MY SISTER, SALLY, JUST TURNED 53. I AM EIGHT YEARS younger, and, partly because of that age difference, Sally and I were never close. She was away for much of my childhood, first to boarding school, when I was 8, and from there to a mental hospital, where she lived for almost two years. I did not see her again until I was nearly 12.
My life was easier during the years Sally was away. When she was home, she and my mother fought incessantly, or my parents fought about how to handle her. I stayed as far from the fray as I could playing outside or at the homes of my friends. When Sally was gone, the house was quiet and the world was calm. Best of all, I could reclaim my parents’ attention. Sally and I spent no time together, as far as either of us can remember, except when forced to at the dinner table, or on car trips to a state park where we vacationed. There were also some fond moments. I remember her singing “Sweet and Low” to me as we sat on her bed looking at comic books one snowy winter evening. But for the most part, I tried to distance myself. I would not eat ketchup; I would not go to the library; I would not stay indoors except in the worst weather. Why? Because Sally did all of those things, and Sally was not someone to emulate. Who knew what made her so awkward around people? Who knew what made her lonely? I avoided anything that might be the cause of her sadness.
touch with them and soon began to exhibit some paranoid symptoms. She was, however, physically well and in a safe place. “I think some people are going to have a new respect for your diagnostic abilities,” Rhonda told me cheerfully. Sally remained manic for almost two months. During that time, she exhibited amazing coping skills, finding shelters for herself when she had worn out her welcome at one place or another, and managing to get by even though she was deteriorating physically. She lost more than 90 pounds. Whenever she received her regular government disability check, she managed, within a day or two, to spend it all. She was seen walking in traffic talking to herself. She was convinced her former landlords had AIDS, that her social worker had AIDS. She called my office repeatedly until I told her she had to stop. Once, missing me, she ran through a list of grievances to the puzzled editorial assistant, who hardly knew me. She showed up on the doorsteps of elderly family friends, asking for money. She had lost her upper plate, her clothes were soiled, she seemed frantic and her appearance and manner frightened them.
She was not committable until the day when she was, finally, committed.
All of this occurred in Arlington. I was living then, as I am now, in New York. At my job, I spent all day on the phone, using what we called our little hidden benefit the long-distance lines to call her various doctors and workers during the only hours they could be reached. I did my work at home in the evenings. On weekends, I drove to Virginia, cleaning out an apartment of Sally’s after she had abandoned it, moving her belongings to storage, arguing with her about taking medicine, and becoming enraged at the trouble.
If my mother had been alive, none of this would have happened. She would have been on the case from day one, monitoring the doctors, getting Sally the right treatment, haranguing social workers to do all they could, haranguing Sally to get up, get moving, get medicated.
I couldn’t do that. For one thing, I lived five hours away. For another, I was Sally’s younger sister, not her mother. And, perhaps most important, I had made a decision many years before that my life was viable even, perhaps, worthwhile and that I would not sacrifice it for the sake of anyone else. I felt that my mother, a vibrant person, had gotten precious little from her seven decades on Earth. I wasn’t going to take care of Sally the way she had. I wasn’t going to ruin my life.
What happened, in the slow way these things happen, is, I think, that after Sally bottomed out, she realized that the safety net mother had always provided just wasn’t there anymore. After she was stabilized again, she turned all her energy toward staying well. Of course, she was not without family. She had a sister. I wasn’t the same I probably wasn’t as good but I was there for her, insofar as I could be there and also keep my own life hanging together.
And Sally was not without other help. She had a basically good social support system in which she was valued and her autonomy respected. When she was finally released from the hospital after her commitment, she moved to the group home. After a week, she said she would like to move in the piano Mother had left her. Rhonda Buckner, with her usual good sense, told me it would be better to wait until she knew if she was happy there and could be sure she would stay a while. “She’d better stay,” I growled. “I’m not moving her again any time soon.”
Rhonda just listened, and then she said, “She’s an adult, Peggy. If she wants to leave, she’ll leave, and there’s nothing you can do to stop her.” I had to admit she was right. And when Sally did leave the home, two years later, I had learned my lesson well enough that I didn’t hold my breath, waiting for it all to fell apart. I didn’t even think about that possibility, because it wasn’t happening now. Now, she was moving to an apartment. If she couldn’t make it on her own, that would be then, and I would deal with whatever share of the move fell to me at that time. It’s been more than two years since that move.
SALLY NOW LIVES IN HER OWN apartment, a Section 8, or federally subsidized, one-bedroom in a pretty area of Arlington. She lives with her boyfriend, Tim, whom she met in the warm, well-run group home where they used to live. In the last few years, Sally has worked at Kmart, Sears and at a small clothing store after more than 15 years of complete disability. She takes her medication faithfully and finds that the ones she’s on now have few of the side-effects that bothered her so much with others she’d been prescribed in the past. Sally and Tim both participate in various ways in programs for people with mental illness at the local hospital and at a clubhouse nearby. Last year, when Sally was feeling shaky, she enrolled herself in a two-month outpatient therapeutic program at the hospital’s mental health center.
In other words, Sally is doing great, far better than anyone would have predicted possible a decade ago, when she was lethargic, depressed, anxious, almost friendless, resistant to treatment and often hopeless.
I, too, am doing well. I worry, but not the way my mother did, because I’ve seen Sally come through the worst and not only survive but, with help, reach new levels of competence and happiness.
I’ve learned a lot during these six and a half years. When new members come to the AMI meeting I go to and I still find it valuable and comforting, after half a decade, to talk with others like me I always tell them not to try to predict the future, not to waste their lives in dread, not to assume they’ll be alone, to keep up hope. I feel my story is, in a way, emblematic of why hope is so important. If I’d had it in my youth, I would have lived very differently. It had never occurred to me that I would have the help that I do that I would have my AMI group, that there would be groups like the Personal Support Network, a private social services agency designed to care for mentally disabled clients whose families are either gone or at great distance. It had never occurred to me that I would be able to talk about mental illness without embarrassment or shame. I had to wait until I was almost 40 to start a different life, one based on realistic hopes and day-to-day living, and, I have to say, I regret not being able to do it sooner.
Last year, Sally and I were taped for an “Oprah Winfrey” show. Sally, filmed at her home in Virginia, was composed, thoughtful and articulate. I was taped in the studio in Chicago. When I got there, a producer directed a makeup artist to straighten my hair. I didn’t protest, but I immediately became so self-conscious that I could barely speak. I sat on stage in a stupor, at a loss for words, watching Sally on a monitor expound gracefully on what it means to be mentally ill. Because I’ve been in a position to take care of her in some ways, I haven’t often felt like Sally’s little sister, I’ve often felt like the older one. But this time, I just sat and admired her, in awe of her aplomb, the way I might have done thousands of times if she hadn’t been ill. And I had the thought, for the first time in my life: I wish I were like her; I wish I could do this the way she’s doing it.
I can’t say exactly how that admiration worked to change our relationship, which had already improved tremendously over the last half decade, but it was as if it momentarily restored the natural order to our sisterhood. In the late 1960s, in a sermon on equality, William Sloane Coffin said: “Am I my brother’s keeper? No, I’m my brother’s brother.” His concept was one that I instinctively understood and long for: a relationship of mutuality, based on respect, that neither diminished nor augmented either participant. It has taken Sally and me much of our lives to find something like that for ourselves. It has been a long haul, and we still make mistakes and relearn old lessons, have arguments and apologize, draw closer and then draw apart. But we are unquestionably part of each other’s lives now, for better and for worse. We are family.
Margaret Moorman is a free-lance writer living in New York with her husband and daughter. This article is adapted from her book, My Sister’s Keeper (W.W. Norton and Co.). Her next book, Light the Lights!, is a picture book for children about celebrating Hanukkah and Christmas in the same family. It will be published by Scholastic in the fall of 1994.
When Sally and I were growing up, in the 1950s, in Arlington, Virginia, any kind of differentness, even divorce, carried immense stigma. So my parents lied to the neighbors about Sally’s hospitalization. She had been away at school, and, to the neighbors, she still was. If any of them wondered why she never came home for Christmas, Easter or summer vacations, they didn’t ask. My mother and father took out loans to pay for Sally’s treatment, and if any of my father’s colleagues wondered why he started carrying a sack lunch instead of eating in the office cafeteria, they didn’t ask. Nobody asked. Nobody told.
My parents never talked to me about Sally’s illness. They couldn’t have explained it to me even if they’d wanted to, for no one adequately explained it to them. My mother and Sally had always fought, and Sally’s mere presence seemed to irritate her. When Sally went into the hospital, she refused to see Mother for a long time, allowing only our father to enter the hospital for visiting days. It wounded Mother, and salt was rubbed into the wound by doctors who routinely blamed her for Sally’s problems, telling Mother she had to let Sally grow up, let Sally be herself, learn to accept Sally, leave Sally alone. This troubled her profoundly, and made her even more reluctant to bring up the subject of Sally’s hospitalization which became our family’s great secret and a debilitating source of shame for me.
Lying implies shame, and I was told to lie, to say, as my parents did, that Sally was in school. And when Sally returned home, finally, and bravely finished up her last year of high school and went on to study at a nearby college, I was sorry she was back. I saw her as a disturbance, an embarrassment. She seemed to speak in non sequiturs that caused conversations to jerk to an abrupt stop. She was overweight and ungainly. She had no friends. I was entering adolescence, and I wanted friends neat friends. I was afraid that Sally’s strangeness would get in the way of my social life. For me, Sally was a liability and I all but stopped speaking to her. If I could behave as if she were invisible, she might disappear.
As a teenager, I earnestly pursued the fantasy that I was an only child. Denying Sally’s very existence enabled me to concentrate on trying to make my own life seem as normal as possible, but it eventually took a toll. I couldn’t bear to be alone, and I was often unable to concentrate. In my early teens, I began to have trouble studying, and, by the time I reached high school, I could barely keep up with my classes. I was often deeply depressed.
OUR FATHER DIED OF A HEART attack at the age of 53, when Sally was 23 and I was 15. Our house became a place of quiet sadness, as Mother retreated into a cocoon of grief and silence. Sally and I had long since stopped speaking to one another, so now no one communicated at all. Our mother’s depression was so consuming that it was decades before she told me, “I know that it must have been hard on Sally and you too.” Our father’s death was the end of family life, such as it was, and it was a loss so profoundly shocking for both Sally and me that neither of us was able to grieve for him for many years. Our mother was unable to comfort us she had not even grasped that our feelings might be similar to hers.
For a time after our father’s death, Sally mustered all her strength and did surprisingly well. She graduated from college and took a job as a clerk with a government agency in Washington, D.C. When the agency moved its offices to suburban Maryland, Sally moved out of our childhood home for the first time since her release from the hospital. She “broke down,” in her words, “almost immediately,” becoming deeply depressed and anxious. She could not work and was eventually sent to a hospital for a short stay. During the next 25 years, she was hospitalized more than 25 times, sometimes voluntarily, sometimes not. She would occasionally come home to live-always against the advice of her doctors, who, although they criticized Mother for her overinvolvement, were unable to place Sally in an environment in which she could succeed in living independently. As long as Sally lived at home, she remained stable enough, though she spent long hours behind her closed bedroom door, dozing in a darkened room.
I went on to college, and then to graduate school, lurching along in a haze while appearing to be more or less in control of myself. I married at 22 and divorced at 25. I had long periods of depression, during which I prayed for the courage to kill myself. I kept this last to myself.
While away at school and throughout my twenties, I begged Mother to visit me, but she said she was too worried about what would happen if she left Sally alone. I think she was also too depressed herself to make the effort. When she wasn’t actively involved in caring for Sally, she was still unavailable. “I can’t leave Sally she’s doing so well,” she would say. Or the opposite: “I can’t leave Sally, she’s feeling pretty rotten right now.”
I encouraged Mother to get help, but she refused. “There’s nothing wrong with me,” she would say angrily.
“Therapy isn’t to fix you, Mama. It’s to help you. It’s something you do because you deserve it, not because you owe it to anyone else.”
Mother refused, continuing her fearful, paralyzed vigil. She was caught in a cycle that began with relief when Sally was just out of the hospital and doing well. Next she would try to forget about Sally for a while in order to enjoy her own interests working, reading, going to plays with friends. Then guilt would set in, followed closely by apprehension. That would usually prove an accurate predictor, and, after an exhausting spate of rescue work, the cycle would begin again.
Mother kept the worst from me, telling me about each episode of illness after it was over. “I want you to be happy,” she would say.
Happy? I thought. True, I was 3,500 miles away in Seattle, but who could be happy? “It makes me feel like I’m not part of the family, Mother,” I told her.
“What’s wrong with that?” she answered. “Thank the Lord for small favors.”
Over the years, Mother clung to the belief that Sally would get “well.” Each time Sally moved from an apartment to a rented room, or checked out of another hospital and into a halfway house, Mother would be filled with hope that this time would be the charm, this time Sally would “settle down.” Mother was, as she herself later said, “like Cleopatra queen of denial.”
I tried to argue with her, tried to get her to see the pattern in Sally’s illness, and tried to get her to lower her expectations about Sally’s potential for jobs, for marriage, for the future.
“If I felt like you, I’d kill myself,” Mother said. “I’m an optimist.”
She missed the signs of depression in me, her well and happy, outgoing and successful child, because I never revealed my suicidal thoughts and always appeared to have a new and plausible plan for my future. To the day she died, Mother was proud no, thrilled to introduce me as her daughter, as if to say, “See? I wasn’t so bad, after all.” She depended on me to clear her name, to show the world she was capable of being the mother of a healthy child. She didn’t see that I was not so healthy inside I was happy enough for her. “Peggy could always take care of herself,” Mother liked to say. “I never had to worry about her.”
In college, I had consulted a school psychologist occasionally, but vigilantly guarded my deepest fears. I know now that I was terrified of becoming mentally ill myself and had been most of my life. I was afraid that if I sought help in a serious way, I would be “like Sally.” It wasn’t until I was in my thirties that I began therapy in earnest, perhaps because, by then, some small part of me felt confident that I would get better, not worse.
As I focused on my career, I gradually shed much of the sadness that had dogged me since childhood, but I continued to hide, even from myself, many of my feelings about Sally. Then, one day, in the office where I worked as an editor, I caught an embarrassing glimpse of my private iceberg.
I was idly chatting with some of the other editors while making corrections on a set of galleys. The conversation turned to families, and one young woman, a friend, complained about being a middle child an invisible cipher, she said, stuck between two older and two younger siblings. Someone else said how different it was to be an only child. Without looking up from my work, I chimed in to agree. Yes, I said, it certainly was different.
There was a moment of silence. Then my friend said gently, “But Peggy, you have a sister.”
Part of my amnesia, I think, was due to buried grief for my idealized picture of the older sister I had never had, for Sally’s lifelong struggle, for my own unhappiness and part to a fully conscious dread of the time when, I anticipated, I would have to pay attention to Sally every day. The dread increased throughout my late twenties and early thirties. I thought of my mother, still young in her early seventies. Whenever I tentatively imagined her death, and myself returning to Virginia to take over Sally’s care, I instantly thought of suicide. I was convinced I would have to give up my life; I just wasn’t sure which way I would do it.
In spite of my efforts to disown Sally emotionally, I couldn’t help identifying with her. She was my parents’ child, and so was I. We had some shared history: we both loved the house we had grown up in; we remembered the same pets; we shared the same relatives. We were in this vale of tears together, and, in spite of myself, I felt my bond with her. Otherwise, I would never have felt so much sorrow on her behalf, or so much fear of turning out to be like her. My sister, myself: The revulsion 1 felt when I witnessed any of Sally’s missteps her inability to manage her money, her packrat tendencies that led to eviction notices was the flip side of a sympathy so intense I couldn’t talk about it.
As I progressed in therapy, I began talking about Sally a little more and I was told about the Alliance for the Mentally Ill (AMI), a grass-roots support and advocacy group started by the families of the mentally ill almost two decades ago. I decided to go to a support group.
One evening after work, I found myself in a roomful of parents talking about their ill children. When it was my turn to speak, I described Sally and said that I dreaded the day her care would fall to me. No one tried to allay my fears. I got the impression that they looked on me as ungrateful for the freedom I then had, unhelpful for all I did not then do, and unreliable because I was not willing to assume the mantle of caregiver to Sally. During the two hours I was in that room, my guilt increased steadily.
Some years later, I found the Sibling and Adult Children’s Network, a branch of AMI. There, everyone talked about what I had assumed were my own particular problems: dread of taking over, fear of having deeply troubled children, fear of relationships with lovers who might not understand or sympathize, inability to develop our own lives because we were expecting to have to drop them at a moment’s notice to intervene in a crisis. When I aired my “secrets,” which were commonplace in this group, I felt for the first time that I was with people who knew exactly what I was talking about. There was immense comfort in simply being in the room with my peers.
In 1987, my mother had a sudden, massive stroke and died, a few weeks shy of her 75th birthday. She died painlessly,
sitting in an armchair. Her last words were, “Someone call Sally.” She had been on her way to pick up Sally to take her grocery shopping and she knew Sally would be waiting. My mother’s last moments were spent as her life had been largely spent: worrying about her firstborn.
I spent the days following Mother’s death in a frenzy of activity getting death certificates to enclose with requests that credit cards be canceled, annuities stopped, bank accounts closed; getting myself approved as executrix and as Sally’s trustee; planning a memorial service and dealing with the funeral home. I seemed to feel that keeping Sally on schedule was the most important thing in the world. I insisted she continue to go to the mental health center every day, however bad she was feeling. I heard myself ordering her around as if I were Mother, and I watched her respond as if it was a comfort to her to have me riding herd on her. I think now that I was trying to become Mother, not just because I thought I needed to step in as Sally’s overseer, but also because it was a way of keeping Mother alive. For a little while, it worked for both Sally and me.
Then, about a year later, Sally became seriously ill. She had been suffering from intense nausea, and was finally taken off the drug that was causing it by a doctor in a private mental hospital to which she had admitted herself. Then, against my fruitless protests as well as the firmly worded advice of the hospital’s own social worker, Sally was released with no substitute medication. Two weeks later, her voice sounded odd to me on the phone. I called her workers at the mental health center and at a halfway house where she was then staying. I called her landlords. I explained that I thought Sally was getting sick, that she sounded manic to me. Everyone I spoke to assured me that Sally was just terrific, happier than they’d ever seen her. Was there some reason I might resent her happiness? Why was I so suspicious?
Desperate, I called Sally’s primary social worker, Rhonda Buckner, director of the Personal Support Network, at home. Rhonda said something to me for which I will be forever grateful. She said, “Your instincts are probably right. You know her better than anyone.”
Sally then disappeared. Rhonda took a wild guess as to where she might be and was, as usual, right. It would probably have taken Sally’s other caregivers a week or two to discover her whereabouts. Meanwhile, Sally remained completely out of