On illness, 2: The Nights to our Days, the Roots to our Trees
On illness, 4: Emerging from the Forest

On illness, 3: Wild Snails, Shadows, and Grown-Upness 101

Journey 1

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.

Journey 2

The Sound of a Wild Snail Eating by Elisabeth Tova Bailey

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.

Journey 3

"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.

Journey 4

"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."

Journey 5

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."

Journey 6

Eating the Underworld by Doris Brett

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."

Journey 7

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."

Journey 8

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.

Journey 9

"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."

Journey 10

The Alchemy of Illness by Kat Duff

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.

Journey 11

"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."

Journey 12

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.

Journey 13

" '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."

Journey 14

"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.

Journey 15

Books on illness

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.

Comments

This one is beautiful too, Terri. Poetry inspired by La Llarona set into the picture pages of your Beast in her element ... it's the salt and fresh water of medicine that reaches illness. I know the poem and the legend from the film Frida, it's haunting words sung by a grand Chavela Vargas and then the character playing Frida (Salma Hayek) The grief we choose might be different tomorrow. Thank you for the reference to these writers I understand their language, appreciate their company.

The YouTube to La Llorona from Frida is here. https://www.youtube.com/watch?v=oSyOMIqmFfU

Too many people take health for granted as though they are invincible, and I see this in many young people. Fortunately and unfortunately, as a very young child, I knew better. I was never whole. Part of me was always missing and I was always searching for that absent part. The physical became mental. The illness, a very dangerous one, though cured, had seeped into my brain, where it lived as a scar, with related, chronic illness. I never even understood this until I was an adult. But in a way it grounded me and my feelings about mortality. While other young people felt immortal, I knew better. I had a dread of chaos and for better or worse, I never doubted how fragile life was. This too left its mark in complex ways. The sad thing is not having a voice. No way to express what you have expressed here so elegantly. No way to see this and to make practical use of it. Most people living with chronic illnesses do not. I emphasize this because I had many years where I did not. There were no teachable moments. I think what I am aiming for here is that most people do not understand the emotional and mental cost of chronic physical illness.

A long time ago, I saw "In the Gloaming" with Glenn Close as the mother and Robert Sean Leonard as her son with AIDS. What I most remember is an image of those two sitting side by side on lawn chairs in autumn sharing an altered view of the world. Much of this post reminded me of the value I still find in that image.

One of the most profound, illuminating and comforting posts you've ever written. Having been through a near death experience this month, I take every word and image in, sipping it slowly like fine wine. I am deeply happy for your recovery and grateful for mine that I may continue to be charmed by your gifts. Thank you for always bringing such light into the darkness.

Hi terri

I found these passages along with others this week very moving and revealing. I have lived with certain illnesses and have known people around me (mostly family) who suffered and suffer through chronic ones. It's always hard to watch someone wince in pain or struggle to move or release the burden of depression. This quote in particular struck a familiar chord with me --

"It's hard to swallow the fact that we have little or no say over the extent and timing of our illnesses"... I would add to that the
nature or temperament of pain. It is also the illusive factor of certain conditions. It can consume, take flight for several hours, days, weeks, mask itself as something else or simply haunt as a dull throb, a trace of awareness that is there but not always allowing one to be cognizant of its presence. It can fool and taunt the individual with its power or lack of power. It can deplete or foster hope depending on how it acts or doesn't act. It is a strange
being owned by illness we can suppress with pills/exercise but never fully control.

Pain

Some days, she returns
to her burial ground, ancestor among ruins
of cliff and bracken. A shadow that haunts
casting only nuance.

Other days, she rises
thorn--winged from the ashes (burning)
through limbs, joints -- the bone mask of the pelvis.

and on rare days, she fades behind a sky
that wraps its blue shawl around the mountains
singing over my bones, making me believe

she has fossilized into an age
of forever gone. The limestone print
of a pterodactyl.
_____________________________________________
Please take care, I hope you are feeling better and continue
to heal speedily.

My Best
Wendy

Thank you, Terri. As someone with multiple chronic health conditions that often make me feel hemmed-in to my life rather than free to live it as I choose, these writings helped give me encouragement and perspective.

There is so much wise beauty here, but what touched me the most was finding the lovely pieces of wisdom embedded in your photographs.

So much wisdom in this thread this week, both in your posts, Terri, and in the remarkable comments. Thank you, all!

I've never had this type of illness (yet...), but I have a disability - severe deafness - and I do find some points of contact in what you've posted about how I handle it, and how people respond. I'm willing to talk about it, but quite independent in how I manage it (I was born deaf, and have always lived in the hearing world) and I've seen how that has shaped me, and both my responses to other people and theirs to me. Sometimes for good, eg, if/when they show understanding (perhaps like the friends that stick around); sometimes less so, when I come over as aloof. I couldn't imagine me without my deafness now, but I wouldn't wish it on anyone.

Your offerings are measured, rich and deep.
Thank you.

"Thorn-winged. . ." really? Thorn-winged? That is perfection.

Jane

To David, Because I Am Still Angry

You, so spendthrift with your health,
casting those precious coins into the wind.
The birds saw more of you then I did,
except at the end when we sat by the big window,
watching them together, you near blind
still seeing them closer than I could.

You, so miserly with doctors, you let the crab
gnaw at your brain as if that wasn't the part
I loved the most, except for your humor.
And it ate its fill, defecating on the sofa
where you hunched, and the hospital bed
leaving the soft parts behind.

You so full of life and will, even at the end,
when pain was your closest companion,
so close that you could turn to the wall
and walk through it with all that pain,
leaving me still holding your cooling hand,
the last great magic trick of a man

who could call down owls in the dark.

©2015 Jane Yolen all rights reserved

Beautiful and haunting poem. Many thanks for sharing this.

I treasure these posts on illness and the poems by Wendy and Jane. So much here to hold in the heart and ponder.

Thanks for the wonderful post again, Terri! I have read "The Alchemy of Illness" but not the other too... absolutely must read "The Sound of a Wild Snail Eating" now!

Yes, I remember that. It haunts me, too. Aids in San Francisco then was taking away so
many of my talented and witty friends and colleagues; you never scolded yourself for
crying so much. "In The Gloaming: was like so many survivors I knew. And some I still know now. My older son has been head injured since he was 17, but he is very strong in some ways. He is older now, and failing. Some memories are going away and he can no longer walk, and is in a wheelchair. now. His bravery and determination to stay alive amazes me.
He lives too far away from us now, and it's difficult to see him as often. But we know not what next, now.

This is one in a series of poems that break my heart. When my former husband died, we
had been divorced for 25 years; all the anger and sorrow and adjustment to being alone was rock still by then. It was like losing an old friend who had gone off to some other life. I'm still a friend to all his family, as they are twined with me and my children and grandchildren.
Loss has differences; anger, loneliness, abandonment; I can carry it around like something precious but tarnished. But still there. So I can feel it still in this poem.

Hi Jane

There are hardly any words for how painful/poignant and beautiful this poem is!! I will say it moved me so deeply and I cried. Thank you for sharing this. My prayers and thoughts for personal loss are sent to you!

Please take care,
My Best
Wendy

Hi Jane

Thank you so much for commenting!! I really appreciate!

My Best
Wendy

"She has fossilized into an age of forever gone..." Lovely.

Chills and tears. Thank you.

In my life, I've learned that so much of my suffering came not from illness or loss itself, but from the enormous pressure and guilt I placed on myself during difficult times. It's been said here in so many beautiful ways, and I think it's always helpful to hear, that one of the greatest things we can do for ourselves is to be kind and tender, as we would for a dear friend or a child in our care. Thank you, Terri, again and again. I hope this week has been good to you.

Thank you Edith

Your kind comment is so sincerely appreciated!

Take care,
Wendy

Thanks to all fr reading and responding--have been traveling (writing this in Georgia) which makes communications sometimes fraught.

Jane

No Choice

Limp. No choice. Like
Overcooked spaghetti,
All my must to do's
Drying up. getting cold.

In what cookbook
Have I fallen into?
I measure and spoon out
So much, what to do.

Sleeping in seems a sin,
What stirring pot am I in?
What metaphor have I met?
Sulky, cold not cool.

I am not the witch, nor
Very classy foodie
Terribly not goody, goody,
Why? Some dumb menu.

I wish I was a smart cafe'
I wish I was having a good day,
The night is mine, to crawl into
To dream myself to be just me.

Not a flat strange stranger
Who does not care how
She looks. Hiding behind
Books. Want to go out.

Out in the real world again
Where I am needed, I take
My pen, Scribble now
Rise up and live. More to do.

Beautiful post Terri. I can't really say anything as you always put everything so wonderfully. Please continue to get better,you are such an inspiration. Just back from Glastonbury yessterday., lovely to read your posts this morning. x
Angela x

Hi Phyllis

What stirring pot am I in?
What metaphor have I met?

We often ask those questions when life's tasks and "must dos" pile up. We have no choice to but eventually face and complete them. Yet, that world between writer/artist and the malaise of everyday life is one that makes us question our identity. And in the midst of it, as your wonderful poem infers, we come rather confused trying to balance everything out and determine priorities for both sides of our character and life. I really like the witty tone of this piece.

Thank you
Wendy

Thank you so much Wendy. This poem just blurped up, and I had to hold on. Was almost not sure it was a poem, or a riddle. But all true.

Terri:
your post and photos of your magnificent dog and the poetry included served me today in ways I did not expect to find. I have lived with chronic illness for l2 years and have experienced ALL of the guilt and depression and sense of failure and weakness that has been expressed here. Yes, and my friends....never feeling anyone really got it, or understood....feeling the separation from my former self and from the life I lived reflected in the alienation or helplessness of those around me. I then withdrew from their discomfort increasing the hopelessness of my situation. But always the guilt...as if somehow I brought it upon myself...I didn't think the right thoughts or meditate correctly ....always took the blame for this condition...hating it and myself and those who asked hopefully if I was "feeling better?" Never an answer that would suffice.
Thank you for putting words to many unspoken feelings.

Oh Jane...I don't know what to say....

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