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July 25, 2002, 5:53PM
Life after polio
For it's toughest survivors, polio hasn't run its course
By JEANNIE KEVER
Copyright 2002 Houston Chronicle
In the America of the early 1950s, Nita Weil had it all. She was 21
and beginning a modeling career in New Orleans, happily married, the
mother of 16-month-old twins.
Protected by the invulnerability of youth, she found it easy
to dismiss a fleeting premonition in May 1952.
Weil and her husband, Bill, met his parents for dinner at Antoine's,
as they did every weekend. On their way home, he leaned toward her in
the car.
"You look so beautiful."
A chill enveloped her. "I'm so happy," she told him. "I have so much,
and I'm afraid someone is going to take it away from me."
A month later she would be trapped inside a sweltering metal chamber,
breathing only through the grace of an iron lung.
More than 20 years have passed since the last U.S. case of polio, and
its defeat worldwide seems within our grasp. But for hundreds of
thousands of survivors, polio never left. And for some, a long-forgotten
foe is back in force.
Polio stalked American cities for decades, peaking in 1952. Swimming
pools and movie theaters were closed. Children were kept indoors, and
those who contracted the virus were quarantined. Thousands died.
In that atmosphere of national crisis, pediatricians such as Carlos
Vallbona, then a young medical resident at the University of Louisville
in Kentucky, increasingly focused on polio patients of all ages.
Vallbona, a native of Spain, wasn't accustomed to patients in their
20s, 30s and 40s, but his desire to defeat the puzzling virus won out.
Out of the devastation wrought by polio, Vallbona had found his
calling.
In 1952, a record 58,000 U.S. cases of paralytic polio were reported.
The same year, Dr. Jonas Salk discovered that injections of killed polio
virus made people immune to the disease, similar to the effect of a
previous infection. A vaccine was licensed in 1955, and by 1960 the
number of reported cases had dropped to 3,000.
It was too late for Nita Weil.
Weil and her husband were visiting friends in June 1952 when, after
an afternoon of sunbathing, she plunged into a stagnant pool, blissfully
unaware that contaminated water was a major source of polio infection.
Only later did she consider the fateful possibilities of that brief,
cooling moment.
She returned to New Orleans with a nagging flulike illness, but then
why shouldn't she be tired? The twins were toddlers, and she spent her
days on the run.
The Weils went out to dinner on a Thursday, returning home early when
her neck grew so stiff she couldn't look down at her plate. Monday
evening an ambulance rushed her to the contagion ward at the local
public hospital.
Iron lungs lined the room, but even as Weil fought for breath,
doctors hesitated for fear she would never be weaned.
"I just kept saying, `I am so tired.' "
At noon the next day they moved her into an iron lung; the relief was
so great that it temporarily obscured the underlying horror.
"It was like coming up from underwater, that first breath."
Weil's crisis had just begun.
Doctors performed a tracheotomy a few days later, allowing her to
breathe through a surgical incision in her throat.
For months she spent nights in the iron lung. During the day she was
removed, struggling to breathe until she could return.
She was almost completely paralyzed.
Time passed with excruciating slowness. Her husband brought the
twins, Shelley and Bill, to visit every week, but an un-air-conditioned
polio ward was no place to be a mother.
In early 1954, 18 months after she had fallen ill, doctors
recommended that Weil go to Houston for rehabilitation.
She said no. Her husband and children were in New Orleans, and she
couldn't bear to leave them, however strained their relationship had
become.
But ultimately she decided she had nothing to offer them unless she
became more independent.
The Southwestern Poliomyelitis Respiratory Center had opened in
Houston in 1951, one of a handful of places in the nation that
specialized in caring for polio patients. Thousands of people were
treated there; as many as 10 patients a day were admitted during the
summers, arriving by train, encased in iron lungs, and by ambulance,
accompanied by frantic family members.
Weil spent eight months in Houston, receiving physical therapy at the
polio center and, just as important, gaining an intoxicating sense of
normalcy.
She spent the final three months of her stay in the Wolff Home
Rehabilitation Unit, a group home in Montrose for polio survivors. "As
you interacted with the staff and the families, the other patients, it
was magical," Weil says. "People understood you. They accepted you."
A harsh reality check awaited her back at the hospital in New
Orleans.
Her marriage had disintegrated, and although her husband continued to
bring the children to visit after their divorce, she sensed that they,
too, were slipping away.
A brief return to Houston in 1956 and a longer stay in 1958
introduced her to a dedicated new doctor at the polio center.
Vallbona had arrived from Louisville in 1955, attracted by the
challenges here. Polio centers were really the nation's first
intensive-care units, he says, serving only the most critically ill.
Patients couldn't breathe on their own; some developed problems
swallowing. "People were drowning on their own secretions," Vallbona
says.
The polio center -- which from the beginning admitted patients of all
races, long before most medical institutions were doing so -- was in a
wing of the first Jefferson Davis Hospital on Elder Street, the
now-historical building abandoned in the 1980s and recently resurrected
as a potential artists' colony.
There Vallbona saw the possibilities of medicine, as well as its
limitations, and as a professor at Baylor College of Medicine, he
remains in the trenches today, treating patients suffering complications
of their long-ago bouts with polio.
But at the height of the epidemic there was no time to wonder where
his career might lead. Vallbona says he and another doctor "literally
and truly spent 24 hours a day for two months in the polio center. We
slept there. We were on call constantly."
He delivered healthy babies to two women in iron lungs, and he
consoled the parents of desperately ill children.
One young mother came to the hospital at least twice a day just for
news of her son, who was not allowed visitors. Vallbona was moved by her
devotion, but when she mentioned feeling sick and achy, his admiration
turned to dread.
She had polio, and within hours she was in an iron lung. The son
recovered, but his mother was paralyzed from the neck down and died a
few years later.
Weil, too, was severely disabled, dependent upon a respirator. But
Vallbona saw something else in this woman, who was just a few years
younger than he was.
"To begin with, she was a beauty," he says. "She was a striking
beauty. And as you got to know her, you saw that she had a beautiful
spirit."
The panic over polio is often likened to the beginning of the AIDS
epidemic.
"In the early days of AIDS, nobody knew how you got it," says
Vallbona, who is now 75. "Could you get AIDS by sitting on the toilet?
No one knew."
Polio is caused by one of three intestinal viruses, transmitted
through food or water contaminated by the fecal matter of an infected
person or, less often, by direct contact with an infected person.
Between 1915, when records were first kept, and 1966, when the number of
deaths had dropped drastically, it killed about 60,000 people in the
United States, although experts question the completeness of those early
records.
AIDS was more lethal -- 90 percent of people infected with polio
suffered only a mild illness -- but its stigma was eerily familiar to
that of polio survivors.
"People were ashamed," Jacoba Schneider, executive director of the
Texas Polio Survivors Association, says of the days before the Salk
vaccine. "They said it was because the mothers were not good
housekeepers. They had the quarantine signs on their homes."
People with polio were shunned, their tragedies the subject of
whispered gossip.
"There was a great deal of public fear, and almost nothing was known
about risk factors (for polio)," says Dick Leavitt, director of science
information for the March of Dimes.
In contrast, the risk factors for AIDS were known fairly quickly,
"and I think a lot of us don't spend much time thinking about getting
AIDS, because we don't think we have those risk factors in our lives,"
he says, "whereas polio would just strike out of nowhere."
Not until the early 1900s did scientists realize that polio could be
transmitted by people with no obvious symptoms, Leavitt says. "The virus
can be spreading all over the place without anyone being paralyzed, so
you wouldn't see it coming.
"It had that kind of spooky, sporadic nature in the way it attacked
members of the community."
Some sources suggest that polio dates as far back as the 14th century
B.C. But Leavitt says those stories are based upon hieroglyphics showing
people whose physical appearance was consistent with polio but could
also have had other causes.
The first documented outbreak occurred in Norway in 1868, followed by
an outbreak in Sweden in 1881, he says.
Until the 1950s, the best-known U.S. epidemic occurred in New York in
1916, killing about 7,000 people and leaving 27,000 others paralyzed.
Paradoxically, modern sanitation played a major role in the rise of
polio. The disease is typically spread through water, often when
sewage-contaminated water is used to wash food or for drinking. That
meant people were often exposed as infants or young children, who most
often suffer only a mild form of the disease.
"By the time children grow up, most of them are already immune,"
Leavitt says. "They've had repeated exposures, like booster shots."
As sanitation improved, polio began to infect older children and
adults who hadn't developed that immunity, triggering outbreaks of the
more serious forms of the disease.
In this newly clean world, U.S. polio statistics rose and fell before
the introduction of the Salk vaccine -- 11,000 Americans paralyzed by
polio in 1935, 38,500 in 1954, 29,000 in 1955 -- but they remained
stubbornly high. The International Polio Network estimates there are
about 1 million polio survivors in the United States.
Only cases that resulted in paralysis were recorded; most people
never even knew they had polio. For them, the virus caused sore throats,
headaches, upset stomachs and fevers, with no lasting consequences.
In 10 percent of victims it spread from the digestive tract to the
brain and spinal cord, causing more serious symptoms. In 1 percent it
caused permanent paralysis.
For the unluckiest few, the paralysis extended to muscles needed for
breathing, swallowing and other vital functions.
The Salk vaccine promised to end the terror.
Oveta Culp Hobby, the nation's first secretary of health, education
and welfare, signed licensing rights to the vaccine during a live
television broadcast in 1955.
"It was huge news, an awesome thing, thinking that polio is now going
to be a thing of the past," Vallbona says.
The National Foundation for Infantile Paralysis, later renamed the
March of Dimes, funded research by Salk and by Dr. Albert Sabin. Sabin's
vaccine, made from a live version of the virus and delivered in drops
rather than injections, supplanted the Salk vaccine in 1962.
But in 2000 the U.S. Centers for Disease Control and Prevention
recommended that doctors stop using the Sabin vaccine, which in rare
cases had given people polio, and instead use a stronger version of the
Salk vaccine, which cannot.
By then, the two rivals were dead.
Vallbona continued to see new cases of polio even after the vaccines
were introduced, although by 1960 his patients came from Mexico and
elsewhere in Latin America. His last patient from the United States was
a high school majorette stricken in 1959. She had not received the
vaccine.
By 1975, only 72 cases of paralytic polio were reported in the United
States, and the number continued to dwindle.
Weil can see the irony of her contracting polio just as Salk made his
breakthrough discovery, but she won't dwell on it.
"I didn't allow myself that moment of sadness or pity," she says. "I
just said, `It's too bad they didn't have it before.' I had been through
so much sadness and grief, I had had so many losses in my life, that
going that step further wasn't worth it to me."
In 1959 she got a second chance.
Dr. William Spencer, director of the polio center, offered her a job
as receptionist at a new rehabilitation hospital opening in Houston.
Leaving New Orleans would mean leaving her children. Moving to
Houston would give her something to offer them.
"I decided I wanted to make a life for myself," she says. "I wanted
there to be a purpose to my life."
Weil moved into a tiny apartment with a woman who had agreed to care
for her. "I felt like I was in a palace," she says.
She was 28. It had been seven years since she had lived outside a
hospital.
The Texas Institute for Rehabilitation and Research (now known as The
Institute for Rehabilitation and Research, or TIRR) had taken over the
polio center in 1957; in 1959 it moved into a new building in the Texas
Medical Center, applying the rehabilitation principles learned from
polio patients to those with spinal-cord and other devastating injuries.
Weil went to work at TIRR, parked in the lobby in her wheelchair,
respirator huffing. She could move her head, her left arm and one finger
on that hand, and she had some movement in her right leg and toes.
Despite her limitations, she had learned to sign her name, to feed
herself, to put on makeup.
Perhaps most important, she had a job. And if Weil could do it, other
patients would realize they, too, had futures.
As the epidemic waned, Vallbona transferred his expertise to
rehabilitation for patients with spinal and muscular problems. He worked
at TIRR, then moved on to other areas of medicine, including the
chairmanship of Baylor's department of community and family medicine.
Everyone saw Weil's courage, Vallbona says, and everyone knew her
heartbreak. It was just one of many family tragedies he witnessed in
those days.
"I have seen many devoted spouses and many devoted parents," he says.
"But it's easy for parents to be devoted to their child. It's much more
difficult for a spouse of a paralyzed person to be devoted."
Weil traveled to New Orleans to see her children every six months.
"With kids, you have to start over all the time," she says. "But I was
determined I wasn't going to let them forget me."
Still, she despaired. And then her resolve hardened.
She continued the arduous trips to New Orleans -- an eight-hour drive
in those pre-Interstate 10 days -- until she decided her children needed
to see her in her own environment.
When the twins were 15, she insisted that her ex-husband bring them
to Houston.
"I wanted my kids to not be ashamed of me," she says. "I didn't want
them to be embarrassed by me being in a wheelchair."
They took in a baseball game at the new Astrodome and toured Westbury
Square, in those days an upscale shopping area. They talked and talked,
and at the end of the day Weil heard the words she had longed for.
"They said, `Mama, we're coming back.' Our friendship started that
day."
Building a life, Weil learned, "is kind of like learning how to swim.
You just get in the water. You create the future."
But after decades of looking forward, she and thousands of other
polio survivors were yanked back to the past.
Weil noticed it in 1981. Her left hand and arm seemed weaker. Her
neck was weaker. She tired more easily. "There wasn't a whole lot left
to get weaker, but I noticed it."
Other survivors noticed similar symptoms.
Dr. Lauro Halstead, a polio survivor who worked with Vallbona at
Baylor, was among those growing weaker. After talking with other
researchers and survivors, he realized he had post-polio syndrome.
Halstead later convinced Vallbona to return to TIRR and take over as
medical director of its post-polio clinic when Halstead left to head the
post-polio program at the National Rehabilitation Hospital in
Washington, D.C.
Post-polio syndrome generally appears at least 30 years after the
initial infection, affecting muscles already damaged by polio as well as
those thought to be unaffected. People suffer from weakness, pain and
fatigue.
As many as 250,000 polio survivors in the United States -- 8 million
worldwide -- may be affected, according to the March of Dimes.
Most experts believe the problems are caused when healthy nerve cells
begin to fail after decades of overcompensating for the cells damaged by
polio.
People with post-polio syndrome are treated with a mix of rest and
gentle exercise. Some who hadn't previously used braces, canes, scooters
or wheelchairs now do. Others who hadn't needed help breathing were
forced to use respirators or other breathing aids.
Many people misdiagnose the pain and weakness of post-polio syndrome
as arthritis and other problems of advancing age, says Vallbona, who
estimates that between 40 percent and 60 percent of polio survivors may
be affected.
Weil had a tracheotomy in 1990 after recurrent bouts of pneumonia. It
seemed like the final indignity.
"I said, `I'm not going to go out with all this stuff hanging off
me,' " she says of the tracheotomy tube snaking out of her throat. Then
she thought again.
"It occurred to me that I didn't die, so I wasn't going to act like I
had. That was a hard transition, but you have to get past it."
Post-polio syndrome is a cruel reminder of a terrifying public health
epidemic that might otherwise have receded into history. Only a handful
of cases of polio have been reported in the United States since 1979,
all traced to the Sabin vaccine.
Polio is unlikely to stage a comeback in the foreseeable future,
Leavitt says.
No cases of "wild" polio virus -- occurring naturally in the
environment -- have been reported in the Western Hemisphere since 1991,
and in late June polio was declared eradicated in Europe, including the
former Soviet republics.
But elsewhere the virus remains a threat. About 7,000 people
worldwide were known to be infected in 1999, mostly in Africa and South
Asia, and efforts to increase vaccination rates continue.
The World Health Organization and a coalition of other organizations
have announced a goal of eradicating polio by 2005, but nobody expects
it to happen that soon, Leavitt says.
For all that polio has taken from her, Weil, at age 71, remains
resoundingly alive.
Gold bracelets jangle on her left wrist. She wears bright colors,
lets her curly gray hair shake loose, even has a pair of rose-tinted
glasses.
"I don't know where my life would have gone," she says. "When I came
to work at TIRR, I had had seven years of ... asking questions. I just
wondered why, with my babies at home, was I taken away from them?"
But within a few months she had an epiphany: "This is where I'm
supposed to be."
She has worked for a variety of causes over the years, from MetroLift
to Park for All Children, an accessible playground. She's still at TIRR,
now as head of volunteer services.
Weil remains close to her children. Her son, Bill Weil, lives in
Louisiana; her daughter, Shelley Caspary, moved to Houston with her
family in 1992.
And she has made peace with her former husband, taught by her work at
TIRR that family members suffer, too.
"You need to leave the world a better place," she says of her life
and her passions. "Age never was the thing with me. ... What's important
to me is that I don't lose my functioning, that I can still work."
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