Copyright 1995 The Times Mirror Company
Los Angeles Times
December 17, 1995, Sunday, Home Edition
SECTION: Magazine; Page 20; Magazine Desk
LENGTH: 11827 words
HEADLINE: JULIA UNDERSTANDS EVERYTHING;
29 YEARS AGO, JULIA TAVALARO HAD A STROKE THAT LEFT HER DEAD TO THE OUTSIDE
WORLD. BUT INSIDE, LIFE WAS BURNING MORE FIERCELY THAN PEOPLE IMAGINED. THIS
IS THE STORY OF THAT LIFE AND HER REMARKABLE JOURNEY.
BYLINE: By Richard E. Meyer, Richard E. Meyer is a national correspondent
for The Times. His last article for the magazine was on Loving County in
Julia Tavalaro heard her baby whimper, then sob, then cry. It was an
She had just tucked Judy, who was 14 months old, into her little yellow
pajamas and put her to bed. Her husband, George, was in the den watching a
ballgame. Julia went to the living room fireplace and stood quietly, as she
did sometimes to find strength, especially when she had one of her
Fondly she thought back to Judy's first birthday. There would be a party for
her second one, too: hats, noisemakers . . . The pain twisted tighter in
Julia's head. She would go back upstairs and get a couple of aspirins. No,
she would get three. As she reached the steps, she heard Judy's first
whimper. The staircase curved upward in a grand sweep. Julia held onto the
walnut banister. At the top, she heard the baby shudder into a sob, then
into frightened and disconsolate weeping.
Julia turned left along an open balcony, which served as the upstairs
hallway. She would go down to the bathroom, get the aspirins, then come back
to the bedroom and check on Judy. Suddenly Julia's vision fractured. She
grabbed the balcony railing. Her head hurt worse than it ever had before.
She walked slower, and things grew foggy. Judy cried louder. Julia felt her
legs weaken. The walls and the ceiling began to move. Her knees buckled. Her
vision dimmed, and then she fell.
She sprawled on the gold carpet, too scared to scream. Her head was heavy.
It hurt so much that she had a crazy thought: Someone had parked a car on
it. She could no longer see. She was afraid that she might be dying. She
thought about the baby; Judy was still crying. Julia felt the family dog lie
down beside her. The dog's fur was warm. Her nose was cold. She whined
softly. Judy's cries grew faint. Now Julia could not feel. She could not
hear. Her last thought was: "Baby, stop crying."
For Julia Tavalaro, 31, blond, striking and full of life, it was the start
of a nightmare rare in America, perhaps the world. She was having a stroke.
Within days she suffered a second one. Then, for six years, at best
estimate, she lived what others know only in the terror of their dreams. She
regained consciousness, but no one noticed. Worse, she was paralyzed, and
she was mute. She had no way to let anyone know that she was there, inside.
She was aware, but she was trapped, locked in. She was buried alive.
She lay in a hospital bed, fully cognitive. She could see, hear, feel,
taste, smell, understand, remember and think. She ached with deep emotions.
But she was helpless. She tried hard to communicate. She could move her head
and eyes ever so slightly, but her movements were barely perceptible. She
could cry, even scream, but her cries sounded like puerile whining and her
screams like guttural howls. They only fed the misperception that her body
was present but her mind was not.
People ignored her. No one told her what had happened, or what would happen
next. She felt alarm, then fear. Julia had fire in her soul, and it forged
the fear into anger. But weeks, then months melted her anger into despair.
She seemed less than human, less than animal, then less than deadwood. She
lost track of time. Her days choked on memories, worries and fantasies. Her
nights overflowed with bad dreams. She came to realize that she was not
dying. Worse, she could not even kill herself.
Now, nearly 30 years later, Julia is back. She was discovered. Therapists,
two in particular, began a long and painful effort to coax her out and to
convince the world that she was there, and indeed had been there all the
time. Her fire, a volatile mix of independence, willpower and appetite for
life, served her well. It gave her an invincible determination to survive.
Even when her life was at its most unbearable, she persevered. In the end,
she refused to surrender to psychosis or death.
She is still paralyzed and cannot talk. But with a computer sensitive to her
head movements, she can write. She is a poet. Some of her work is dark, some
is angry, some lyrical. She is writing a book of poetry and memoirs for
Kodansha, publisher of the centenarian Delaney sisters, whose memoirs were a
recent bestseller. Julia is bright, witty, independent and sensitive. She
speaks by moving her eyes as her visitors point to letters on an alphabet
board and find the ones for what she wants to say.
It is a hard way to talk; untangling a single memory can take most of a
morning. This is the story of what happened to Julia, most notably what it
was like to be imprisoned inside of herself. It is based on medical records
and the recollections of family and those who gave her care. It is based, as
well, on 450 hours of conversation with Julia, on her letter board, month
after month, over much of a year. It is a story of utter tragedy and the
triumph of a woman with uncommon courage.
Julia Tavalaro was born in the village of Inwood, N.Y., a small blue-collar
town on Long Island. Her family called her Julie.
Her father, Joe Horwat, was from Budapest. His parents were Gypsies who had
settled in Pennsylvania. A dashing young man, he raced midget cars, stock
cars and motorcycles. He smoked Lucky Strikes and drank Johnny Walker red.
Some people called him "Crazy Joe." He liked to throw hunting knives, and
when he got drunk, he would hold one in his teeth and another in each hand
and slash at the air and dance.
He was strict and had a temper. When he got angry, he would tear off his
belt and whip his children on the spot. Julie would run behind a woodpile
and hide. But she loved him. Inside, he could be a softy. He liked to have
fun and cared not a bit what people thought. He ran an auto shop in his home
garage. He had an easy laugh and liked to joke with customers. Julie, her
sisters and her brother helped him change spark plugs, recharge batteries
and clean carburetors.
Julie's mother, Mary Augustine, was Polish and German. She came to the
United States when she was 19. Her eyes sparkled with hints of green and
blue and gray, and she passed them along to Julie. But she could be stern,
even grim. She used lipstick but never any perfume; it was for sluts.
Because her husband drank up a lot of his receipts, she shopped at cheap
bazaars. She showed Julie how to pick out color-coordinated blouses and
skirts. She braided and curled her hair and taught her always to look her
She also taught her to be a good example and to watch carefully over both of
her sisters, Joan and Midge, and their brother, Joe. Neither of Julie's
parents was openly affectionate. Neither kissed her often enough for her to
remember. It was Grandma Horwat, when she came for a visit, who would pick
up Julie and give her a hug. Nana came from Pennsylvania once or twice a
month, or whenever she heard that her son had been raging out of control and
strapping one of the children.
Nana would arrive wearing a housedress and black shoes with laces and little
heels. She carried a black vinyl purse with gold-colored clasps and black
straps. Her hair was white. She tied it in two braids, which she pinned on
top of her head. She would haul herself up, double her fist and yell at her
son: "If you ever hit anybody again with that belt, I'll take it and put it
around your neck."
She would shake her fist so hard that her braids would fall down over her
Joe Horwat would squirm, back away and flee into the garage.
Julie could hear him throwing tools and spitting into the kerosene can where
he washed car parts. She would chuckle.
Then there would be peace, at least until Nana left. She showed Julie how to
cook. In her quiet, mellow voice, she also taught her the Lord's Prayer.
Nana held a rosary in her gentle, wrinkled hands, and she showed Julie how
to use it. She saw to it that Julie and the other children went to Mass.
None of this was easy. Even as a child, Julie believed in reincarnation.
Rubbish, Nana said. But Julie insisted that it was not. She ran and hid and
never learned the Lord's Prayer all the way through. But Nana was patient.
Julie always came back and asked her to recite it once more.
"You again?" Nana would say, with a smile.
Julie loved her a lot.
When Julie was eight, Nana got sick. She died of a stroke.
Julie went to high school in the well-to-do town of Lawrence, next door. She
was 5 foot 5, and she had an exceptional figure. She was her mother's
daughter, and her behavior was exemplary, but every now and then her
father's influence got the best of her. One day she decked another girl in a
fistfight over a young man at the beach. She won a beauty contest, made the
baton-twirling team, got good grades and wanted very much to go to college.
But when she was still a sophomore, her parents told her to quit and go to
work to help make ends meet. She got a succession of jobs, then finally
became a telephone operator. Her father gave her a used blue Oldsmobile
convertible. She drove it with the top down. Despite the sun, her hair grew
darker, so she bleached it a drop-dead platinum blond. She and sister Joan
double dated. Except for an occasional drag race through red lights and some
hiding from the cops, their only offense was staying out late.
That was enough, however, to get them thrown out of the house. Julie and
Joan moved into an apartment near the beach. Some nights they would take the
blue Olds to the Runway Inn, a bar near an air base in Hempstead, and dance
with servicemen. Julie began to get headaches. Probably migraines, she
thought, so she dismissed them. One night she danced with an ex-Marine who
had dark hair, a square jaw like her father's and impressive muscles. There
was a panther tattooed on his right arm.
Julie was smitten. Headlong, she married him. It was a rocky union from the
start, and it ended when she got pregnant and he did not want the baby.
Julie was overjoyed at the prospect of being a mother, and his reaction
broke her heart.
She ran to the kitchen and came back with a carving knife. She did her
father's dance, screaming and slashing.
Her husband ducked.
They grappled. The blade was between them. Had she been just a little
stronger, she would have killed him.
But he took the knife away.
He gathered up all of the other knives and scissors and can openers in their
apartment, along with his pistol, and he hid them.
Julie left for California with an older married man and had an impetuous
fling in San Francisco. It made her feel terrible. She came home to her
parents. To pay for her baby and for a divorce, she took back her old job at
the telephone company, and she got a second job at an answering service. Her
headaches got worse.
Her child, a girl, was stillborn.
She was grief-stricken, but she refused to be crushed. She was still in her
20s and single, and her 115 pounds were curved to perfection from her toes
to her pale, golden hair. She glowed like poppies in the sun. One day at
Coco's, a neighborhood drugstore, a man stopped her. He was George Tavalaro,
an assistant golf pro at the country club over in Lawrence. He had followed
her into the store to ask her for a date.
George was 33 and a bachelor. He knew some of the richest and best-looking
women around; he had taught some of them golf. But he found Julie to be the
most stunning woman he had ever met. She found him attractive, too. He had
short, dark hair and weighed 160 pounds. Most of it was muscle. He had a
remarkable golf swing. He drove golf balls down Mott Avenue and never broke
a window. He was known to be a gambler. Gin and poker were his best games.
He played to make money, and he often did.
They fell in love and were married. Before long, Julie discovered that she
was expecting. She was thrilled. She told George, and he was delighted. That
made her even happier. Silently she promised St. Jude, the patron of
hopeless cases, that if everything went well this time and her new baby was
born safely and in good health, she would name it after him.
On May 26, 1965, Julie gave birth. The baby was a girl. As Julie held her
child, she could see herself. The baby's hair was dark brown, Julie's
without peroxide. Her eyes had hints of gray and blue and green. Julie kept
her promise. She named her daughter Judy.
George bought a fine house. It was a three-bedroom Tudor with red bricks,
brown trim and a fieldstone portico. He loved Julie. She loved him. They
loved their baby. There was only one cloud. Julie's headaches were getting
She began to lose weight. Her doctor gave her injections of Vitamin B-12.
They seemed to help, but only for a while. Once she almost fainted carrying
Judy up the stairs.
One evening, a fellow golf pro stopped by to see George. Julie tried not to
be rude, but finally she had to excuse herself.
"George," she said, "I'm going up to bed and lie down. I'm feeling woozy."
A week later, on Aug. 6, 1966, Julie collapsed.
From the balcony in front of the bathroom door, Julia Tavalaro managed to
stagger, perhaps crawl, to the bedroom. She undressed and climbed into bed.
Sometime between 12:30 and 1:30 a.m., she reached across with her right hand
and shook her husband.
"George," she mumbled.
He had found her in bed when he came upstairs. Now he awoke with a start.
There was fear in her voice.
"My left side," she said. "It's all paralyzed."
He called the police. They summoned a fire department ambulance. It took
Julia to St. Joseph's Hospital, a venerable, yellow brick institution in Far
"My head!" she screamed. "My head! It's like I'm getting hit with a hammer."
Julia was suffering a subarachnoid hemorrhage. For years, blood had pulsed
normally through the vessels of her brain. Such pulsing hits hardest at
curves, where it makes the blood thump against the vessel walls. In time,
this pounding weakened one of the walls, perhaps at a normal curve, but more
likely at an abnormal one, misshapen from birth. The curve ballooned. This
might have been causing her headaches. Now the balloon exploded. Blood shot
It probably happened at the base of the brain, where blood vessels enter and
branch out. Each branch offers curves. Ninety percent of subarachnoid
hemorrhages occur there. Very likely, it happened near the middle of the
brain stem, at a place called the pons, which is Latin for bridge. Indeed,
there was a 20% chance that a jet of blood pierced the pons itself, tearing
brain tissue apart.
The blood poured into a space between the brain tissue and a membrane called
the arachnoid, which surrounds the entire brain, including the pons. This
sphere of subarachnoid space contains spinal fluid, which bathes the pons,
as well as the rest of the brain. When the blood filled this space, it
probably blocked the flow of spinal fluid, causing it to collect and create
At the same time, the blood washed against the outside of other blood
vessels in the subarachnoid space. This was likely to have convulsed these
vessels and caused them to pinch, constricting the flow of blood inside and
depriving nearby tissue of oxygen. Without enough oxygen, this tissue would
smother, perhaps die.
Damage to the pons can be disastrous, because the pons actually serves as a
bridge; nerve fibers pass through it, carrying commands from the upper
brain, or cerebral hemispheres, down to the bottom of the brain stem. From
there, these commands go into the spinal cord.
Julia was awake and alert. This indicated that the back of the pons, vital
to consciousness, was intact. She could understand, think, generate emotions
and talk. This showed that any damage to her cerebral hemispheres was not
But she was partially paralyzed, and her speech was slurred. This was
evidence that the front of the pons was damaged, restricting passage for
nerve fibers that control movement and articulation.
She could not move her left side, so the damage to the pons was probably on
the right, because the nerve fibers cross as they enter the spinal cord.
"What's going to happen to me?" she pleaded. "Why me?"
George hardly knew what to say.
Her head pounded. It would not stop. She screamed so loudly that she could
be heard in the elevator when the doors opened. "I'm sick, Joanie," she
gasped to her sister. "I don't know what's wrong with me. Please take care
of my baby."
She did not get better. Suddenly, on the fifth day, she suffered her second
Perhaps another blood vessel exploded. Or maybe the original hemorrhage had
washed so thoroughly against the outside of the surrounding vessels that
their convulsions pinched the blood flow to virtually all of the pons:
front, back and both sides. With less and less oxygen-bearing blood, more
and more of the pons could have smothered and squeezed more of the nerve
fibers passing through it.
Now Julia was not able to speak. She lay silent as an indrawn breath.
Paralysis seized both sides of her body.
Doctors cut a hole in her throat and inserted a tube for oxygen.
But she slipped into a coma.
The doctors packed her in ice. If they could persuade her brain to
hibernate, it would decrease its metabolism, and it would need less oxygen.
Julia's family doctor suggested a neurosurgeon from Manhattan. He came out
to Far Rockaway and examined her. "George," he warned, "if she comes out of
this, she won't be the same girl that you knew."
The neurosurgeon suggested taking her to Mount Sinai, a large Manhattan
hospital with first-rate doctors and the latest in medical equipment.
George rode with her in an ambulance. Julia was silent. She lay still as a
At Mount Sinai, doctors placed her between bed sheets filled with liquid
nitrogen, which is colder than ice. Julia shivered violently, but it was
only reflexive. They put her in a hyperbaric chamber. It surrounded her with
oxygen and pressure to force more of the oxygen into her blood. Maybe some
of it would reach the damaged brain tissue. They injected her with
radiopaque dye and X-rayed her brain, trying to spot the blown-out blood
vessel. If they could find it, maybe they could operate and fix it.
But nothing worked.
"George," said Joe Tavalaro, another brother, "she understands everything
you say." George had the same hunch, and one doctor told Muffie Tavalaro,
one of George's sisters, to be circumspect about what she said in Julia's
room, because Julia could hear.
But it was not so.
Julia was in a profound coma. Weeks went by, and then months. The doctors
gave up. One told her sister Joan: "All she needs is to be fed and to wait
for her respiration to go. Once she gets pneumonia, she's dead."
But Julia did not die.
One doctor told George that she might outlive him. George was broke. Members
of the country club had collected $3,000 for Julia's care, but it was long
since spent. George sold the house, but even that was not enough.
Eventually, the hospital bills could come to more than $1 million. Nobody in
the family had that kind of money. He arranged for Medicare, Medicaid and
Social Security to take over, and he and Joan summoned another ambulance.
One day in the frozen heart of winter, it took Julia across a bridge to
Roosevelt Island, in the middle of the East River. Once called Welfare
Island, it was where New York had built 26 institutions over the years to
warehouse its most desperate cases: Smallpox Hospital, Epileptic Hospital,
Fever Hospital, Paralytic Hospital, Hospital for the Incurables, the
Almshouse, the Work House, the Lunatic Asylum. Two were still operating. One
was Goldwater Memorial Hospital, a five-story, five-wing stack of gray and
It was a chronic-care facility, which meant that its patients were not
likely to leave soon.
"Oh, no," George groaned when he went inside. He swore under his breath.
But there seemed to be no choice: His 32-year-old wife, beautiful, spirited
and smart, would lie there among people in their 60s, 70s and 80s, all
incapacitated in various ways, some unaware of where they were, or who.
"The organics," one doctor said.
Julia Tavalaro was admitted to Goldwater Hospital on Valentine's Day of 1967
or 1968. Records show both dates.
No one knows how long she was comatose. It might have been a year. Slowly,
silently, she became aware of light. It was misty and blue-gray. She could
see hills in the middle distance. They were tan, outlined in black and
covered with zigzag lines. The lines were black and slippery.
She walked up the zigzag lines and slipped down. She climbed back up, then
slipped farther down. She was awake but not awake. Everything was still. She
could not taste or smell or hear anything, but she could feel herself
walking up and sliding down, struggling back up and slipping farther down,
until she was so far down that she could not climb back up again.
She grew frightened.
She felt movement. Someone was raising her head and her shoulders. Then she
"F---! Goddamnit." It was a woman. She was swearing like a sailor's parrot.
The words sounded brutal against the silence. Julia was shocked.
Dread rose in her throat.
She started to cry. Then she summoned a scream. She could feel the scream
inside her chest. It was loud and piercing.
But she could not hear it.
A thought crossed her mind. Maybe she was dead, and maybe she had gone to
hell. Maybe the cursing was part of hell. She could hear other women and a
man, but she could not understand anything that they were saying. This, too,
she thought, must be what it is like in hell.
What would happen to her?
She had always imagined that hell was a dark place where people were
tortured. What she feared most was the pain.
Her own screams fed her fear, especially the stubborn fact that she could
not hear them. Her fear grew into hysteria, then anger. She did not pray.
She was not, after all, in the habit of praying, but the cause was larger
than that. God had abandoned her, and it made her furious.
If there was a God, she thought bitterly.
In her mind, she saw Judy. She could still hear her crying. She remembered
her own headache. She recalled climbing the stairs, collapsing on the
carpet. Why had Judy been crying? Did anyone help her? What was happening to
her now? Julia's worries mounted. She could feel her own sobs, but she could
not hear them. She could not feel any tears. She tried again to scream, but
there was no sound. She thought she must be deaf. She tried to shout. Still
there was no sound.
She heard a commotion, a clatter. She was afraid that the cursing might
All at once, her vision returned; Julia could see. At the posterior portion
of her pons, crucial to regaining consciousness, function was returning.
Julia saw a woman. She was noticeably stout. She wore a white uniform and a
white cap, and she looked like a nurse. She was pouring a gray liquid from a
can into a container on a metal pole. The pouring was not going well, and
she was irritated. She probably was the one who had been cursing.
From the container, the liquid went to a pump, which pushed it through a
tube that looped down next to her bed. The tube went back up and across her
sheets and into her nose.
Food, Julia thought.
She could feel something in her throat. Probably another tube, she thought.
She could feel herself breathing through it.
Maybe she was not dead.
Maybe this was a hospital. She still thought that she might be in hell, but
now she was not sure. If this was a hospital, why was she here?
She remembered deciding to get three aspirins, but she knew she had not done
it. She had collapsed instead. Nonetheless, now her headache was gone.
She recalled feeling fur and the dog's cold, wet nose, but nothing
afterward. No matter what had happened or where she was now, Julia wanted to
go home. She called for her parents. Nothing.
Then, "George! Judy!"
Then she screamed their names.
Now, for the first time, she could hear her own sound. But it was not like
anything she had ever heard before. She tried again. She formed each name
perfectly in her mind. Then, one at a time, she screamed each name as loudly
as she could. What came out was a whine, and the whine turned into a howl.
This terrified her most of all.
She was not deaf. She was not dead. But something was horribly wrong.
Her first instinct was to fight.
As a start, she wanted to kill the nurse. Part of it was frustration: Julia
needed help, and the nurse was ignoring her. Another part of it was envy: If
the only thing the nurse ever did was curse, at least she could talk. All
Julia could do was whine and howl and move her eyes.
She looked across the room. She saw more beds. Each had a woman in it. One
was talking to another nurse, who was filling her pump with liquid, too. A
man who looked like a doctor was talking to still another nurse. The women
in two of the beds were babbling to themselves.
Julia wanted desperately to leave. Her legs were flat. She could barely see
them, but she could feel them. They stretched out ahead of her like a pair
of rails. Her forearms were flexed upward, tightly against her chest. Her
hands were curled into fists. She tried to move her right one. She could
not. Then she tried the left. Nothing.
Then a leg. Nothing. Finally the other. Nothing.
She panicked. If she was not dead, then she must be dying. She screamed
again, louder than ever. Once more her scream sounded like a whine, then a
howl. But this time she used so much force that her body trembled. A few
twigs of signal must have gotten through her pons, because her head moved,
But no one noticed.
Her arms and her hands were bone thin. How long had she been like this? The
walls were pale and naked. There was no clock, no calendar.
She cried. It came out as a wail.
"Shut up," the nurse said, without looking at her.
Julia wailed again.
When the nurse finished pouring, she turned and walked away.
Slowly, Julia began to discern her plight. Whatever had happened, her mind
was still working. All of her senses were, too, and so were all of her
emotions. Inside she was whole. But outside she was unable to let anyone
know. Outside she was not getting through to people. In some way, she seemed
to be hidden, invisible. She could not make anyone realize that she was
Perhaps, she thought, it was understandable. Maybe her eyes had been open
while she was unconscious, at least some of the time. Perhaps she had even
made sounds once in a while, too, so maybe she did not seem much different
Everything would be all right, she thought, once she regained her ability to
She would try harder.
Her wailing finally attracted another nurse. She came in. Abruptly, she
closed the curtain around Julia's bed.
Julia's face pinched with fear. A hot, tight cry rose in her chest.
Without saying a word, the nurse pulled down Julia's sheet. She lifted her
Julia saw a diaper.
Shame rushed to her cheeks like a crimson stain. Her emotions jumbled. First
she felt horrified, humiliated. Then she felt appalled, futile and
frustrated. Finally, Julia flashed with anger.
"This can't be me!" she insisted to herself.
She tried hard to fight. But no matter how much she strained, she could not
move. The nurse changed her diaper. Julia screamed. Out came the whining
howl. Julia closed her eyes and opened them. The nurse did not notice. Julia
strained again, even harder. Her head shook, but it was barely noticeable.
"Have to clean up the s- - -," the nurse grumbled, to no one in particular.
Julia was mortified.
Hour by hour, she swung on a manic trapeze of hopes and fears, anger and
shame. "I'm going to get better," she told herself, "especially when I get
my voice back." Then she decided, "I'm dying." Next she thought, "Maybe I am
dead." Then she pleaded, "Please let me die."
Finally she slept.
When she awoke, it was night. The room was dark. At the foot of her bed she
saw a shape. It had three eyes. Two were large, and one was small. The small
eye was red. It winked at her. She was back in hell, and this must be the
devil. She thought she saw him smile. Never had she been so afraid. She was
She did not know what to expect. Any minute the devil would move. He would
step toward her and hurt her.
But he stayed at the foot of the bed. She stared at him. He winked back.
She began to perspire.
Someone came in. It was a nurse with a flashlight. She shined it on Julia's
face. Julia's eyes were wide open, but the nurse did nothing. She said
nothing. After a few seconds, she lowered the light to the floor. Then she
moved to the next bed. She shined her light on another face, and then
another, and another. Julia had never seen anything so ghostly, so
soundlessly horrifying. This, she thought, must be what happens in hell.
The nurse crept from bed to bed, checking everyone in the room. Then,
silently, without a word, she left.
The devil was still there, winking.
Slowly, daylight stole through a window. As the room grew brighter, Julia
could see his shape down there, at the foot of her bed.
The devil was a machine.
The machine had two dials and a blinking red light.
She stared, dumbfounded. Was she going crazy?
The thought chilled her.
Would she be hidden inside of herself like this forever? That would be worse
than insanity. Julia opened her mouth. A wretched howl spilled out.
It echoed, dry and hollow as a desert wind, down a long, empty corridor.
Days and nights washed together. The summer light outside her window began
to die. Julia's room was on the top floor. All she could see was sky, and it
was gray. By the clothes people wore she could tell it was fall.
Nurses and doctors came and went. None of them said anything to her, but
sometimes they talked to each other about her. Some of the nurses called her
"a crybaby." Others said she was "a pain in the ass." She overheard them
mention a stroke, but she did not know much about strokes or what they could
Once someone came in and examined her, pricking her lightly with a pin.
Julia grimaced. Then, on command, she moved her head as much as she could.
But it was not enough. The examination report recommended little more than
keeping her comfortable. "Evaluation of perceptual modalities was not
possible because of patient's inability to respond verbally or with head
nods. (Patient) cannot communicate."
One day Julia heard some nurses say that her parents would be coming. Their
timing could not have been worse. Julia was in terrible pain. Her stomach
felt like someone was cutting her with a knife. She had been screaming for
hours when her father and mother finally got there.
Both were in tears.
Julia had never seen her father cry. He sobbed, gulped and wiped his tears
on the sleeve of his checked shirt. His pants, newly scrubbed, were stained
with indelible grease, and his shoes were smudged. She could smell the
grease and his Lucky Strikes. She thought about the garage at home, and she
wanted so much for him to pick her up and take her with him.
Her mother buckled with weeping. She tried to stifle her grief, but it was
too powerful. Tears fell on her dress. She clutched a black purse in one
hand and put the other on Julia's shoulder. Her touch felt soft, like a
"Don't cry, Julie," she said. "Don't cry."
Julia was stunned. For the first time since she had regained consciousness,
someone was speaking to her. Maybe her mother knew she could understand.
Julia shifted her eyes. She tried to move. With crushing exertion, she could
feel her body tense, then her neck and finally her head. It gave a tiny
shake. She screamed, but her scream came out a shriek. She furrowed her
brow, and her face grew hot. She wanted to stand and shout: "Look at me! I'm
in here, inside. Get me out of this place!"
But her parents did not notice.
Julia became annoyed, then aggravated, then angry. Finally her anger turned
into fear. If her parents could not sense that she was there, inside, then
nobody would. Gradually a deep sadness overcame her. She was overwhelmed.
All she wanted was to die.
A doctor came in. He nodded at her parents. She needed frantically to tell
him about her stomach and how much it hurt, but all she could do was scream.
Her father crumbled. "I can't take it anymore," he said. He turned, walked
out and stood in the hall.
The doctor felt parts of Julia's body. When he put his hands on her abdomen,
she screamed the loudest. That was significant; she had communicated.
But still nobody noticed.
It felt, the doctor said, like Julia needed an enema.
Julia's mother found a chair and sat. They were alone. She stared at her
daughter. It was more than Julia could stand. What did her mother want her
Get up and walk?
It seemed like 10 minutes passed before her father returned. He went to her
bed, leaned down and kissed her forehead. She felt strength in his kiss. It
was firm, even rough: a man's kiss.
He straightened up.
"Goodbye, Julie," he said, softly. His eyes were red. He spoke gruffly, as
if he was choking back more tears. He sounded lonely, but there it was
again: He had talked to her. Now both of them had spoken to her. He was her
father; certainly he must sense that she could hear and comprehend; surely
he must know that she was really there.
He hesitated, then turned away.
Her mother stood. "We'll be in again soon," she promised. She leaned over
and kissed Julia on the forehead. It was a quick, hard kiss. Her mother
sounded bossy, the way she got when she was confident, positive.
"Goodbye, Julie," she said.
Her parents left, but the garage smell lingered. Julia felt a deep sorrow.
In spite of everything, she had a hunch that her father and her mother knew
that she could recognize them, knew that she had understood every word and
knew that she was aware.
The hunch haunted her.
So did something else. Why had her father and her mother kissed her? Why
were they crying like this? Did they know something that she did not know?
Was something bad about to happen?
A nurse brought her the enema, but her stomach hurt for two more days.
No one ever said why.
Whatever was going to happen would be painful, she thought. She probably was
going to die, and it would hurt. She probably would die in pain.
Her parents had not said a word about Judy.
Was she safe?
Was she happy? Sad?
Did Judy miss her mother? Did she even know that her mother existed?
Still Julia did not die. In time, however, she fell gravely ill.
Damage to her motor nerves, probably where they went through the pons, had
impeded her cough reflex and other reflexes in her throat. Normally these
reflexes would have directed mucus and saliva, infected with viruses and
bacteria, away from her lungs and down into her stomach, where they would
have been killed by acids. But now the reflexes did not work, at least not
very well. Germs dripped into her lungs, and a cold turned into pneumonia.
She was placed under intensive care. Doctors medicated her intravenously.
She ached everywhere. She slipped into and out of consciousness. One day --
maybe it was night, she could not be sure -- she saw a foggy blue light. It
was like the one she had seen when she first awakened.
In the blue light, she saw her grandmother. Nana was standing a few feet in
the air over a riverbank. Her hair was white and done up in braids, just
like it used to be, and her face and hands had the same wrinkles. She wore a
purple dress. It was Julia's favorite color. The dress had tiny flowers on
it. On her feet were her black shoes with the laces and the little heels.
She carried her same black vinyl purse with the gold-colored clasps.
Her face was serious but calm. She looked at Julia and smiled with her eyes.
She held out her arms. Then she opened her left hand. Finally she raised her
right hand and beckoned.
"Julie, come," she said. "Don't be afraid." Her voice was high. It sounded
musical, like it did when she sang.
Julia was standing in the river. Water flowed across her feet. She could not
feel it, but she could see it and hear it bubbling over rocks. She moved
toward her grandmother. The water rose to Julia's knees. It tugged at her.
The bottom of the river was muddy. Her feet began to slip.
"Julie, come," Nana said again, more softly. "Don't be afraid."
Julia did not reply. She knew that her grandmother understood. She felt
Nana's love. It touched Julia like a shadow. It made her anxious. More than
anything, she wanted to go to her grandmother, but the water was tugging her
She was sad, angry and afraid. She wanted to die. She sensed her
grandmother's patience. It was as if she could hear Nana saying, "You
The water rose to Julia's waist.
"Julie, come," Nana said a third time, more softly still. "Don't be afraid."
Julia could feel her hands and her legs move. She struggled through the
water. She stretched out her arms, but she kept slipping back. She grabbed
at Nana, but the water and the mud pulled her away.
Nana faded. She disappeared.
When Julia awoke, she thought for sure that she was dead. It felt like her
hands and her legs were still moving.
But they were not. Nor could she force them to move. She tried, then tried
harder. She strained with all her might.
In the hideous world of the living dead, this meant that she was still
One day, a little girl walked into Julia's room. The child hesitated. Then
she stood and stared.
Julia was astonished. The child seemed to be about 2 years old. She wore a
furry white coat with black leopard spots, a hat to match and shiny patent
leather shoes. Months had gone by, maybe more than a year, but Julia knew in
an instant: It was Judy.
The child took a step. With one hand, she held a bigger hand. It belonged to
Julia's mother. The little girl was beautiful, and Julia wanted to point.
She wanted to shout, "Look at her. She's mine! This is my daughter!" Happy
and proud and sad all at once, she watched as Judy tightened her grip.
"Why," Julia pleaded in stricken silence, "couldn't it be me, not Mom?"
Julia's mother said softly, "Go and kiss your mother." Judy drew back, and
Julia saw fear in her face. It made Julia cry. Tears came, but she smothered
her sobs; they would only cause more fright. As Judy stared, Julia's mother
lifted her, leaned over Julia's bed and lowered her to Julia's chest. The
child's eyes were wet. Never had Julia seen anyone so scared. Through all of
the fear and the tears, Judy kissed her mother for the first time.
The kiss was warm, soft as a whisper, Julia thought. She ached to reach up
and hug her daughter and kiss her back and never let go. But it was
hopeless. Julia's mother put Judy down. "This is your mother, Judy," she
said, trying to sound encouraging. Julia cried harder. Judy stood beside the
bed and stared. She did not make a sound. It tore Julia's heart. She fought
hard to speak, but nothing came out. She struggled to move, and her head
nodded, but so slightly that no one noticed. Slowly, Judy turned away.
She looked at Julia with wary eyes. She seemed puzzled, lost and frightened.
It made Julia feel dumb and ugly, like an animal. She searched her
daughter's face, and she had no doubt: The child was seeing a monster. It
was the same every time. None of these visits, no matter how short or how
long, ever got any easier. Each time Julia watched Judy's little leopard
coat go back out through the door, she wept.
When George came to visit, it was harder still. He was the one, she said to
herself, bitterly, who had dumped her here, in this forsaken repository for
the old and the poor and the ruined. When they had gotten married, she
remembered, she had left her family and put him first, and now he was
abandoning her. She wanted him to get her out of here immediately, to take
her back home and to care for her there.
It was hard to admit, but she worried that he had found a girlfriend,
probably a rich woman from the country club who was living in her house,
using her furniture and maybe even driving her car. It made her furious. She
drove herself crazy with jealousy. "Good for her!" she said to herself,
angrily; George was not such a prize after all, and now his girlfriend had
to put up with him.
One evening Julia happened to look at her left hand. She was startled. Her
wedding ring was gone. Both of her hands had long since curled into fists,
so tight and so stiff that no one could open them. Somebody must have taken
the ring during her coma, while her fingers were still limber.
George, she thought.
"Dirty, rotten sewer rat!" she said to herself. She sobbed and cursed
throughout the night and all of the following day.
When he came to visit the next time, she saw that his wedding ring was gone
as well. The marriage was over, she thought. Maybe God knew what he was
doing; if she could have gotten hold of George, she would have killed him.
She wanted to cry, but she would not give him the satisfaction.
He usually wore his golf jacket and a cap. He always said hello and started
talking about golf, as if she could understand every word. As he talked, he
gripped an imaginary club and practiced his swing. It was an old habit, but
now, as he stood there next to her bed and swung his arms again and again,
it drove her to distraction.
George did not know what else to do. Besides, he had a hunch that she could
understand him. Indeed, one day he was certain. "Julia, I have got bad news
for you," he said. "My brother Jay has died." Jay had driven her to the
hospital when Judy was born, because George could not get home in time. And
now Julia's eyes filled with tears. They rolled slowly down her cheeks.
George saw them. He told her doctors.
"Yes, George, OK," they said. But he could sense that none of them believed
George's sister Muffie also had a hunch that Julia could understand. When
Julia cried, for instance, it sometimes seemed to Muffie that she wanted to
But it was Julia's sister Joan who became convinced. One day, she and their
younger sister, Midge, were standing next to Julia's bed, and Midge's
then-husband, Bob, told a dirty joke. All three laughed. Joan turned to look
at Julia. She thought she saw a muscle move in Julia's face. "Hey, run
another one by me, Bob," Joan said, slowly and quietly, daring for the first
time to hope. "Take a look. Midgie! Come over here. Watch."
This time all three saw it.
"Julia!" Joan shouted. "You can understand!"
All three started talking at once. To Joan, Julia looked like she was trying
to reply. "I'm trying to laugh," she seemed to be saying. "Get me out of
The next day, Joan phoned the hospital. She told doctors and nurses and
administrators what she had seen. "Dirty jokes," she said. That is what did
"Impossible," they said.
"Nothing is impossible!" Joan shot back. "Try me."
Finally she persuaded a doctor to come to Julia's room. Joan told a dirty
Joan took the doctor out into the hall. "It's got to be you," she said. She
asked him to go behind a curtain and stay out of sight.
Then she tried again.
"You're right," the doctor said. "It's something to go on."
But nothing came of it.
"Julie!" Joan scolded. "We've got to stand together on this. . . . You
(understood) me (the first time), didn't you?"
In time, she and Joan came up with a code. One blink was yes. Two meant no.
But it was frustrating. There were good times, when Julia reacted. And there
were bad times, when she did not.
A good time was when Joan brought her a small ceramic figure of a nurse. The
nurse was holding an enema and a sign that said: "I have something for you."
Julia laughed out loud.
A bad time was when Joan brought George. She wanted to prove to him that
what the doctors were saying was wrong.
Julia just lay there.
"Julie!" Joan yelled. "Why are you doing this to me?"
Sometimes it was because she was tense and could not help it; she simply was
not able to move. Other times, trying just did not seem to be worth it
anymore. Doctors, she concluded, hopelessly, are "geniuses with a degree. .
. . Doctors say no, and no it is."
There seemed to be no use. She was locked in. To make it less painful, she
began to lock the world out. Gradually but certainly, she turned inward,
into her own world and into herself. It was not pleasant, but this was far
better than straining, clutching and grasping for a world that she could not
Inside, she had a lot of memories: a high school senior, and how he had
taken her out in his green Packard; her first husband, and how he had
rejected their baby, and how the little girl was born dead; her affair with
the married man, and how she had felt guilty and ended it. Mostly she
remembered Judy. She called to mind every room back home and what she had
done with Judy in each of them: how she had fed her in the kitchen, played
with her and rocked her and comforted her in the living room, carried her to
the bedroom to change her.
How old was Judy now? Julia was shocked. How many birthdays had come and
gone? Nobody had brought Judy to visit in a long time, and Julia had lost
track of her age. What kind of games did she like? Were they the games that
Julia had played?
Who were her playmates? Was she living at home with George? Or was she
living with one of his brothers or sisters? Did she have her own toys?
Was she warm? Cold? Safe? Hurt?
At times her memories mingled with fantasies: George went to the country
club. While he was gone, she tampered with the shower and loosened the hot
water knob. He came home and showered. He could not turn off the hot water,
and he could not get out of the shower. He scalded himself half to death.
She put him to bed and finished him off by lacing his food with lye, a bit
at a time.
Her dreams were worse; they made each night the longest part of the day: Her
car broke down and she got out. People started chasing her, and suddenly she
was flying. She was on her way to Mexico for her divorce, and she heard a
baby cry, and the baby would not stop, and all she could hear was the baby
weeping and weeping. And then she was dressing Judy, all in white. She put
her in a baby carriage and wheeled her out the front door. Suddenly they got
lost. Then she lost Judy. Somewhere she could hear her screaming, but she
could not find her.
Julia woke up in tears. She cried out. Finally a nurse came. Julia could
sense that the nurse thought she was crazy.
Most nurses treated her as if she were not there. They rarely tied her
hospital gowns; she would not know. Sometimes they did not wash her very
well or comb her hair; she would not care. They piled things helter-skelter
on her tray table, or they took the table and her chair for someone else;
she would never miss them. It made her suspicious, frightened, even angry.
No one asked her before they did anything to her, even for her. It
dehumanized her, denied her existence as a person, made her feel worthless,
"like," she thought, "a dead washcloth."
Mental and physical pain were a wedded pair. Her limbs cramped. She
developed phlebitis. She grew so thin that sometimes it hurt just to be
touched. But she could not tell anyone. She lay with her eyes closed, and
she cried. Bedsores covered her back, hips and legs. When they hurt badly
enough, she screamed. It made her sound insane. She was easy to dismiss; if
she was not aware, then what did it matter if she hurt?
One day, a new nurse stopped at Julia's bed and said hello. Another nurse
overheard and told her that she was wasting her time.
It hit Julia like a hidden hand.
For the first time, she came to the realization that she might be this way
This, she said to herself, is what it is like to be as good as dead. She was
like a clam, she thought, with a person inside.
"Why," she asked herself, "don't they just kill me?"
Maybe they would.
It scared her. She started to cry.
"Shut your big mouth up," one nurse said.
"Don't worry," added another. "You're going to be this way, Julia, until you
Inside, Julia erupted. She cursed. "Who are they," she demanded, "to tell me
how I am going to be?" The more she thought about it, the angrier she got.
She would fight like hell, she vowed. Somehow she would break through to
people. She would let them know that she was here.
She made a colossal, concentrated effort, her biggest yet. She shook her
head and she blinked, and she followed everyone nonstop with her eyes. She
howled. She cried. She screamed. She tried her best to move. One day, she
strained her midsection until she felt her abdomen knot, and she saw her
She did it every time she thought that someone might notice. She chuckled.
It was a little like saying, "Kiss my ass."
One morning, she opened her mouth to scream, and it occurred to her that she
might be able to bite. When a nurse came in to clean her teeth, she tried
it. The nurse thrust a cotton swab into her mouth, along with two fingers.
Julia closed her mouth hard.
The nurse's eyes grew big. They turned red. She screamed and she jumped
"You bit me!" she yelled.
"No kidding," Julia said to herself, smugly.
Finally, she happened to remember how she had been nauseated once by a
newspaper story about a man who had killed his girlfriend. He had chopped
her up and eaten the pieces. It made Julia sick just to think about it.
It struck her: Maybe she could make herself vomit. She tried hard to recall
the whole article and all of its gory details.
So she added vomiting to her repertoire of biting and hip-bouncing and
head-shaking and blinking and howling and crying.
But nobody understood.
"Mad dog!" the nurses said. "Crazy!"
Julia grasped the implications. Never again would she be able to say
anything to anyone. Never again would she be able to touch anyone to comfort
them, or to love them. She would be alone the rest of her life. She was no
longer sure how old she was. Nearly 40, maybe. She knew she would never be
good company. Her clam shell was empty. She was less than human. She was
less than an animal; animals, at least, could communicate. In fact, she
seemed to be less even than a plant. Plants were fortunate; they had no need
More and more, she turned herself off. She heard, but sounds no longer
penetrated. She saw, but images no longer registered. Her anger faded, then
vanished. Her mind was dark. Quiet.
She felt numb.
"Why couldn't I have died?" she moaned, inside. "Why? Oh, why?"
She screamed out loud.
Her howling subsided. It took on a mordant tone.
Julia was keening.
"What did I do wrong?" she asked herself, over and over.
Why was God punishing her?
Because she had never finished high school? Because she had attacked her
first husband with a knife? Because her first baby had been born dead? Her
heart sank. She began to sob. Maybe God was right. Or maybe it was her
affair. Maybe she had done something wrong after she married George. She
thought and thought. Perhaps she had gotten pregnant too quickly. Was that
why God was punishing her? After all, a doctor had advised her to wait a
while longer after the stillbirth.
But Judy's birth had gone well, and now she was the sweetest little girl God
could want. Tears fell on Julia's cheeks like hot rivets. Inside she felt a
blunt pain. Day after day, over and over, she replayed her life like a movie
on a loop. Hour after hour, she examined everything she had ever done.
She tried to stop, but she found that it was like sex: Trying not to think
about it only brought it more to mind. She developed an acute sense of
guilt, but she did not know why.
What had she done?
"Would someone please answer me?" she pleaded.
But there was only silence.
She began to fear that she was going crazy.
How would she know?
Day and night, the loop of her life kept playing. She could not sleep.
Nights became days, and days became nights. Weeks blended into weeks. Then
Finally she no longer cared.
Nothing she had ever done, she decided, was bad enough to deserve this.
With that, the loop stopped.
Now her mind was blank. She was locked in. The entire world was locked out.
It was like death.
"I'll kill myself," she decided. But how? Could she stop breathing? One
evening, as the light faded in her windows, she shut her mouth. She tried to
tighten her throat and stiffen her diaphragm. But her muscles would not
work. Worse, because of her tracheotomy, air flowed freely in and out of the
hole in her throat.
"Get under my pillow," she said to herself. Maybe she could if she wiggled
her head. She wormed her face, inch by inch, under one side. The pillow
covered her forehead, then her eyes, finally her nose. She could smell old
hair, perspiration and tears. But part of the pillow stuck out over the edge
of her chin, and it missed her trach. If she maneuvered to cover her trach,
then she could not cover her nose or her mouth.
As Julia wondered what to do, a nurse noticed the pillow. She lifted it off.
"How dumb!" the nurse said.
Two more times Julia tried. Two more times nurses lifted off the pillow. It
did not occur to any of them that Julia might be doing this deliberately.
That would have meant she was cognitive.
Maybe, Julia thought, she could drown herself. She fantasized about it. When
nurses bathed her, two of them put her on a gurney and took her into a
shower room. One sprayed her, and the other held her and washed her. Usually
they covered her trach with a towel, but sometimes they forgot. If she could
move her head just enough, maybe she could catch some spray in the hole.
She tried. She tried again. One day, she finally did it. She felt water
trickle down inside her throat. But she coughed and gagged. Reflexively, she
spit the water back up and out.
The nurse with the spray moved it. The other nurse shouted. The first nurse
shouted back. Each blamed the other for leaving Julia's throat uncovered.
Two weeks later, Julia got another chance. But she coughed and gagged and
Nineteen more times she tried. Then she gave up.
Life was like an unloved guest; it simply would not leave. Julia could not
even kill herself.
It was God's fault.
But she refused to acknowledge his existence.
God? There was none.
Perhaps it was night, maybe day. As usual, she could not be sure. She was
falling asleep. As she closed her eyes, she saw a light. It was blue and
In the light, she saw her grandmother's face. At times, before she died,
Nana had worn a babushka, and she was wearing one now. It was knotted
carefully under her chin. She looked serene.
Julia saw a smile in her eyes.
"Come, Julie," she said.
Her voice was high. It sounded musical.
Julia did not reply. She knew that Nana understood. Nana always understood.
She knew that Nana loved her, and she knew that she always had.
Julia wanted to go to her. It made her eager, impatient. Nana was from coal
country, and Julia remembered an accident in a mine. Men had died. She
wanted to go to the coal shaft.
She wanted to die.
She tried to reach for Nana, but she could not move.
Nana's face faded.
Julia slipped off to sleep. When she woke, it was dark. She tried hard to
bring Nana back.
But she could not.
Julia had no radio. She had no TV. Time crawled by. Nothing ever seemed to
start, and nothing seemed to end.
One medical report says about a year passed. Another says it was nine years
in all. A member of Julia's family says a year. Another says three years.
Still others say six. Julia's psychologist agrees with six. So do others on
the hospital staff at the time. Significantly, so does Julia.
During those years, her sister Joan won some important skirmishes in her
fight to convince people that Julia was cognizant. Julia began to get more
attention. One day a trio of nurses hoisted her with a mechanical lifter and
lowered her into an old wooden wheelchair. Julia was too stiff to bend. She
screamed. She tried hard to shake her head, but they lowered her anyway.
Her spine touched first. White-hot pain shot down her back. Bedsores burned
on her hips. Her bones felt ready to crack. If only the pain would kill her.
She gasped for air. She screamed with every breath. If she could stiffen her
back, it might not break, and it might take weight off the bedsores. She
strained. She felt herself flatten out, and she slid down in the chair,
almost to the floor.
Two of the nurses pulled her back up. The third fetched an armload of
sheets. She twisted one to make a rope, and she tried to tie Julia into the
Deep inside Julia's shell of despair, there was still a flicker of fury.
She screamed. She strained. She flattened out, and she slid back down again.
The nurses pulled her up. They tied her with another sheet. Again Julia
screamed, and again she strained, and again she slid back down.
It took six sheets. Finally she could not move. The nurses pushed her out
into the hall. She sat there, lashed into the wheelchair, screaming. Other
patients rolled past. Some stopped to look. Julia did not look back. All she
saw was a red haze of rage. She had been put on display. She felt like a
Three times a week, tied in with sheets, she was wheeled to Occupational
Therapy, where a worker tried to configure a metal wheelchair to make her
comfortable. Then one morning, possibly in the mid-1970s, it happened.
Recollections are never perfect, and the explanation is a mystery. Perhaps
it was because more doctors were taking Joan seriously, or because a
therapist had been assigned to scout the wards for people like Julia, or
both. Whatever the reason, a young woman walked into Julia's room.
She had a wide smile. Her hair was long. She parted it in the middle. She
was only 5 foot 8, but she was so slim that she looked taller. She wore a
print skirt and a blouse. When she looked down at Julia, lying there in bed,
she realized that she had never seen anyone so paralyzed. She did not know
whether Julia could hear, but she spoke anyway.
"Hi, Mrs. Televaro," she said, mispronouncing her name. Then she apologized.
She repeated the name, and this time she got it right. "I'm Arlene Kraat
from speech therapy," she said. Her voice was soft. She spoke slowly. "We're
going to see if you can talk."
Julia had retreated so deeply into herself that it took a while for her to
notice that Arlene was even there. Gradually she recognized her. Julia had
seen her before, walking down the hall, but she had never come in. Now she
was there, standing at Julia's bed, talking to her as if she could
comprehend every word.
Julia was stunned.
She sensed the flutter of an old feeling. Was she human after all? Despite
the time that had passed, despite all of her despair and despite the
likelihood that her hope would be dashed yet again, Julia clutched at the
feeling. Slowly, uneasily, she brought her gaze up to Arlene's face and
looked into her eyes.
Arlene noticed. It was just what she had been searching for: She saw Julia's
"Can you close your eyes?" Arlene asked.
"Can you blink two times?"
With that, Arlene knew: Julia could understand.
Could she express herself?
Quietly, hopefully, Arlene asked, "What is the first letter of your name?"
She began reciting the alphabet.
When she got to J, Julia blinked.
In that instant, Arlene Kraat, habitually dismissive of the common wisdom
and characteristically defiant of failure, accepted an unspoken challenge.
She could not walk away from this. For her, it was not even a question.
Julia felt it.
She allowed a small ray of hope to warm her heart.
"Open wide," Arlene said.
With a tiny flashlight, she looked into Julia's mouth. Tenderly, she placed
both hands on Julia's throat.
Her hands felt warm, soft and unhurried.
"Try to say hello."
Julia strained so hard it hurt.
Gently, Arlene felt the front and sides of her neck. She moved slowly and
carefully. Then she wrote on a clipboard.
"Try to say hi."
Julia strained again.
Arlene wrote some more. Julia was thunderstruck. Arlene was taking her
seriously. She felt like she was sitting on a star.
But then she drew back. How much did she dare to hope? Part of her became
afraid. What if this went nowhere? It would hurt. She feared the mental
pain. It was like falling off the star.
"Well," Arlene said at last. "We are going to get you to talk."
That was reassurring. For the moment, at least, some of Julia's doubts
vanished, and so did some of her fears. She gave a tiny smile.
Arlene smiled back.
Perhaps, she added, the feeding tube could come out. How would Julia like to
Julia hardly heard the question. She sensed contentment and peace. It was
the first time she had felt like this in years.
Suddenly she was overwhelmed.
"I'll see you in OT," Arlene said and walked out.
She stopped for a minute in the hall. Julia overheard her tell a doctor and
then a nurse that Julia was fully aware.
They did not believe her, Julia could tell.
All of her doubts returned, and with a vengeance. Had Arlene meant what she
said? Or was she trying to be nice? Maybe Julia misunderstood her?
The test came only a few days later. An orderly wheeled Julia to OT, and
Arlene was waiting. She put a hand on Julia's shoulder. Another woman joined
them. Her name was Joyce Sabari. She had black hair and dark eyes. She wore
dark slacks and a blouse. Together, she and Arlene reminded Julia of Mutt
and Jeff, the short and tall characters in a comic strip.
As Joyce watched, Arlene took Julia's face in her hands. Slowly and gently,
she nodded Julia's head. It moved about four inches. Then, just as gently,
Arlene moved Julia's head from side to side. It moved another four inches.
"Now," Arlene urged softly, "do it yourself."
Julia thought she saw an anxious look. This was it, she thought. This was
the time to resolve any doubts that Arlene might have, and this was the time
to resolve her own doubts. She might never get another chance.
Straining, uncertainly, Julia raised her head. Reflexively, she lifted her
eyes until she found herself looking nearly straight up. Then, just as
slowly and tentatively, she lowered her head.
From top to bottom, at least four inches, she figured.
Now she moved her head to the right. It was difficult. She moved it some
more. About four inches, she figured, proudly.
Back to the center, and now to the left. That was even harder. Her head
budged about an inch.
Was it enough? Had she done it?
Arlene's eyes were large, bright and smiling.
"Wonderful!" she said.
Julia's face pinched. A tear rolled slowly down alongside her nose. Finally
she surrendered to boundless and irrpressible gratitude. A flood of tears
covered her cheeks and fell across her smile like rain in the sun.
Arlene! she said thankfully to herself, sobbing. Then Julia added two words
that she had thought she would never use again. "A godsend."
"Look!" Arlene said, suddenly. "Here come your parents!" She pointed to the
left. Julia turned her head all the way and looked. There was nobody.
For a moment, Julia felt hurt. Could Arlene be making fun of her? Why?
"Look at that man!" Now Arlene pointed to the right.
Julia turned her head. Nobody.
Arlene beamed. She put a gentle hand on Julia's shoulder.
"Good," she said softly.
Now Joyce was smiling, too. She would join Arlene in this challenge. With
her trick, Arlene had proven to everyone, including Julia, that she could
move her head even without deliberation. Julia's doubts disappeared, this
time for good.
The next day, at Arlene's request, an aide arrived in Julia's room with a
sign. It was hand-printed in block letters on a big sheet of colored paper.
She taped it over Julia's bed.
The sign said:
JULIA UNDERSTANDS EVERYTHING.
That discovery and Julia Tavalaro's response saved her.
Arlene and Joyce taught her to use her head motion to operate devices that
let her express herself and get around. They brought years of patience to
the task, along with a rebellious disregard for naysayers. Julia, for her
part, brought eagerness and unflagging persistence. Little by little,
everyone realized that the sign over Julia's bed was right. Today she writes
on a computer. She presses a switch with her cheek to run it. She rolls
around in an electric wheelchair. She presses a switch with her chin to
drive it. She goes wherever the wheelchair will take her, and she says, with
little inhibition, whatever she wants to say, to anyone and everyone. To
talk, she uses a card with the alphabet printed on it in rows. Her visitors
move a pencil down the card, pointing to each row of letters, one by one.
When they reach the row containing the first letter in the first word of
whatever she wants to say, she raises her eyes. Then her visitors point to
each letter in the row. When they reach the right letter, she raises her
Her computer scans an alphabet grid and prints out the letters she chooses.
In her writing, Julia is so vivid and so expressive that she has become an
accomplished poet. She attends a creative writing workshop for patients,
sponsored at the hospital by New York University. Her work has been read
publicly at New York University, together with the work of such poets as
Yevgeny Yevtushenko and Sharon Olds. Julia and an editor, Richard Tayson,
are preparing her book of poems and memoirs to be published next year by
She is still paralyzed. Her arms are contracted into fetal curls, and her
legs are hyperextended in front of her. She is thin. She has recurrent bouts
with pneumonia. The hospital refuses to let her doctors talk about her, but
Dr. Jeffrey Saver, a neurologist at the UCLA School of Medicine, who
analyzed data from her records, says that pneumonia can be a significant
threat to someone with her inability to avoid aspiration.
Twice she has slipped out of mechanical lifters all the way to the floor,
and once she broke two leg bones in a wheelchair wreck. "I was spinning in 2
wall," she says on her letter board. "It kept spinning until they shut it
She hates to be reminded of what it was like to be locked in. She demands
that nurses dress her each day, for instance, in a color-coordinated outfit
that she chooses from her locker. It bothers her when they do not comb her
hair, when they do not keep her bedside neat, when they do not use her
letter board, when they do not position her well and when they decide things
for her or take her belongings without asking. Such things stir a fear in
her of being locked in again. They are, she says on her letter board, "a
She is quick with thanks, but she can be blunt. Nurses who mistreat her are
"bitches" or "vultures" or worse, especially those who are so rough that
they bruise her. She particularly dislikes one nurse whom she accuses of
stuffing a pillowcase into her mouth to shut her up. She still howls,
snarls, bites and bounces her hips to tell them to "kiss my ass." She
protests to hospital administrators, state health officials and even the
mayor. If she is ignored, she parks her wheelchair in an administrator's
doorway and refuses to move.
Julia "can be difficult," says Lily Tu, director of nursing. But Rima
El-Asmar, assistant director of patient relations, says her complaints "are
She guards her independence. Wherever she goes, she carries a sign that
says: "Please don't push my wheelchair. I could move myself. Thank you." But
Julia is hardly grim. She laughs easily. Her humor can be wry,
self-deprecating, teasing, slapstick, sarcastic and risque. She keeps a
calendar of male strippers on her clothes locker. Not long ago, she and a
favorite nurse got into a discussion about sex. A few days later, with the
help of an accomplice, Julia presented the nurse with a box of multicolored
condoms. One of them glowed in the dark.
Twice friends have smuggled in vodka and Collins mix to make her favorite
drink. Once she even played the ponies. A member of the hospital staff
brought her the Racing Form. He read it to her, and she picked her
favorites. He placed her bets. All her horses lost, but she loved it.
Her relationship with George is in tatters. He had not taken her wedding
ring; its disappearance is a mystery. Nor did he bring any rich women home
from the country club. In fact, he moved back in with his own family, and
they helped him raise Judy, who is now married and a mother herself. Her
relationship with Julia is still painful. George and Judy see Julia only
rarely. Julia says George has abandoned her. He denies it. At one point,
they talked about divorcing, but then Julia suffered an attack of pneumonia,
and neither of them pursued it.
Julia's dream is to afford private nursing and an apartment of her own. She
is now 60. To many people, such a dream at her age and by someone with her
limitations might seem foolish.
But Dr. Jim Crawford, chief hospital psychologist and Julia's therapist for
17 years, cautions that betting against her is never very wise. Being
imprisoned the way she was would make most people psychotic, he says. "Other
people, I think, give up and die.
"Julia didn't give up. . . . She was depressed, but at the same time, I
think her anger helped. Now, where this spirit and this will to live came
from, I really do not know. . . . That is what is so unique about her. She
just simply didn't give up."
Why didn't she give up? Tucked among her poems, many about death, is one to
a friend. It talks about life.
Life, Julia writes, is a precious shell.
you can hold on for as long as you can.
Remember it is only a shell.
It is only a shell
which holds the powerful mind.
It says you can do anything.
Where where out there
I lear a voice
laughing and giggling
it might be her
where where out there
I hear a voice
it might be her
sun and tears
what out there
might be rain
might be the sun
might be her
oh what have the dreams
I presume it meant happiness.
My ugliness is more like it.
Hayfield In The Ocean
I dreamed there was a hayfield
In the ocean
Looked at the full moon
Why oh why oh why
Do I see this imaginary
Tunnel! Has dark morbid clouds
With hands sprawling
Into the golden wheatfield.
Out: the cool waters! of green
Ocean. Seagulls flew
above, my regret
Wheatfield, my ocean so
hard to forget.
A Modern Concentration Camp
Yes, this is it.
When the name is mentioned
we throw a fit.
In this hospital -- ugh, no --
Please do not let me be
Tortured in another way:
Only is the way to Heaven
a good pay.
Here I lie in my bed
Just as if I were dead.
Hoping wishing Hallelujah praying
That my last breath will be my next.
When I awoke
I was still in the same old hoax.
My body was the same:
Wanting to move.
I had no voice, only a hole for breathing.
Tubes on all parts of me
Of The End.