist explained it to the Mozerskys this way: "Let's say you're the Wright Brothers, and you need to go to the moon . . ." So they focus on the present, on providing Judy with the best possible life. "Ken and I sort of shake our heads sometimes and say, 'How does she do it?' But I guess you adapt," says Anne. "I think she has made as much of a life for herself as she can. She's had to become realistic about her situation and her hopes and dreams."
But what about those dreams? Bauby wrote eloquently about the one element of his post-stroke existence with no limitations: his imagination. "You can wander off in space and time, set out for Tierra del Fuego or for King Midas's court. . . . You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions."
William Butler Yeats once wondered how we can know the dancer from the dance. But how about the dreamer from the dreams? "Strangely," says Judy, "I am still active in my dreams." She conjures up ballets. She imagines herself flying, soaring effortlessly. Often she hears her voice, the voice of a nineteen-year-old, and it sends chills through her body. Then she wakes up and is once again surprised that she is unable to move.
But, says Judy, "my mind never stops." So on occasion, she finds her voice through poetry. She may craft a few stanzas while lying sleepless at night and then dictate them to her nurse in the morning. Judy has written lengthy poems about everything from dessert (Whenever I am feeling blue / I turn to my friend / tiramisu) to her flights of fancy (For that young girl's mind let her be / happy and normal and ever so free). A few years ago, she wrote a poem about one of her favorite pursuits—the occasional trip to Ottawa's National Art Center, where for a couple of hours she is at once wistful and blissful.
Last night I went to the ballet
I watched breathless as I dreamed away
The dancers' feet were a frenetic motion
Their costumes were as blue as the ocean
I gasped as I silently cried
I mourned the girl who had died
The dancers keep my spirits alive
It's the magic of movement on which I thrive
It is in those moments, perhaps, that Judy Mozersky is still a ballerina—unmoving, yes, but not unmoved. For more than half of her life, she has been locked in, but you can't confine the human spirit. And after all, as the saying goes, anyone who believes only sunshine brings happiness has never danced in the rain.
Brad Herzog '90 first wrote about Judy Mozersky for CAM in 1999.