Read The Center Cannot Hold: My Journey Through Madness Online
Authors: Elyn R. Saks
Tags: #Teaching Methods & Materials, #Biography, #General, #Psychopathology, #Health & Fitness, #Personal Memoirs, #Women, #Diseases, #Psychology, #Biography & Autobiography, #Schizophrenics, #Education, #California, #Social Scientists & Psychologists, #Mental Illness, #College teachers, #Schizophrenia, #Educators
year.
And for the first time, as Kerrigan had promised when I was first
admitted, I received an actual diagnosis: "Chronic paranoid
schizophrenia with acute exacerbation." My prognosis, I was told, was
listed as "Grave."
So then—there it was. A part of me had been waiting for those
words, or some version of them, for a very long time, but that didn't
lessen the overwhelming impact of them, or what they signified for my
life.
In spite of my ongoing difficulties ever since undergraduate school
(and, in all likelihood, even before that), I hadn't ever really thought of
myself as "ill"—not at Vanderbilt, or even at Oxford, when I was
obviously delusional. I truly believed that everyone had the scrambled
thoughts I did, as well as the occasional breaks from reality and the
sense that some unseen force was compelling them to destructive
behavior. The difference was, others were simply more adept than I at
masking the craziness, and presenting a healthy, competent front to
the world. What was "broken" about me, I thought, was my inability to
control my thoughts and fantasies, or to keep from expressing them.
In reading everything about mental illness that I could get my hands
on, I wasn't looking for a diagnosis per se as much as I was looking for
an explanation for my
behavior
, which obviously wasn't acceptable. I
thought that if I could figure it out, I could conquer it. My problem
was not that I was crazy; it was that I was weak.
The summer before I first came to Yale (when I'd returned from
Oxford and had too much time on my hands), I had discovered the
Diagnostic and Statistical Manual of Mental Disorders,
aka the
DSM,
in the Miami library. I read it cover to cover. Knowledge had always
been my salvation, but with my immersion into the
DSM,
I began to
understand that there were some truths that were too difficult and
frightening to know. I was smart enough to read the text—the
definitions, the ramifications—and I understood what the words
meant. And to a certain extent, I even understood some of the science.
But understanding and believing are not the same; I simply refused to
accept on any conscious level that this had anything to do with me.
And now, here it was, in writing: The Diagnosis. What did it mean?
Schizophrenia is a brain disease which entails a profound loss of
connection to reality. It is often accompanied with delusions, which
are fixed yet false beliefs—such as you have killed thousands of
people—and hallucinations, which are false sensory perceptions—such
as you have just seen a man with a knife. Often speech and reason can
become disorganized to the point of incoherence. The prognosis: I
would largely lose the capacity to care for myself. I wasn't expected to
have a career, or even a job that might bring in a paycheck. I wouldn't
be able to form attachments, or keep friendships, or find someone to
love me, or have a family of my own—in short, I'd never have a
life.
At that time, there was little encouraging medical news about
treatment for schizophrenia; certainly there were no cures, and
effective treatment was rare. Save for a few antipsychotic medications
that carried terrible side effects in the short term and horrible physical
risk in the long term, there was little in the way of medication to offer
a person suffering from schizophrenia. The medications worked for
some people; they didn't work for others. They had to be constantly
monitored by medical professionals and readjusted. What had been
an essential part of treatment for me—intensive talk therapy—was
falling out of favor.
I'd always been optimistic that when and if the mystery of me was
solved, it could be fixed; now I was being told that whatever had gone
wrong inside my head was permanent and, from all indications,
unfixable. Repeatedly, I ran up against words like "debilitating,"
"baffling," "chronic," "catastrophic," "devastating," and "loss." For the
rest of my life.
The rest of my life.
It felt more like a death sentence
than a medical diagnosis.
And then there was the whole mythology of schizophrenia, aided
and abetted by years of books and movies that presented people like
me as hopelessly evil or helplessly doomed. I would become violent, as
the delusions in my head grew more real to me than reality itself. My
psychotic episodes would increase, and last longer; my intelligence
would be severely compromised. Maybe I'd end my life in an
institution; maybe I'd
live
my life in an institution. Or become
homeless, a bag lady whose family could no longer care for her. I'd be
that wild-eyed character on the city sidewalk that all the nice baby
carriage-pushing mommies shrink away from.
Get away from the
crazy lady
. I'd love no one; no one would love me. For the first time in
my life, I truly, deeply understood what people meant when they said,
"It broke my heart."
At much earlier times, people suffering from schizophrenia were
viewed as either cursed by the gods or blessed by them. In some
cultures, "seers" were revered and given the privileges of high station;
in others, they were shunned and driven away from the community
like lepers. More recently, one nursing textbook from the 1930s gave
an impressive (if unlikely) laundry list for what caused schizophrenia:
war, marriage, masturbation, and religious revivals.
The history of schizophrenia is rich in blame for families.
According to the crushing weight of a century's teaching, my illness
was an indictment of my parents. Years ago, one respected
psychoanalyst coined the phrase "schizophrenogenic
mother"—literally, the mother who creates a schizophrenic. Such a
mother (no surprise) was described as cold, aloof, hostile, and
rejecting, which in no way describes my mother or my lifelong
experience of her. Yet another theory held that parents caused
schizophrenia when they subjected a child to the so-called "double
bind," a condition where a child receives intensely contradictory
messages such as "Come here, go away," or "You're a good little girl,
but you're really bad."
More current theories about the origins of schizophrenia discount
or even refute entirely the family-transmission view, focusing instead
on the patient's brain chemistry. The rapid expansion of research into
the workings of the human genome has helped shift the focus to a
genetic predisposition for the disease. As with many families, there is
serious mental illness in my extended family as well.
Schizophrenia tends to emerge at different times for men than for
women. For men, the first "breaks" tend to happen in the late teens or
early twenties. For most women, things begin to fall apart later,
usually in the mid-twenties. But before the illness truly manifests,
there is a stage—called the prodrome—when it slowly becomes
apparent to anyone paying attention that all is not well. It's possible
that my own prodromal stage happened during my time with
Operation Re-Entry. Certainly, my experience of the houses giving me
frightening messages on that long walk home from school was a very
loud preview of coming attractions. But the length of time between the
beginning of the disease and its diagnosis (and treatment) can range
from mere weeks to several years, as it had for me. And recent studies
indicate that earlier diagnosis (which could result in treatment at
lower symptom levels) may contribute to a more positive outcome.
Researchers are beginning to explore the benefits of intervening with
young people before the behaviors become destructive and
isolating—perhaps even intervening before a first psychotic break.
The problem is that prodomal symptoms, viewed separately or
together, mirror what many healthy teenagers experience in their
routine passage through adolescence: sleep irregularities, difficulty in
concentrating, vague feelings of tension or anxiety, a change in
personality, and perhaps a withdrawal from the social life of their
peers. Often, parents will realize (after their child has been diagnosed)
that there had been an identifiable period of foreshadowing, during
which time they'd wondered if their child was struggling with
depression. Indeed, these days, teenagers and adults alike are
sometimes prescribed antidepressants to combat this part of their
illness. As I reflect back, Operation Re-Entry may have served a
similar function for me, by giving me enormous amounts of
stimulation and attention at a time when I otherwise could easily have
retreated into my own world, under the guise of being a sullen or shy
teenager.
To make the picture even more complicated, schizophrenia is often
clinically confused with bipolar disease (what used to be referred to as
manic-depressive disorder) or popularly confused with dissociative
identity disorder (also known as multiple-personality disorder). But
treatments for these illnesses range widely. And the potential for no diagnosis at all, or the wrong one, is vast.
I wasn't diagnosed early; I wasn't treated early. I stumbled around
in the dark for years, clutching my Aristotle and negotiating my life as
best I could, until I was blessed by the wisdom and guidance of Mrs.
Jones, and given reason to hope in the future. But with Dr. Kerrigan's
announcement, those days had officially come to an end.
Everyone at MU10 believed that my next hospitalization would be
measured in years, not weeks or months. I didn't believe them, but I
kept quiet about that—there seemed to be no benefit for me in being
candid about my thoughts. My parents and I considered medical
facilities in Boston and New York, but in the end, I argued for going
back to YPI. It would keep me in New Haven, close to school; in fact,
from YPI to the law school it was only a short, pretty walk down a hill.
Maybe I'd even be able to audit a class or two in preparation for
returning the next year; maybe I could even nurture the few slight
friendships I'd begun to make before I had to leave.
It had been a rough three weeks at MU10. I was exhausted and
druggy, and deeply terrified about what would come next. But when I
climbed into the ambulance that would take me away from there, I
was relieved to leave the place behind. Nothing had happened to me at
MU10 that was encouraging or helpful; in fact much of what had
happened was inhumane and ineffective. But Yale Psychiatric offered
a tether to the life I still, somehow, hoped to lead. Thin as it was, that
tether was all I had.
chapter thirteen
T
HE FIRST PATIENT
I met once back at YPI was Eric. An Ivy
League graduate slightly older than I, Eric, too, had spent time on
MU10. "I was there a little over a year ago, but they let me go," he told
me. "I wish they'd made me stay, and then maybe moved me here, like
they did with you. I fooled them into thinking I was OK. And I went
home. And then I killed my father."
Surely I'd misheard him. "I'm sorry, you did what?"
He nodded. "I strangled him."
I was dumbstruck. And horrified. To actually strangle your father?
A laying on of hands that actually kills someone? That was very
different from having thoughts that could kill. Besides, entities worked
through
me; Eric, it seemed, was his own agent.
My parents came back from Miami for the first meeting of my YPI
care team—doctors, psychologists, social workers, and nurses. When
asked about my relationship with my brother Warren, I stopped
rocking and humming long enough to correct the inquiring doctor's
grammar. "No, it's 'between you and me,' not 'between you and I.'" I
can only imagine now (but was completely oblivious at the time) that
it must have been sheer torture for my mother and father to witness
the worsening disintegration of their daughter.
I was placed in YPI's Intensive Care Program—ICP. My days would
be spent in a small room with a staff member and one or two other ICP
patients. I would take my meals apart from everyone else (no
socializing for me in the cafeteria) and sleep in a locked seclusion
room at night. And I was not allowed to wear shoes. That way, if I
escaped the building, staff could be certain I wouldn't get too far. The
New England autumn was deepening outside, and it was getting
colder every day.
For the first three weeks at YPI, I remained as floridly psychotic as
I had been at MU10. My medication was increased, putting me over
the maximum recommended dose forTrilafon. No Valium, though—it
seemed that staff wanted me on meds that actually helped my
psychosis.
Nevertheless, the hallucinations never stopped. Walls were
collapsing, ashtrays were dancing; at one point I went into a linen
closet and invited the other ICP patients to join me in there for a
"housewarming" party, as I laughed and gibbered the afternoon away.
Totally lost in my delusions, I warned of the great horrors and
devastation that I could inflict upon everyone (most notably the ICP
staff) with the power of my mind.
Incredibly, no matter what I said or threatened, I was never
restrained. If I expressed a violent impulse, staff encouraged me to rip
out the pages of a magazine; if I kept it up, staff steered me to the
seclusion room, away from other people. My behavior was no different
from what it had been in the ER, or on my initial visit to YPI weeks
earlier, or during my three weeks at MU10. But the hospital's
response to the behavior most certainly was. Evidently, the question
of whether I was to be restrained or not had more to do with where I
happened to be than how I behaved.
What I'd gained in freedom, however, I lost in privacy. I was kept
apart from almost all the other patients, yet never left alone. Maybe it
was ICP policy—I had my own special staff person, my shadow,
watching and listening, right beside me, all the time. When I ate.
When I slept. When I spoke on the phone with a friend. When I met
with my family. A slight reprieve came when I went to the bathroom;
the staff member lodged a sanitary napkin in the door to hold it
slightly open, then sat down just outside. A staff member even
watched as I took a shower.