| Road to recovery
10.28.03
By FELICE J. FREYER
Journal Medical Writer
The question weighed heavily: How would Gina Gauvin cope?
Unconscious for weeks at the UMass Memorial Medical Center, in
Worcester, she would awaken soon to find that she had scars all
over her body, and that her hair, her ear and her dominant hand
were gone.
Doctors always worry, says Dr. Janice Lalikos, when people are
so badly hurt that they survive only with disabilities or disfigurement.
"Even if we've saved them," says Lalikos, who treated Gauvin
after she was burned in The Station fire on Feb. 20, "we're afraid
that emotionally and psychologically they'll be so devastated,
you start to wonder. . . ." She pauses. The fear, she says, is
that a patient with such severe injuries will be "completely despondent
and never come to any productive life."
Burn survivors bear multiple burdens -- horrifying memories of
the fire, severe pain, disfiguring scars and sometimes missing
limbs. Nothing will ever be the same.
Many suffer from anxiety and nightmares. Some become irritable
and hostile, others depressed and withdrawn. People for whom appearance
is central to self-esteem, it is said, tend to have a harder time
recovering. And Gauvin had always been someone who turned heads.
Still, though experts can prognosticate, ultimately the human
spirit remains a mystery. Sometimes it collapses and sometimes
it rises up, and no one really knows why.
In early April, about five weeks after the fire, doctors began
to reduce the medication that was keeping Gauvin unconscious,
and to wean her from the ventilator -- turning it off so she could
breathe on her own for increasing periods of time.
Everyone worried about her awakening. Everyone but her elder
daughter. Heather Gauvin, 18, says she knew -- she always knew
-- how her mother would take it.
THERE WAS no sudden awakening, no moment of revelation. It was
a process: lucid times followed by sleep, followed by confusion
and forgetfulness. And then more sleep.
Her two sisters would visit her, chat briefly and return to find
that Gauvin had no recollection of the visit. Her caregivers introduced
themselves time and time again.
She struggled to speak, frustrated. Even when the ventilator
was not on, air entered her lungs through the hole below her voice
box, so she could produce no sound. Eventually, a plastic cap
was placed over the hole, and a few days later she began whispering
through swollen vocal cords.
She asked why people were visiting her when she was only going
to die.
She asked for iced coffee from Dunkin' Donuts.
This is how her sister Denise Agin remembers those days: "The
doctors sat down with her . . . and said, 'You were in a fire
and we had to make some changes to your body.' Gina said, 'My
legs -- am I able to walk?' I said, 'Yeah, you'll be fine. You
can walk.'
"When she first started waking up, she always had tears in her
eyes. She said, 'I can't feel my hand.' She kept trying to lift
the left one.
"One day we were in the hospital. She was laying in the bed.
Renee [their sister] was there. We were talking about something
-- rehab. She said she knew she had to make changes. She lifted
her hand. 'I don't have a hand.' Then she started crying."
But mostly, she didn't cry.
"She's very high-spirited," says Kathy Gaffney, a UMass nurse
who was close to Gauvin. "She's never been down in the dumps,
never been moody or grouchy. Nothing. It's surprising. She said
she's lucky to be alive, and that's how she felt. Once she woke
up and the confusion cleared, we finally told her [about her hand].
She didn't cry. She said she'd have to make do with what she had."
As the fog of drugs cleared, Gina Gauvin realized that she was
not going to die. To her astonishment, she had survived. She was
alive.
And for her, that was good enough.
HER DOCTORS were amazed. Dr. Gary Fudem, leader of her treatment
team, says most patients are "crying, screaming, moaning" when
they gain consciousness, but Gauvin: "Right away, she was fine."
Lalikos attributes it to her family support, and to the fact
that she grew up without many luxuries. "It's not like she's had
a life at a breeze up until now."
But then she gives up trying to explain it: "I don't know where
she learned it. She must have a true love of life that's going
to rise above this.
"Then the other thing we were all thinking," Lalikos adds, "is,
when is she going to crash? When is she going to have a breakdown?
It's just the nature of this tragedy. How strong can any person
be?"
Throughout April, Gauvin got stronger and stronger, and the hospital
began planning for her discharge to a rehabilitation hospital.
For a year or two after a burn, survivors have to fight with
their skin to maintain flexibility, constantly moistening, stretching
and exercising their limbs. Often they need to return to the hospital
for more grafts or other surgery -- because scar tissue tightens
and constricts. If you have a cut, the resulting scar's tightening
helps pull together the healthy skin on each side of the wound.
But when you have vast areas of scar tissue, this constricting
can lead to immobility. Without proper care, a thumb can fuse
uselessly to the palm, an arm can become clamped to the side.
As it heals, scar tissue also has a tendency to pile on cells
so that it gets thick and bumpy. Elastic garments that compress
the skin can smooth out the bumps. Gauvin would eventually have
to don a complete body suit to squeeze the scars on her arms,
torso and legs.
Back from the brink.
The end of April neared, and Gauvin was done with surgery for
now, her wounds healing. Throughout her stay at UMass, the staff
had worked on moving her limbs to maintain their flexibility.
But now the scar tissue needed more work, and it was time for
Gauvin to start building up her strength and getting back on her
feet.
Paul Savoie was elated. As the physician assistant specializing
in burns, he had participated in every procedure performed on
Gauvin, helped rebuild her skin in the operating room and sustain
it in the burn ward, shepherded her from the agonies of the spray
table to the jokes about tattoos. Now he could see the result.
This is why he does this delicate, grueling work: to bring patients
back from the brink and make them well enough to move on.
Asked when Gauvin had progressed to the point that he didn't
fear for her life, Savoie said, "The day she left."
The day she left was April 29. On that day, seven Station fire
victims were still in acute-care hospitals: six at Massachusetts
General Hospital and one at Rhode Island Hospital. At Mass. General,
Pamela Gruttadauria, of Johnston, and Joseph Kinan, of Canton,
Mass., were still listed in critical condition. Gruttadauria would
die five days later, the 100th victim of the fire.
NEARLY A month after she arrived at the Rehabilitation Hospital
of Rhode Island, in North Smithfield, Gina Gauvin gave her first
interview.
She was lying in her bed, in a spacious, single room, with her
younger sister, Renee Walton, sitting at her side.
The walls were festooned with cards from well-wishers. Posters
propped up by the picture window displayed snapshots of Gauvin
hugging her children, or "clubbing" with her friends. In one she
holds her son, then a toddler, and her astonishing red hair is
hanging down her back. Several pictures were from a Halloween
party at J.R.'s Fastlane several years ago; she is dressed seductively
as a black widow spider.
From her hospital bed, Gauvin greeted a visitor in a casual,
friendly way, as if nothing bothered her. "Hi," she said, stretching
out the vowel.
Her raw-looking cheeks were speckled with purple scabs. Her left
ear was a shred of flesh. A half-inch-long tuft of red frizzy
hair stuck out near her forehead. Shiny, stretched-looking scar
tissue covered the side of her head.
Her arms lay still at her sides, bandaged. At first glance it
looked like she had unusually short arms. Then it became clear
that her left arm ended before her wrist. The right arm bore a
splint supporting a shrunken right hand, whose fingers had been
amputated down to the first joint. The V-neck of her PJs showed
a badly scarred chest.
In a calm, pleasant voice, barely moving throughout the conversation,
she described what had happened to her. When she said that she
had been burned "from head to toe," her sister jokingly chided
her for exaggerating: the burns extended only to her ankles.
"I've always been optimistic," Gauvin said. "It's the only thing
I always kept in my mind: I'm glad I got out of it alive. . .
. It's depressing, the injuries and all. Then I think, at least
I'm here."
"As soon as she started talking," Walton interjected, "she was
saying 'I'm glad to be alive.' "
"I don't like people who are down," Gauvin said. "There were
times when I'd think about it a little. I refuse to be depressed
by it. I'd rather just think about, I'm really glad that I'm alive.
There wasn't much chance of me surviving in the beginning."
Asked about the day she was told that she'd lost her hand, Gauvin
said, "I pretty much knew it. I was like, 'Yeah, I noticed.' "
At the rehab hospital, she explained, she had a rigorous schedule,
mornings devoted to occupational therapy on her upper body, done
sitting down, and afternoons spent at physical therapy helping
her to re-learn how to walk.
She had arrived bedbound, her legs injured by burns and grafting
and weakened from months of immobility. Lying in bed causes the
toes to point forward, so it was hard for her to put her feet
flat on the ground. She had teetered backward the first time she
tried to stand, steadied by two therapists holding a belt around
her waist.
Now, a month later, Gauvin said she had just taken a few steps.
"I can walk now," she declared.
GAUVIN HAD BEEN one of the neediest patients to arrive at the
Rehabilitation Hospital of Rhode Island. She could do little for
herself. She still had dressings over much of her body and wounds
that had to be monitored for infection. She needed medication
for pain.
The rehab hospital cared for six survivors of The Station fire,
a mammoth responsibility for a place that usually treats stroke
victims and people recovering from hip replacements or other orthopedic
surgeries.
"A lot of us had never seen burn victims, with massive and severe
burns," says Nancy A. Stejbach, the hospital's social-work coordinator.
"It's something we pray we never see again."
To prepare, the nurses and therapists had made a pilgrimage to
Mass. General, which had treated 16 victims of The Station fire.
They saw films and slides of the surgeries performed and learned
more about the patients' needs.
The staff tried to think of everything. They covered the mirror
in the gym in case the patients weren't ready to see their reflections.
They ordered the ointments and dressings that burned skin requires,
and devices to help joint movement.
But when the patients started arriving, Stejbach says, "Within
a half-hour, some of the people said, 'Are you going to do a fire
drill?' We didn't think of that!"
The staff scrambled to factor the fire victims' fears into their
drill plans. Patients were told ahead of time when a drill would
occur, and whenever possible a staff member stayed with them in
their room throughout. They also showed every Station fire survivor
where all the fire exits were.
THE MAIN JOB of the rehab staff is to teach and foster independence
-- with prodding that is sometimes gentle, sometimes quite insistent.
Before Gauvin could walk, physical therapist Caryn Tobiasz exercised
her legs in bed, pressing her hand on the bottom of Gauvin's foot,
pushing the toes back, stretching. Pain was the major obstacle.
Gauvin's skin was tight and tender, and Tobiasz was pushing hard
to stretch it -- explaining, even as she inflicted pain, that
the goal was to make Gauvin able to go home.
"She definitely expressed the pain," Tobiasz says. "It wasn't
that she didn't want to. She wanted those outcomes really badly.
It was the pain she couldn't manage.
"I never found her to be anxious or upset or angry. She always
had that positive mentality. 'Well, I survived.' . . . She was
an amazing, amazing lady to work with."
Tobiasz worked with her on stretching and standing, progressing
to walking a few steps in her room, then all the way to the door,
then down the corridor, and finally into the gym.
Tobiasz was wary about going to the gym, because there were always
other people there and Gauvin's injuries were striking. But Gauvin
didn't hesitate. "I was shocked about how positive she was, how
much that didn't bother her," Tobiasz recalls. "I remember asking,
'Do you want a hat?' And she said, 'No, I'm fine. I don't care
if people see me.' "
Day after day, Gauvin walked up and down a small stairway to
nowhere. She rode the exercise bike. She kicked a big red ball
with her knee, bopped a balloon with the ends of her arms. Standing
at a bar, she did knee bends, lunges, squats and leg lifts, all
in dancelike unison with Tobiasz. Inch by inch, she got stronger
and more flexible.
While Tobiasz worked her lower body, Stephen Cammuso, her occupational
therapist, worked on her arms and back, first with flexibility
exercises in the chair, then focusing on everyday functioning:
how to open doors, how to put on a shirt.
Cammuso relished the challenge. He had started working as an
occupational therapist only in January. To have a patient like
Gauvin at any time in one's career would be a privilege, he says,
but he found her in his first few months on the job.
"She's been astonishing," Cammuso says. "She's a gift."
They tackled problems together. She would resist what he proposed,
then try it, then master it or maybe propose something else, in
a give-and-take that Cammuso found exhilarating.
"The first time I said, 'You can cut your food,' she said, 'You're
crazy.' In five minutes she was doing it" -- with a blade that
Cammuso had taped onto a plastic wrist cuff.
Cammuso stayed up late at night reading textbooks and dreaming
up ideas for Gauvin. He decided that she had to have little tabs
with buttons sewn onto her socks to enable her to put them on.
Gauvin, instead, showed him that she could put them on simply
by throwing the socks on the floor and wriggling into them.
Cammuso determined that Gauvin needed sneakers with Velcro closures.
Nothing doing, Gauvin said. She had already set her sights on
blue Adidas sneakers exactly like those worn by her physical therapist,
and her sister Renee Walton bought them for her. Cammuso regrouped,
and came back with a pair of elastic laces that tied behind the
tongues, turning the Adidases into slip-ons.
ONE WEEK after her first interview, Gauvin was sitting in a wheelchair,
wearing a white sailor's cap with blue flowers appliquéd
on the turned-up rim. She looked much changed from the previous
week -- sitting tall, she seemed strong and full of energy, bantering
with her sister, mother and daughter, who had come for a family
meeting.
Her short left arm dangled, trembling. She asked for a pillow
to support it, and her sister Renee slipped one under.
When did she first look at herself? Gauvin said about two weeks
after she woke she asked for a mirror. Many burn victims wait
weeks or months before surveying the damage, but Gauvin wanted
to know right away. She described her reaction: "I didn't look
too great. I knew I wasn't winning any beauty contests."
Gauvin happily recounted her latest accomplishments: "I rode
the bike for five minutes straight.
"I'm walking up and down the steps now, with one person."
And one week after that, on June 10, she had more progress to
report: "I'm getting myself dressed now, putting my pants and
shirt on, washing myself.
"Yesterday, I opened a bottle of soda. I put the bottle between
my legs and twisted. I opened my closet door, got dressed and
tied a bow in my pants.
"I honestly didn't think I would get that far," she said. "Every
time I'm going to learn something, I say, 'I don't think I can
do that,' and they teach me."
Tara Grocki, a recreational therapist, entered the room and rolled
the bedside table in front of Gauvin's wheelchair. She put a plastic
cuff on Gauvin's right wrist, and stuck a paintbrush in a socket
in the cuff, at right angles to her wrist. She opened a box of
small paint tubes and propped up a sketch pad.
Gauvin -- a left-handed artist with no left hand -- was about
to paint.
"All right," she said, businesslike. "I want some burnt sienna."
Grocki squeezed a brown blob onto a plastic tray. Gauvin dipped
the paintbrush and drew a straight line across the paper.
When Grocki had first suggested painting, Gauvin had declared
it impossible. Grocki bought the paints anyway. Before long, Gauvin
had produced a painting of a tiger, better than many people with
hands could do. She gave the tiger to Kathy Gaffney, one of her
nurses at UMass, when she went there for a checkup.
Amazing inner strength
"This is something I've always done by myself," Gauvin said,
slowly filling in the background behind a vase of flowers. Years
ago, she had taken art classes at Rhode Island College. Now, she
continued, matter-of-factly, "it's definitely harder. I'm not
as good as I used to be. I had a lot more detail. . . . I used
to spend a month on a lizard."
"You never say that you're frustrated," Grocki remarked.
As she worked, Gauvin chatted about her family, how close they'd
become since the fire, how hard the disaster had been on 18-year-old
Heather.
Heather had written her mother a letter, and asked Nancy Stejbach,
the social worker, to read it to her. "I thought," said Gauvin,
" 'Oh my God, please don't let her be pregnant.' . . . What could
it be that she's got to give it to someone else to read to me?"
No, Heather was not pregnant. She had written to say that she
had never realized how much she loved and needed her mother.
Gina Gauvin didn't mention this part, but Stejbach said later
that Heather's letter had made her mother cry. Throughout Gauvin's
two months in rehab -- throughout all her pain and struggle --
this was the only time that Stejbach saw tears.
There were times, Stejbach admits, when Gauvin's attitude started
to worry the staff. "We were concerned that she was too upbeat,"
Stejbach says. But Gauvin's relatives assured them that she had
always had a positive outlook.
"Wherever she gets it from," says Stejbach, "I wish she could
bottle it. She has amazing inner strength."
SHAYNA, Gauvin's 7-year-old, first came to visit on Easter, and
Joseph, 5, made his first trip on Mother's Day. Both were shy
at first, but quickly warmed up. Their subsequent regular visits
only increased Gauvin's yearning to be home with them.
"Shayna's really helpful," Gauvin said one day in June. "She's
pouring my drinks, putting my lip gloss on. She told me she's
going to do the dishes. She's very eager to be a big girl and
help out.
"I'm kind of like everybody's caretaker," she said. "I'm always
taking care of somebody. Now, people are taking care of me. .
. .
"I want to go home. I feel like I'm not living up to my responsibilities."
If you asked the staff at the Rehabilitation Hospital of Rhode
Island, they would tell you that Gauvin was on her way home from
the day she arrived. Going home was, after all, the point. Eventually,
says social worker Stejbach, the hospital has done all it can,
and the patient must take it forward on her own.
So as July approached, Gauvin's journey accelerated. She started
on the homestretch by going there -- a reconnaissance visit to
her Johnston apartment. She made the trip with her mother and
Heather, accompanied by therapists Caryn Tobiasz and Stephen Cammuso.
The therapists measured the steepness of the front steps, noted
that her refrigerator lacked a door handle. Gauvin, for her part,
lay down on her old bed and said that she didn't want to leave.
She hadn't been home since the February night when she picked
out her clothes for the Great White concert.
"I walked in and I was like, 'Wow, this apartment looks nice.'
" Gauvin recalled a few days later. "When I lived there I was
always thinking about how dull and dreary it was. You see it with
new eyes."
On another day, Gauvin went out to eat for the first time, lunching
with two therapists at the Roast House restaurant next door to
the hospital. With her utensils inserted in a cuff on her wrist,
she managed everything but getting the paper wrapping off a straw.
And then, the ultimate: Gauvin went shopping. Carrying an umbrella
to protect Gauvin's skin from the sun, Tara Grocki, the recreational
therapist, and a physical-therapy student walked with Gauvin from
the rehab hospital to Ocean State Job Lot. Grabbing a shopping
cart, Gauvin was immediately in her element, choosing gifts for
her children and her niece and art and household supplies for
herself, driven by a shopper's joyful hunger -- for bargains,
for stuff.
No one stared at Gauvin. Some people did brief double takes behind
her back, and then resumed shopping.
The manager, wondering why a newspaper photographer was in his
store, stopped to find out what was going on. Gauvin cheerily
assured him that she was telling the media how much she loved
to shop at Job Lot, and explained that she was practicing to leave
the rehab hospital up the street. "What happened to you?" the
manager finally asked, surveying her injuries.
"I was in The Station fire," she replied. He wished her good
luck, and left.
At the checkout counter, Gauvin asked Grocki to unzip her purse.
Always pushing her toward independence, Grocki balked, saying,
"What would you do if I weren't here?"
"I'd ask him to do it," Gauvin said, gesturing to the clerk.
The logic was inescapable. Grocki opened the purse.
Gauvin had just under $60 to spend. Counting out bills and coins
with the bandaged stubs of her fingers, she kept asking for subtotals
of her purchases, to see if she had enough money. At her request,
the clerk patiently deducted some items, and then added some back,
trying again and again to come out with an acceptable total. Behind
her in line a burly man with earrings, holding a set of ankle
weights, watched the transaction without a trace of annoyance.
Now Grocki and the student traded their brown-and-tan umbrella
for the rainbow-colored one that Gauvin had just bought, and carrying
her bags of merchandise, accompanied her as she walked back up
the hill to the hospital.
Tomorrow:
Gina Gauvin goes home.
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