The Center Cannot Hold: My Journey Through Madness (35 page)

But I didn't believe them, and look where I'd ended up: a lawyer, a
scholar, with multiple academic degrees and honors, the promising
beginnings of both a publishing career and a teaching career. I was
living on my own, making friends, feeling the warm California sun on
my back every day and being grateful for it. So—surrender? Quit? Stop
fighting? I couldn't. My parents had taught me, Operation Re-Entry
had taught me: No surrender. Fight back. Fight.

The idea that there's any victory in surrender is totally foreign to
almost everyone I've ever known, rich or poor, sick or well, happy or
sad. Surrender feels like failure, it feels like defeat. Even worse, it feels
like
loss—
of self, of autonomy, and of hope. To surrender is to fold up
your tent and slink off the battlefield. It's to say, "I'm not enough. I
quit." And it simply was not in me to do that. Yet.

So I made a plan. First, I found a cognitive-behavioral
psychologist, Dr. Benson, and asked for some suggestions about how
to keep my psychotic thinking in check while I was cutting back on the
drugs. That appointment and our discussion reminded me so much of
Dr. Hamilton at Oxford—he'd helped me get through those first
months of severe illness intact, and Dr. Benson had the same
theoretical orientation that Hamilton did. Cautiously but clearly, she
did her best to explain what might happen in the ensuing weeks. "It

wall be hard," she said, "and there are no guarantees it wall work."

"But I have to try," I told her.

"Yes," she said. "I suppose you do."

I ran through my plan endlessly with Steve, who tried to be as
patient as he could, but who couldn't disguise his skepticism. As
always, he was willing to support me in whatever I decided to do, but
he made it perfectly clear that he thought what I was proposing was a
bad idea. Neither of us saw anything contradictory in his holding both
positions; it was simply the kind of conundrum that our friendship
had always contained—if, in spite of evidence to the contrary, I wanted
to do something the equivalent of jumping off a ledge, he'd caution me
first and then pledge to be there to catch me. "Be careful, Elyn," he
warned. "This isn't like adjusting aspirin levels for a headache."

Since I knew Kaplan would never go along with what I intended, I
told him in a vague, general way that I planned to reduce my
medication, primarily because of concern for the side effects. I hoped
eventually to be off altogether, but would proceed cautiously, I said,
making the smallest adjustments possible; nothing major, nothing
abrupt.

Finally, I talked to Marder, the TD and schizophrenia expert. He
said that if I were determined to lower the meds, I should do so at
about the rate of one milligram every six months. I'd already taken
myself down to six milligrams; at the rate Marder suggested, it'd take
three years for me to be off entirely. Not fast enough. Not clean
enough. I decided to drop one milligram each month—six times faster
than Marder advised, but much slower than I'd ever dropped in the
past. Ideally, I'd be med-free by mid-summer.

And so I began. I was on a mission. At the end I would either be
the Lady of the Charts, or a reasonable combo of Elyn and Professor
Saks. But somebody had to go.

At Dr. Benson's suggestion that spring, I'd joined a support group, the
Manic-Depressive and Depressive Association of Los
Angeles—MDDA. I had looked for a support group for people with
schizophrenia, but came up empty. MDDA was the next best thing. It
met once a week at a nearby hospital.

As apprehensive as I was about what being in a support group
might entail—full disclosure, the presence and opinions of people I
didn't know, men and women who were battling their own demons—it
was surprisingly easy to be there. Nearly everyone in the room was on
medicine, or a combination of medicines, and most of them (even
those who accepted their illness) deeply resented that fact. We were
flawed, we were less, we were not enough. As many problems as we
each had, nobody in that room liked knowing that the solution was in
a little plastic prescription bottle. Or two bottles. Or three. "I'm just
not me when I'm taking those," said one person. "They turn me into
someone else."

Several of the folks at MDDA didn't believe they had an illness at
all, much less one that required constant vigilance and medication.
Every once in a while, someone would come to meetings in a manic
state—for two or three weeks at a time—and then, for whatever
reason, he'd decide to take his medication; by the following week, he'd
look and feel much better. Nevertheless, he'd say, "Next time, I just
have to try harder. I know I can do it next time." I nodded; I knew
exactly what he was talking about.

My dogged insistence on "resistance" wasn't always welcomed by
others in the group, however. One of my closest friends in MDDA was
a man of great intelligence, about my age, who'd been struggling with
his illness for years. Although his intelligence and capability seemed
largely intact to me, he'd virtually relinquished any hope of achieving
anything further in his life. Instead, he'd gone on disability and
worked at various jobs, as he felt the need or desire. Although I
enjoyed the time I spent with him, I found myself increasingly
intolerant of his attitude toward his illness and his work. "I think
you've given up," I said one night at dinner. "I think you've given in.
You're way too comfortable in the role of a mentally ill person."

The minute the words were out of my mouth, I wanted to call them
back. The look on his face was one of transparent hurt, even sorrow.
He had trusted me; now he regretted it.

Kaplan sometimes said that I had a Republican superego when it
came to mentally ill friends. I'd pushed myself for years; that pushing
had helped me survive. So I wasn't yet ready to allow for someone else
what I could not allow for myself. In retrospect, of course, my
intolerance said more about me than it did about my friend. It caused
him pain. And it cost me a friendship.

My first month with a lowered Navane dose went by. I felt...uncertain.

Are other people in the room with me and Kaplan? Things seem kind
of strange. I don't know which side Kaplan is on.

The second month came and passed. Now I was down to four
milligrams. Classes had ended. I could write, but just barely—it's
difficult to concentrate when inch-high men are waging a nuclear war
in your head.
Someone is slipping anti-antipsychotics in my blood
and making me look psychotic. But I'm not. By God, I'll tell you when
I'm psychotic, thank you very much.

With intense effort, I masked my symptoms with Kaplan. To do
otherwise would only prove his point. I sat up in the chair; I controlled
my ramblings.

Yet another member of the MDDA group had tried and failed to
stay off her medication. Yes, yes, she felt better now that she'd taken
her pills. "But I think maybe it just wasn't the right time for my body
chemistry," she said. "I'll handle it differently the next time I try."

That night, talking to Steve on the phone, I said, "I know the
illnesses are different, and the meds are different. But you know, I'm
beginning to think there are some interesting parallels between what
I'm trying to do and what the people in group are trying to do."

"Gee, ya think?" Steve said. I could almost hear the smile on his
face.

"Oh, shut up."

I was down to three milligrams a day. The days and nights were
harder now. The sheer physical effort of containing my body and my
thoughts felt like trying to hold back a team of wild horses. Sleep was
spotty, and filled with dreams that left me awake and sweating in
terror. Nevertheless, I dropped down to two milligrams.

Months before, when I'd been invited to attend a workshop at
Oxford, I'd accepted. It was too late now to change my mind without
making people angry, significantly inconveniencing them, and making
myself look professionally irresponsible. As unhinged as I felt, I had to
go. Once there, somehow, I held on by the skin of my teeth, although
I'm sure everyone at the workshop thought I was one of the strangest
people they'd ever met. By the time I boarded the plane for home, I
was a complete wreck.

When I walked into Kaplan's office my first day back, I headed
straight for the corner, crouched down on the floor, and began to
shake. All around me were thoughts of evil beings, poised with
daggers. They'd slice me up in thin slices or make me swallow hot
coals. Kaplan would later describe me as "writhing in agony."

"Elyn, you need to increase your meds," he said immediately.
"You're acutely and floridly psychotic."

"One. Effort. Number. Explosion."

"Will you take more meds?" Kaplan asked.

I was shaking, but I was also shaking my head. I couldn't take
more.
The mission is not yet complete.

Immediately afterward, I went to see Marder. He'd never seen me
ill before; he'd been under the impression (and I hadn't disabused him
of it) that I had a mild psychotic illness and that my primary concern
was avoiding TD. Once in his office, I sat on his couch, folded over,
and began muttering. I was disheveled—I couldn't remember when I'd
slept, or what I'd eaten. When had I bathed—in Oxford? Before
Oxford? Did it matter, if we were all going to die anyway? Anyone who
walked into that room would have thought Marder was treating a
schizophrenic street person. Weeks later, he told me that's exactly
what I looked like.

"Head explosions and people trying to kill. Is it OK if I totally trash
your office?"

"You need to leave if you think you're going to do that," said
Marder.

"OK. Small. Fire on ice. Tell them not to kill me. Tell them not to
kill me! What have I done wrong? All the explosions. Hundreds of
thousands with thoughts. Interdiction."

"Elyn, do you feel you're dangerous to other people? Or to
yourself?" he asked.

"That's a trick question," I said.

"No, it's not," he said. "I'm serious, I think you need to be in the
hospital. I could get you into UCLA right now, and the whole thing
could be very discreet."

"Ha ha ha. You're
offering
to put me in the hospital? Hospitals are
bad, they're mad, they're sad. One must stay away. I'm God. Or I used
to be. I give life and I take it away. Forgive me for I know not what I
do."

"I
really
think a hospital would be a good idea," Marder said.

"No, thank you oh so very much," I said.

"All right, then, but if I were you, I'd stay away from work for a
while. You don't want your colleagues to see this."

"Thanks, banks, bang, bye. See you soon." Oblivious to the look on
his face, I left.

That night, Kaplan called me at home. "Elyn, Dr. Marder told me
about your conversation. He's worried and so am I. This is serious,
even dangerous. If you want to prevent hospitalization, you have to
take your meds now."

"Oh no, oh no, oh, no," I prattled. "I know that if I just try harder, I
can get off the meds. Meds and beds. I'm going to sleep now."

Somewhere inside my head, it registered that Kaplan was as upset
as he'd ever been. But my mission was not yet over. The Lady of the
Charts was still alive and kicking.

I don't know how I slept that night. It felt as if my arms and legs
were going to fly off in four different directions. Maybe I just passed
out from exhaustion. The next morning, I dragged myself to my
office—my hideout, my refuge.

But I ran into Ed McCaffery in the hall. A few months earlier, I'd
told him about my illness, but only in the simplest terms. Nothing
could have prepared him for the person standing in front of him,
fidgeting wildly and looking as if she'd been caught up in a tornado. I
tried to hang onto coherent thought, with some vain idea of fooling
him, but that thought disintegrated into complete nonsense.

"There's these little people with the explosions. In my head. Voice
mail and interdiction and something must be done. Is someone else in
here? I went there, and then they said 'x, y, and z,' and there's the
killing fields, but who knew about the conviction?"

At first, Ed had smiled a little, thinking I was making some kind of
joke, but as I got more wound up, he figured out what was happening.
"Elyn, what the hell's going on? I thought you were kidding at first,
but you're not, are you? Does anyone else know about this? Is it OK
for anyone else to know?"

"I wouldn't mind telling Michael," I said. "Not the Archangel one.
The other one."

"Stay here," he said firmly. "Stay here. I'm going to call Kaplan.
And Donna." Ed's then-wife, Donna, was a physician.

In a few moments, Ed came back, and as he did, the phone rang. I
picked it up and heard Michael Shapiro, my kind bioethics colleague,

on the other end. "Elyn, how are you?" he asked.

"Oh, ever so well, thank you. But there's interdiction here, and I'm
responsible for many deaths. Have I killed you yet?"

"Give the phone to Ed now, please," he said simply.

I listened attentively to Ed's side of the conversation. "No, no, we
can't call the vice dean," he said urgently. "I've talked to her doctor,
he's going to call here in a couple of minutes. We'll do whatever he
says. But this is serious, let me tell you." Just as he put the phone
down, it rang again. Kaplan.

"I'm not going to take more medicine," I told him. "I can do this, I
just have to try harder." And then I hung up on him.

If I could just exert control over my wayward brain, if I could just
hang on a little longer, my mission to dissolve the Lady of the Charts
would not fail. I was fighting for Elyn and for Professor Saks. I had
never failed anything, I wasn't going to start now.

"I'm going to drive you home," Ed told me. "And I'll stay with you
for a while there. Elyn, you have to take your medicine."