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Notes on Accepting Care


An Uncertain Inheritance, ed. Nell Casey (Harper Collins, 2007)

An Uncertain Inheritance, ed. Nell Casey (Harper Collins, 2007)

I had a good run at being a caretaker in the years immediately before my first mental breakdown. My mother was dying of cancer, and in retrospect, I could have done better with the caretaking, because I was twenty-five and full of ambivalence about the role reversal. I wanted to be there for my mother, but I was young and had my own life to live, and was angry at fate for getting in the way of my happiness. Sometimes, that translated into anger at my mother, and so we argued. Sometimes the anger turned on my father, because he was so unconditional in the care he took of my mother. My father’s lack of ambivalence seemed to throw my own mixed feelings into sharp relief, and he cared so much for my mother and so little for anything else that was happening that I felt trampled. I was too young to understand the urgency of impending loss. He would ask me to come home every time she went through the slightest difficulty, without much regard for the ways I thought such diligence was wrecking my life. My father had always been the great problem solver; anything we brought to him, he had always made better with love or money or intelligence or compassion, and my mother’s illness was the one thing he failed to cure. I wanted him to handle it, and I was grief-stricken that he couldn’t, and, childishly, I resented the powerlessness implicit in his asking me to help ameliorate what he could not fix.

Despite all that, I did a lot for my mother during her two-year battle with cancer. She was not only the person my father loved most, but also the person I loved most. I called her every day, often several times a day, and came home to New York every month or so from London, where I was living. I went to great lengths to get things for her that I thought she might like (English books, her favorite peonies), and kept the house merry with a cavalcade of carefully chosen gifts. I consulted with my father about her medical care – which was mostly a matter of affirming his beliefs, but it took time and though to do it convincingly. I tried to fly the banner of good cheer when her moods sank. As her situation became more serious, my own ambivalence was mitigated, and the reality of the loss became incontrovertible. I mourned in a visible way that was difficult for everyone but that must have assuaged any concern she might have had about how deeply she was loved. I ultimately left England and moved back to New York to be near her during her final months.

It would be a gross lie to say that I didn’t express my own sorrow while she was alive, sorrow about her impending demise and about the cavernous void that the very prospect of that loss opened within me, but I was holding onto sanity and didn’t realize how tenuous my grasp was. After she died, the slippage accelerated into darkness and sadness and blunted despair. As I sank, I kept calling out to my father, who had taken such good care of my mother; but he was negotiating his own anguished landscape, and he was calling out to me, too, and neither of us could hear the other. We groped along in mutual pitilessness and self-pity, exhausted and alone. Flashes of romantic love pulled me out of this dire condition, but they were misguided at best, and often seemed like new locations to which I could tether my misery rather than like actual life experiences to which real and appropriate sentiments might attach.

I began developing symptoms of mental illness. I didn’t understand what was happening, but I knew I could not face it alone. In desperation, and in the absence of my mother, I turned to my needy father with a need that trumped his own. He rose to the occasion, and our subsequent famous relationship has been built on that fact. I considered myself a caretaking person, but I had no idea what solicitude really entailed until I had been its object.
My father had been nurturing enough when I was little, but attending to the ill was my mother’s department, as was exploring the complex and frightening world of emotions. She was the one who kept track of feelings, and who attempted gentle resolutions of life’s upsets and frustrations. My father was jolly and cheerful and slightly vague about the details of our lives. He loved us beyond measure, but it was not his full-time job to do so. I didn’t know what capacities he had until I watched him with my mother in those final years, and I didn’t fully comprehend the power of such nurturance until I was its target. In retrospect, this seems strange. I don’t know to what extent my father changed and to what extent he was simply manifesting what had always been his underlying character. Both things are true, but their proportion remains obscure to me, and, I would think, to him. What is clear is that when the time came, my wobbling self discovered a foundation of granite in my father’s compassion.

I wrote a book, The Noonday Demon: An Atlas of Depression, that includes the specifics of my illness, and I will say here only that in retrospect, I hardly believe that I stayed alive through it. I couldn’t feed myself for days at a time. My sleep was fitful and full of painful dreams, and when I was awake I wanted only to sleep again. I knew that my state was ludicrous, that I had an essentially good life and that all this despair was a folly, which only made me feel worse. I found it frightening to be alive; I was as anxious as if every second were a final exam, as sad as if everyone I loved were dying, as numb as if I were embedded in polar ice. If I had been able to think of a passive way to give up on life, I’d have done it in a flash; what stood between suicide and me was how much effort it would have taken effectively to annihilate myself. My inability to shower became a symbol of the laughable extent of my disability; I felt paralyzed by the time I had swung my legs over the side of the bed to sit up. The prospect of walking the requisite twenty steps, turning on the water, adjusting for temperature, getting under that beating water, using soap and shampoo, getting out, turning the water off, drying myself – it was almost inconceivable. All over the world, people were taking showers. Why could I not be one of them? Then I would reflect that those people also had families and jobs and bank accounts and passports and dinner plans and problems, even cancer and hunger and the death of children, and isolating loneliness and failure. By then, the idea of a shower would have come to seem foolish and unrealistic and I would be relieved to pull my feet back up into bed, so I could like in safety and feel ridiculous.

Always at the back of my mind, a calm and clear voice said, don’t be so maudlin; don’t do anything melodramatic. Take off your clothes, put on your pajamas, go to bed; in the morning, get up, get dressed, and do whatever it is that you’re supposed to do. I heard that voice all the time, that voice like my mother’s. My father is not depressive and does not find life difficult unless he is compassing difficult situations. He has rough moments, and the years after my mother died were extremely painful and profoundly sad for him, but my father is always highly functional: functioning is his default condition. My other functioned nearly as well as my father, but for her it was a constant battle that involved a great deal of pushing herself through. She didn’t have the acute depressive symptoms I developed, but her vitality was an exercise of will. A trace of melancholy peeked out behind even her gladdest smiles, but she never indulged that side of herself. With a steely self-discipline, she kept all our lives running merrily on course, including her own; she was living proof that being sad didn’t prevent you from being happy. It was my father who could take care of me, but it was the memory of my mother that told me how to take care of myself.

Like most people, I did not want help when I started feeling horrible. I wanted to get through it on my own. Indeed, I wanted to protect the privacy of my sorrow. It took months of deterioration before I finally caved and went to see a psychopharmacologist. My first day on medication, I moved into my father’s apartment. My father was almost seventy, and most men of that age cannot easily tolerate complete shifts in their lives. His flexibility of mind and spirit allowed him to understand how he could be my mainstay through rough times, and his courage helped him to be that mainstay. He canceled all plans so he could stay in with me, night after night after night. He was relentlessly cheerful and never flagged (at least in front of me) in his conviction that I would soon be well, despite copious signs to the contrary. He led a cheering section, and also dealt with the pragmatics, cutting up my dinner for me when using a fork and knife was entirely beyond me. I would tell him not to feed me, that I wasn’t five, at which he would recount how he felt when I was a child, and he would make me promise, jesting, to cut up his lamb chops when he was old and had lost his teeth; but despite that joke there was nothing reciprocal about the situation. We achieved a symbiosis in which he was perfectly tolerant, and I tried to be perfectly acquiescent. I found the situation somewhat humiliating, and he claimed that he couldn’t see why.

Since my depression followed a diurnal rhythm, at its worst in the morning and at its best just before bedtime, I would rise to some of his good humor at night. Before bed, Xanaxed out but not yet asleep, I would joke with him about my sorry state, and that rare intimacy that surrounds illness would make itself felt in the room, and sometimes I would feel too much and begin to cry again, and the it was time to turn off the lights and go back to oblivion. Some evenings, my father read to me from the same books he had read when I was a child. I would stop him. “Not long ago, I was writing my novel,” I said. “I used to work twelve hours and then go to four parties in an evening. What’s happened?” My father would assure me, sunnily, that I would be able to do it all again soon. He could as well have told me that I would be able to build myself a helicopter out of cookie dough and fly it to Neptune, so clear did it seem to me that the life I used to live was now definitively over.

During this first serious depression, I had to embark on a book tour for the aforementioned novel, A Stone Boat, which dealt in loosely keyed form with my mother’s death. The publisher had scheduled me to go to the West Coast for a series of readings. I had started on medication, but was still in the first throes of treatment, that wonderful period when you get all the side effects but not yet any of the desirable results. I remember lying in bed in a state of unremitting panic because I knew I couldn’t go, even though I had dreamed all my life of publishing a successful novel and couldn’t forego this opportunity. Squashed between my Scylla and Charybdis, I suddenly thought of asking my father for help, again. In the course of my entire life, I’d never known him to miss a day of work except once, when I was in second grade and he had fallen and cut his face so badly he had to go to the hospital; and then during the months when my mother was sick. I found my own illness both comical and deplorable and I hated the idea of disrupting his life anymore, but it felt like my only choice, and when I asked him to come with me, he assented instantly and gladly. I remember the wave of relief, the feeling that under his vigilant eye it would all be fine, that he would take care of me and that I was going to allow it. My breathing change: even the prospect of travel did not send me back into panicked, shallow inhalations.

My father took me to California. He got me on and off the plane and to the hotel. So drugged-up that I was almost asleep, I could manage these changes, which would have been inconceivable a week earlier under any circumstances. I knew that the more I managed to do, the less I would want to die. During our first dinner in San Francisco, I suddenly felt my depression lift. I chose my own food. I had been spending days on end with my father, but I had no idea what had been happening in his life, besides me; depression is a disease of self-obsession. We talked that night as though we were catching up after months apart. The next morning, the misery returned in full force, but at least I had enjoyed a brief window of normality. My father came with me for the next week, and in the week after that, he called me every few hours. I was never alone for long. The knowledge that I was loved did not in itself constitute a cure, but without it I could not have completed the book tour. My father had made wellness seem like a plausible object for which I could rationally hold out hope. Without his tender care, I would have found a place to lie; down in the woods until I froze and died. Recovery depends enormously on support. If there is a rational piece of you that survives the distortions of illness, that piece knows whether there is anything to get well for. The constant reminders of my father’s love made me feel that if I could recuperate, a life of some value awaited me on the other side. I couldn’t feel that value, but I knew that it was there, and that was a strong motivator for getting better.

Even so, I was angry at my father some of the time, angry in an irrational, miserable way. I was enraged ad the world and at fate and at my own brain, and my father was a handy outlet for this anger. I told him he was pushing me too hard, or not hard enough. I was young, comparatively, and still aching from the loss of my mother, and from the end of a deep romantic relationship and the elusiveness of a new one. He meant his assurances to be uplifting, but sometimes they felt like trivializations of my very real condition. I was not going to be fine and I wanted him to acknowledge that. I was indebted to him, but my appreciation teetered constantly at the brink of ingratitude. Just as I was beginning to get better, he said something that upset me, and I heard my voice go shrill and my words grow sharp. I could see the trace of apologetic, perplexed recoil in my father. I breathed deeply, and said, “I’m sorry. I promised not to yell at you and not to be manipulative, and I’m sorry.” In depression, when we need love more than ever, we are at our least lovable. Depressed people stick pins into their own life rafts. I exploited my depression as an opportunity to put up a wall around myself, through which I could sometimes receive but seldom express any positive emotion.

While receiving care is a great deal better than not receiving care, it’s a lot worse than not needing care. My father’s kindness at some level reminded me of my own helplessness. I was upset by the needs my depression created, even when those needs were being met unstintingly. In later depressive episodes, I understood what was going on a great deal better, and I depended less on a single source. By then, I had built up a better network. Friends eased the burden on my father, and eventually I found love and had a supportive partner to split the work. In depression, you make what the disinterested world judges unreasonable demands on the people around you, and friends and even lovers often don’t have the stamina or knowledge or inclination to cope. If you’re lucky, some people will surprise you with their adaptability. You communicate what you can and you hope. Slowly, I’ve learned to take people for who they are. Some can process depression or other illness right up front, and some can’t and I no longer blame the people who are allergic to clinical desolation. Most people are repelled by the unhappiness of others. Few can cope with the idea of a depression divorced from external circumstances; most would prefer to think that if you’re suffering, it’s with good reason and subject to logical resolution based on a direct address to that reason. There are things that only others with the same wounds can understand; I know from my unsympathetic pre-depressive days how incomprehensible depression is to those who haven’t had it. Spouses, parents, children, and friends can be brought down themselves, and they do not want to be close to measureless pain. Depression is extremely contagious, and smart people try not to expose themselves to it any more than necessary – though experience can serve as a vaccine and native resilience an immunity. My father resisted catching my illness both because of his inborn buoyancy and because he needed his own good spirits to ensure mine.

No one can do anything but beg for help (if that) at the lowest depths of a major depression, but once help is provided, it must also be accepted. We would all like Prozac or intensive cognitive-behavioral therapy to do the trick, but in my experience, we have to help it along. One can’t just pull himself up by his bootstraps when he can’t even get out of bed to find his boots, but on the other hand one can’t just shift the burden of recovery to medical interventions. A depressed person cannot be drawn out of his misery with love (though he can sometimes be distracted). Even if a caretaker cannot shine light on the darkness, he can, sometimes, manage to join someone in the woeful place where he resides, so he is not alone there. It is not pleasant to sit still in the darkness of another person’s mind, though it is almost worse to watch the decay of that mind from outside.

So many people have wondered what to do for depressed friends and relatives; it’s perhaps the question most frequently asked of me when I lecture, and the form in which it’s presented is usually that a depressed friend or spouse or parent or child rejects help and claims to want to be alone. Don’t believe such people for a second. What they mean is that they find it stressful and exhausting to fulfill any expectations, and that social interaction may be more than they can handle, and that they can’t demonstrate an instant recovery response upon the proffering of affection, and that they feel guilty. Sometimes, depressed people cannot bear to have another person in the room with them because the presence of such a person feels like an implied demand. In that case, sit in the next room. But soothe their isolation. Do it with cups of tea or long talks or by staying nearby and silent, or in whatever way suits the circumstances. And do it willingly, without expectation of a quick return on the investment. You can’t undepress another person, but don’t leave. Someone who feels truly alone is bereft of hope, and that is the path to suicide and ultimate despair.

When frantic people ask how they might emerge from their own depressions, I think how much love would help. The unavailability of love to some of these people seems a worse disability than their illness itself. After my father had kept me alive through that grim time, we gave up most of our previous lifetime’s arguments. I wouldn’t choose to go about it the way I did, but depression allowed me to see love that had been there all along but had been obscure to me. I am therefore grateful not only to my father, but also the sorrow he allayed.