For those who didn't read the whole article, the Judy Mozerski suffered a stroke in the brain stem that caused locked-in syndrome--full body paralysis. She can't move, she can't speak, she can't move her face--but she's fully conscious and aware and can feel pain. Virtually the only things left unparalyzed were her eyelids and the muscles that control vertical eye movement. That makes her one of the lucky ones. Some patients with the syndrome cannot open or move their eyes at all.LOCKED IN
BY BRAD HERZOG
Now listen to me closely, young gentlemen.
That brain is thinking. Maybe it's thinking
about music. Maybe it has a great symphony
all thought out or a mathematical formula
that would change the world or a book that
would make people kinder or the germ of
an idea that would save a hundred million
people from cancer. This is a very
interesting problem, young gentlemen,
because if this brain does hold such
secrets, how in the world are we ever
going to find out?
-- Dalton Trumbo, Johnny Got His Gun
This is a story about the human spirit, about how all the physical layers that surround us are only garments that cover the core. Remove them, and the core only shines brighter. It's a lesson in love; not the easy kind that blooms from opportunity, but the hard kind that endures through pain. It's about complete dependence and the pursuit of its opposite, about what we'd give to recover what we took for granted. But mostly it's the tale of a young woman who has gone there--as in there-but-for-the-grace-of-God.She lives there, in a place nobody can imagine, and yet her biggest battle has been to prove that, in fact, nothing essential about her has changed.
The story can begin with "Once upon a time," not because everyone lives happily ever after but because at one time its heroine led a near-fairy tale existence. Judy Mozersky '92 attended Cornell, like her father (Ken Mozersky, PhD '70), her mother (Anne Linowitz Mozersky '65), her grandparents, and assorted aunts and uncles before her. A native of Ottawa, she spoke French, traveled extensively, joined a sorority, dated a football player. She was a dancer--ballet, modern, jazz--who spent countless hours perfecting her art. Everything about her suggested motion and communication, including the words her family and friends use to describe Judy in her first nineteen years: vivacious, buoyant, energetic, dramatic.
Then, on June 14, 1990, everything stopped. And Judy Mozersky started all over.
She had decided to stay in Ithaca that summer before her junior year, taking a statistics course required for her psychology major. She had just stepped out of the shower in her apartment when the phone rang. "I'll get it," Judy shouted to her roommate, Julie Grass '92. But as she was about to pick up the phone, she felt something burst in her head. This wasn't one of the migraines she often endured. This was far more frightening. Feeling dizzy and disoriented, she screamed to her roommate that she was going to faint. Then the left side of her body went numb. Julie threw some clothes on Judy and drove her to Gannett Health Center. En route, Judy tried to tell her friend that they were going to miss their afternoon statistics exam, but by then her speech was slurred as well.
At Gannett, between bouts of nausea, Judy asked the stern-looking female doctor if perhaps she'd suffered a mild stroke. The symptoms were there, weren't they? But the statistics were not. "I doubt it," said the doctor."You're much too young." But when the symptoms showed no sign of letting up, she was sent to Tompkins Community Hospital.
She told the neurologist there that her left side wasn't working, that she was seeing double, that her lips were numb. He told her it was probably just a bad migraine and had her transferred to a pediatric ward for observation. At this point, Judy still believed she'd be fine. But she took a turn for the worse that night, a time that remains hazy except for the memory of waking to a familiar voice: "Hi, sweetie. Mommy and Daddy are here." Judy couldn't respond. She couldn't move.
Imagine that the two most important people in your life fly off at a moment's notice to be by your side, but when they arrive you have no way to communicate your confusion, your terror, your needs. Imagine drifting in and out of consciousness, and just when you drift in you hear a voice say, "It's two o'clock in the morning. Now is when we lose most people." Imagine wanting to scream, "I can hear you! How dare you!" But you can't even furrow your brow or narrow your eyes, let alone open your mouth. Imagine your body, so fluid and graceful and expressive only hours earlier, suddenly preventing every kind of expression you've ever known.
It was a few days later--after Judy had lapsed into a coma and out of it, after her parents had spent sleepless nights in a nearby hospital room wondering how much of their little girl they were going to get back--that an MRI revealed she had, indeed, suffered a stroke affecting her brain stem, the bridge between the brain and the spinal cord. Judy didn't have high blood pressure or arteriosclerosis, wasn't overweight or over sixty-five, and hadn't used cigarettes or cocaine. But she did carry two other stroke susceptibility risks--she had a history of "migraine with aura" (severe headaches accompanied by visual symptoms like spots and bright lights) and, like many of her friends, she was on the Pill.
She had never been informed of the risks of combining the two, but it was a volatile mix that exploded on that spring day. "Judy's brainstem stroke almost completely severed the downward-traveling nerve-fiber pathways that normally connect the motor-executive areas in the higher brain (called the cerebrum) with the nerve-cell centers in the brain stem and spinal cord, which control the body's muscular movements," says Dr. Fred Plum, MD '47, former chairman of the Department of Neurology and Neuroscience at Cornell's Weill Medical College, who coined the term for Judy's condition in the 1960s. "When this happened, Judy's conscious wishes and commands lost their capacity to direct any movements of her body other than those that partially regulate the muscles of her eyes, her throat, and her respiration."
She has quadriplegia, mutism, paralysis of facial muscles, and loss of horizontal eye movement. That's the physical truth of Judy's situation. But it's the final line of Plum's diagnosis, the one that defines what Judy still has left, that brings the situation into focus: "Judy's thinking, feeling, emoting, and intending brain remains unscathed." Plum pulled no punches in choosing the name that best describes such a flesh-and-bone prison: Locked-In Syndrome.
The first week Judy spent in the hospital was dominated by vivid dreams sparked by high fever. She dreamed, for instance, that she was transferred to an Intensive Care Unit consisting of breezy pink tents along a sandy seashore. Occasionally, the dreams were more hallucinatory in nature, like the time she dreamed that she and Julie were trying on earrings. The dream felt so real that Judy still thought she was wearing the earrings months later.
In reality, her hospital accouterments sacrificed style for survival. Judy had a naso-gastric tube leading to her stomach for nourishment. She had a urinary catheter. Since she couldn't swallow, her mouth was propped open so saliva could be suctioned. "I was truly grotesque," is how Judy remembers it. Most upsetting to her parents was the total lack of facial expression. It looked as if the stroke had erased all emotion from their daughter, as if there could be nothing inside the shell. But Ken and Anne Mozersky knew better. "We talked to her all the time," Anne says, "telling her where she was, what was going on, where we were going, and so on, as if she were able to understand everything."
Almost immediately, mother and daughter devised a crude means of communication involving the only response Judy could make. She would look up for yes, down for no. "It worked very well," Judy recalls, "providing my partner asked the appropriate question." But when they flew home to Ottawa in an air ambulance on June 21, when Judy was so uncomfortable that even her skin hurt and it felt like there were daggers in her eyes, how could she convey her discomfort when her mother asked her if she was all right? "Yes," Judy lied.
She began her stay at Ottawa General Hospital in the Neuro-Observation Unit, taking solace only in the fact that, in her words, "I couldn't get any sicker." But soon she found herself again in Intensive Care. She had developed breathing problems, requiring a respirator and a painful tracheostomy tube. Several days later, she developed pneumonia. Surrounded by the constant whirring,buzzing,and ringing of the ICU, she lost her once-impressive sleeping ability. Now, when sleep seemed the only escape, she found herself awake half the night, terrified of what might happen and what she could possibly do if it did. She cried constantly, every day.
Worse still, Judy felt as if she were becoming less a person than a case study. Every morning, before the neurologists, respiratory therapists, physiotherapists, and speech pathologists dropped in, she would be visited by a group of doctors and medical students making their rounds. "I hated the noisy group that gawked at how rare a specimen I was," she recalls. "I always felt like a freak on display." Her parents, devastated as much by their daughter's emotional struggles as her physical condition, did everything they could to remind the hospital staff that under that expressionless mask was a frightened, alert young woman. "We had to tell all the nurses and therapists everything Judy liked and liked to do," says Anne. "We had to make her as real and vibrant as possible."
When Judy wanted to "talk" she would bat her eyes, and she and her parents eventually devised a way to spell out a conversation, letter by letter. After some trial and error, it was determined that the most efficient method was to divide the alphabet into four quadrants. Judy would raise her eyes when the number for the proper quadrant was reached, and then raise them again at the proper letter within that quadrant. So communication of the word "love," for instance, becomes "1-2-G-H-I-J-K-L . . . 1-2-3-N-O . . . 1-2-3-4-T-U-V . . . 1-A-B-C-D-E."
It remains the most efficient way of communicating with Judy, and it's how she later managed to write a book about her experiences called Locked In: A Young Woman's Battle with Stroke, sold through the National Stroke Association. Nowadays, parents and daughter converse with remarkable speed, but in the beginning it was hardly an efficient system. "We were still perfecting our communication with Judy and hadn't yet learned of the perils of trying to guess what she was spelling," Ken recalls. "One day in ICU she had her hair washed, then done up in a certain way. She kept spelling B-R-A-I, and then we kept finishing for her. 'Brain, Judy? Is your brain hurting?' We feared that this poor child was dying of brain pain. After several false starts, Judy finally got it out: 'My braid kills! Move my head so I don't lie on top of my braid!'"
Judy remained miserable. At first, she refused to allow friends to visit, refused even to let her mother open their letters. "I did not want to hear about their tans or their boyfriends. I was completely stunned at my position," she says. "I stared at the hose connecting to my tracheostomy, and I felt completely alone. My only hope was that my parents would see how desperate I was and bring me home. But they didn't."
They couldn't, of course. Nowhere on that mental list parents carry with them, the one in the back of their minds allowing the worst-case scenarios regarding their children's health, was the possibility of Locked-In Syndrome. They found hope only in the fact that Judy's youth and energy had already allowed her to survive an often-fatal kind of stroke, and that surely she would recover better than anyone imagined. They kept waiting for signs of improvement, any signs at all. "We clung to calendar hopes," says Ken. "We would say each night, 'Well, maybe tomorrow there will be a big breakthrough.'"
It never came. Instead, as Judy's twentieth birthday approached in late July 1990, a conference was held involving the Mozersky family and everyone responsible for her care. The meeting left Ken and Anne dazed. The healthcare workers weren't discussing full recovery; they were talking about Judy's basic life functions. Can she swallow? Breathe on her own? Can we free her from life support? It became depressingly clear that the light at the end of the tunnel wasn't complete recovery. So the family prepared for the long haul: to show the world that being locked in doesn't have to mean being locked out of a future.
Judy soon returned to the Neuro-Observation Unit. She was no longer on a respirator or a heart monitor, but the doctors eventually convinced her to allow them to place a feeding tube in her stomach. Four months later, she was moved to the ward outside of Neuro-Obs, which was populated by an assortment of characters who served as constant reminders of her situation. There was Mr. Burns, an older man hollering down the hall; Mr. Troy, muttering incoherently to himself after two strokes; and Leo, who had Alzheimer's disease and wandered into other patients' rooms. Judy's roommate was an elderly woman named Gertrude, lonely and terrified.
Judy was terrified, too--of everything. Surrounded by typical stroke victims three and four times her age, she considered the notion that fearlessness is a privilege of the young, and she suddenly felt ancient. "I should have been at Cornell taking psychology and dance classes. Instead, I was lying motionless in a rehabilitation hospital after a totally devastating stroke," Judy says. "I was a statistical oddity, and I hated it intensely." Yet at the same time, she felt as helpless as an infant. When a therapist took her to see the newborn babies in the hospital, she found herself staring at them with an odd sense of understanding. "I know just how you feel, baby," she thought, as the nurse held up a sick male newborn. "You can't talk either. All your muscle movement is involuntary. I'm exactly like you."
It quickly became apparent, in fact, that baby steps were her route to independence. Ridding herself of her tracheostomy tube, for instance, was a matter of quite literally learning how to breathe all over again. By regulating the size of the opening in her trache tube--making it gradually smaller and smaller--she was made to breathe more and more on her own, until finally the trache was removed just before Judy was transferred to the rehabilitation center. She would spend the next twenty months there, sharing a room with three other patients, several of whom were highly inappropriate. One roommate was blind, for instance. Since Judy communicated with eye blinks, they had no way of conversing. Another roommate was so senile that she told Anne Mozersky that her daughter actually spoke when no one else was around.
Indeed, communication remained the hub of Judy's frustration. Though she now admits she fit the textbook definition of a bad patient--one who demanded a great deal of time and attention--she also became an expert on the relative quality of health care. She adored some of her nurses, the ones who took the time to get to know her preferences and her personality. She despised others--the ones who didn't bother to learn how to spell with her, or who ignored the fluttering of her eyes that amounted to her only call bell. Occasionally, it was the little things that added to the frustration, like the time a nurse made the mistake of running a comb through her freshly permed hair. But usually, bigger things were on her mind. "I would lie in my bed terrified and sobbing because I couldn't sleep.I would think terrible thoughts like 'What if I have a migraine?' or 'What if I have another stroke?' Nobody would know. I was afraid of dying and yet I yearned for the sweet release of death."
And then one night, her fears were realized. She developed a frightening migraine and waited--and waited, and waited. When nurses finally checked on her, she batted her eyes vigorously, indicating she wanted to spell. But these nurses didn't know her well and didn't know how to spell with her. "They thought I was being cute and funny!" Judy recalls. She lay awake with an untreated migraine until morning.
Judy didn't always have pleasant experiences with doctors either. Unlike many stroke victims, for whom there is a complete loss of sensation, Judy had the opposite. She couldn't move, but she could feel everything to an often painful extent. Yet as she lay there motionless one day, a podiatrist actually ripped off one of her toenails without anesthetic. "If I could have yanked my foot away and screamed, I would have," says Judy. As it was, the pain was so bad that she actually sat up, her muscles involuntarily showing what she felt.
Judy did everything she could to remind those around her that there was a person locked in there. "I wanted people to see me as real and vivid," she says. So she asked to be surrounded by stuffed animals, her ceiling and walls decorated with photographs and posters, and a mobile of dancers hung above her bed, which was covered with a purple floral duvet. Every night, she would carefully pick out her clothes for the next day. She wore makeup, followed fashions, and was just as particular about her appearance as she had been before the stroke. "It was a way," says Anne, "of feeling like herself."
Ken and Anne tried to provide as much stimulation and activity as possible to stave off their daughter's loneliness. They hired a person to come in six days a week and read to her. They took her to the mall, to dance recitals, to restaurants. Judy had begun eating again in rehab. She couldn't chew at all, so her parents would often bring a food processor to the restaurant, chop the food sufficiently and then place large mouthfuls at the back of her mouth to excite her swallowing reflex. The doctors had told her she probably would never eat again and would always need a feeding tube. She had told the doctors they were wrong. The tube was removed a year later.
Journeys outside the rehab center became respites from the stifling environment, but at first they were traumatic. "I was aware of looking defiantly at anyone who dared to look too long in our direction, in case it upset Judy," says Anne. "Judy was sensitive as well, and at the end of our first expedition she asked, 'Aren't you embarrassed to be seen with me?'" It still happens. A stranger will walk up to Judy in a mall and hand her mother a bouquet of flowers. Or a teenage girl will see her, then turn to her own mother and say, "Oh God, she can't talk. I feel so bad I want to cry." Judy's reaction falls somewhere between appreciation of their sympathy and disdain for their pity.
Judy yearned for the days when she got neither, so much so that by January, six months after the stroke, she decided to work toward completing her undergraduate degree at Cornell. With the help of her adviser, psychology professor James Maas, PhD '66, she took a correspondence course that summer, learning the curriculum from her sorority sisters, who had taken turns reading the material into a tape recorder. Up to then, however, Judy still had refused to see her Cornell classmates. "I don't know why," she reflects. "I suppose I didn't want to be reminded of what I had been only a few weeks before--active, independent, carefree."
When she finally decided it was time, it was difficult for both sides at first--mostly tears. But once the door opened, it became vital to her emotional recovery. Friends made the dullness bearable; they were her link to her former self. Gabrielle Mollo '92 later wrote about her first visit with Judy: "At first glance, she was hardly recognizable physically. Her long braid was tied to a neck support at the back of the wheelchair to hold her head up. But her eyes were the same. Though not as clear and steady as they had been in the past, they were still the warm eyes of the Judy who went to formals and danced and gossiped and laughed and chattered away until her eyes would no longer stay open."
"People in our situation have to cope," says Anne. "Although we were terrified and overwhelmed by the events that were unfolding, we had no time to dwell on the true horror of the moment. That was something others had the luxury of doing. People always say, 'You're so strong,' and 'I could never cope the way you have,' but actually, what was the alternative? Faced with a catastrophe, you cope or die. We coped the best way we could."
That meant constantly looking forward. They searched for other victims of Locked-In Syndrome, especially people Judy's age, hoping for a sign that the long-term prospects were encouraging. Most of the cases they heard about were older patients who didn't live long after their strokes, but they did come across a woman named Susan who lived in Baltimore. Ten years earlier, she had suffered a stroke exactly like Judy's. She had been young, at college, on birth control pills. A decade later, she was slowly developing some gross motor movement. "Ten years was an awfully long time, but at least this was something concrete," Judy says. "Susan was my inspiration."
Mostly, Judy's parents coped by working toward a future for their daughter. Canada's universal health insurance had meant that the Mozersky family hadn't faced financial obstacles to Judy's treatment. But it also meant that the normal medical course after a brain-stem stroke was placement in a chronic-care hospital. "Judy's physical needs might have indicated chronic care, but we knew that her mental and emotional needs called for a situation that afforded her more independence and control," says Ken. They were determined to fight for full-time nursing and attendant care in an apartment. The only way to do that was to convince the provincial government that this vibrant young woman did not belong in an institution. They began to prepare an Order-in-Council, an official variation from established regulations that can be granted by a government minister. They asked friends, university officers, members of the federal and provincial parliament, even the mayor of Ottawa to write on Judy's behalf.
The government immediately refused. Ken and Anne appealed the decision just as quickly, negotiating with various agencies to provide whatever assistance they could. "As I look back on that time, I realize that my parents were truly exceptional," Judy says. "At a time when I was little more than a body to be fed and cleaned, they appreciated my mind. They understood that I couldn't live in an institution, at the mercy of routines and schedules designed for people decades older than me."
While she waited for word of her fate, Judy's friends graduated from Cornell. It was another depressing reminder of how her life had been turned upside-down. "I've wasted two years of my life here, had the worst luck, and it all culminates in a lousy graduation," she wrote a friend. "Sometimes I get so upset I just cry hysterically for hours and wonder why I didn't just die when I had this stroke." But if the big events could make her miserable, sometimes the little things could be restorative, like the fact that someone at Cornell thought to send her an invitation to a senior tea. "It made my whole day," Judy said in another letter. "It really did." Seeing people move on with their lives, Judy desperately wanted to be moving on too, and in July 1992 she did. With the help of various agencies, she was able to move into her own apartment in Ottawa with a roommate and a half-dozen nurses working shifts. The move was a rite of passage, complete with flowers, mom taking photos, and family and friends crowded into the apartment to celebrate.
That was seven years ago. Recovery has been slow, still baby steps. With a little help from her physiotherapist, Judy can turn her head to her left side. She can twitch a few more muscles. She's been told she has regained some facial expression, and she no longer cries when she sees herself in a mirror. Although she's put her Cornell coursework on hold, she keeps in touch with President Emeritus Frank Rhodes. With friends and nurses, Judy shops in the nearby mall, listens to music, rents movies, attends dance recitals. She still sends letters on ballerina stationery. She may be locked in her body, but her life is her own.
Judy wakes up every morning and notices that she can't move or speak, still not quite expecting it. She stares at her arms and wills them to budge. She tries to wiggle her toes or raise her fingers or move her lips. When she dreams, which she does often, she can do it all. She walks, she dances, she flies. But often, Judy still has trouble sleeping. Lying there enveloped in her own thoughts, she hasn't yet discovered a purpose for her predicament. She's no closer to knowing the meaning of life or the reason for random tragedy. "People expect this miserable experience to have enabled me to reach some deep philosophical conclusions about religion and God. In truth, I haven't reached any. I believe in God, but am no more or less religious than ever," she says. "I have, however, decided that people are inherently good. Since my stroke, I've met only very kind people." Which isn't to say that Judy is always teeming with good thoughts. She remembers the days of rehab, in particular, when certain nurses would be staring down at her and she would be staring up, her mind tearing them to shreds. As she puts it: "I sometimes think that people are lucky that I can't talk."
But much of Judy's emotional survival--ideed, the emotional survival of her friends and family, too--has been bolstered by her sense of humor, a quick wit and gentle sarcasm that never left her throughout the entire ordeal. When medical students would file into her room at the hospital, discussing her condition as if she weren't there, she would crack up her nurses by blinking out questions like "Are any of the guys cute?" Judy could poke fun at the absurdity of her situation, like the time she tried to communicate by using a computer she worked by flexing her trapezius muscle, one of the few muscles she could contract consistently. She wrote a friend, "Hi Kelly, you get to be the first to receive a letter written by my shoulder." Or the time she dictated another letter to Kelly, which said, "I always cough when I eat. Many nurses have found out the hard way; never stand in front of me when I'm eating . . ."
To Judy's chagrin, punch lines tend to lose their punch when they have to be spelled out, but occasionally the laughter comes in the spelling itself. There was the emotional moment, for instance, when she returned to her parents' house for the first time after the stroke. As they wheeled her into the kitchen, she began to spell: R-E-C-O-V-E-R . . . Her parents jumped into the conversation, animatedly telling her about their hopes for her recovery and plans for the future. Then Judy finished her sentence: R-E-C-O-V-E-R . . . T-H-E . . . K-I-T-C-H-E-N . . . C-H-A-I-R-S.
Somehow, Judy has managed to locate some silver linings in her situation. She's ecstatic about the fact that for some reason, either because her spine has relaxed and expanded or because her pituitary gland has been affected, she has grown four inches since the stroke, from five-foot-two to five-foot-six. And at twenty-eight, she claims her lack of facial expression comes with one big advantage: "I will never get wrinkles on my face."
The question she's asked most, then, is this: Why isn't she in a deep depression? How is it possible, given the severity of her condition, that her physical stagnation hasn't given way to emotional surrender? Judy has no real answer. "Although I had my previous world shattered in one day, although I lived in depths of misery and sadness," she says simply, "I am too happy a person to become depressed."
This is the most horrible thing I've ever heard of, and after three days of trying, I can't come up with anything worse. This makes quadrapalegia look like Disneyland.
After 15 years in this state, Mozerski has, through intensive therapy, recovered some control over her facial and neck muscles, and can move her shoulder slightly. She even wrote a book using the eye-movement alphabet she developed to communicate. The article is supposed to be inspirational like that. I think it's very nice for her that she's hung on and she's making her way back towards slight mobility through sheer force of will, but fuck me if I'm ever spending decades in therapy to move my little finger a quarter-inch if that ever happens to me. This Schiavo fiasco has prompted me to write a living will, and for damn sure there's going to be a "remove the feeding tube and pump me full of morphine" clause for locked-in syndrome.
Original article
