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MARCH 25, 2002 A Troubled
Mind
What it's really
like to live with schizophrenia
By Nancy Shute
When Debra Lunceford-Mikolajczyk saw A Beautiful Mind, she
delighted in how the hallucinations of the Nobel Prize-winning
mathematician John Nash seemed so real. "Everyone feels the
psychosis with him. It was so cool."
And she knows psychosis. On April Fools' Day 1977, the
22-year-old blond with the perfect pageboy was driving to Kresge's
to buy bobby pins when her car radio started sending her secret
messages. "Tell us, what would you do if you trapped someone?" "I
thought someone was playing a joke on me," she recalls. Terrified,
she played along. Soon she was up at 5 a.m., deciphering messages in
songs like "Fly Like an Eagle." When she tried to cut off the voices
by changing stations, the voices would change, too. Looking back,
she says: "I knew something was wrong with how I processed
information. I knew I was not a well girl."
Indeed. She ended up hospitalized for five weeks. When she
got out, she was "an unwed mother with a 2-year-old, basically
insane." Lunceford-Mikolajczyk is one of the more than 2 million
Americans with schizophrenia. It is the most dreadful of all mental
illnesses, striking its victims in their teens and 20s and
devastating their minds. The disease has put Mark Hidalgo's life on
hold. "My plan is to get a car, get a part-time job, get a
girlfriend, go out to dinner, go to the movies, and get married," he
says. Instead, the 42-year-old son of a Costa Rican diplomat lives
with his mother and spends his days at Liberties Inc., a support
center for people with mental illnesses in a strip mall in suburban
Detroit. Monthly shots of Haldol, an antipsychotic drug, subdue the
paranoia and sleeplessness that tormented him. But anxiety attacks
make it impossible for him to drive or work. "It's terrible,"
Hidalgo says. "You feel like everyone's staring at you, and you
can't keep your mind on one thing."
Mild manners. Hidalgo and Lunceford-Mikolajczyk hardly fit
the common image of a schizophrenic as a grimy street person
screaming about space aliens. Impeccably groomed and articulate,
they'd pass muster in any office. The fact that their illness--and
their suffering--are invisible to the casual acquaintance further
reinforces the public perception of schizophrenics as deranged bums.
But confusion has long surrounded this disease.
Schizophrenia has existed for thousands of years but until
quite recently was considered the product of evil spirits, to be
exorcised with torture. It wasn't until the late 19th century that
physicians realized that its perplexing symptoms were all part of
the same disease. Those include "positive" symptoms, such as
delusions and hallucinations; "negative" symptoms, which include
lethargy and lack of emotion; and cognitive impairments that lead to
the loss of learning, memory, and decision making. About 20 percent
of people with schizophrenia recover without lasting ill effects.
But one in 10 commits suicide. The rest range from people who are
severely disabled to those who function fairly well between
episodes.
Debbie Lunceford-Mikolajczyk is one of the latter. After her
first episode, she knew only that she couldn't bear the thought of
losing her son. "It was a challenge between my love for him and my
delusions. I couldn't do both. I had to hang on to my son."
Antipsychotic medication banished the delusions; good
psychotherapists helped, too, as did her belief in God and a sense
that there was always a part of her brain that she could trust. When
things were good, she juggled part-time waitressing jobs. When
things were bad, she knew to run to her mother and sisters, who let
her pace for hours, muttering. She now works full time as the
executive director of Liberties and has been hospitalized only once
since she took the job 12 years ago. "People said, it's going to
upset you, it's going to make the symptoms worse," she says. "The
exact opposite has happened." She married seven years ago and counts
her blessings. "Now I'm a grandma. A lot of the people here will
never have that experience."
Well into the 20th century, it was considered acceptable to
blame "schizophrenogenic" mothers for causing the illness through
poor parenting. In 1961, Thomas Szasz published The Myth of Mental
Illness, arguing that there was no disease, just a sick society. It
wasn't until the past few decades, with the deployment of
increasingly powerful brain-imaging technologies, that scientists
were able to see that the disease deforms both brain structure and
function. But no one can say exactly what is causing the havoc.
Clearly, genes play a key role. Schizophrenia runs in
families, and children with a schizophrenic parent have a 10 percent
chance of getting the disease--10 times higher than normal. But the
statistics are tricky. The identical twin of a person with
schizophrenia has only a 40 percent chance of being affected,
despite having identical genes. So it now appears that
schizophrenia, like other common diseases such as heart disease and
diabetes, results from a complex interaction of multiple genes, with
at least five variations and probably more. Geneticists are
searching for those genes in order to perhaps someday create genetic
tests or tailored treatments. But it's a huge task. "Schizophrenia
does not give up her secrets easily," says Kenneth Kendler, a
psychiatrist at Virginia Commonwealth University who studies the
disease in families.
Double barrel. Increasingly, scientists are proposing a
"two-hit" theory of schizophrenia. Genes account for 50 to 80
percent of the risk, with a "second hit" triggering the disease in
genetically susceptible individuals. A bewildering variety of
factors correlate with increased risk, including a difficult birth,
being born in spring and winter, being born in a city instead of the
country, and exposure to viruses and parasites such as
toxoplasmosis, which is spread by cats. Somehow the genes and
exterior insults combine to derail brain development. It's
significant that after a seemingly normal childhood, many people
fall ill in their teens, when key final steps in brain maturation,
including "pruning" of excess neurons, are underway. Indeed, in the
past few years researchers in Australia and the United States have
experimented with identifying and treating teenagers in the very
first stages of the disease, in an effort to ward off irreversible
damage. These experiments are controversial, not only because the
early symptoms of schizophrenia--moodiness, anxiety,
withdrawal--read like the behavior of most normal teenagers--but
also because they use drugs with dangerous side effects on minors,
most of whom will never get sick.
If our understanding of schizophrenia is incomplete, our
weapons against it are also woefully limited. Schizophrenics are no
longer subjected to the insulin-shock therapy that tormented John
Nash in 1961, but many of the drugs used have been around for 50
years and are blunt tools at best. Rebecca Lewis was diagnosed with
schizophrenia when she was 19, married, a new mother, and working
for her father at a plastics sales company in Detroit. "I thought
the Devil was following me," she says now. "He was in the back seat
of my car. The Devil was telling me to kill myself, that I was not a
good person. I'd hear him all day, every day." At the time she was
also drinking and using marijuana and other drugs, a common
situation in schizophrenics, who "self-medicate" to quiet the
cacophony in their heads.
Lewis is now 30, with cropped blond hair and a childlike face
that gives no clue that she's spent the past 10 years in and out of
hospitals, divorced and unemployed, trying to control her illness
with a succession of antipsychotic medications. "I was on Haldol,
Thorazine, Stelazine, everything you could think of." Thorazine
banished the Devil, but she hated how she couldn't pick her feet up
when she walked. ("Thorazine shuffle" is a common side effect.)
Clozaril, a new "atypical" antipsychotic introduced in the early
'90s, worked well for five years but left her constantly tired.
Worse, she gained 150 pounds. Huge weight gains are a common side
effect of the atypical drugs, which also can destroy white blood
cells and cause diabetes. Last year the Clozaril suddenly stopped
working. The Devil returned, and Lewis was hospitalized for 11 days.
She's now on Prolixin, an older antipsychotic, and "it works good."
But it carries with it the risk of Parkinson's and an irreversible
movement disorder known as tardive diskynesia.
Lewis's mixed results are not unusual. When French
researchers introduced Thorazine in the 1950s, it revolutionized
mental healthcare, ending hallucinations and delusions in many
people and making it possible to close down huge state institutions
that were often little more than warehouses. But the drugs did
nothing to end the apathy and loss of cognitive function that are
also part of the disease. Many people taking them, like Mark
Hidalgo, get better but still aren't well enough. Some people aren't
helped by the drugs at all.
The atypical antipsychotics work against positive symptoms
but also appear to slow cognitive decline and may reduce suicide as
well. Keeping brainpower is ultimately more valuable than quelling
hallucinations, says Vanderbilt University psychiatrist Herbert
Meltzer. "I treat people who are still having hallucinations but are
able to hold a job." Meltzer has worked with John Nash, who he says
has hallucinations even now. But the mathematician had such
extraordinary brainpower before he became ill, Meltzer says, that he
is still able to function.
Drugs vs. services. The new antipsychotics are not without
their critics, however. They are 10 times more expensive than the
older medications and have been aggressively marketed, capturing the
majority of the $6 billion U.S. market for antipsychotics. Since
most schizophrenics are on public assistance, the premium is borne
by taxpayers. More money for drugs means less money for community
treatment programs that bring services to people at home or on park
benches and clubhouse-type centers like Liberties, all of which have
proved to make a big difference. "The research on causes and
developing treatments has never been more promising," says E. Fuller
Torrey, a psychiatrist who has been advocating for the mentally ill
for more than 30 years. "And the services have never been less
promising. The way we're treating people is abysmal."
"People began to ask questions as to whether the new drugs
were really better," says Jeffrey Lieberman, a psychiatrist at the
University of North Carolina. He's leading a huge nationwide study
designed to ask that question, funded by the National Institute of
Mental Health. The study will also for the first time include "dual
diagnosis" schizophrenics who also abuse alcohol and drugs, to
measure how the drugs work in the real world.
Antipsychotic drugs are also tangled, inextricably, in the
question of schizophrenia and violence. Until A Beautiful Mind
became a box-office hit, schizophrenics made headlines only when
they had done something ghastly. Andrea Yates, who was convicted
last week of killing her five children, drowned them while in the
grip of psychotic delusions. Ted Kaczynski built his lethal bombs
with the false beliefs of paranoid schizophrenia. Rusty Weston, also
a paranoid schizophrenic, killed 14 cats on his parents' Illinois
farm before shooting up the U.S. Capitol, where he killed two police
officers. Mental-health advocates often argue that people with
schizophrenia are no more violent than the general public. But
recent research shows that there is more risk. In any year, 2.3
percent of the non-ill public commit a violent act, while 7 percent
of people with schizophrenia or a mood disorder do, according to
data gathered by NIMH. Lunceford-Mikolajczyk says the violence is a
product of the confusion created by the disease. "We're drawing
conclusions based on things we've never seen before, and we don't
know what to do."
Off track. The problem is compounded by the fact that about
40 percent of people with schizophrenia aren't receiving treatment
at any given time and that people off medication are far more likely
to be violent--and to be the victims of violence themselves. Many,
like Weston, go off their medication because their thinking is so
impaired that they don't realize they are ill. Others stop taking
meds because they can't stand the side effects, are homeless, or
don't want to be stigmatized. But the low rate of treatment is also
the fault of a system so cumbersome that even a normal person would
be hard pressed to prevail. "It's an incredible tragedy," says
Marvin Swartz, a psychiatrist at Duke University. "We haven't
configured treatment in a way that recognizes people's impairment."
Swartz studies "outpatient commitment" programs, which legally
require patients to take medication as a condition of being released
from a hospital. His research has shown that these programs do
reduce violence but need to be continued for at least a year to
work. Some civil liberties groups vehemently oppose outpatient
commitment, saying it unconstitutionally infringes freedom. Swartz
argues that even very sick people understand the tradeoffs involved.
"Folks with schizophrenia don't like outpatient commitment, but they
value much more being safe and getting along with their families and
staying out of the hospital."
But even staying out of the hospital and staying on
medication don't necessarily make a person with schizophrenia feel
safe. Rebecca Lewis adores her daughter Alyssa, now 10. But by court
order she sees her only on supervised weekend visits at her
mother's. "One day I accidentally spanked her too hard," Lewis says.
Although the incident happened years ago, Lewis isn't ready to take
a chance. "I don't know if I'd trust myself. I don't think I'd hurt
her. But this lets me sleep with comfort."
To sleep with comfort--there's a goal that all too often
eludes her. Lewis is proud of the fact that she has moved out of a
group house into her own apartment, but she's often afraid there.
Sometimes, at night, the visions return. She says she "has not a
clue" what she's going to do with her life, other than help her
daughter grow up to be a good girl. But she's found a haven at the
Liberties support center, where she goes almost every day to hang
out, shoot pool, and help organize events like the big St. Patrick's
Day bingo party and corned beef feed. At Liberties she met Mary
Smith, a 50-year-old former nurse with depression. She's now
sponsoring Mary for conversion to the Catholic faith. They go to
mass together on Sunday. When Rebecca gets too paranoid to stay home
alone, she stays at Mary's. And it's at Liberties that she met her
new boyfriend, John Fawcett, a 33-year-old with schizophrenia and a
dry sense of humor who works nights at a BP Amoco station. Together
they rent videos at Blockbuster or shoot some pool. John says,
"Since I came down with this mental illness I've really mellowed
out."
Rebecca Lewis thinks back to the movie A Beautiful Mind.
"Russell Crowe did a wonderful job of portraying what it's like,"
she says. "A lot of people think that with schizophrenia you don't
have a heart. He had his family, he had his wife and his son, and he
loved them."
"We're not crazy," she says. "Medicine and therapy helps
things out. We shouldn't be judged like that. But we are." |
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