My Sister, Lost and Found

By Nell Casey

My Great-Great-Grandfather died in Butlers, a hospital for the "alcoholically insane." My great-uncle was institutionalized for importing a château, stone by stone, from France to Long Island without any money to pay for it. A few years ago, my cousin explained to me during a manic episode that he'd chosen to create a safer, more religious universe without technology (except for rotary phones).

My sister, Maud, was 18 years old when she was hospitalized for the first time. Diagnosis: manic-depression. I was 16. When I visited her, she asked me if she had a tampon in her spleen. I reassured her: No, no, Maud, there is no tampon in your spleen. You do not have cancer. Dad is not dead. I used to remember this experience as having a fairy-tale ending: The doctors gave her medication, the strange behavior got a little less strange, and soon after, Maud got well again. I used to think of this as a neat little chapter in our exotic, dysfunctional family life.

And then, in 1998, at 29, Maud was institutionalized again. Eerily aware that she was about to stop understanding reality, she checked herself in to a hospital in Queens, New York. She'd secretly quit taking the lithium that she'd been on for 11 years. She had wanted to feel something from before, an unencumbered emotion, and didn't want to believe that she was a personality made up of medication. Slowly, unfairly, her mind unraveled. This time, I was old enough to see that the story was no fairy tale-it was complicated and meandering, without a clear end in sight. Maud's illness threatened to swallow her life whole-her job, her friends, her spirit-and, certain that I could stop the downward spiral, I stepped in and became her caregiver.

"This is the only place where I can really be myself," she told my mother and me in the hospital visitors' room. We were sitting inches away from the other patients and their families, all of us in tight little huddles of concern. My own sanity must have seemed like magic to Maud in those moments. "You're so strong," she said then, eyeing me with suspicion and awe. In truth, though, I'm like Maud. We are both an erratic mix of fragility and strength. We are both worried. I tip the scales of anxiety often, wondering if someone has been in an accident, possibly killed, when they're 20 minutes late. Or maybe it's me who's dying-what are these shooting pains, these dark undereyes, this odd feeling?

In mobilizing around Maud's roiling emotion, however, I was able to give my own a purpose. I dealt with doctors and paperwork, held conference calls with Maud's employers, made the 70-minute subway ride to the hospital almost every day after work and arranged for others to go when I couldn't. I informed friends and relatives about the situation-saying too much with a kind of dire rapture: Maud burned her arm with a cigarette! They put her in restraints last night! They've got her on constant surveillance-she can't even go to the bathroom alone! A part of me was spellbound, but mainly I hoped that telling friends everything might nudge the story along, encourage it to end.

It's so difficult to explain the absence of my sister during her depression. The remove of personality. The hollow life-lessness of her pupils, cartoonishly ex-aggerated into large black pools from medication. The listless physicality. I watched Maud shuffle down hospital corridors-dirty sweat socks, toes knocking into to the backs of her ankles as she plodded up and down to nowhere. Oh, for chrissakes, pick up your feet! "It's like Maud is dead," my sister's best friend once sobbed on the train after a visit.

Maud was released from the hospital after six weeks and moved in with our mother in Illinois while she got back on her feet. Two months into her stay there, her interim psychiatrist concluded that she was successfully medicated with an exhausting combination of antipsychotic, antianxiety and antidepressant drugs. He felt that Maud should be allowed, as she so eagerly wanted, to return to New York. She was, in fact, mentally grounded again, in the sense that she no longer believed there was a bomb in the bed, but not in the sense that she was back to being Maud.

She came to see me with those hungry, medicated pupils-right away when she came back to Manhattan. I cried in my bed all night afterward. She seemed tiny. Maud's not tall to begin with -maybe 5 feet 3-and she'd lost weight, but alarmingly, her spirit had vanished. She came over that night with all the trappings of a new lease on life, armed with a Gap bag full of clothes and an agitated smile. I watched her try on a pair of khakis and slowly twirl in front of the full-length mirror. The too-tight pants pulled awkwardly against her lit-tle body as if everything now was con-spiring to show how difficult it would be for her to reenter this world. There was enough of her there to imitate a function-ing, viable person (able to shop at the Gap), but the sum of these parts only added up to a ghostly version of the person she used to be. For the first time, I was struck by a flash of bottomless doubt. Maybe this is it. Maybe this is as well as she gets.

Maud's "recovery," as it turned out, was wishful thinking on all our parts. Once in New York, she became more withdrawn, given over to an elusive, spooky mood. She was quiet in the scariest possible way, staring longingly at me, as if she would join me if she could. When her depression did find a voice, it opened up new worlds of insecurity: Should I live in New York? Can I make it down the stairs? Have I said the right thing? In the right language? We had these conversations on the phone, sitting on the sidewalk (when she was too seized with anxiety to continue down the street), in our cramped apartments. I gave practical, soothing answers, but I was frighteningly close to being devoured by the same self-doubt. I had the taste of this thing on the tip of my tongue.

I wanted to be there for Maud. I knew that was what she needed (the one thing everyone says about depression is that stubborn, consistent support helps even when it seems like it doesn't). But I didn't always have the sturdiness of my own character to rely on. Sometimes it felt like a trade-off: I had to throw my life over in order to save hers.

"I don't know who I am, what my personality is," Maud worried throughout her depression. I willed my self to remember something from the Maud before, but I could only get at the facts-she looked cutely chubby in her third-grade yearbook picture; her boyfriend in college played the accordion; she had written a book of short stories called "Girls, Girls, Girls." I knew she needed me to describe her essential nature, to remind her who she used to be. "You're filled with opinions," I explained. "You've written a novel. These things make up your very distinct personality." I can't remember you from before.

In early November a friend recommended a psychiatrist for Maud to see for a second opinion. Maud and I went together. "It's not exactly reassuring," Noelle began, "but if I had a nickel for every time I treated this kind of depression" She described Maud's state with such blasé understanding that I was forced to see how common our insular high drama must look to the rest of the world. I watched Maud ask earnest questions about why she still didn't want to get out of bed in the morning, why everything looked and felt so dull. At times, I'd wrestled with the suspicion that Maud was clinging to her sadness, refusing to get well. But now her practical tone ripped right through my petty mistrust. Noelle said that Maud would start seeing the world in color again. The new medication: should, in fact, start working by November 11, if not sooner.

At some indiscernible point (after November 11), things did start to get better. Maud cooked dinner for friends. She went on a few dates. She got an agent for her novel. She stopped telling me about her daily medications. In December, at her 30th birthday party, she wryly commented that she hoped the coming year would be better than the last. It marked a new, hopeful phase. The clinical depression was gone, and yet Maud's mood still seemed frail. She'd been places I am still trying to imagine.

Two months later, approaching the door of an East Village bar, I saw a beautiful woman in a belted leather jacket. She was the kind of woman who throws me into a superficial tizzy, makes me reevaluate my life. I shouldn't work such long hours at the office. I should really dress up more for these parties. I need a leather jacket. As I got closer, I saw that it was Maud. She was speaking animatedly with our friend Hank about her novel. Editors were interested, her agent was organizing a conference call to discuss it the next day. Maud's eye, were lived in again, wise. Yes, I remember now: This is Maud.

I had a teetering, uncharitable moment-That's it? You're better now? I wanted nothing more than to have Maud back, but I didn't want to forget where she'd been. Happiness was no longer an expectation, something to strive for, but was actually right there in front of me, plain and simple, ready to be taken for granted again. Here was happiness: Maud standing before me in muscular exuberance. But I needed to know that if we let her sadness go, it wouldn't be roused again. It took me time not to want to needlessly slip the story into my conversations, yell it out all day long, to sternly remind Maud and myself how hard things had been. Until slowly it dawned on me that Maud's sadness wasn't ever going away-the last eight months would be with us forever. The experience was right there in every swell and turn of my consciousness, smuggled always into our everyday lives, There it was in the curve of Maud's outstretched hand, in her self-assured voice talking with Hank, in her hard-earned, knowing demeanor.

Yes, I remember now. This is Maud.

IS SOMEONE YOU LOVE STRUGGLING WITH MENTAL ILLNESS?

If so, the resources below will help you offer support.

TO READ: Helping Someone With Mental Illness, by Rosalynn Carter with Susan K. Golant (Times Books, Random House, $15); The Burden of Sympathy: How Families Cope With Mental Illness, by David Allen Karp, (Oxford 6niversity Press, $25); Imagining Robert: My Brother, Madness and Survival: A Memoir, by Jay Neugeboren (Henry Holt, $15)

TO LOG ON TO: nami.org (The National Alliance for the Mentally III). This site offers a list of caregiving support groups throughout the United States. NAMI also runs the Family-to-Family Education Program for caregivers, taught by trained family members and available nationwide.

TO CALL: National Mental Health Association, 800-969-6642; NAMI Hotline, 800-950-6264

Copyright 2001, Nell Casey. Reprinted by permission.