The Center Cannot Hold: My Journey Through Madness (30 page)

I opened the door of my studio apartment. Steve would later tell
me that for all the times he had seen me psychotic, what he saw that
day shocked him. For a week or more I had barely eaten. I was gaunt,
and moved as though my legs were wooden. My face looked (and felt)
like a mask. Since I'd pulled down all the shades, the apartment (in
the middle of the afternoon) was in near total darkness. The air was
fetid, the place was a shambles. Steve has worked with many patients
who suffer from severe mental illness. To this day he'll tell me that on
that afternoon I looked as bad as any he'd ever seen.

"Hi," I said, then returned to the couch, where I sat in silence for
about five minutes. "Thank you for coming, Steve," I finally said.
"Crumbling world. Word. Voice. Tell the clocks to stop. Time is time
has come."

"White is leaving," Steve said somberly.

"I'm being pushed into a grave, the situation is grave," I moaned.
"Gravity is pulling me down. They're all trying to kill me. Tell them to
get away. I'm scared."

Steve spent several days with me as I listened to music and
alternately muttered unintelligibly and threatened to commit violent
acts. I didn't want to leave the apartment, except to see White and put
in an appearance to try and hold on to my job, but Steve gently
insisted that I needed to get out more. I needed to shower, and brush
my teeth, and put on some clean clothes, and eat something. In fact,
we actually met with friends for dinner one night; blessedly, there was
little reaction from anyone as I babbled quietly at the table while
everyone else enjoyed their meal.

And then everything changed again. It turned out that White
wasn't leaving, at least not yet. Yale had convinced him to stay on an
additional year, since it was taking them some time to find his
replacement. The cloud lifted. The devils receded; my head cleared.
When I had settled, White went back to interpreting. "You are
harboring fantasies that this situation has something to do with you,"
he said to me in session. Of course I was. He
was
staying for me.
Wasn't he?

How do I understand why I fell apart so badly at White's telling me he
was leaving? Right now, wherever you are—in your room, in a library,
on a park bench, on a bus—literally hundreds of things clamor for
your attention. On the outside, there are sights, sounds, and smells;
on the inside, you have your thoughts, feelings, memories, wishes,
dreams, and fears. Each and every one of these, both inside and out, is
knocking at your door, all at once.

But you have the power to choose which thing, or combination of
things, to give your attention to. Maybe it's the feeling of the book in
your hand, or the temperature of the room you're sitting in. You shift
and reposition a pillow at your back. You reread the last paragraph on
the page, then turn to the next one. You think about getting up and
walking into the kitchen, maybe preparing a snack. Even though these
actions address only a tiny fraction of what's actually going on inside
and around you, you are able to
choose
them and relegate the others to
the background.

Now consider this: The regulator that funnels certain information
to you and filters out other information suddenly shuts off.
Immediately, every sight, every sound, every smell coming at you
carries equal weight; every thought, feeling, memory, and idea
presents itself to you with an equally strong and demanding intensity.
You're receiving a dozen different messages in a dozen different
media—phone, e-mail, TV, CD player, friend knocking at the door,
ideas inside your head—and you're unable to choose which ones come
to the front and which are relegated to "later." It's the crowd at the
Super Bowl, and they're all yelling directly at you.

Or try this: Place yourself in the middle of the room. Turn on the
stereo, the television, and a beeping video game, and then invite into
the room several small children with ice cream cones. Crank up the
volume on each piece of electrical equipment, then take away the
children's ice cream. Imagine these circumstances existing every day
and night of your life. What would you do?

First, you'd desperately look for clarity, a way out of the
din—something to focus on, something to hang onto. Medication
could be one solution, if your body chemistry tolerates it. You might
also strive to make your life as predictable and orderly as possible—to
literally control the various ingredients that make up your life—so that
you knew ahead of time what was expected of you, what was going to
happen, and how to prepare for it. Your basic goal would be to
eliminate surprises. Slowly, painstakingly, you would rebuild your
own internal regulator, with structure and predictability. What you
lose in the way of spontaneity, you gain by way of sanity.

I'd made it through graduation, a difficult public sector job, the
switch to teaching, and the learning of new skills. And Steve's
departure. And mostly, I'd stayed on my feet. And then, I formulated a
plan for getting on with my life. White was central to that plan, and
the plan was working. I knew how to work with him and what to
expect from him—that provided me with the "something to hang onto"
that gave structure to my life. Of course, I knew change was inevitable;
I'd learned that. But I was also still learning how to navigate it.
White's retirement announcement came as a catastrophic surprise, in
the way that a lightning strike is a surprise. In the time it took for him
to say the words, the structure and predictability I'd built my life
around simply blew up in my face. The regulator—the one I'd created
so carefully in order to replace the
missing
regulator—was destroyed.
Every sight, sound, smell, taste, memory, emotion, thought, and idea
roared in at once and ovewhelmed me.

I had always believed that the breakdown I'd suffered in my first
months at Yale came about partly because I hadn't been able to
successfully complete my work with Mrs. Jones—now, with White's
announcement, something inside told me that history was repeating
itself. But that worst-case scenario didn't happen. Steve came as a
messenger from the outside world, and White's changed plans
restored order to my interior world.

However, had White kept to his original plan of retiring and not
been able to treat me for the one additional year I'd counted on, I'm
certain I would have ended up in the hospital again. I knew full well
that the time would come when White and I would agree that our
work together was at an end. But for me to stay sane, our "end" had to
come at the right time and place. Now that was back to being possible.

It was a frightening slide, however, and my recovery from it,
although a relief, was almost as unnerving. I began to understand that
my continuing well-being depended not only on my own focus and
resolve, but equally on random luck. For someone whose very survival
hinged on structure and predictability, this was
not
good news.

In the summer of 1988, I'd finished my teaching year and was gearing
up for my plunge into the law-school teaching market. I'd completed
the manuscript of my journal article on competency to refuse
medication and was confident that the article was good enough to use
for my "job talk" in upcoming interviews. The plan was back on track.

That Fourth of July weekend, I'd planned a quick trip to Miami to
visit my family. But the night before my flight, I suddenly had a
horrible headache.

As many medical problems as I'd had, headaches had never been
on the list. And this one didn't seem to want to go away. It lasted for
two whole days. My head hurt, my neck hurt, my back hurt, and I was
on the verge of nausea much of the time.

I tried to be philosophical, and patient with my body. I had friends
who got migraines; maybe now it was my turn. Maybe, for once, what
I was experiencing was normal—garden variety stress. Or maybe it
was the heat. Or the humidity. In any case, just as suddenly as it came,
the headache was gone.

Two weeks later, it was back. I was stunned at the pain, and my
inability to get above it. A friend whom I'd made through Steve—a
man named John, who was not only a wise priest but also a gifted
psychiatrist—finally convinced me to see my doctor. I learned later
that John's mother had died young after experiencing symptoms
similar to mine.

The doctor concurred with me—yes, the problem was migraines,
possibly brought on by stress. He gave me a prescription for Tylenol
with codeine. After my appointment, I drove back to Yale to see my
friends at Legal Services; the last thing I remember was violently
throwing up. Even now, I remember nothing else that occurred for the
five days that followed.

According to what I've since pieced together, after I was sick,
Maria and Sally drove me home and told me I needed to go straight to
bed. The following morning, they called to check on me, but the line
was busy. For hours. By noon, they were concerned enough to come
back to the apartment, where they found me in the same clothes I'd
been wearing the day before. My bed had not been slept in, and I kept
repeating one sentence—"Why are you here, why are you here?"
They'd tell me, and a few moments later I was asking them again,
literally unable to keep the thought in my head from one moment to
the next.

Quickly, they bundled me into their car and took me to the
emergency room. Where a completely predictable disaster happened:
The ER discovered that I had a psychiatric history. And that was the
end of any further diagnostic work.

Stigma against mental illness is a scourge with many faces, and the
medical community wears a number of those faces. A psychiatric
patient at a program where Steve once worked went for weeks with a
broken back; none of the medical people the patient saw took the
man's pain seriously—he was a mental patient. So once the ER learned
I had a mental illness and was on antipsychotic medication, the
diagnosis was written in stone: I was "just" having an episode. Poor
Maria was literally jumping up and down, trying to tell anyone who'd
listen that she had seen me psychotic before and that this was
different. But her testimony didn't help—I was a mental patient. The
ER sent me away.

Maria decided that I needed to come home with her; whatever was
going on with me, it was obvious to her that I wouldn't be safe alone.
By the time we arrived at her place, I had no recollection of going to
the ER and didn't know where we were, or why. Trying to get me
settled, she called my parents. My mother flew up from Miami
immediately—my father was recovering from eye surgery and would
follow as soon as he could.

My mother came directly to Maria's, spent half an hour or so there
with us, and then drove me back to my little apartment. She stepped
out for a few minutes to pick something up for us to eat at a
neighborhood store. When she came back and knocked at the door, I
opened it and was surprised to see her and her groceries. "What are
you doing here?" I asked.

"I just went out to get groceries," she said. "Don't you remember I
picked you up at Maria's and drove you home?"

"No. But why are you here? Is someone in the family sick?"

"No, Elyn, no one's sick. Except maybe you. So I'm here to see
what's happening with you, and if I can help."

Five minutes later: "What are you doing here, Mom?" And five
minutes after that: "What are you doing here?" And then again: "What
are you doing here?"

My mother took me back to my internist. At first, he seemed not
terribly concerned—until he realized that I had no recollection of
coming to see him before, discussing my headaches, or picking up a
pain prescription. Immediately, he told my mother to get me back to
the hospital.

So we went to the ER. For several hours, I sat on a gurney in the
hall. Eventually, I answered the standard questions, and once again, it
appeared as if they were going to send me home. But then the
attending physician asked if it hurt when my legs were raised and I
tried to touch my toes with my fingers at the same time. It did.

The spinal tap he quickly ordered came back yellowish, with dried
blood. I was diagnosed with a subarachnoid hemorrhage—my brain
was bleeding.

The mortality from this kind of hemorrhage is about 50 percent,
although I didn't know this at the time. I was thirty-two years old, and
so far, my brain had been both very good and very bad to me.

It was three o'clock in the morning when the brain surgeon walked
into the examination room. He wanted to do a procedure, called an
angiogram, which would allow him to look at the blood vessels in my
brain. Angiograms are risky procedures in any case, but this time it
was absolutely necessary. If the angiogram revealed an aneurism, I'd
need immediate brain surgery.

I do remember hearing those words—with the overhead lights
glaring, the institutional smells and sounds of the hospital, and both
my mother and me in tears. "If anything happens to me, please, you
and Daddy should go on with your lives, and have good lives. That's
what I want." My mother's sobbing became louder. As scared as I was
for myself, I was even more frightened for my parents. If I died...

The angiogram was inconclusive. Often, an angiogram can't detect
the cause of a bleed, at which point the doctors assume that some
structural abnormality—such as a very tiny (thus undetectable)
aneurism or an arterial venal malformation (AVM)—has bled out and
destroyed itself. In any case, I wouldn't need surgery after all. When I
heard that news, I was so relieved I cried almost to the point of
hysterics.

My dad arrived soon after I was admitted to the hospital. I stayed
there another three weeks; within a day or two, my memory had
improved, although it took longer for the headaches to go away. There
was an endless round of tests—CAT scans, MRIs, one more
angiogram, and a spinal tap every day, until at last my spinal sac
simply collapsed, and they could do no more taps.