Serious illness, like all the important things in life, is rich in paradox, and one its paradoxes is this:
The journey of illness is a deeply personal and profoundly solitary: we are alone in the sickbed, alone in pain, alone in those terrifying moments of being wheeled into the operating room, and alone, ultimately, at the journey's end: whether we're the lucky ones, the survivors exhaustedly surveying the wreckage of our previous lives, or those at the very end of their stories, crossing the threshold from life into death. Yet it is equally true that illness unfolds in a space crowded with other people, stripping us of privacy and self-agency as we depend on doctors, nurses, receptionists, anonymous technicians in distant laboratories and, especially, our dear families and friends, whose own lives must change to make room for The Beast (the illness) now living so awkwardly, ferociously among us.
My last two posts have addressed the solitary nature of the descent into the Underworld of illness -- so today, let's look at the other side of the coin. These passages come from three of my favorite "illness memoirs": The Sound of a Wild Snail Eating by Elisabeth Tova Bailey, Eating the Underworld by Doris Brett, and, once again, The Alchemy of Illness by Kat Duff.
Bailey's The Sound of a Wild Snail Eating is an unusual and beautifully crafted book that is part memoir (an account of her life during years bedridden with a semi-paralysing auto-immune disease) and part nature writing (the close observation of the life of a woodland snail who lived in a pot of violets, and then a terrarium, in the confines of Bailey's sick room). She has this to say about her relationship to her friends during her illness -- relationships which, inevitably, changed as she drifted farther and farther from her former life:
"The mountain of things I felt I needed to do reached the moon, yet there was little I could do about anything and time continued to drag me along its path. We are all hostages of time. We each have the same number of minutes and hours to live within a day, yet to me it didn't feel equally doled out. My illness brought me such an abundance of time that time was nearly all I had. My friends had so little time that I often wished I could give them what I could not use. It was perplexing how in losing health I had gained something so coveted but to so little purpose.
"I eagerly awaited visitors, but the anticipation and extra energy of greeting caused a numbing exhaustion. As the first stories unfolded, my spirit held on to the conversation as best it could -- I so wanted these connections to the outside world -- but my body sank beneath waves of weakness. Still, my friends were golden threads randomly appearing in the monotonous fabric of my days. Each visit was a window that opened momentarily into the life I had once known, always falling shut before I could make my way back through. The visits were like dreams from which I awoke once more alone.
"As the snail's world grew more familiar," Bailey notes, "my own human world became less so; my species was so large, so rushed and so confusing. I found myself preoccupied with the energy level of my visitors, and I started to observe them in the same detail with which I observed the snail. The random way my friends moved around the room astonished me; it was as if they didn't know what to do with their energy. They were so careless with it. There were spontaneous gestures of their arms, the toss of a head, a sudden bend into a full-body stretch as if it were nothing at all; or they might comb their fingers unnecessarily through their hair.
"It took time for visitors to settle down. They sat and fidgeted for awhile, then slowly relaxed until a calmness finally spread through them. They began to talk about more interesting things. But halfway through a visit they would notice how little I moved, the stillness of my body, and an odd quietness would come over them. They would worry about wearing me out, but I could see also that I was a reminder of all they feared: chance, uncertainty, loss and the sharp edge of mortality. Those of us with illnesses are the holders of the silent fears of those with good health.
"Eventually, discomfort moved through my visitors, nudging a hand into motion, a foot into tapping. The more apparent my own lack of movement, the greater their need to move. Their energy would turn into restlessness, propelling their bodies into action with a flinging of arms or a walk around the room; a body is not meant to be still. Soon my visitors were off."
Bailey's relationship with her dog changed as well.
"Even at eight years of age," she writes, "her energy was extreme compared to my own. It was incredible that I, too, had once moved through life with such exuberance, with her at my side. From my bed I could give her scraps of my dinner and manage a few stokes of her soft ears. I loved her so, and her intense longing for more made me ache to leap up from my bed, fling open the door to the outside world and escape, the two of us heading, once again, deep into the woods."
Instead, Bailey was forced to lie still, to let time crawl past while her broken body healed. Looking at the door to her room, she wondered, "Was this truly a door I would someday open and walk through, as if walking out into the world were an ordinary thing to do? I would look at the door until it reminded me of all the places I could not go. Then, exhausted and empty from my audacious adventure, I'd make the slow roll back toward the kingdom of the terrarium and the tiny life it contained."
The wild snail, by contrast to her visitors, was slow but purposeful, alone but self-sufficient. "Its curiosity and grace pulled me further into its peaceful and solitary world. Watching it go about its life in the small ecosystem of the terrarium put me at ease."
Eating the Underwood by Australian poet and clinical psychologist Doris Brett is a mythopoetic memoir of her experience with ovarian cancer -- a book I relate to particularly deeply as this is one of the illnesses I've come through as well. Here, Brett writes of her feelings of betrayal when friends she's supported through various crises turn away from her during her own ordeal:
"The fear that cancer inspires cannot be underestimated. Many people cannot bear to think about it, let alone come into regular contact with it and the reminder of their own mortality. Other react in infantile ways, angry that you will no longer be able to be 'mummy' and support them in ways to which they have become accustomed. Others still are so overcome by the anticipated pain of losing you, that they can't bear to have contact with you. Still others don't know what to say to you and so they say nothing and keep away. None of this, of course, makes it any easier on you. It still feels like abandonment."
It was not until long after, Brett writes, that she was able "to think about the choices I made in ringing those particular friends. I have recognized by then that there are other friends whom I didn't ring, who would indeed have come over and given me the support I needed. The friends I turned to for help were the ones I had given the most help to in the past.
"It highlights the shadow of the younger self I thought I'd left behind me; the one who felt she had to be extra good, nurturing and responsible; the one who was there to take care of people, not ask to be taken care of. I recognized the amazed gratitude I still feel if someone, unasked, goes out of their way to do something for me. The astonishment, because I haven't 'earned' it. And I can see that in turning to those friends to whom I had given a great deal, rather than to those with whom I'd had a more equal relationship, I was again bowing to that inner fear."
Later in the book, after time has passed, and after the frightening ups and downs of treatment have led to comparatively safer ground, Brett re-visits the subject with wisdom and compassion:
"I have a renewed appreciation of the friends who have stuck by me. And I am enormously touched by the friends with whom I haven't had much contact previously, who made time to come and see me or phone me. With the ones I felt let down by, it has taken time. I don't think I'll ever be able to trust them in the old way, or be as giving as I used to be with them. I am more clear-eyed. The view is not the view I wanted to see, but it is there and I am finding I can live with it.
"I'm not angry at them anymore, the way I was months ago. I have to recognize the part I played as well, try to understand it. I feel as if I've just taken a compressed course of Grown-Upness 101. Part of me has the slightly dazed expression of the child who's just accommodating the fact that no, the Tooth Fairy doesn't really exist. I am more cynical, not a characteristic I particularly like, but perhaps a more successful one than being too naively idealistic. I am simply more ready, more able, to see things as they really are.
"Because it does feel now as if I am freer to simply take these friends for who they are. I don't want to idealize them but neither to I want to demonize them. It doesn't have to be an either/or situation. I know their flaws. And although I can't imagine that I will want our previous closeness, I can still enjoy a friendship. Not everyone has the capability, or the will, to be there through difficult times -- and perhaps not everyone has to."
In The Alchemy of Illness, Kat Duff -- who suffers from M.E./chronic fatigue -- looks at the subject from a wider culture perspective:
"I have come to realize that many people are deeply disturbed by the fact of my continuing illness," she writes; "they want to help but also need to reassure themselves that disasters like disease can be avoided and, if necessary, easily remedied. Treya Killam Wilber remembered devising theories to explain her mother's colon cancer, only to realize later, when she herself developed cancer, that 'it was really fear -- unacknowledged, hidden fear -- that motivated me to believe the universe made sense and that its forces were more or less within my control. In such a reasonable universe, staying healthy would be a simple matter of avoiding stress or changing my personality or becoming a vegetarian.' It's hard to swallow the fact that we have little or no say over the extent and timing of our illnesses.
"Before the advent of modern medicine, people gave thanks for good health, counting it as an unexpected blessing, as many traditional peoples still do today. (Remember when people simply wished for good health in the New Year?) Buddhist scriptures taught that the bodies we inhabit are fertile ground for all manner of misfortunes, and no sensible person would entertain expectations of well-being unless they were mad. Well, we must be mad, for now we've come to assume well-being, and regard illness as a temporary breakdown of normal 'perfect' health.
"Our concepts of physical and pyschological health have become one-sidedly identified with the heroic qualities most valued in our culture: youth, activity, productivity, independence, strength, confidence, and optimism. Advertisements reflect our picture of health as young, white, slim, athletic...and beaming with 'the cheerful effervescence of a Bernie Siegal or a Louise Hay,' as writer Daniel Harris observed wryly. Even sick people are encouraged to cheer up and be brave, and those who can joke in the midst of obvious agony are revered by all."
Sickness by this definition, Duff points out, "is not only a breakdown of normal health but a personal failure, which explains why many sick people feel so guilty and ashamed....In our infatuation with health and wholeness, illness is onesidedly identified with the culturally devalued qualities of quiet, introspection, weakness, withdrawal, vulnerability, dependence, self-doubt, and depression. If someone displays any of these qualities to a great extent, he or she is likely to be considered ill and encouraged to see a doctor or therapist. In a perversion of recent discoveries of body-mind unity, self-help books encourage sick people to cultivate positive attitudes -- faith, hope, laughter, self-love, and a fighting spirit -- to overcome their diseases. As a result, many sick people are shamed by friends, family, or even their healers into thinking they are sick because they lack these 'healthy' attitudes, even though illnesses often accompany critical turning points in our lives when it is necessary to withdraw, reflect, sorrow, and surrender, in order to make needed changes. Normal life passages , such as birth, adolescence, the crises of middle age, old age, and death, are now treated as illnesses in need of medical intervention, simply because they are often characterized by pain, withdrawal, introspection, and alienation.
" 'In heath,' wrote Virginia Woolf, 'the general pretense must be kept up and the effort renewed -- to communicate, to civilize, to share, to cultivate the desert, to work together by day, and by night to sport. In illness this make-believe ceases....We cease to be soldiers in the army of the upright; we become deserters. They march to battle; we float with the sticks on the stream, helter-skelter with the dead leaves on the lawn, irresponsible and disinterested and able, perhaps the first time in years, to look round, to look up -- to look, for example, at the sky.'
"As Woolf intimates, the withdrawal, inactivity, and alienation of illness threaten the social order, undermining the faith, optimism, attachments, and obligations that keep systems in power -- in the family, workplace, and society at large. In the quiet stillness of the sickbed, where we look up and around rather than straight ahead, another -- truly revolutionary -- perspective emerges."
"Even at my sickess," Duff notes astutely, "when I was spending the majority of daylight hours in bed aching, I knew my illness was showing me facets of truth that I had missed -- we all had missed, it seemed -- and desperately needed."
Like all rites-of-passage, illness and calamity have things to teach us, and stories to tell us. But first we must listen. Then, we must remember. And finally, we must pass them on.
The passages above are from The Sound of a Wild Snail Eating by Elisabeth Tova Bailey (Algonquin Books, 2010), Eating the Underworld by Doris Brett (Random House Australia, 2001), and The Alchemy of Illness by Kat Duff (Pantheon, 1993). The poem in the picture captions is from The Zen of La Llorona by Native American poet Deborah A. Miranda (Earthworks, 2005) -- It's a powerful piece about grief inspired by the legend of La Llorona. All right reserved by the authors.
On Illness, Part 4 is here.