There's no lab test to diagnose clinical depression, no scan to define its ravages. But it's as real as a tumor, as devastating as a stroke. Just how real, how devastating, is evident from this saga of one patient's struggle with seemingly intractable internal demons.
By Nancy Price Graff
Ten years ago I made a promise. Several months earlier, I had been released from the psychiatric ward at Dartmouth, and I was trying to make peace with the ways I had changed. They were not pleasant changes, and, if my son and daughter ever faced mental illness themselves, I wanted some assurance that they would not suffer as I had or make the same mistakes.
If this misery befell them, I prayed they would accept their illness as a genetic anomaly that runs rampant through their family and not as a character flaw. I hoped they wouldn't berate themselves if their brains gradually shut down, or see themselves as weak if their intellectual, emotional, and social worlds contracted until normal public intercourse became impossible. I didn't want them to feel, as I so often did, like a dunce as they foundered while trying to follow the threads of a conversation or agonized while trying to remember some recent event. If I could not guarantee their mental health, I desperately wanted them to understand that the illness they might one day face was more powerful than all their best intentions to be and stay well. Most importantly of all, I prayed they would not be too embarrassed to seek help. In return, I promised anything, anything at all.
I knew that mine was a naive wager—the kind that children offer up as they lie in their beds on the threshold of sleep, hoping someone will surprise them in the morning with a new bike. Yet I wanted to believe. Everything I had—my health, my intelligence, my compassion, my creativity, my sense of humor, even my life—did not strike me as too much to offer up in return for the security of knowing that my son and daughter would grow up safe and happy.
Looking back a decade later, however, I can see that I wished for the wrong things. Yes, I'd pledged my soul in exchange for matters that were indeed of great importance. But from what I've learned in the intervening years, it's clear that there are bigger stakes here than I recognized back then. I was bargaining with something that depreciates every day, like a piece of ripe fruit, when the real currency is more precious than diamonds. All I can hope now is that I haven't squandered my three wishes.
For the first 12 years after my son's birth in 1981, I felt as if my life's trajectory resembled that of a 25- cent carnival ride. Within weeks of his birth, my days filled with nervous energy, beset by ups and downs. The peaks and valleys were bearable, however, even when they seemed extreme. (Little did I know how my definition of "extreme" would change.) When I needed stability, I sought the help of counselors and eventually a psychiatrist. During the worst spells, I took medicine that made me feel better by clearing my head and stopping my crying. I would become a social being again. A year or so would pass, and I would be allowed to cut back on the dozen or so pills I took each day. Then, inevitably, at some point after I had pared my medicine to a minimum (usually several months later), my little carnival car would lead me into another dark tunnel and the light in my life would dim. And the cycle would start all over again.
My situation was very unpleasant but not dire; I had tools and people to support me. Primarily because my husband has worked heroically over the years to keep everyday life in our home close to normal, our children were protected for years from the worst that befell me—even during the dark episodes, when my crying, impatience, and quick temper were difficult to hide.
Then suddenly, about 12 years ago, when my children were 8 and 12, the light didn't just dim; it nearly went out. My son and daughter knew something was wrong with me, but they were unaware that I woke up early each morning terrified that I was drowning. They knew nothing of the bizarre images that raced through my head at dizzying speed—a phantasmagoric slide show of incomprehensible pictures that made me clench my jaw so hard my dentist had to give me a mouth guard to keep me from grinding my teeth into powder.
Unbeknownst to my children, I stopped writing because I couldn't think, couldn't spell, couldn't remember, couldn't type, couldn't imagine or arrange ideas. Nor did my children notice when I stopped doing the crossword puzzle every evening after dinner, but that change and others were not lost on my husband. As my faculties failed, he could see that it was impossible for me to think of a ten-letter word for unhappiness when a three-letter word as simple as joy had slipped beyond my grasp.
For me, depression comes on incrementally. I've been hospitalized for mental illness four times now. Each time, the first thing I lost was the ability to read books, with their long and complex plots. Then went magazine articles, then newspaper articles. Eventually, all I could handle were the headlines on the front page of the daily paper. Television storylines were too busy—and, in any event, they required me to sit still, something beyond my control. Radio was all noise, and I craved silence. Social interaction was too stressful; almost any topic could make me cry. These inexplicable episodes were so embarrassing, for me as well as for the person I was trying to talk to, that it became easier just to stay home.
It's not that I wasn't trying—am not still trying—to live a normal life. For many years I have kayaked, downhill skied, swum, biked, worked out at the gym, lunched weekly with a friend, volunteered at my children's schools, served on boards, and maintained a minimal social calendar, because I've read that these activities are good for me. But gradually these things, like my intellectual life, would slip away. In short, my public self walked away from me like a shadow that had acquired a life and a step of its own.
The first time that happened, 12 years ago, the path that I found myself on led to Dartmouth- Hitchcock Medical Center. Just to understand the need to be hospitalized for my own safety—in other words, to hear what my husband and doctor were saying—took nearly all the cognitive ability I had left. While I was in the hospital that first time, the doctors reassessed my medication regimen, and a sensitive young chaplain counseled me. During my second hospitalization, 18 months later, electroconvulsive therapy (ECT) eventually put me on my feet again. Although I was terrified of ECT, it returned my life to me, minus a year's worth of memories.
For roughly the next 10 years, I rocketed along on my virtual carnival ride. Then, two years ago, things began to deteriorate again. My son was a senior in college and my daughter a senior in high school. Both of them were absorbed by the kinds of events and demands that typically accompany those stages in life. Although I knew I was getting sicker and sicker, because I could feel my life falling apart in all sorts of little ways that are cumulatively devastating, I did not want to spoil my children's respective senior years or heap pressure on them when they were already feeling the squeeze of their own life changes. So I hid my condition as best I could. But mental illness does not hide easily. At one point, my son sent me flowers because the tone of my voice on the phone worried him. My daughter's soccer coach once came up to me on the sideline at the end of a practice and asked gently if I was okay. This kind gesture brought tears to my eyes, but I lied and said, "Of course."
I finally went into the hospital again in the fall of 2003, after spending a long evening on the phone with a 911 operator. I was as embarrassed and humiliated as I had been the first time I was admitted. Once more I had to hand over everything—from my razor to my hair dryer to my migraine medicine—to enter a self-contained universe where patients devote themselves to trying to understand better why we have been put together in the first place and what we need to do to be released. I attended all the group sessions on medicine, relationships within families, relapse, and how to recognize signs of oncoming illness.
Again, however, weeks passed while talk therapy and medicines failed to help me turn the corner. Reluctantly, I agreed to have more ECT. I had never recovered any details of the year I'd lost to ECT a decade earlier, so I was probably more afraid of this second round than I had been of the first. Nonetheless, I saw it as my only hope. If I was to get well enough to go home, this was clearly the path I would have to take. My mood picked up surprisingly quickly once I'd had the treatments, and I went home shortly thereafter.
Electroconvulsive therapy is a gift wrapped in thorns. True, the new ECT practice of unilateral, rather than bilateral, treatment usually cuts the patient's memory loss considerably but, unfortunately, does not eliminate it. After the second round of ECT treatments I still had significant problems with remembering, even though the period of lost time was shorter. As before, I would joke about it and try to minimize it in public, but people rarely understood that my blankness was nothing like their forgetfulness. The things I had forgotten—people I'd met, meetings I'd attended, places I'd been, conversations I'd had—did not lie at the periphery of my memory, toying with my consciousness like a word on the tip of one's tongue. Nothing anyone said could push that name or event into my awareness. What I had forgotten was gone. Period.
Plus there were other side effects, principally an overwhelming fatigue and an inability to think sophisticated thought. So although ECT could work magic in terms of banishing fairly quickly the kinds of self-destructive thinking that made me a good candidate for the security a hospital offers, weeks and months passed before my critical thinking returned. This was a time during which I still cried from frustration that I was not the person I had once been.
Another 18 months of relative calm passed. My fatigue eventually abated, my mind regained some of its suppleness, and I stopped crying. However, my lost memories remained lost, while a bizarre form of remembering replaced real memories. Now I knew only what others told me. For example, if someone told me I'd been somewhere or met someone, I now recalled the version of what I'd been told, not the actual event or person. I tried to make light of the possibility of reinventing my life because everyone engaged in the conversation grew uncomfortable whenever the subject of my profound memory loss came up.
But inside I was troubled and felt vulnerable, and with good reason. According to Gabriel Garcia Marquez, "Life is not what one lived, but what one remembers and how one remembers it in order to recount it." Significant pieces of my life were simply gone in the wake of both my ECT-induced memory loss and the terrifying confusion that is a hallmark of severe depression. As a writer, I felt the vacuum especially acutely because my pool of stories was evaporating.
And then during early 2005 my world began to darken yet again. I was overcome with exhaustion and could barely get out of bed. Noise was intolerable. Writing became a Herculean challenge. Once more I began crying daily, often several times a day, until I largely gave up going out in public. My head felt gripped in an unrelenting migraine. Bizarre images once again raced through my thoughts, stealing my capacity to think clearly and sometimes even provoking feelings of motion sickness. I stopped bothering with my hair and with putting on make-up because I didn't care what I looked like. I stopped caring altogether what anyone thought of me.
As at several times in the past, I began to believe that the world would simply be better off without me. When I'm suffering from depression, the world becomes full of opportunities I don't consider when I'm well. Every isolated spot I pass on my bicycle becomes a place where I imagine it's possible to kill myself and not be found for days. Every tree with a broad, strong crown, its branches lifted like imploring arms to heaven, becomes a hanging tree. The cliffs lining the interstate highways invite me to drive my car into them. The dark waters of every pond and lake where I kayak look capable of keeping my death a secret. The world is transformed by my depression into a place where my imagination considers only endings.
At that point, with both children out of the house, I went into the hospital last March. Once again I felt as if my depression had stripped me of everything I had and was, but that did not make the decision easier. Even without children at home, the choice was no easier to make than it had been the first three times—in part because I suspected that ECT would once more be a significant part of my therapy, as, indeed, it was. However, I was too tired and overwhelmed to fight my illness. I was no longer safe being left alone but no longer able to tolerate company. The psych ward routine was at least comfortable. I returned to groups—relapse, family, medications—that were now as familiar as programs at a fondly remembered summer camp, and I filled out another relapse-prevention booklet. The staff held these notebooks up in front of our faces as though they were Moses delivering the Commandments. In mine, I named people I could call on when my life felt as if it were collapsing and activities I could engage in while I waited for help to arrive. I did not share the staff's faith in the notebook's contents, however.
Yet on the whole the staff was extraordinary. Someone noticed that I needed some art, and soon I had a watercolor set and paper. Such actions typified my treatment. In a place where I had arrived with every edge frayed, I was treated with respect and gentleness. My nurses and doctors urged me to consider being hospitalized for severe mental illness not as the penultimate step before the end but as a life-affirming step for someone who needs the comprehensive services of a psych ward to regain her footing.
Trying to change how I looked at hospitalization became part of an enormous and continuing learning curve about mental illness that has changed the way I look at myself. One of the most important things I've learned about my illness is how foolish were my efforts to try to shield my family from it. Even though I try (despite how I feel inside) to act smart, funny, and self-confident when I am with my husband and children, they have all been touched by my illness in ways that are heartbreaking. Depression is a global illness that affects almost everyone who crosses its path, especially other members of a family. Some wounds may heal, but scar tissue grows over hurts too big to hide.
After my first two hospitalizations, for example, my husband was angry for several months, and for all the right reasons. For years during my dark times, my illness had cheated us of a normal marriage—one full of give and take, warmth and companionship, love and laughter. He had done considerably more than his share of the giving, and the enormous weight of the family's well-being had too often fallen on him alone. True, my illness had devastated me, but I, in turn, grated on him. Eventually my neediness eroded a gentle and loving man, exposing the hurt and frustration within him. He had married one person, and now his mate was someone different. In time, as I showed my growing strength and stability, his good nature returned. And I have tried to be more sensitive to what my symptoms demand of him. Nonetheless, ever since those first hospitalizations, we have lived as if a dark cloth is poised above our relationship.
Neither did my daughter escape the ferocity of my illness. Her eighth birthday and her simple wish for a lemon birthday cake haunt me to this day. To the outside world, I was still a competent person, but maintaining that appearance of equilibrium took enormous energy. At home, my efforts to control my mood were not enough; there simply wasn't enough energy left over to be the person I wanted to be, the person I had been.
I made three cakes in one morning, the final one from a mix, before I managed to make one that rose properly. By then frustration had pushed me over the edge. I no longer cared about my daughter's birthday. Instead, I fought to make that cake to prove to myself that I was still able to do so. After I went on to ruin the third cake by throwing icing all over it while it was still warm, I slammed it down on the kitchen table and shouted at her, "There! There's your birthday cake!" Fortunately for both of us, I was not so far gone that I wasn't horrified by my insensitivity and brutality. In fact, I was sobbing, overwhelmed at that moment by my inadequacy as a mother. My daughter, who had every right to be terrified by the sight of her mother melting down, had backed herself into a corner of the kitchen, where she was insisting that she didn't need a cake for her birthday. Under the circumstances, I was astonished that she wasn't crying, if not from fear, then from disappointment. But that has been one legacy of my illness: my daughter rarely cries. She suppresses her emotions, including the shedding of tears. In her experience, someone who cries long and hard doesn't need a hug, she needs a hospital bed.
My son has his own demons. He fooled me for years into thinking that he had escaped relatively unscathed. Not until late in his senior year of high school did I read the letter of recommendation for colleges that his guidance counselor had written for him. Like every senior, he had been called into the guidance office to talk with his counselor about the things he wanted mentioned in this important letter. He could have named many activities and awards, and he did name some, but he had also talked to her about my illness and his efforts to be an emotional buffer between his little sister and me. Reading that letter broke my heart. After trying hard through the years, even when I was very ill, to be a good mother, I was crushed to see in black and white that my children had felt they needed to be protected from me. And I was further crushed to think that my son, while still a child, had taken that heavy responsibility on his thin shoulders.
Among the other things I've learned in the past 10 years is that I'm hardly unique in my family, although my case is extreme. Milder versions of depression have touched my mother, my grandmother, my sister, my brother, my sister's two daughters, and two of my mother's sister's sons. The worst of it is that no one benefits from the sharing of this experience. Our mutual affliction is rarely discussed. In the end, we are each on our own.
Suffering from depression, I've learned, puts all of us at a higher risk for heart, endocrine, and bone problems. Each episode causes permanent cognitive disintegration that affects my health and my ability to think clearly. For a writer, this is a terrifying prospect. The odds also favor my life span being shortened by my depression. Suicide remains a possibility, but it's not the only way to die. My chances of having a heart attack or stroke are higher because of my illness. Your occasional tears may be cathartic, helping to rinse toxins from your body during times of stress. But my unstoppable tears indicate that my depression is in full bloom; whenever my depression goes untreated or resists treatment, I am in danger of crying my way into an early grave. Finally, my immediate family is at risk, not just of experiencing depression but of disintegrating under the pressure of this illness. The greatest terror of all is not that I may succumb to another attack—something that now seems probable, rather than merely possible—but that my children may have inherited these genes that seem to run like a river through my family.
This is why my wager of a decade ago seems outdated. The terminology has not changed in ways that would help my children recognize and treat this illness. "Depressed" is still the word used to describe the mood of high-school seniors who don't get into the college of their choice or of five-yearolds who don't get puppies for their birthdays. In most cases, however, that is disappointment, not depression. The disappointed, the grieving, and the sad do not sharpen knives and count pills. As unhappy as they may be, they get on with their lives—they do not spend their free time trying to figure out how to end them.
Four months after coming home from the hospital, as I work on this article, I still cannot complete a crossword puzzle—though I do know a number of synonyms for unhappy: sad, melancholy, miserable. But these words are descriptive, not diagnostic. None of them denotes my experience with depression, a crippling, deadly illness that grinds away at one's self like sandpaper.
Nor do many people appreciate how mental illness affects each sufferer. Some people want to cut me some slack because of my occupation. They say that I'm in good company as a writer who suffers from depression, joining ranks with artists like Edgar Allen Poe and Virginia Woolf and William Styron—but those people are mistaken. My illness does not enhance my creativity any more than it did that of those writers. Rather, it shrinks my whole being. In every way, I am diminished by my mental illness. I am no longer capable of scholarly work. Depression has aged me prematurely. I no longer think of myself as pretty. My face looks haggard. I've never gone off my medicines long enough to lose the weight I gain when I'm on them.
Coming home from my third and fourth hospitalizations has meant once again facing the arduous climb back to normalcy. My last ECT treatments left me so tired that more than once I pulled my car into a parking lot, locked the doors, and fell deeply asleep, unable to complete my errand. I was lucky if I was able to read one book every other month. Writing was impossible. I desperately wanted to stop crying and start laughing, to make others laugh. There is some degree of reassurance in knowing that I have been in this position before and have climbed out of it, but I feel like Sisyphus. The stone is heavier each time.
Prejudice remains. Despite how widespread depression is in my family, it is a subject we rarely discuss—especially my kind of depression, the kind that takes someone to the brink. I was interested to read that no one could be elected pope who had mental illness in his family, and I think of my sensitive, intelligent children and the opportunities they may be denied because of their genes. Those of us who suffer from depression and strain to keep ourselves on an even keel are still barred from many jobs. In some cases I understand the rationale, but the stigma stings.
The way back is slow. When I feel as if I've made no progress at all, I look at the distance I've covered. It's measured in fewer tears, a book read, a page written, a rediscovered reservoir of patience for a complex task. These are just inches, but inches away from the abyss, so they feel like miles.
I feel stable enough at this place to write this article. And to look around. I see the old wishes for my children, and I realize that they are inadequate. Now older, wiser, and more fragile, I no longer wish for them the strength and fortitude to fight mental illness should it strike them. Instead, I hope with all my being that they never struggle with this devastating sickness. They are old enough now to appreciate its toll. I am not now and never again will be what I was. I am simply what's left.
Graff—a writer, editor, and historian who lives in Vermont—has to her credit three nonfiction children's books, two young-adult novels, several books on Vermont history and culture, and dozens of articles on a variety of topics. She is also the former editor of Vermont Life magazine and has taught at the University of Vermont and Community College of Vermont. She wrote a feature for Dartmouth Medicine's Spring 1996 issue after her first hospitalization for depression—an article that won the Association of American Medical Writers' national Frances Larsen Memorial Award and that has remained one of the most-often-requested articles the magazine has ever published. She has been a member of Dartmouth Medicine's Editorial Board since 2003.
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