I remember repeating a little chant to myself as a teenager and young adult: "Open your eyes, world, and see / Not the illness I despise / But me."
At the time I was struggling to cope with the confusing and often terrifying reality of mental illness in a world that seemed unready or unable to see the vulnerable, frightened girl beneath the myriad strange and confusing symptoms. How could I explain that despite the fact that I sometimes behaved in a way that most people dismissed as crazy, I was just as perplexed -- and probably more frightened -- than any observer could be by a mind that seemed to have betrayed me, thoughts that rushed out of control in unpredictable ways, and an increasing conviction that I had lost my mind forever. Above all, how could I let people know that though I appeared to have gone over the edge, to a place where "regular people" never venture, I was still a person whom they could relate to, if only they could understand?
Things fall apart; the center cannot hold / Mere anarchy is loosed upon the world. -- W. B. Yeats
I gazed out the window at the rather ordinary view below of comfortable-looking homes, manicured lawns, and people going about the business of living. It all seemed so reassuringly predictable, and I was lulled into a sense of calmness and security until I recalled my current reality with a sudden jolt. My heart caught in my throat, and a sharp, profound sadness struck at the very core of me, engulfing me. I used to be just another regular person, I thought.
Just a few months ago I had been an ordinary person living an ordinary life, indistinguishable from any other observant high-school girl busily involved in schoolwork and a lively social life.
I turned away from the small window with its thick black bars and heavy glass, and the painful reminders it afforded me of life "on the other side." Then I gazed bleakly at my surroundings. The room was small and bare, with a metal-frame bed nailed to the floor, stiff white sheets, and a scratchy wool blanket. There were no other furnishings, no pictures or knickknacks, nothing to give even the illusion of home. The heavy metal door was closed, though there was a small window toward the top that could be used to glance in at me.
Diary entry: I have not stepped out of this small room for 120 hours, excluding the minute it took me to get my lens case. Now I know why so much fuss is made about solitary confinement -- it's a painful ordeal. I got in here Friday afternoon and tomorrow is Friday again. I don't even know whether or not I hate it anymore. I'm apathetic. Do I have any higher aspirations than a one-bed room in a mental hospital? Here I'm safe. I've proven to myself that I can't handle the swirling, rushing whirlwind outside. I'm at the depths of despair.
Just outside the door, I knew, sat my one-on-one -- a staff person assigned to monitor particularly misbehaved patients 24 hours a day. How had I misbehaved? I had tried to put an end to my suffering. How being alone in a prison-like room, with no diversion and nothing to occupy me but my own depressed mind, was supposed to make me want to live was unclear. With time, I would understand that, in fact, the purpose wasn't to make me better; it was about keeping me under control. The fact that the "treatment" only deepened my desire to be out of this world seemed to escape anyone's notice.
I am in a tunnel
Engulfed in darkness.
They say there is a light ahead.
I strain my eyes
But I cannot see
Beyond the sea of blackness.
This is the first stanza of a poem I wrote at the time, trying to express my overwhelming, unremitting sadness, hopelessness, and despair. The type of depression I was experiencing responds neither to logic nor to reality. It is persistent and insistent and causes its victims to view everything around them in the most negative light possible. The day can be bright, hazy, or gray, but to a mind depressed, it is always black. Persuasive arguments, cajoling, threats, encouragement, or attempts to shift my perspective were all equally ineffective. My mind seemed to have lost its capacity for positive thinking as irrevocably as the loss of a limb.
All this began way before I landed in my hospital room. I remember attending an engagement party that took place in my high school for a new kallah in the 12th grade, a few weeks before my hospitalization. It was a lively party with food, dancing, and the kind of excited energy that teenagers so readily supply. I pretended to be interested and did a pretty good job of not standing out. I had made sure to button my Oxford uniform sleeves below the wrist and took care not to let the sleeves pull up. That way nobody would notice the Band-Aid I had placed on my wrist. Nobody would know about my pain. Nobody would think I was crazy. I could go on being just another high-school girl among so many others.
My strong desire to be "just another high-school girl" and not considered "crazy" was intensified by my mortification toward the end of the previous year, when I had my first encounter with a psychiatric ward. Mental disorders manifest themselves through the particular characteristics of the culture in which the person has developed. Having grown up in a religious neighborhood, my obsession took on a seemingly harmless, and perhaps even admirable, desire to become more religious. So my general, all-encompassing anxiety and sense of helplessness, and my compulsive desire to regain control, were directed onto the one area of my life where I felt control was possible. I wanted to do every mitzvah and keep every detail of Jewish law in the most exacting way. I wanted God to be pleased with me and thought the way to accomplish this was to make my observance of each mitzvah increasingly more complicated and difficult.I didn't simply kiss each mezuzah I saw; I kissed it many times, each time reciting an additional prayer.
My mind was slowly slipping away and I began to experience mild hallucinations.
I also began to experience what I would later recognize as delusions and mild hallucinations. I would look around the classroom and convince myself that certain girls were holy tzaddikim with a special connection to God. I made these determinations judging by a special glint I "saw" in these individuals' eyes. Very few made the mark. Most everyone's eyes seemed blank.
My mind was slowly slipping away, yet I don't recall seeking help, nor do I recall anybody trying to reason with me. My longer morning prayer sessions in school progressed from an extra half-hour to an extra hour and a half. I would retreat to an isolated corner in the school building to complete them. I do remember encountering some resistance to this behavior, but I was for the most part allowed to continue uninterrupted until, finally, things came to a head.
One day I decided to pay a solitary visit to the school library. Surrounding myself with piles of Jewish books, I opened each one in turn and thought I saw various passages and sentences lighting up before my eyes. The words jumped out at me. I concluded that it was my divinely appointed mission to bring these passages to everyone's attention so -- helping myself to the use of a photocopier -- began frantically photocopying massive amounts of material. Then, using a highlighter and pen, I furiously underlined the sections that seemed particularly crucial and began taping the photocopied pages in highly visible places around the room, forming a virtual collage of messages that I just knew God wanted me to share. In the midst of this frenzy, a teacher happened to walk into the library, took one look at me and the whole scene, then walked out. She must have alerted the administration because shortly thereafter I was sent home under supervision.
At home, I continued imposing many new self-created rituals and demands on my overworked mind and body, all ostensibly in the name of becoming a better Jew and closer to God. My family undoubtedly noticed my growing frenzy but found my behavior so confounding that they were at a loss as to what to do. It wasn't long before my efforts to control my actions escalated into a consuming effort to control my thoughts. Now, not only could I not speak lashon hara, I was also forbidden to think it. Eventually I only allowed myself thoughts I considered holy and directly related to establishing a connection with God. The demands I placed on my mind were so extreme that I could no longer walk about and perform any normal daily activity. I concentrated all my energies on my burdened mind and became increasingly dysfunctional, to the point where I simply retreated to my room and rocked back and forth for hours, desperately trying to keep the "good" thoughts in and the "bad" ones out.
By now, some of my bewildered family members were trying to cajole me out of my frenzy, with invitations to join them at normal daily activities. But I was too far gone. I was enslaved now to my obsessive and ritualistic thoughts and could not respond to their desire to help. I had stopped eating, drinking, and sleeping, focusing all my energy on thought-control. I retreated completely into myself as my mind unraveled. After a few sleepless nights, I began experiencing vivid visual hallucinations. Suddenly there was a waving American flag and then a resplendent bird on the wall, then a dark, shadowy monster. I decided the monster was the yetzer hara, the evil inclination, and that I must fight it. So I attacked my hallucination, physically wrestling with the dark image in my room, never comprehending for a moment that this self-created symbol of evil was but a product of my disintegrating mind.
Somewhere about this time, the thought of a mental institution entered my mind. The idea presented itself not as a place I might need to go for help, but as impending punishment for my sins. I became convinced that I would go to this disturbing place that I envisioned as a deep black pit of despair, replete with crazy, gesticulating, and wild-eyed inhabitants. A sharp terror struck the core of my being as I became increasingly frightened that I would spend the rest of my life in a holding cell for lunatics.
Sensing my helpless mind's loss of control over itself, I became increasingly frantic and focused on doing whatever I could to stay in control.
I have often wondered how this downward spiral came about in such a short period of time. I think that as I increasingly sensed my helpless mind's loss of control over itself, I became increasingly frantic and focused on doing whatever I could to stay in control. This took the form of being "more religious" and the idea that it would be possible to please God to the exclusion of all people in my life. Much like the symptoms of anorexia or obsessive-compulsive disorder, my desperate need to manage an increasingly disordered mind was not related to any real process of becoming more religious. Genuine spirituality does not lead to darkness, dysfunction, or madness. If it leads to madness, it's obviously not spirituality.
When I eventually ended up on a psychiatric ward, after the involvement of the local Hatzalah who were contacted by my increasingly frightened and bewildered parents, I assumed I had finally arrived at the institution of my worst nightmares.
"Grab her arm!" "Hold her down!" Instructions whirled around me as I was strapped to a chair on wheels and my arms were restrained. I put up little resistance, still focusing on turning all my thoughts heavenward, determined not to be distracted. By this time, the thoughts were disjointed and torturous. They continued incessantly, spinning increasingly out of my control. A needle was jabbed into my arm as I was unknowingly administered my first dose of psychiatric medication. I didn't know what it was, nor did I care, as I concentrated on the spinning whirlpool of thoughts in my mind. I was wheeled into an elevator and led to a small white room. I would later learn that this room was especially reserved for severe cases and therefore situated right near the nurse's station. I was placed on a bed, and thick white straps of canvas-like material were wrapped tightly around my body. My wrists and ankles were fastened to the headboards with metal restraints, closely resembling handcuffs. Encased and immobilized in my first straitjacket, I was a mummy-like figure, completely powerless and helpless. I could not so much as scratch my nose or move a strand of hair from my eyes.
Then I noticed something strange and wonderful. My thoughts -- all those swirling, urgent, nonstop thoughts -- had vanished. My mind was clear. My feeling of relief was huge, and I began to realize how tortured and entrapped I had been by my own mind. I thought they would now release me. When they didn't, I turned my attention to my physical state. My muscles began aching. I started itching in places I could not reach. I began to feel desperate and tortured.
Twelve hours elapsed from the time my mind cleared to my eventual release -- twelve desperate, torturous, terrifying hours. Nobody tried to talk to me. No one inquired as to my state of mind, which they were supposedly treating. Nobody thought it worth their while to let me know why I was tied up, or how long I would stay that way. I was free to imagine the worst. How long could they keep me confined?
This was my first of many encounters with the random brutality prevalent in many psychiatric hospitals. I emerged from this experience shaken and subdued. My mind was indeed cleared of obsessive thinking, but now there were other problems. I could not speak coherently. I could not express my thoughts. I was reduced to mumbling and the occasional one- or two-word sentence. I knew I appeared confused, slow, or demented, yet was inwardly formulating coherent thoughts and ideas that I simply could not express in any meaningful way.
My horror intensified after a staff member brought me some beads and string as a form of recreation. For what seemed like hours, I tried to put those beads on that string. But my hands wouldn't work. Eventually, a staff member brought me extra-large beads and a thick string, and I slowly and painfully began to bead. My pain wasn't physical; it emanated from the shocking realization that I could not perform this activity any better than the average three-year-old.
Was I doomed to exist forever as a mere shadow of my former self?
I realized I had also lost my ability to write. The pencil would not cooperate, the letters would not form. My mind could not dictate the action of my hands.
I was engulfed by sorrow and unspeakable terror. Was I doomed to exist forever as a mere shadow of my former self, with no way to communicate or function beyond the barest minimum?
"Shani, can you check my English composition before I turn it in?"
"Shani, could you explain that geometry equation?"
"Shani, your grade of 99 percent is the highest in the chemistry class. Congratulations!"
A part of my mind drifted back mournfully toward these and similar conversations that had taken place in my high school. But that was before, I reminded myself -- before I learned that my mind could malfunction like some mechanical object gone awry, before my capacity for rational thought was swept away by the tidal wave that had mysteriously overtaken my brain. Before I went crazy.
Only a few months before, I had been a fairly popular, high-achieving high school student. As my principal would later apologize, "Even if we had known how to help you, how could we have predicted all this? Up until your breakdown, you seemed just fine." There was no way for her to know. There was no way for me to know. The events now unfolding were beyond my wildest imagination. The seeds of mental illness had been planted long before, but as they grew, silently and insidiously, bringing my mind closer to the oncoming destruction, not a clue was detected by anyone, including me.
Hefty doses of antipsychotic medications, along with my four-week stay on the second floor of the hospital's psychiatric unit, eventually tamed what would soon be classified as a manic episode, and I was sent home. There, to my enormous relief, I gradually regained some of the crucial skills and functions I had lost. Though shaken, traumatized, and considerably humiliated by my recent, rather well-publicized encounter with madness, I was functioning well enough to attend the beginning of high school the following year.
Then the lights went off again. The world went dark. My mind slowly filled with somber thoughts of frustration, futility, and death. Self-destructive urges became increasingly persistent and frequent. I was as frightened and baffled by these new developments as I had been by the previous ones.
I wrote more poetry.
Self-destructive thoughts led to concealed desperate actions. But my secret would not hold. I could not contain it. And shortly thereafter I revisited the fourth floor. I occasionally acted out the depth of my inner despair by periodic attempts to physically harm myself, and by an ongoing refusal to eat, bursts of temper, and fits of crying. The sense of hopelessness was constant, though I was able to utilize the changing activities and various interactions on the ward as temporary distractions.
Eventually I stabilized sufficiently to be released again, in time to complete the academic high school year. Once again, I tried to ignore the humiliating fact that everyone knew I had been in a mental hospital. One or two of my close friends were brave or curious enough to ask for details, and the subsequent disclosures ultimately strengthened my bond with them. In a gesture that would prove crucial to my future well-being and ability to cope, my principal did some research and referred me to a wonderful psychiatrist, which resulted in a long-lasting, productive, and healing relationship.
Though I was back with the same teachers and the same friends, I was not the same. I continued to experience exaggerated mood swings and a host of other disturbing and uncomfortable symptoms. I suffered from panic attacks, impulsive thoughts, self-destructive impulses, a heightened level of anxiety, and sluggishness. I was no longer able to concentrate well in class and could not process and absorb information as quickly or easily as I always had. Studying for exams became harder; I had difficulty reading and remembering. I instinctively tried to make up for these puzzling new limitations by studying longer and harder, but my grades fell. I was no longer a top student. I lived with an inner shakiness. I had learned something: life as I knew it could suddenly fall apart. I felt an ongoing anxiety that my struggling mind would shatter once again...that the world would again be transformed into a disturbing and terrifying place.
Outside school, I was speedily being initiated into the world of mental health practitioners and treatments. The first lesson was that not everyone who said they could help actually could. The second lesson -- one I am still absorbing to this day -- was that there's no such thing as a magic cure. For me and for most people who struggle with mental illness, there is no pill to make it all go away. Learning to live with the presenting symptoms of a mental illness is a meandering, highly individualized process full of trial and error. Though there is much to be learned from networking with others who live with mental illness, the most effective coping mechanisms necessarily differ from person to person.
There was a time when I clung to this diagnosis of bipolar disorder like a lifeline. It actually has a name.
Over the next two decades I would collect a colorful and varied repertoire of diagnoses, depending on which symptoms happened to present themselves when I was consulting this or that practitioner, or upon admission to this or that psychiatric ward. But the prevailing diagnosis, the one that most aptly encapsulates my various episodes, is bipolar disorder. There was a time when I clung to this diagnosis like a lifeline. It actually has a name,
I've never had diabetes, but I can tell you this much: bipolar disorder, or any other mental illness, is nothing like diabetes. Healing the symptoms of mental illness is more art than science, and there is no linear route to health, no well-defined solution that works similarly in all cases. Over time, I have attached less and less importance to the diagnosis. It matters little how the current psychiatric manual describes it. I have to live with myself, not some description on a printed page. I am not a list of symptoms. Like everyone else, I have a unique personal history, a unique family history, and a unique personality.
In my life I have visited not only the depths of despair, and the fantastical dreamlike whirlwind of psychoses and mania, but also the simple joy of everyday moments and the quiet satisfactions of life's ordinary ups and downs. Living within my limitations, I have experimented with different work environments and remained successfully employed through most of my adult years. Run-ins with mental illness have put an end to some jobs, but for the most part my decisions to maintain or leave a given job have been made of my own volition.
I have enjoyed new friendships in the two decades since my first encounters with mental illness; the most satisfying friendships permit me to be up-front about the realities the illness has created in my past and present life. In general, I gravitate toward people who have the ability to openly accept this aspect of my existence and see beyond it. Though I also have many relationships with people who either do not know of my history, or those who know about it but would rather not relate to it, these are inevitably more limiting, in the sense that I must filter my past and present to suit their expectations.
I have met people who have the openness of mind and spirit to accept and value me, despite the fact that my mind sometimes shatters.
I learned to hide. I developed a ready supply of superficial alibis to explain away substantial chunks of time spent behind locked doors, and to omit anecdotes of people and events directly related to whole segments of my life. Hiding is an art form. I have sometimes been up-front with the wrong people at the wrong time and have learned the hard way that a diagnosis of mental illness can effectively shut the door to certain jobs, living accommodations, and necessary social interactions. However, amid those closed doors, I have discovered some that remain steadfastly open. I have met people who have the openness of mind and spirit to accept and value me, despite the fact that my mind sometimes shatters. These people instinctively understand that mental illness is not contagious and that a person who has survived episodic breakdowns of the mind and spirit can still conceivably function well, work effectively, and contribute to society. They recognize that someone who has experienced the extremes of human emotion may also possess an unusual capacity for empathy and a fine-tuned sensitivity to others in distress. But such people are in the minority.
Through the years, I have explored various treatment options and have been placed on a wide variety of psychiatric medications, with varying degrees of success. I sometimes experienced debilitating and severe side effects, usually resulting from the incorrect dosage of certain drugs administered by irresponsible psychiatrists. I learned to be careful and discriminating when choosing practitioners. I learned to ask questions before agreeing to medications and, to a large extent, have learned what does and does not work for me. Ongoing talk therapy, including six years of productive psychoanalysis, has helped me gain insight, self-awareness, and coping skills.
Of course, it's not only therapy that helps develops better coping skills. So does living life. I find that as I get older, I have more resilience and adaptability when dealing with the world's inevitable ups and downs, and my episodes of illness get fewer and further between as I learn to avoid certain potential triggers and deflect others through better coping mechanisms. The effect of the illness on my day-to-day life has lessened, and for long stretches of time, I can forget there's anything unusual about me at all.
The man I married ten years ago stays staunchly by my side. I have never ceased to admire his ability to accept the realities of my past and present, to appreciate me, and to focus on the healthy aspects of my personality. His unique brand of humor livens up my days and sometimes finds me laughing through my tears, in spite of myself. From the start, I have been completely honest and straightforward with him about my history of mental illness, and thus experienced his wonderful acceptance of me from the time we were first introduced and were getting to know each other. His attitude when searching for a wife was that he wanted someone who understood that life offers suffering along with all its joys. Unfortunately, I have been through a number of dramatic illness-related episodes during our marriage, and these have sometimes strained our relationship considerably. They have also provided me with an opportunity to realize the depth of my husband's devotion and his resilience as we moved past these episodes and continued our usual lively, dynamic relationship.
I often take a moment to appreciate and marvel at the wonder of their existence and of motherhood itself.
From the onset of the illness, I worried that I might never be able to have children. I longed for children, though, and desperately wanted to become a mother. With careful planning and expert control of medications by competent professionals, my dream has, thank God, become a reality. I am blessed with beautiful children who give me tremendous joy. They allow me the chance to become reacquainted with the delights of childhood, continually reminding me how much fun life can be. I am profoundly grateful for the opportunity to bear and raise them, which I do not take for granted, considering the many pitfalls that could have prevented me from realizing this dream. When I look into their beautiful sleeping faces each night, enjoy a quick hug or a child's carefree laughter, I often take a moment to appreciate and marvel at the wonder of their existence and of motherhood itself.
I can't give myself credit for the remarkable comebacks I have made from the precipices of insanity, or for my numerous narrow escapes from the threat of long-term institutionalization. Certainly, I have tried mightily to swim against the current of madness, yet something larger than me is at work. Someone has sent me angels to help me along the way and pick me up when I fall. He who sent me my trials and tribulations also made sure I had the means with which to find solutions. However, I have struggled with the concept of a benevolent and loving Creator as I careened through varied torturous inner and outer scenarios and tried to make sense of it all. Following is a portion of a poem I wrote as I searched my soul.
The angels in my life have been ordinary people with extraordinary hearts and the ability to provide the unique type of help I need time and again. The remarkable psychiatrist who was introduced to me by my high-school principal ultimately provided insight, guidance, and medical advice over the span of two decades, without monetary or other apparent gain to himself. A certain wonderful woman displayed wisdom and incredible patience over many years, spending countless hours on the phone and in person. She listened to my often confused and desperate ramblings, deciphering and untangling the knots in my narrative, despite the demands of her own large and growing family -- also with no outwardly apparent benefit to herself. Devoted family members followed me repeatedly into the dungeons of horrifying institutions, providing financial or other assistance whenever possible, and encouraging me with their continued optimism that I would somehow, someday, get well. A talented psychotherapist appeared on the scene when she was most needed, forging a path to healing in her gentle, inimitable way.
My husband and children's ability to draw out the healthiest parts of me provide a balm to old wounds and a continuing sense of purpose and direction. The friends who stayed with me through it all, supporting me when I could not function, and their invaluable gift of ordinary friendship just as soon as I could rejoin them are all among my many angels.
But through all those years
I have been touched by angel
In the background, in the forefront
Hovering, protecting, watching, caring
Angels with the attributes they say reflect Himself
"Hashem, Hashem, God, compassionate and gracious,
slow to anger and abundant in kindness and truth"
So I look back through the years
And remember moments of grace
Flashes of beauty
Interludes of reprieve
But most of all I remember the angels
And it all comes rushing back to me
And I know He is there.
"Things Fall Apart" is from Sarah Shapiro's recently published All of Our Lives: An Anthology of Contemporary Jewish Writing, [Targum/Feldheim]
Can He be found in the rotting walls
Of a neglected locked ward?
A prison for those
Already locked in their minds?
Can He be found in the screams of the desperate
Or the chilling laughter of the insane?
In the straps so cruelly fastened
For days and nights on end
On a body already broken
By a crushed and defeated spirit?
The terrible darkness
Rushes in on me.
Despair clutches at my heart.
Yet despite all this,
A spark of hope still flickers.
But I cannot survive on hope alone,
So I search for a way out.