Rituals of the Living

Rituals of the Living

By scribbling I run ahead of myself in order to catch myself up at the finishing post. I cannot run away from myself.

– Franz Kafka

The world of dew

is the world of dew

and yet, and yet –

-Kobayashi Issa (after the death of a child)

On Sunday Rick and Ronan and I take a walk on the arroyo path: past a woman weeding near the chain link fence that separates the narrow neighborhood paths from the paved public path; past two muttish dogs who, briefly separated from their owners, bounce along behind us for a few minutes, panting hopefully for treats we might have stashed in our pockets. We walk toward purplish-blue mountains, the sun a bright bead behind us. A snapshot of another sleepy Sunday with our son. A new week is beginning, with appointments to keep and classes to teach and workouts to muscle through and sketches to write and chores to complete and screenplays to read and meals to eat and people to call/email/Skype. Part of my Sunday ritual has always been imagining how the week will roll out, eventually easing out and slowing down into the weekend with its lightweight to-dos, writing and resting and reading hours and phone chats, all plotted and mapped around Ronan’s naptimes and feedings and physical therapy sessions. The tidy little story of a week. Or so it might seem to an outsider.

The seasons are changing; time is passing. In the afternoon the nursery closet gets updated with toddler hand-me-downs from various friends: plaid golfer-ish pants and t-shirts and polo shirts and my favorite, a long-sleeved onesie with a picture of a friendly-looking dinosaur that reads “Bob’s Dino Diner! Gigantic Bites! WYOMING Hwy 87, Exit 18 B.” Rick stands on a ladder in Ronan’s walk-in closet for almost an hour, filling shelves and hangers with outdoor gear and new sweaters and socks and shoes. Clothes for a bigger baby, a little boy. I watch him for a while, Ronan on my shoulder, and then we retreat to the living room couch where I try to make a to-do list and find that I cannot. I can no longer flip ahead to 2012 in my calendar. I can’t even look at the following week of fall 2011. This small thing: whisking ahead in my old-fashioned paper planner, something I once loved to do – look at all those activities coming up! Look at the sparkly, challenging future! – fills me with dread and questions. When will Ronan die? October 2012? July? Two months from now? Tomorrow? Planners, I decide, are about planning to be immortal, and we all assume that we’ll get another day, another week, another year. It’s part of how we pretend we won’t die. But when you live with and care for a child who is actively dying (or at least dying more quickly than the rest of us are), you learn to live in the present moment.

It’s an uncomfortable, difficult lesson, and one I was given the opportunity to absorb more fully at the “Being with Dying” training session at the Upaya Zen Center in Santa Fe several weekends ago. This four-day retreat of meditation, teachings, and work practice was designed for hospice care workers and others who are actively caring for dying people and want to integrate a contemplative practice as part of a compassionate care approach. The idea is that a person who is hysterical is not the best companion for someone who is experiencing the last moments of life. The weekend was designed to help care workers cultivate a loving presence for their patients or loved ones. I signed us up because soon after Ronan’s diagnosis I realized that Buddhism might be the only religious or philosophical system that has any true integrity around death, which is often treated as an issue to be avoided instead of an inevitable reality.

The first meal at Upaya – a beautifully tended community of temples, adobe structures, and vegetable and flower gardens — is the only one when we will not be observing “noble silence.” When I’m asked why Rick and I are here, I say, just this once, that our baby is terminally ill. The woman I’ve told, who I find out later is a student in the Buddhist chaplaincy program, nods her head. She does not react with histrionics or howls or a grimace or apologies, all of which, of course, make perfect sense. I realize that the effort of dealing with Ronan’s illness is divided between my own emotional maintenance and the management of other people’s reactions, assumptions, accusations, or bland offerings of comfort/Bible verses/platitudes/pity. It’s such a relief to toss death across the table at a stranger and have them look right at it without blinking. There’s something to this Zen business, I think, and finish up my vegetarian rice and beans that have been prepared (we’re told) by Jane Fonda’s personal chef, a woman with bright red-orange hair and soft-looking hands. For the next few days, as a member of lunch clean up crew, I scrub big wooden boats of salad and beans and rice. I secure leftover squares of cornbread in plastic bags labeled with the date. The residents walk around quietly, their hands folded inside front pouches. There are edible flowers in our food. Between sessions everyone quietly drinks cups of mint tea.

Having integrity is different than having answers. If anything, Buddhism offers very little in the way of consolation, acknowledging that nobody really knows what happens to us as we are dying (during the “labor” of dying, as our teachers put it) or after we die. “I don’t console,” Roshi Joan tells us in one of the sessions, and I am strangely relieved. What could possibly console me? What event or success or accomplishment or experience could ever be compensatory for the loss of a child? No, it’s not consolation I want or wanted, but tools to walk through this fire without being consumed by it.

Too bad one is left to contemplate this while attempting to meditate, to “not think,” an activity I have always found maddening if not impossible. But meditate we do at Upaya – up to three hours a day, beginning at seven o’clock in the morning. After the second hour of meditation on the second day, after hours of working in the kitchen in silence, eating in silence, walking in silence and finding none of it “noble,” I felt as though I were moving inside a dark and dangerously heavy circle of sadness. A gong of sadness was ringing in my chest. I’d felt it before, on the day of Ronan’s diagnosis, when I also felt deeply connected to all of the people I know or have known who have lost someone they deeply loved. I broke the noble silence around 2 pm with hysterical sobs after motioning Rick out of the quiet library and into our car parked in the lot. “I cannot do this,” I said. “It’s too much. I just want to be with Ronan.” The not-thinking of meditation left me only with this ringing sadness, a sonar sound that grew and grew, attracting more grief. I could not even begin to approach it. It was like walking into a screaming mouth. He convinced me to stay, at least through the next session. Through tears, I agreed.

The next session began with photographs of dying people or the “death portraits” of people who had just died. Death, in the Christian tradition, is linked with life only in the sense that the sacrifice of Jesus cancels out the tragedy of death, overcomes death for the one who has been granted eternal life on account of his or her faith in this very possibility. The ultimate overcomer narrative, the “light in the darkness.” For Buddhism, dying is an inevitable part of life. Learning how to live is about learning how to die, both figuratively and literally. Dying to delusions. Dying to the relentless and unending demands of the ego. We were reminded that everyone we know or love or will know or love or have known or loved will someday die (I thought of the Flaming Lips song, “Do You Realize”); that our physical bodies, our intelligence, our wealth, our careers, and our relationships – our whole identity — will be of no use to us in that final moment. All must come unbound and undone. It’s one thing to accept this on an intellectual level, but it’s another thing to hear these truths spoken aloud while looking at the faces of people who have just died, some of them showing the marks of struggle, others peaceful, some newly born, others so thin the bones of the face look almost transparent. Some with open eyes, fearful eyes, open mouths, clenched fists, soft baby skulls. I had the thought that this was perhaps my first moment of being an adult, and that I was, just now, finally prepared to be a mother to Ronan. I must love him fully, and I must let him go, and I must be able to bear this. Other people have weathered it. So can I.

But for days I felt sad whenever I saw a new baby – in part because the mother that looked at her baby as if he would outlive her has disappeared for me, that blissful, sleepless and wacky time — and also because I was now uncomfortably aware of the fact that all of those babies will die somehow, some day, and maybe sooner than we like to think or imagine, leaving behind a grief-stricken path of mourners. Everyone seemed to be walking around with the shadow of a skeleton following close behind. Everyone felt impermanent and in danger. In a sense, that’s true, and people working in hospice are intimately aware of this.

Hospice workers often create rituals in the months and weeks and days and hours before a person dies. They might haul out photographs and arrange them on the bed, make videos of the ocean or another favorite place, encourage reunions with estranged family members, offer the choice of reconciliation through letters, phone calls, invitations. One woman dying of a progressive, incurable illness decided to stop eating and have a “living wake.” For weeks people came to tell her the stories of her life – how they would remember her, why they loved her. Others create altars, write songs, throw parties. It’s a way of honoring life without privileging that individual life above any other, which doesn’t make it any less special. Do we become what happens to us? In Christianity, yes. We’re saved. In Buddhism, no. You are bigger than yourself, elemental and amazing and true, but you are also not so important, not so terribly special. You are as impermanent and transient as any other being on this earth at any other time in history. No heavenly reunions, no special ribbons or crowns, just passage into what we do not know.

This Sunday, with Ronan coo-ing on the couch next to me, I log into email and stumble upon a link on Yahoo news: Dr. Oz recommends one-minute ways to live a little longer. Last year I would have read each suggestion and maybe tried to do one or two of them, perhaps all of them, hoping to thicken that planner a bit, add a few more months and years, without realizing that’s what I was doing. Nine months into Ronan’s diagnosis, sitting with his little boy body snuggled securely in my lap, smelling his garlicky hummus breath and trying to loosen sleepers from his long eyelashes, all I can think is — why not just live?

I am motivated to unearth the book Zen Action, Zen Person that I studied for a comparative religion class at Harvard years ago. The pages are thick with yellow highlighter and smell vaguely of beer. I vividly remember finishing the last page at Widener Library on a cold fall day, and later that night, blurry with fatigue, talking with a friend several times on the phone, changing the thesis for my term paper after every conversation. We were charged with using Buddhist philosophy to make “moral sense” of a particular event that occurred during the Holocaust, an incident of ordinary men acting in an extraordinarily evil way. Buddhism felt slippery to me, too inclusive, floppy. I felt like I had emptied my head in the cavernous Widener stacks. Nothing had stuck to my brain. Images of Jesus and Mary kept floating through my vision, which didn’t help. But Buddhism seemed to have little to cling to, and it seemed to lack the condemnation that I felt the situation deserved and that I kept trying to sneak into my paper. There was no cage to put around what had happened; no code to decipher the meaning, moral or otherwise.

Thirteen years later I flip through the book and think, zen action, zen baby. This is Ronan. Up to this point I have actively resisted thinking of Ronan as a teacher, because I’ve felt that it somehow justified his suffering, or made the gravity of the loss somehow less aching, less real, less intense. On this Sunday afternoon as I reacquaint myself with the book, Ronan’s way of being in the world starts to make him seem like a baby sage; he perfectly fits the nickname his cousin Iain gave him – Baby Buddha. What would it be like to not analyze feelings or situations, to not be swallowed back into the past, to avoid fast forwarding into the future, to not be stressed? Writers are repeat offenders in this cycle of worry and suffering. We work in narrative, always ruminating on what might happen and so we see the events of our lives as part of a story, our story, and much of the time our assumptions and conclusions are completely off-base. We are constantly re-writing the ending, revising the beginning, mucking around in and obsessing about the middle. I realize that Ronan can still be a kind of teacher, and I can acknowledge this. I can rage against the unfairness of his illness and also accept it. All at once. In one moment. All at the same time. Zen Action, Zen Mama? Not yet. Many people in the room talked about how they were grieving, but not suffering. I’m not there yet.

I have always known – and feared – the fragility of life. Maybe that’s why I love stories and books – stories seem to stick, they feel alive and permanent and energetic – living on, as they do, after the author has died. From a young age I understood that bodies can be damaged, that they can get sick and die, and that things are just as likely to go wrong as they are to go right. I hovered over a newborn Ronan, terrified that he would suddenly and for no reason stop breathing. But did I ever really anticipate being there for his last breath? Of course not. But knowledge of death can make you live in a more real and raw way that feels weirdly authentic to human life, the fundamental sadness of which is the knowledge of our own death. When you avoid death, you also avoid life. A life-threatening disease makes Buddhists of us all.

I am not a Buddhist, or at least not a very good one, although arguably a Buddhist would try to go beyond rigid judgments of good or bad. No parsing, no taking this and not that thought or feeling, only deep acceptance, mindful awareness. Easier said, written, or thought than done. I desire, defend, and distract on a daily basis. Meditation makes me want to scream, even though I feel its calming benefits hours later. I am full of the poisons of envy, anger, greed, all of it, and much of the time I do not examine the root of these emotions or their effects on others or the world. Which makes me human, I guess, and flawed, and in this flaw is the seed of perfection and peace. Or at least that’s what I gathered at Upaya. I may not know a thing about Buddhism. I might be too locked into that Christian notion that death can be overcome, cancelled out, tossed aside. Or maybe not.

I decide that I can plan for tomorrow, at least tentatively, and one of the weekly appointments on the calendar is Ronan’s meeting with our physical therapist. I glance over her notes from the previous week:

Roan stood three times at the table. Helped his hands and feet elongate with assisted play with plastic farm animals. Also worked on his mouth with a gloved hand to help practice swallowing and closed mouth breathing with more active lip movements. He enjoyed helping hold my gloved hand and it was clear when he was done.

We keep these narratives, written on yellow pieces of paper, in a folder – worried, I think, that we’ll forget what he did from moment to moment. A collection of little “he did” lists. Not a ritual for dying, but little rituals of living, moments from Ronan’s life. I think about what Frank, one of our teachers, said to Rick and me on the last day when we told him about Ronan and thanked him for his presence, his stories, his wisdom: “Remember that there’s a whole person behind whatever physical affect presents itself.” I want to fully remember my son. And I write about him as a way to honor him and all the moments of his short life.

During our break on the last day at Upaya I walked up the road and found a series of trails – perfect for a trail run or a meander or just a brisk walk in the morning. The echo of hammers and the sound of Spanish floated over the empty path. I did feel a lift of sadness, a weight removed, or if not removed than acknowledged. This is the path I must walk. I don’t have to “like” it or even “manage” it, but I do have to accept it. I have no other choice. This is part of growing up, I think. This is part of being a parent. I thought about something Roshi Joan had said the day before: “You feed and wash the baby, even if you know it will die in the morning.” She wasn’t speaking to us, of course, she was telling a story, but she might have been whispering in my ear – the words went straight in. Back at Upaya, I walked down to the small shrine on one of the tree-lined paths that twist and wind behind the buildings. Under a large tree are offerings made by visitors, residents, teachers: a Buddha statue holding flowers, a corner of fabric, a rock that reads “baby girl,” a bottle of coke swinging on a string from a branch, pieces of glass arranged in a circle in the dirt and flashing in the sun. Things placed by living people. In the distance a deer bolted through trees to the road. A sky striped with the beginnings of sunset. The windmill was still in the early evening.

No matter how old Ronan may have lived to be, his body would have failed him, he would have died. It’s a common thing, when someone has a life-limiting illness, to say that the body is “failing” him or her. But according to this understanding the only way our bodies wouldn’t fail us would be if they remained immortal, if they never got old, or diseased. If they never changed. If we were gods. It is a unique and terrible privilege to witness the entire arc of a life, to see it through from its inception to its end. But it is also an opportunity to love without a net, without the future, without the past, but now. I don’t want to be a hysterical mess during Ronan’s final moments; I want to be loving and calm. I want to be a witness. I want to sharpen what is essential in my life and let some of the endlessly worrying externalities go fuzzy. I want a less bossy brain, a less insistent heart, less clutch at the life of my baby.

Buddhism instructs its followers to be at ease, always, with not-knowing, with uncertainty. I’ve realized this year that I don’t know a single thing: not my own mind, not my own heart, not what drives me or inhibits me or makes me who I am. Everything, truly, is uncertain. Does it take a true skeptic to be a true believer? Maybe.

But what about the unbinding that the Buddhists talk about, those last moments before the final moment of life? If hospice care workers and family members try to create the story of a person’s journey, working with their memories and victories and losses, putting together this unique puzzle through picture and narrative, Ronan’s story is like a puzzle with no pieces. What does he have to lose? A baby with no memory, the senses dimming and then entirely dark, that mysterious and magical organ of the brain just running out of steam, out of juice, out of prana or spirit or whatever. The winner of this prize or this medal or the mother of this many or the resident of this town or the teacher of this institution or the member of this family or the partner of this person or the singer of this song or the writer of this book or the creator of this theory or the spokesperson for that product or the person who was friends with that famous person who was famous at that time or the person of this list or the thinker of this thought or the person of this type, race, color, body, category, background, class will have no meaning. For Ronan, it never did. There is us, and him, and that’s it. Frank tells us, “Remember that to him, you are the two faces of God.” All he has to lose, in this scenario, is Rick and me. We cannot follow him; he will no longer need us.

But he still needs us this Sunday, and so I decide to take him out for one more walk. Ronan is more tolerant in the stroller now, and his floppy toddler body more challenging to carry in the front pack, but I like to have the weight of his head against my chest and feel the vibrations of his coos and snorts and his one word, “gee.” I like to see his toothy smile up close. I like to hold his toes and comb the ducktail of curls at the back of his head with my fingers. I like to be, quite literally, attached to him. “Wear your baby!”  – all the “natural” mothering books suggested when I read them while I was pregnant, and wear Ronan I do, my most precious accessory.

At Upaya our teachers told us that to be fully present for a person who is dying you must have a strong back and a soft front. Most of us, they reminded us, live with the reverse. We are outwardly defensive, and because we resist compassion we are actually weaker. A broken heart is an open heart, I guess, and there exists great strength in a shaky vulnerability. Ronan is the ultimate soft front. He is the most dear, the most heartbreaking physical representation of anything I have ever in my life been able to give, have been given, or have cared about. And all of it, some day, like Ronan, will be lost.

On this sleepy Sunday, the sky ink-blue and darkening, Ronan’s eyes drooping, it sometimes feels like little more than semantics or brain gymnastics. I know that after Ronan is gone, I will still listen for him each night, and his face will be the first face I think of in the morning, the face I’ll always miss. This missing will be a daily ritual of my life as long as I’m alive. And for now I will continue scribbling, as if that will help me reach the end intact or sane, and I do it knowing that any scribble might be my last. And the world is still the world, and yet…

Frank told us that the boatman who ferries the dead across the river is also the guardian of children. Is it too much to ask to be on that same boat, if even for just a moment, ferried across with my son in my arms, or worn in a front pack? I’d sit at the back and let his feet dangle in the water. Because I can bet, in whatever final lucid moment I have, that I will see Ronan’s face, and I will wish I could hold him one last time before I, too, am released from this body and make my own crossing from this life into whatever comes next.

12 responses to “Rituals of the Living

  1. Alma Luz Villanueva

    Hola Emily…I’ve been at births/transforming (my own too), and at dying/transforming (wlll be at that one too), the same wondrous, terrifying door, how it felt to me. Reading this wondrous/terrifying post reminds me of those moment, gracias. And that only presence/love/presence is the midwife… Almaluz xoxo

  2. Emily, I read so much stuff, sift through, skim along, just like most everyone I suppose, but I can never do that here. I read every word. I feel like I’m finding strength and collecting it for later–maybe to pass it along, or to call upon it suddenly. Most of the time it’s hard to get out of my own way, or the way of my own sorrows, but here you are, teaching me. So I keep trying.

  3. Emily–Another beautiful, brave post. This line took my breath away: “At Upaya our teachers told us that to be fully present for a person who is dying you must have a strong back and a soft front.” And the last paragraph made me weep and weep. Zen Mama. Love you –S.

  4. I don’t know much of anything, Emily. I was very sure of things 10 or 20 years ago and now I’m not sure of much. I think all we can do is not let those we love pass into the dark by themselves. I like to think that we hold their hands here on this side and that perhaps there is a hand waiting for them on the other side. Whether this is a real hand or a metaphoric hand, I don’t know. Maybe it is just the release of struggle and the giving up as a unique consciousness is extinguished which may be, especially for adults, a comfort. But I like the idea that for a brief moment, those we love are being held tight on both sides world–the real world and the unknown one.

  5. thank you for your beautiful post. I have few words except that as a mother, I was crying after the first graph. I am also a caretake of an ill person and got a lot of strength from the Upaya advice you shared and the growth you are aiming for in taking care of your son. It was very, very, helpful to me — thanks so much

  6. Telainia, I find so much beauty wisdom in your comment, I just wanted to tell you.

  7. Thank you so much, Rosemarie. So much beauty and wisdom in Emily’s every post, too.

  8. Dear Emily, We am finally in a quiet place after a long road trip so I can attend to your recent posts in silence. This one is particularly meditative and meaningful. Thank you. Much love to you three, Donna

  9. Emily, this left me weeping. Your honesty and wisdom is profound. I have a feeling I’d be a better Christian and human being if I adopted some of the Buddhist philosophy you describe. My four-year old has been asking a lot lately, about whether he and the various people he knows will die. He grieves each affirmation. Though we make it sound very natural and nothing to be afraid of, inside I secretly want to deny that it will ever happen. Your wisdom makes me think it may be better to see death as simply another door, not an enemy.

  10. Emily, this left me weeping. Your honesty and wisdom are profound. I’d be a better Christian and human being if I adopted some of the Buddhist philosophy you describe. My four-year old has been asking a lot lately, about whether he and the various people he knows will die. He grieves each affirmation. Though we make it sound very natural and nothing to be afraid of, inside I secretly want to deny that it will ever happen. Your words make me think it may be better to see death as simply another door, not an enemy.

  11. I try, as much as possible, to practice the Buddhist idea of contemplating (or at least sitting quietly with) death every day, not to shove it away in fear. I don’t know how well I do with that, really. But reading your words today and hearing how you are journeying onward through the most rocky, the murkiest places, encourages me to make more of an effort. I don’t think we can ever know what comes ‘next’ after life, but I feel so strongly that the love we give and receive during our time in this world will follow on into any that follow. And I know it will be so for your little seal (and for you).

    Thank you for writing this, and for making me think and try a little harder.

  12. Thank you so much for your posts and the wonderful opED in the NYT. I believe you and Ronan have touched so many people and been a positive force in ways you can’t imagine and would surprise you.
    Lots of love to you both.

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