Psychosis, demons and my beautiful daughter
My daughter lived more than six years with an incurable disease that filled her head with devils that literally hounded her to death.
HANDOUT / THE WASHINGTON POST
Doris Fuller with daughter Natalie in 2004, when their book Promise
You Won't Freak Out was named the best parenting book of the year.
I lost my darling daughter Natalie to mental
illness last month. She killed herself a few weeks short of her 29th
birthday by stepping in front of a train in Baltimore.
Natalie and I wrote a book together when she was 16: Promise
You Won’t Freak Out: A Teenager Tells Her Mother the Truth About Boys,
Booze, Body Piercing, and Other Touchy Topics (and Mom Responds).
The idea of a teenager telling the truth about her secrets was such a
startling concept that we were feature-page headliners in the Baltimore
Sun and about two dozen other newspapers, went on TV coast to coast,
including on one of the morning shows, and got paid to give speeches.
Oprah called.
In the book, we used a device to signal whenever a wild turn was about to take place: And then ... In the introduction, I defined an And then ...
moment as “one of those critical junctures when my cheerful sense that
all was right in the world collided with inescapable proof that it
wasn’t.”
The book was published to great reviews the
week before Natalie finished high school. Amazon named it the best
parenting book of 2004. It was nominated for a national prize. It was
translated into Lithuanian and Chinese.
And then ...
At 22, during the second half of her senior
year of college, Natalie experienced a psychotic break. In the span of a
few weeks she went from being a dazzling young adult with the world at
her feet to a psych-ward patient with an arrest record. Only much later
did I learn what a devastatingly common trajectory this was.
Psychotic disorders nearly always emerge in
late adolescence or early adulthood, with onset peaking between the ages
of 18 and 25, according to Thomas Insel, director of the National
Institute of Mental Health. Scientists don’t know why. Many researchers
are focusing on abnormalities in the way the brains of people who behave
psychotically develop during adolescence. Others are investigating
genetics, prenatal circumstances and environmental conditions.
Some consensus has emerged around the concept
that psychotic breaks like Natalie’s are not, as they may seem, abrupt
but rather are the climax of a long buildup. In this model, they are
rooted in molecular changes in the brain that begin as much as a decade
before symptoms occur and progress to an end-stage psychosis in which
reality surrenders to delusion, paranoia, hallucinations or other forms
of disordered thinking. This idea suggests the possibility, both
tantalizing and controversial, that children might someday be screened
for psychosis indicators the way they are screened for other health
risks, with the hope of reducing the onset of psychosis much as we have
reduced the prevalence of heart attacks.
Natalie’s symptoms probably began in her
junior year of college, but — like nearly every other family member who
ever talked to me about their own loved one’s unravelling — I had no
frame of reference to recognize them for what they were.
She went a week without sleeping more than a
few hours a night and seemed to have endless energy. But she was
travelling abroad then and relying on caffeine to stay awake. Our family
saw this as jet lag, not mania. A few months later, she reported that
one of her friends had begun whispering whenever Natalie turned her head
away. But the girls were on the road together in close quarters and
having some spats. With no history of mental illness in the family,
auditory hallucinations never crossed anyone’s mind.
Only half a year later — when the whisper of
her friend grew into a chorus of strangers issuing commands that led to
Natalie’s arrests for offences such as trespassing — did the connection
become apparent. Again, commonplace: The average duration of untreated
psychosis in America is 70 weeks, Insel says.
Like most people in the midst of psychiatric
crisis, Natalie maintained that she was fine and that “everyone else is
crazy.” She continued to deteriorate until police officers, responding
to still another call, took her to a hospital emergency room instead of
to jail. After a series of psychiatric examinations and a court hearing,
she was committed to the state’s public psychiatric hospital. She
received intensive treatment for severe bipolar disorder with psychosis
until she was stable and symptom-free two months later.
Natalie came home sane, revived and seemingly
her vibrant old self. She moved in with me for the summer and taught me
how to like grilled tofu and make egg scrambles. She concocted the best
mixed salads of my life. She filled my house with her original art, her
friends and her irrepressible spirit. Mental illness was not a theme.
She returned to college to restart her senior year. I saw her off with
an emptier stomach but oh so much optimism.
And then ...
Three months later, Natalie abruptly stopped
taking the medications that had kept the manic swings and auditory
hallucinations at bay. Within minutes of walking through the door for a
weekend at home, her delusion-loaded thinking and behaviour made it
obvious that what I eventually came to think of as “the demons” were
back.
Natalie’s relapse was worse than her first
break: the psychosis and hospitalization longer, the recovery harder to
achieve, the eventual medications more complicated, the resulting future
not as bright. Her second commitment to the hospital lasted 10 months,
an eternity in an era where the average psychiatric stay is about five
days and most people who are psychotic never get a bed at all. Thanks to
the intensive care, she rebounded again, albeit more slowly, and
finished her bachelor of fine arts degree. Her attending psychiatrist
from the hospital and several staff members drove 120 kms to attend her
senior art show. It was a triumph for us all.
But, as is true for far too many individuals
and families and professionals who live with or around untreated severe
mental illness, the And thens continued. While Natalie seemed
happier and more productive on meds, she missed the high of occasional
mania and she hated the weight gain that is a common side effect of the
drugs she was taking. Stable, she would sometimes declare that she
wasn’t sick after all and didn’t need medication — another common reason
people give for quitting their meds.
Yet if she even inadvertently missed a few
days of medication — even while receiving therapy and other forms of
treatment — the demons would return, and one of the first things they
would tell her was to stop taking her medicine. The second thing they
would tell her was not to talk to her mom, the most powerful other
influence in her life. Each time she obeyed and relapsed, she plunged
into a longer free fall, hitting the ground harder, recovering more
slowly and returning at a lower plateau.
The final time she entered this cycle was last
fall, when Natalie became convinced she was among the 1 in 4 people
with psychotic disorders whose symptoms improve only minimally or not at
all with medications. There were no apparent signs of psychosis, and
she seemed happy and healthy to everyone around her, but she said we
couldn’t see inside her head. In November, six years after her first
break, she announced that because she was going to have hallucinations
anyway, she was giving up meds for good. Now 28 years old, she stopped
the injectable antipsychotics and oral mood stabilizers that had helped
her rebuild her life, and her mind began its final, fatal unwinding.
Natalie was a believer that treatment worked
and that the mental health system needed to be reformed so other people
received the kind of care she had when she was in crisis. She told her
story in a documentary short last year about the criminalization of
mental illness. She dreamed of being a peer counselor. She said she
wanted to help others as she had been helped — until she became
convinced that she was beyond help.
In the weeks after Natalie’s death, the
outpouring of sympathy and grief from legions of people who have fought
demons have made me keenly aware that the pain I feel from her loss is
but a drop in the ocean of pain created by untreated mental illness.
Wrote one woman, “I have bipolar disorder and can’t even begin to tell
you how many people over the years have said to me, ‘Be glad that is all
you have.’ ‘It could be worse, you could have cancer or some other
terminal illness ... ‘ It saddens me that so many people do not realize
that mental illness, while treatable, is not a curable disease, and can
lead to death.”
My daughter lived more than six years with an
incurable disease that filled her head with devils that literally
hounded her to death, and she did it while laughing, painting, writing
poetry, advocating and bringing joy to the people around her. She was
the bravest person I have ever known, and her suicide doesn’t change
that.
“Natalie will help our society to move
forward,” a post-doctoral fellow at Johns Hopkins Hospital wrote me upon
learning of the suicide. “She is helping us to look at mental illness
with the respect, the compassion and the dignity it deserves.”
I hope so. Natalie would have loved that legacy.
Fuller is executive director of the
Treatment Advocacy Center, an Arlington, Va.-based non-profit dedicated
to eliminating barriers to treatment for people with the most severe
psychiatric diseases.
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