VOL. 22, NO. 2, 1996
First Person Account:
A Voice From Another
Closet1
by Pamela Splro Wagner
Abstract
The article that follows is part
of the Schizophrenia Bulletin's
ongoing First Person Accounts series. We hope that mental health
professionals—the Bulletin's primary audience—will take this
opportunity to learn about the
issues and difficulties confronted
by consumers of mental health
care. In addition, we hope that
these accounts will give patients
and families a better sense of
not being alone in confronting
the problems that can be anticipated by persons with serious
emotional difficulties. We welcome other contributions from
patients, ex-patients, or family
members. Our major editorial requirement is that such contributions be clearly written and
organized, and that a novel or
unique aspect of schizophrenia
be described, with special
emphasis on points that will be
important for professionals.
Clinicians who see articulate
patients, with experiences they
believe should be shared, might
encourage these patients to submit their article to First Person
Accounts, Division of Clinical
and Treatment Research, NIMH,
5600 Fishers Lane, Rm. 18C-06,
Rockville, MD 20857.—The
Editors.
I live in a closet. Unlike most
closets, mine is invisible. No one
else can see it or touch it or even
come inside to keep me company.
Nevertheless, its imprisoning walls
and terrifying darkness are very
real.
The "closet" is schizophrenia, a
major mental illness or, as some
. professionals now refer to it, a
neurobiological disorder. I have
suffered from schizophrenia for a
399
good part of my adult life. It is
treatable but is, as yet, without a
cure.
The first signs of schizophrenia
may appear suddenly, but often,
as in my case, the onset is insidious and gradual. Although I did
not have schizophrenia as a child,
I see now that certain aspects of
my childhood experience might be
seen, in hindsight, as prodromal to
the illness itself. For example, a
certain anguishing hypersensitivity
revealed itself at a very early age,
in kindergarten: My fear of touching the "play money" used to
teach us about real money and
my distaste for the texture and
color of the graham crackers and
apple juice we ate at snack time
were so intense that I hid in the
coat closet to avoid them. A few
years later, I remember walking
the family dog each night and believing a fire hydrant was a miniature nun who spoke to me about
St. Sebastian, suggesting to me
that I too was to die a martyr. In
high school it became harder and
harder to conceal my difficulties,
and although I was a good student and earned my share of A's
and B's, I became virtually mute
during the school day. Because of
this and my habit of staring
straight ahead even when addressed directly, some of the other
students took to calling me "the
zombie."
College brought even greater
stresses and with them a certain
paranoia. At first, the experience
was mildly pleasurable: I "knew"
1
Parts of this article have been previously published in a slightly different form in the Hartford Courant.
Reprint requests should be sent to
Ms. P.S. Wagner, 100 Executive
Square, Apt. 1201, Wethersh'eld, CT
06109.
400
that everyone was thinking and
talking about me, but this seemed
relatively benevolent and made me
feel real. Later on this changed
drastically as I came to believe
that a local pharmacist was tormenting me by inserting his
thoughts into my head, stealing
mine, and inducing me to buy
things I had no use for. The only
way I could escape the influence
of his deadly radiation was to
walk a circuit a mile in diameter
around his drugstore, and even
then I felt terrified and in terrible
danger. Overwhelmed and unable
to share my bizarre experiences
even with the college social
worker, I took an overdose—a cry
for help, not a genuine suicide
attempt—and later was hospitalized for 5 months.
Despite two hospitalizations, I
managed to graduate from Brown
University a Phi Beta Kappa and
go on to attend the University of
Connecticut Medical School. But
after little more than a year, I
could not function any longer. By
this time the voices had made
their appearance and were accusing me of being homosexual and,
as they put it, "the whore of
Satan." Moreover, touching any
patient made me feel that I was
being electrocuted; I was certain
that the other students were reading my mind and making fun of
me to such an extent that even attending lectures caused me unbearable anguish and torment. As
my difficulties became more and
more evident, the school required
me to see a psychiatrist as a condition of remaining a student. But
I was so terribly ashamed of my
problems that I couldn't confide in
my own therapist, fearing I'd be
laughed at or contemptuously
dismissed.
SCHIZOPHRENIA BULLETIN
Although I had been raised Unitarian, without most of the usual
Jewish or Christian beliefs, I became excessively preoccupied with
religion. I began to misinterpret
the everyday world, finding enormous and supernatural significance
in apparent trifles. I knew I was
evil, Satan's spawn, and to this
day am not sure that I was not in
fact responsible for JFK's assassination as well as other international
catastrophes. In fact, I was rehospitalized at the time of the
25th anniversary of JFK's death
because of this. Once, the title of
a book so preoccupied and disturbed me that I took off for New
York City and spent almost my
last cent getting to Orlando, Florida, because I believed the book
had told me to do so.
I was, and despite medication
at times still am, sensitive to casual remarks. Sometimes even a
"Hello" or "How are you?" can
feel threatening or of cosmic significance. I hear the voices of
abusively cruel people talking to
me constantly, even when no one
is present, and often such talk is
a running commentary on every
one of my daily activities. Listening to the radio is impossible
because of the personal messages
I am sent, either by the DJ or
by the sequence of music and
advertisements.
Although the poet Emily Dickinson did not have schizophrenia,
some of her poems hint at an intuitive understanding of some aspects of the illness. In one poem,
she wrote:
And Something's odd—within—
That person that I was—
And this One—do not feel the
same—
Early on, I was aware that
something was terribly wrong with
me, that something was "odd
within," though I never could
have put a name to it or expressed the experience in words.
Even when the more florid symptoms of a full-blown psychotic
episode are under control, the
sense of a strange unreality underpinning everything persists: "Reason," as I put it in a poem of my
own, "burning and glowing but
just beyond reach."
Although I still have symptoms,
I have not been hospitalized (except very briefly for a medication
reaction) in a year, and every day
that passes puts me just that much
farther toward my goal of staying
out of the hospital completely. At
42, I think I'm slowly getting better or at least getting better at
dealing with the difficulties that
remain. I feel stronger and more
stable now than ever before. Bad
days, days when I cannot write or
even read a word, are becoming
rarer, while the good days filled
with productive writing hours are
more frequent. Just recently, in
fact, I had an article published in
the Hartford Courant, while one I
wrote in 1993 won the Connecticut
Mental Health Media Award, an
award limited to professional journalists. Having struggled for so
long, I find it difficult to call myself a professional anything, let
alone journalist, but it's true: At
last I am getting published and
earning a little money for it. Since
my lifelong dream is to be a
writer, I couldn't ask for more!
So, if I'm better, what helped?
What, besides the passage of time,
has made the difference? Well, I
can't name one single factor responsible for my recovery because
so many things worked together.
Medication has surely played a
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VOL. 22, NO. 2, 1996
role, though I don't believe that
medication alone would have gotten me to where I am today. With
the help of my therapist, a nurseclinician I see at a local clinic, I
have found a regimen of medicines that seems to be effective.
But simply seeing her once a
week has, by itself, been of great
assistance in helping me learn to
function and cope better day by
day. At one point I also had the
helpful support of a case manager,
but because of the progress I've
made over the past few years I
recently decided that I no longer
needed her services. Hartford's
Visiting Nurse AssociationHealthcare has also helped immeasurably by providing me with a
visiting nurse who comes to my
apartment regularly. She is able to
more closely monitor my state of
mind and how I'm doing than
someone who'sees me only for office visits.
Medication, therapy, contact with
case manager and visiting nurse—
all have played an important role
in my ongoing recovery and in a
seemingly synergistic fashion. Time
too—the simple fact that I've lived
for so long with this condition—
must be another factor. I've
learned to cope with my symptoms, which have diminished bit
by bit over the years, and I am
better able to function despite the
ones that still trouble me. I'm happier, too, and if s hard to say if
that is a matter of cause or effect.
In either case, I am living proof
that people can find contentment
and satisfaction in life even with
schizophrenia and that the diagnosis does not necessarily condemn a person to a life of unending misery. We need to have
hope, both as patients and as family and friends of patients.
In terms of the debate now before Congress, however, much
more needs to be done. Given the
prevailing attitude and the resulting stigma against those with
neurobiological disorders, I do not
expect President Clinton's health
care reform to change the present
situation in which those of us
with such disorders are penalized
for our suffering because it is considered somehow not real, not significant, or our own fault.
If a person is in an accident because of drunk driving, no one refuses to set his or her broken
bones or charges enormous repayments. Yet this is precisely the
case with neurobiological illness,
which is no more the patient's
fault than arthritis or diabetes or
heart disease and may be just as
chronically disabling.
We need to stop blaming the
victims, stop assuming that neurobiological disorders or mental illness is different from other forms
of illness, a moral failing, a matter
of good and evil instead of a disease like any other. We need to
fund more research and provide
accessible intervention and treat-
ment so that lives are not wasted,
so that those with neurobiological
disorders have a chance to live
reasonably happy and productive
lives.
Schizophrenia is, for most people, an uncharted and terrifying
shadowland that they seek to
avoid along with the sufferer
whose torments, pain, and
oddnessess so scare them. In the
past, such people were put behind
the locked doors of asylums. Today they are simply consigned to
the anonymity and powerlessness
of poverty and forgotten.
I did not come to live in my
closet out of choice or willfulness.
Who would? Like other minorities
in their own closets, those of us
with schizophrenia suffer greatly
in the closeted dark. We need the
light and fresh air of acceptance
just as much as everyone else, and
we need to be treated as if we
matter.
We can't find our way alone,
not without the help and understanding so often denied us. In
spite of the closets imprisoning us,
we still live among you, hundreds
of thousands of us. Only with
support and encouragement will
we ever be able to break open the
doors.
The Author
Pamela Spiro Wagner is a freelance writer who lives in Wethersfield, Connecticut.