Emily Rapp's Blog, page 6

Benchmarks

Benchmarks

Waking up knowing this much is not the hard part

nor lifting the head from its existential drift

            it's the sticking of one's foot off the edge

            lowering it to the cold floor

and finding the correct instrument

to work that crack into a big enough opening

            to venture forward

  Before the fall no story after the fall the old story

After the fires floods along with serpents and bugs

After the floods years of drought

After drought just dusk which is when everything

            really begins to hurt

-from "End Thoughts" by C.D. Wright

Today we meet with our physical therapy team for the first time since they began working with us six months ago: an oral therapist, a physical therapist, a speech therapist, a hearing specialist and the program manager who coordinates these services. Rick sits with Ronan in the beanbag chair and I sit next to them braiding Ronan's wavy, sandy hair, which has grown so long that we discuss cutting it almost every day ("I'll just cut the back and leave it moppy on top," Rick says), but never do. I like the way his long curls snake across his forehead, and the way humidity rolls one big fluffy wave over his left eye as if I'd styled it with hair gel and a curling iron.  (The shape of his curls reminds me of what I was shooting for when I spent hours frying my hair with Clairol Hot Sticks in the 80s.) I like to gather curls on top of his head into a floppy ponytail-fountain, the way my mother used to style my hair.

It's an overcast day, rare for Santa Fe, and as we sit in our small living room discussing different pacifiers and toys that may help stimulate brain activity and increase sensory experience, how to minimize drool (fruit leathers and beef jerky – who knew?) and maintain mouth function, is he still eating and how does he move now if at all and can he still swallow it occurs to me, and obviously not for the first time, that all of these specialists are trained to help develop abilities that Ronan is losing, and rapidly. I feel sleepy and sad, and just as I'm thinking I could use a nap, a chance to just not be awake for this, to be away from this discussion, this reality, this room, this life, I'm thinking mercy, mercy, they ask us about Ronan's sleep habits, which have changed. "He sleeps on his back now," we tell them, because it's uncomfortable for him to wake on his stomach and not be able to lift his head. They are kind, and they have Ronan's best interests at heart, that's always been clear, but they are in the business of child development. They speak the language of benchmarks, of strategies that if correctly followed will help lay important groundwork for the future. Ronan coos and sighs, positioned peacefully in Rick's lap. Our future-less, gorgeous, loved-like-crazy kid. No instruction manual here. Just a daily act of — what exactly? Faith? Hope?

Talking to my friend Monika last night she told me that she's "wired for hope." I'm glad I have friends who can be wired that way on my behalf, which I know they are, because I'm not, but I wonder if that's something I should work on. Not hope that Ronan will be cured, not hope for more children in the future, not even hope for peace with this impossible situation, but hope that I can allow the wheel of every day to turn forward without pushing too hard for change or newness or life or something, on the one hand, or checking out completely and flinging myself down the hole of police procedural dramas on the other. I need hope (but of what ilk? What does it look like? How does it feel?) to go forward through all the moments as Ronan traces the traditional developmental milestones in the opposite direction. Maybe hope is about being fully present (but again, what does that mean?) to Ronan's regression, which is, in fact, the direction and path of his life. But is that perception or truth? You are not your thoughts, and thoughts are not real my therapist reminds me. True. I can see that with Ronan. He is…Ronan. Little boy. Child of ours. Sweet and sour and soft and stinky baby. He is not a bundle of neuroses or habits, and although his personality is distinct to Rick and to me, to others I know it appears fuzzy, blobby, sleepy. Nobody can quite place his age, many people think he's a girl, and if they watch him in a coffee shop they'll notice that his hands stay positioned on top of his stuffed dragon, he doesn't cry or complain, and every once in a while he may express himself with a sigh or a hoot. I thought I would care about people's perceptions, their opinions. I don't. Not at all, in fact, which is liberating in some bleak but wholesome way. I jabber to him while I drink my latte and read the newspaper and hold his hand and get up in his face to kiss him.

After Team Ronan leaves, I put Ronan down for a nap and lie on the couch in the quiet living room, listening to the rain drumming against the roof, growing stronger and steadier and then almost deafening. I think about the walk we took through the mountain aspens on Sunday afternoon, those coins of solid yellow light falling back and forth through the breeze, the creek running down the hill, the camper who suggested that Ronan's feet were cold and that he needed socks. I can't sleep if my feet are cold, she cautioned. And he looks like he wants to sleep.

Off the mountain, the chamisa is blooming, spiky bushes with pollen-soft pom-poms that float through the air along the arroyo path – Ronan's Path, as my friend Kate has named it – and make everyone sneeze. Even with these spring-ish blooms I'm thinking of winter, and the way I'm training to ski this year, actually get on the slopes instead of just talk about it, and I'm remembering the coach who taught me how to ski. How tough he was during the lesson, screaming at me during turns, shouting at me about being too slow, and then how soft and gracious and encouraging at the end of the run, his gloved hand help up for a high-five that I was often almost too exhausted to reach for. He'd had a beloved student early in his career – Retta – who had lost a leg to cancer in her teens, gone into remission, and then died in her early 20s when the cancer returned. He named one of the most difficult runs for her: a narrow chute of shaded ice and spiky moguls. I loved skiing that run – the sheer challenge of it, the heave and muscle required by the body to reach the end. I loved thinking about Retta as my thighs burned and my heart strained against my ribs, thinking about every other body that had skied down this run remembering Retta's body, her life, even if they'd never met her. Retta's Run. Ronan's Path. We all tread heavily on the earth, even if our feet never touch down.

At his last pediatrician appointment Ronan had lost a pound and grown an inch. His eyes didn't respond much to the doctor's little pen light. In the morning, when we notch ourselves onto the mini-couch and I lie Ronan on his side to face me, he'll often smile but his eyes are moving quickly, too quickly, watery, or as if they're tracking the quick gush of water across glass. The rain gets heavier in the afternoon, and I think about the dream I had last night. I was in Russia, inexplicably, trying to find a bed for Ronan, just a space to set him down so he could sleep. I kept running from bathroom to bedroom, but the spigot in the bathroom kept soaking me through, making me too heavy to run, to search. And then, suddenly, I was alone on a cart, Ronan-less, passing a church in the desert (?) near a rural Russian city (with a make believe name I can't remember, but it started with a Z), passing churches where children were playing, their hair fluttering up like dark flags as they jumped up and down and I said to my cart mate, a woman with her head and half of her face covered, I know them.

We told Team Ronan that we think his vision is best just after the sun has slipped from view, in those last few minutes between day and night when the light narrows and Ronan's path is like a dark, ambling river, peaceful and running strong. When I tip Ronan's head back a change comes over his face, as if at the end of some lit corridor he has identified something he recognizes. Mercy, mercy. What is a merciful heart? An unquiet one, a broken one, a faithful one? All three? How do you know when you've reached the benchmark of hope within sadness, along a senseless path, a hope that will see you through? When you can see beauty and brutality in a single stroke, when you can relax into the soft moment but feel within it the tip of the hidden blade?

The Weight of Things

Today a link to an essay on The Nervous Breakdown:

http://www.thenervousbreakdown.com/em...

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.

And Life a Dream

And Life a Dream

I walked the horse around the hayfield even though it had yellow eyes

and would hardly let me touch it. I brushed the field dust off,

soon it was there again. If I kept watch, watch would be kept over me,

I thought. Plums rotted the branch, every few minutes I passed them.

I didn't want anyone to come near me while I was in those fields.

-Katie Ford, "Petition"

The meaning of life is that it ends.

-Franz Kafka

When I asked my brother-in-law Matt about his experience of September 11th, he told me that he was walking across the bridge, away from Manhattan, under a cloud of ash and smoke, the city on fire, and he thought: I can't believe I'm awake for this. It was a dream. Vivid and horrible, with elements of both the real and the unreal, the mundane colliding with the unbelievable. Walking away from his office in the Financial District was something he did every day, only on this morning he walked in the opposite direction and through chaos as the streets burned and the sky glittered an almost crayon-colored blue.

Any catastrophic event – one that changes a nation's or an individual's consciousness – routinely elicits a reaction of disbelief, all the known unraveled, everything splitting apart. The feeling of tumbling – up, down, sideways, backwards, in circles. When Ronan's diagnosis – his death sentence, really — was delivered in the eye doctor's office, I felt like the walls were moving; they were no longer beige but purple, glittering, closing in. Walls with open jaws. The nurses were like phantoms, moving in and out of the room with paper cups of water and white sedatives balanced like little rafts in their palms, whispering, promising relief and oblivion, trying not to stare but staring. My voice: not mine. The chairs had changed color and moved across the room. I was standing on my heart, which was simultaneously beating in my nose. I was screaming into the phone but no words left my mouth. My hair was on fire but my face was cold. My fingers were on the ceiling and I had swallowed my own teeth. I had landed in a super fucked up version of Wonderland, with no peppy Alice, no tea parties, no smiling cats. What do you mean there's nothing to do? I can't believe there's nothing to do. Rick was saying. Action was required, it seemed, but action was useless. Yet in my blown-apart mind I was already brokering a deal. If you take Tay-Sachs from Ronan I will do anything you ask, I'll stick a knife in anyone's heart, just say the word. Jesus, Zeus, God, G-d, Allah, anyone. Useless bargaining with a higher power I had long ago stopped believing in. I prayed, to my own horror, and I was so overwhelmed, so out of my body, so fully in the dream of disbelief, that I actually believed that it might work. Riding home in the backseat, clutching at my kid who sat giggling in his car seat, oblivious to his condemnation, it couldn't be happening, I thought I can't believe I'm awake for this. I don't want to be awake for this.

I am still not fully awake, and maybe I never will be again, not fully. I'll be like that horse with the yellow eyes in Katie's poem, wary of touch and tenderness. And I will never return to that eye doctor's office and the part of me I left behind there. My ritual detour to avoid Cedar Street takes me through a neighborhood where a single word – penis – is painted in a neat cursive scroll along the low walls surrounding a small, sweet park.

Katie's poem (from the collection Deposition), is part of a series of poems that re-imagines the stations of the cross. These poems take us out of the purely sentimental or prurient – both of which are often present in stories that try to re-imagine Jesus' journey to the crucifixion. Here we are privy to the thoughts of a doomed man. Here Jesus is human; not just a vessel in the story of the journey to salvation. He is not an end goal; he's a person. Everything is charged and frightening and potentially explosive. Nothing is touchable. The broken mind wants to be left alone; it's the only way to keep the pieces intact. I often feel a great desire to be left alone, to walk and walk and walk. I don't believe in Jesus, but I can recognize the imagined voice in this poem.

To petition is to pray, of course. One offers petitions. One is a penitent. Pilgrims journey the twenty or so miles from Santa Fe to Chimayo each year, the last half mile sometimes on their knees. They walk and crawl and stumble, and often as a kind of trade; in the 70s one man walked because his son had returned unharmed from Vietnam. Others walk to be healed, for peace, for comfort, and they all walk for answers. They leave crutches and crucifixes and photos and notes. They leave shoes for Santo Nino, the little toddler saint who scurries around performing acts of mercy and forgets about the wear and tear on his shoes. But petitions are ultimately like lists: endless, pointless. There's nothing more depressing than discovering a stack of old to-do lists. All those things that seemed so important to accomplish, forgotten now in the buzz and whir and blindness of every day living. Reading them is like trying to fit into an incomplete shadow of your former self. Once when I was cleaning the drawers of my house in Martindale, Texas, a house where a woman had lived for fifty years before being taken to a nursing home with dementia, I found a list: bread, potatoes, beer, CALL ALICE. The saddest list in the world.

I don't believe in prayer because it seems like just another way of wishing for luck, that mysterious and bitchy little two-faced sprite. What does it mean that a friend gets down on her knees and begs for her father to be freed from cancer, and he dies while someone else goes into remission and survives? One's prayers were stronger than another's? God chose someone and not someone else? Mercy is meted out on merit? Someone deserves it? We say this all the time: you deserve to be happy. Do we? Does a baby deserve a long life? Of course, we see a baby and see innocence; we don't see what or whom that baby might become. Does a murderer deserve the death penalty? Yes, we might say, but we certainly don't imagine that person as a baby. Does someone deserve to live past 30, 42, 57, 76? What does anyone truly deserve? You're a survivor! people say, but nobody survives everything.

In one of Ronan's physical therapy exercises we place him in a blanket and, using it like a hammock, we rock him from side to side until he rolls to his right or to his left. A new position, a way of experiencing movement without having to muster the brain power to move, which he doesn't have. Roll, roll, roll your Zoat, gently down the stream, merrily merrily merrily merrily, life is but a dream, we sing, using his nickname. He likes to be on his side. He can still reach out. Rick and I put him between us in the bed in the morning and roll him from one side — "Here's the Mommy," to the other –"Here's the Daddy." This often makes him laugh. He's still interacting, not yet in that future state where he will not move or see.

Prayer chains, prayer loops, broken-record prayers, prayers written on walls. I've taken names for the prayer list before for my dad. Someone might "pray for the Savior's Guidance," or "ask for God's comfort." There are tiers on the prayer chain, depending on how sick you are or what you need/want/desperately require. A chain of command, with God and Jesus at the top. You can choose your level of intercession. It makes me think of double coupons or fire sales, as if people truly have a choice. I'll give this for this. Choose your own death adventure. I'll pray for you people say, and I want them to. Maybe they know something I don't, and usually I believe they are being loving and trying to be helpful. But really I think that nobody knows anything at all. And maybe that's okay. I am constantly seeking some kind of explanation for what's happened to us, for what has happened, for what has already happened. Meanwhile, Ronan requires nothing of me – no proofs, not charts, no stories.

Death destroys all the constructions we create: our bodies, our minds, our careers, our meaning on the earth, our silly little dramas. It strips away every delusion. It leaves us bare.

I feel bare most of the time, and not always capable of rubbing up against what's outside the door of our house on Sol y Luz Street. It doesn't make sense to invest in anything (that future-oriented act) because the future makes no sense. But Ronan makes sense, sitting here beside me now, watching the blades of the ceiling fan spin. He's my buddy, my pal, my little doomed and dying dude. He is completely helpless and absolutely extraordinary. I watch him and sing to him and he coos and quacks at me. Does he know who I am? Who knows? Maybe I'm just another face in what is his constant waking dream. Maybe he's just one in mine. We do a lot of napping together, and it is always after these peaceful snoozes, maybe the only decent sleep I get, when I feel the greatest loss. There he is, but I know he won't always be. Here he is, but someday I'll wake up and it will just be the birds outside the window and the impossible, silent sky.

At the Wailing Wall in Jerusalem you can slip a wish between the gaps in the stones, scribbled on the torn end of a napkin or a smoothed-out receipt. Five years ago I shoved a few words written on the back of a fortune slip from a cookie and I don't remember the wish. To marry the man I had come to Israel to be with? Maybe, although I did not marry him. I felt almost sick when I shoved my skinny wish into the wall. The stones looked covered in spit balls, pieces of paper sticking out of every corner, every available crack. We had just been to the Garden of Gethsemane, a tiny olive grove fronted by a church with a grumpy priest whose shushing noises spiraled up into the rafters. It felt small in that garden, and sad. The place where Jesus (supposedly) contemplated his death was overrun with sunburned tourists arguing with one another and snapping souvenir photographs. There were so many people at the wall, too many. Praying voices everywhere, men in one section and women in another. The noise of all those wishes, those wails, both heard and unheard, seen and unseen. All those fingers searching for space where their ardent little prayer might fit. I felt a weird stomach-drop of grief. I wanted to be alone in the hazy twilight, away from anyone's imagined future, including my own. I wanted to walk again past the Roman city that had recently been unearthed beneath the old city when a construction project broke ground. It all passes away; people once walked through those streets below the current walkable streets. Under our feet they had worried and hurried and obsessed and loved. They murdered and lied and forgave and started again. Maybe we must be hidden before we are found? But that's too easy. That sounds too much like the lyrics of a song.

"Grief is what tells you who you are alone," Gail Caldwell says in Let's Take the Long Way Home. When Ronan dies, I will have witnessed the entire span of his life, this dream, these few years. And then he will be gone. I will be alone. To know that it's coming, of course, will spare us nothing.

But after we are not spared, after it is over, then what? Will I again have to pass through, as Caldwell describes, that "madness of early grief," those moments in the eye doctor's office? I hope not. But there will be other places to travel. How many doorways and thresholds are left to cross? How many fields to traverse, harvest, burn to the ground? I want to be left alone in the field of my grief, in the dream that spins around Ronan. I want to sit and stare and speak and be left alone.

In the midst of pondering these existential puzzles I watch adaptations of Charles Dickens novels on Amazon. Period dramas never disappoint, and since Andrew Davies seems to have adapted all of them for the screen, they have a predictable tone and feel to them. A Dickens villain is wholly villainous; the goodness of his heroes and heroines never falters. All the plots hang almost entirely on coincidence and chance encounters. No wonder his stories are such a comfort; it can be a relief to sidestep the gray areas and just dwell in black and white, one or the other, this or that. The good are rewarded and the bad are given their just due. Honor trumps wickedness in Dickens as it never does in real life. It's like Law and Order for British Victorian times.

Yesterday I went for a walk under a cloudy sky, the air uncharacteristically humid, some distant rumble in the sky. The usual complicated mid-afternoon New Mexico skies. Ronan was napping. I needed to "take an airing," as a character in Dickens might say. Roaming around in the mostly-deserted mini-mall at four o'clock on a Saturday afternoon on a holiday weekend, I found a frozen yogurt store and a cupcake store, one right next to the other. When Ronan was a newborn and only slept when he was strapped into the front pack, I walked every day to San Vincente Boulevard in Brentwood for a cupcake and a big bucket of frozen yogurt covered in chocolate chips. I ate over Ronan and sometimes had to clean frosting from his bald head or pluck a chocolate chip from behind his ear. Yesterday afternoon I sat down on the curb and wished someone would run me over with a truck. A dream, a dream, a dream.

Picking up take-out Vietnamese food in the grim strip mall near our house I saw a woman carrying a baby, probably about a year old, although my recognition of different developmental stages has faded with Ronan locked at six months. If an evil spirit, some anti-angel had appeared at that moment and said you can give that baby Tay-Sachs and Ronan will be just fine but you will burn in hell for the swap I would have done it. I'd give it to myself, to Rick, to my parents, to anyone, really, even this unsuspecting parent. A million times I've said I wouldn't wish it on anyone but that's not exactly true. Grief is ruthless and brutally immoral. And of course these hypothetical situations add up to nothing because they're impossible. Still, at these moments of condemnation (of others and of myself), I feel alone in a cage with some wrathful animal. We circle each other, come forward and retreat, forward and retreat, bearing our teeth, provoking, strategizing, bargaining, preparing to strike. We know who the other one is, but we are unable to make a connection. If we do, one of us will die.

The future stretches out – tenuous, terrifying, unstable – as it does for everyone, but I preferred believing that I had at least some control. Knowing that nothing will ever be this hard is hardly a comfort. Every change bears a time stamp; every change of season might be Ronan's last. I could have soldiered happily on in that delusion; like most people, I might have gone through the rest of my life not knowing I was a carrier for a fatal disease, as most of us are, even if it's not Tay-Sachs. Nobody is freed from genetic calamity. The future is a dream I have no interest in getting to know. Ronan will be freed from his body, which can only be a good thing since it's killing him. But is the point then just to go on? To keep teaching, writing, maybe parenting more children, maybe moving states, jobs, countries, lives? If you've been nomadic for so long, if grief stretches your emotions so threadbare, if all life becomes a kind of waking dream where nothing's real, nothing matters, nothing sticks? Then what?

This might be a growing-up-Christian problem, because salvation is supposed to stick. It's the offering, the prize, the end of fear, the end of death.

This morning I heard a man on the radio quoting a study that had attempted to prove that the onset of paralysis was directly linked to that person's emotional paralysis. The thesis was that our emotions are yoked to these vessels, our bodies, and if they are compromised, so are our feelings. We're less sad and less happy, the researcher argued. We're just less. I couldn't listen to the entire interview, because it made me both relieved and afraid. Will Ronan feel less as the disease progresses, and will that be some kind of mercy in the end, when he's unable to fight death? When he doesn't know what's happening to him? The other Tay-Sachs moms were right; he dies a little bit each day. I often feel like I've let go of him in a dark hallway and he's started to run and at first we're nose to nose, the two of us, and then he sprints away and I'm slowed by something – fatigue, confusion, fate, some inability to do the right thing – and very quickly he's out of reach. And then I can no longer see him, and then I'm alone. Only a dream. In the meantime, I'm crossing fields every day, quaking, trying not to touch anything.

Guest Blog by Sarah Sentilles

Today Sarah Sentilles, writer, teacher, activist and scholar, gives us a powerful argument for new theological approaches to death. Sarah and I met at Harvard, where we were both graduate students in theology. Her presence, in person and on the page, is unique, compassionate, fiercely smart and perceptive. Sarah's latest book is Breaking Up with God: A Love Story. For an interview and excerpts from the book, visit http://www.thenervousbreakdown.com/ss.... Visit Sarah at www.sarahsentilles.com

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I believed in God because I thought it meant I would never die. My faith would protect me, and as far as I could tell in church, eternal life was the whole point of belief, maybe even the whole point of Christianity. How do we know Jesus was the Son of God? Because he never really dies. Because he rises from the dead. Because he lives forever. And, if you're a Christian, and if you believe, you might live forever, too.

For much of my childhood, I carried the secret hope that I was immortal. I learned about immortality in fifth grade during a unit on Greek gods and goddesses, and I hoped I might be one of the chosen. Death happened to other people, but there was a chance it wouldn't happen to me, especially if I was good, if I prayed, if I played by the rules. This secret fantasy warped my vision of the world around me. Believing there was a possibility I might never die rendered my life more real than other people's lives, more important, more blessed. Decades later, when I saw The Truman Show—that movie with Jim Carey when he discovers his life is a television show—I realized my childhood vision of my life wasn't much different, with everyone else as prop, as background, and I was ashamed.

I am sure my confession that I imagined myself immortal (something I've never admitted to anyone before, but Emily's writing is so brave I felt I had to tell something new here) seems stupid, self-centered, small-minded, and it is indeed all those things. But it's not that far off the mark from the kind of theology I was asked to believe as a child, and I don't think it's much different from the kind of theology you'd hear if you walked into just about any mainline Protestant church on a Sunday morning. I was taught to pray to a God who could save me. I pictured God sitting on a cloud in heaven keeping track of all our prayers. Ahmed got seventeen prayers today! I guess I'll cure his cancer, I imagined God saying, then clapping his hands (this was a male God, and, yes, he had hands) and sending one of his minions off to work a miracle. Prayer nurtured the seeds of theological thinking that had already been planted in my mind—that there was something I could do to live forever, that there was something God could do. My mind bent into the shape it was asked to bend into. I took the stories I heard in church—about heaven and hell, about baptism, about commandments, about prayer, about rising from the dead—and I crafted a world in which death was not a natural part of human experience. It could be avoided.

But Jesus did die. He was killed, executed. That's pretty much the only thing about him that's known for sure. The rest of it—the angel stuff, the seated at the right hand of the father stuff, the appearance in upper rooms and on roads—was written in much later.

I heard Rita Nakashima Brock and Rebecca Ann Parker give a talk about their book Proverbs of Ashes in Cambridge years ago, and they called Christianity a haunted religion. Christianity, they said, is haunted by Jesus's ghost because no one mourned his death. The storytellers let Jesus be dead for only two days, maybe three, depending on how you count. No one had enough time to grieve. Everyone decided to pretend he was still alive.

In Breaking Up with God, I wrote about a seven-year-old girl I knew who was diagnosed with a brain tumor. Her family belonged to the church where I worked as a youth minister. I taught Vacation Bible School one summer, and she and her younger brother came to my class. For one lesson, I gave everyone a disposable camera, and we went into the garden behind the church to take pictures of things we were thankful for. At the end of the day I sent them home with their cameras to take more gratitude photographs there. She was too sick to come to Vacation Bible School after that, but her brother brought me her camera a few weeks later, and before I made time to get her photographs developed, she died.

I went to her memorial service, and after the service, as I stood with the rest of the congregation in the church's basement and watched a slideshow of family photographs, I heard someone say to the girl's mother, God must have needed another little angel in heaven.

These weren't words whispered behind the mother's back in the dark. Did you hear? God needed another angel. These were words said right to the mother's face, which makes me believe the woman speaking them meant to give consolation, to give comfort, though her words probably gave neither. I am sure Emily can catalogue the idiotic, well-meaning things people have said to her and to Rick and to Ronan (she started to do so in "Against Angels": http://www.thenervousbreakdown.com/em...), and some of my own words are likely on that list. Most people don't know what to say to someone facing what Emily and Rick are facing, what Ronan is facing, what the girl's mother was facing in the basement of that church, so they reach for the familiar, for what they've heard before. My English teacher in high school called this phatic communion, words spoken to fill empty spaces, words spoken out of habit, routine, words that mean nothing, though they point to a deep desire to connect.

 

The trouble is, words like God must have needed another little angel in heaven do mean something. They paint a picture of a world controlled by a God who kills kids so he can have company in heaven. And what kind of God is that? What kind of world is that?  What kind of death is that?

Words have real effects, that's what I learned in divinity school when I studied to be a priest. Words matter. Words about God matter. You speak them and they become something else, become trees, become mines, become oil slicks, become love, become war, become violence, become peace.

If you were to look underneath the god-needed-another-angel words, lift them up like you would a rock in the forest or a welcome mat on the front stoop with the hope you might find the key to a house you've been locked out of, you would see fear huddled there, hiding. A fear of what can't be fixed. The woman who said those words in that church basement—and I am conjecturing here, imagining, putting thoughts in her mind and in her heart—would rather believe God gave a little girl a brain tumor and then let her die because he needed more angels in heaven than sit with the fact that sometimes little girls die and there's no reason for it and there's nothing anyone can do about it. She'd rather the world be held by a monster than not be held by anyone at all.

Some deaths can be avoided. The deaths of children who don't have enough to eat (thousands every day), of people who don't have access to clean water or antibiotics and antiviral drugs, of people whose houses bombs land on. There's a way to fix deaths like these, a way to stop them. But sometimes there's nothing to do, nothing to fix or to solve, which is exactly what Emily writes again and again when she writes about Ronan, reminding us, her readers, there is no way out of this, and she knows it, so could we please have the courtesy not to bullshit her.

Emily and I went to graduate school with the poet Katie Ford, and in our thesis seminar, Katie wrote a book of poems (now published, Deposition), a dark and beautiful book about the violence humans do to one another in the name of belief and salvation. One of the students in our class raised his hand when Katie presented her work. "I think you need some happy poems in here," he said. "Maybe you should end with a poem about the resurrection."

"For some things there is no resurrection," Katie said.

People whose parents die are called orphans. People whose spouses die are called widows and widowers. But there is no name for someone whose child dies. And there isn't any good theology for it either.

But there should be. In most versions of Christianity, the central story is a story about a son who dies. Mary's son. Joseph's son. God's son. But the death part of the story is often glossed over or turned into something else. Jesus rose from the dead. God meant for Jesus to die. Jesus was sacrificed. His violent death saved us. But when these explanations fall away, what you have left is a parent whose son dies a terrible death.

I need a new theology of death. One without angels and without heaven and without words that try to make what can't be fixed seem better or less terrible or like a learning experience for everyone else, as if the purpose of other people's suffering is to remember what really matters. I need a theology that reminds me the only thing I can do is be present. Emily just might be the one to write it. She wrote this to me the other day, on Facebook of all places: "There is so much mystery in what's happening to our family, but when I look at Ronan, I see the only God I'm interested in talking to."

And I know she will not look away.

I went on a trail run yesterday. It had rained, but the sun was out, so I watched for banana slugs crossing, taking care not to trample them. I was running up a hill when I heard a beautiful sound. I thought it was a bird. I am new to Portland and have not yet learned the sounds birds make here. I stopped to listen when around the bend came two women. They were holding on to each other, or maybe one was leading the other, though it was impossible to tell who was guiding and who was being guided. One of the women had long hair, and the other woman's hair was short, and she was in some way mentally impaired—aren't we all?—and her head was moving side to side, and she had difficulty controlling the movements of her limbs. The women were whistling. The long-haired woman whistled, the short-haired woman answered, clear, strong.

Maybe that's what a better theology of death looks like, sounds like: two women walking on a dirt path through trees whistling like birds. Maybe Emily is the guide. Or maybe it's Rick or maybe it's Ronan or maybe it's one of us or maybe we change places all the time.

This Month's Nervous Breakdown

Today the monthly essay on The Nervous Breakdown  http://www.thenervousbreakdown.com/em...

A Grief Re-Observed: C.S. Lewis and the Afterlife

A Grief Re-Observed: C.S. Lewis and the Afterlife

Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape…Sometimes the surprise is the opposite one you are presented with, exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn't a circular trench. But it isn't. There are partial recurrences, but the sequence doesn't repeat. -C. S. Lewis, A Grief Observed

C.S. Lewis knows how to do grief: how to write it, how to think about it, and finally, how to live through it and then finally dwell in it. A Grief Observed is helping me navigate the daily reality of living with Ronan's terminal diagnosis. Originally published under a different name, this sleek little missile of a book is the chronicle of the minutes and seconds and hours and weeks and months of grief after the death of Lewis's beloved wife, a woman he fell in love with late in his life and much to his brooding but delighted surprise. He married her while she was ill, fully aware that their time together was limited. The book is angry, profound, wrenching, and above all, full of questions that Lewis attempts to answer using both faith and intelligence together, a pairing that in our current political climate feels like a giant surprise, a colorful weasel popping out of an ordinary cardboard box. What's a devout Christian guy (indeed, an apologist) to do with a big fat heap of despair when the God he believes in has arranged for a fabulous, post-resurrection afterlife that doesn't accommodate despair and actually might equate it with sin? He digs and digs with the sharp instrument of his mind. He's a virtual cutter, and he will not let the difficult topics lie. He goes right for them.

Grief is a sickness, Lewis reasons, and a deadly one without a cure — "Meanwhile, where is God? This is one of the most disquieting symptoms" – and he searches his formidable, very wise and devout brain for answers or cures that might include the notion of a good (or bad) God, the time/space continuum, and logic. He comes up short in every respect. He is dizzy, whirling, lost and sad, but he does not give up. He thinks and thinks and thinks. Each day he goes back, each day he wrangles: why, where, how, when, what? Do people (their bodies, their minds, their sum totals, whatever we might mean by that) become "sheer intellects" in our minds and memories, able to peer through our enchantments and reveal our self-delusions? Do dead spirits become ghosts housed in memory or are they actually physical ghosts, and if so, are they chain-rattling and pesky, floating about in the dead of night, or are they calm and contented fairies twittering about? If one begs God for mercy, does that mean that God is capable of withholding it, and what does that say about the quality or effectiveness of God's mercy in the first place? Lewis lets it all fall into his head and then out again. He is a shackled journalist seeking to write a factual article without the opportunity to gather any evidence or empirical proof or even move off the floor of some smelly old prison in some far away place. All he can do is scratch on the walls and wonder and writhe around on the bare floor. The only place to search, the only landscape he can visit, is his heart. Turns out that's a pretty big and interesting place. In our current national climate, in this country that prides itself on the division of church and state (?), where religious beliefs are tossed around like candy from parade floats to potential voters in silly debates that claim to be about "moral issues" but are really about nothing at all, where people are asked to apologize for who and what they are, a humiliating and deeply un-Christian demand, encountering the theological brain of C.S. Lewis is like quenching a giant thirst you didn't know you had until you gulped down a liter of water in one go and felt instantly hydrated.

Because A Grief Observed avoids platitudes and easy answers, but not the metaphysical, not the intellectual or spiritual aspects of pain, it is actually one of the few books that has helped me navigate this new and often lightless terrain of grief. I like to think of it as "The A.G.O." This gives it the wise and epic heft I believe it deserves. The book engages the questions of what happens to us after we die (does it hurt, and if it did, what would that mean?) from inside the white-hot energy of the actual experience. The book is an existential, stricken, super brainy howl into the void. Thank you, Clive Staples aka "Jack" Lewis. If you were alive, I bet you're one of the only people who would fully understand how truly grateful I am for what you've written. I wish you could know how eagerly I pick up your book when I'm about to lose my mind and find yours there, waiting, like a comfortable rock to sit on at the top of a long trek straight up the side of a mountain. I like the view from your brain.

I've always loved C.S. Lewis. The Lion, the Witch, and the Wardrobe is essentially a dramatization of one possible version of the afterlife, although this alternative, imagined, "secondary" world is not full of swooping, attractive angels and a white-bearded, lightly muscled God bestowing grace on saved souls, not a place of easy, painless resurrections and bells ringing out from flower-covered hilltops, but a tremendous and often terrifying place where moral decisions have consequences, where people and animals sacrifice and die and then live again, but not without being altered or changed. Death and life exist side by side. You might become a king or a queen but not without a price. Unlike common (read: medieval) depictions of the afterlife, the one on the other side of Lewis's wardrobe is fantastical but doesn't abandon all logic and sense. Lewis, a devout Christian of the pre-Bachmann-Perry-Palin kind, makes a good argument for the role and power of Christian moral thought in the great task we all have of making our way through life without becoming hateful and horrible. In short, C.S. Lewis is a Christian, but he is not an idiot, a zealot, an anti-Semite, a homophobe, a racist, or a xenophobe. This measured temperance of thought (although his intelligence is blade-sharp) singles him out among those who claim the Christian mantle and hang all kinds of ridiculousness (bigotry, racism, sexism, classism, able-ism, homophobia) beneath it.

Why is his method of thought so interesting, so new? In the middle of his grief experience, Lewis acknowledges the limits of empathy. We are constantly told (and sometimes taught, if this is possible) to be empathetic, to develop empathy, to use it when thinking about or talking about another person's shitty situation. It's like a marketable skill, something to deploy, detonate, use. We are asked to extend our empathy (or, more accurately, our sympathy, which is more of a distancing maneuver), almost every day. Tsunamis. Terrorist attacks. Bombs. Famines. Hurricanes. Child abuse. Rape. War war war. We get facts and are asked to imagine and we say isn't that terrible and we believe that we empathize. I feel you, we say, and the world is wicked and I'm so sorry. Nice theory, Lewis concludes; too bad the whole notion of empathy is completely bunk. "You can't really share someone else's weakness, or fear or pain." You can't really test the strength of a rope until you're asked to hang from it over a cliff. There have to be stakes. After his wife dies, Lewis understands that nobody – ever — can feel another person's agony. Not even God. It is this last bit that makes him truly weary, as prayer (his old standby) has become useless to him. If God has limits, then what?

Without prayer to sustain him, Lewis is stranded in (not by) grief, and what's worse, it's a landscape of his own making. It's a place, sure, but nobody can come and visit; nobody has the password, nobody can really, truly walk through that wardrobe door and see what you're doing on the other side of it, or what you've been imagining or experiencing. Grief as a place is textured and variable in terms of weather, chance inhabitants, and geographical location. It might be lunar, alpine, sub-tropical. It might have birds or beetles or very large and hungry bears roaming about, hunting. It might be a house, an apartment, a mansion, a shack. Each day requires a re-orientation, a brutal schooling in the vicissitudes of grief:

Man dwells when he can orientate himself within and identify himself with an environment, or, in short, when he experiences the environment as meaningful. Dwelling therefore implies something more than "shelter." It implies that the spaces where life occurs are places, in the true sense of the word. A place is a space which has a distinct character. Since ancient times the genius loci, or "spirit of place," has been recognized as the concrete reality man has to face and come to terms with in his daily life.-Christian Norberg-Schulz, Genius Loci: Towards a Phenomenology of Architecture

Exactly. You inhabit grief and grief inhabits you, which means you have to learn how to dwell within it. The problem with this is that each time you open a door or look behind a pretty-looking tree there's something terrible flowering behind it. Like that world beyond the wardrobe door, which includes both the place you're going as well as the place you left behind, there is a cost for opening, for dwelling, and Lewis pays it in kind, noting that Prometheus always had a new, freshly-grown liver for that mean bird to chew on. Grief: relentless and self-generating. You think you've hit a nice flat road and it might be time to exercise cruise control and then bam! It's forty below zero and your windshields are iced over and your wipers are doing fuck all to help you.

A few days ago, Ronan stood up. With assistance of course, the physical therapist wrapping her arms around his trunk and straightening his legs, holding the back of his neck, chanting a tune I can sing but have no idea what it means or where it's from. His fine blond hair seemed to fizz around his head; a few curls traced the edges of his ears. He cooed and smiled. He was tall and gorgeous and his feet were flat on the floor. He's big – no longer a baby but a little boy, but also a dying boy, a helpless boy, and as I watched his face bloom I realized that there's some part of him that wants to walk and never will. He wants something he can't have, which is a kind of suffering. Sitting on the floor before him, I had the urge to reach out my arms as if he might walk into them. For a moment I actually imagined that he could do this; that he would run to me, that he would live. Who is to say that I didn't drop into some version of the afterlife, some alternative, other-side-of-the-wardrobe universe where Ronan grows up, runs track, gets acne, locks himself in a man cave at thirteen and only speaks to me in grunts? After that flash of forgetfulness I felt as though I had stepped into a pit. I held my breath and dropped. I fell and fell and fell. This crossed my mind – it does feel like a curse. To have had and to love and to hold this beautiful boy who cannot live; to see his body grow and change and know that the growth is killing him, killing part of me. Screw what the wardrobe might hold. I just want to sit in one and never come out. I want to scribble bad art on the wooden walls and screech at anyone who tries to offer comfort.

This feeling of being cursed didn't come out of nowhere. It came from people (I think) trying to be empathetic. "You must be cursed!" a woman said to me last week in Santa Fe. Another Good Samaritan announced in the coffee shop line that God had chosen me for my little bit of suffering. I half-expected someone to come running out and crying, "She's a witch! Burn her!" I didn't feel so much cursed as trapped, which might be the same thing. People come at me with ready-made boxes, ready to set me inside them; they hold out cages, inviting me to crawl in. They show up with brooms, ready to sweep my life with Ronan – mine and Rick's – under the rug of tragedy, lost causes, poor, pathetic people. But here's what Lewis taught me: these well-wishers, if indeed they are that, aren't allowed in my world of grief. They cannot penetrate, know or understand its brutal truth, its mix of light and dark, its weird and terrifying beauty, the sheer presence of a completely encompassing, mind-shattering, rib-cracking love. They are not welcome. This world – this love – is mine, all mine. No tickets will be sold to this show. Access denied. Their empathy has no currency here.

Reading C.S. Lewis empowered me against these curse-makers, these myth-mongers, these impolite people. My story will not be tidied, and my grief will not be boxed, and I am not inviting them to any picnics I might have in Grief Land, and believe me, there are glittering, beautiful, delicious gourmet picnics. After the cursing incident, I came up with a new line. When people ask me what's wrong with Ronan, I say, "He's dying, and, by the way, so are you!" I can pop this off in the chirpiest, friendliest tone and then limp off down the vitamin aisle. Why? Because it's true. "You're getting snarky," people warn. Maybe. Or maybe people are just acting stupidly, maybe they just need to wake up. If mortality is a curse (which, if living forever is the goal, it is indeed), then we are all cursed. Me no more so than you.

As Lewis navigates his only feelings of being cursed (his beloved gone at 45), he realizes that grief is a mobile landscape and it's not wholly bad or to be avoided. Yes, you never know when it might show up at your door and start planting some rotting trees or tasteless garden gnomes. You also don't know when you'll notice a perfect, blooming rose, or experience a moment of utter, uncomplicated happiness that no drug could provide. But when I am being cursed by (supposedly) well-meaning strangers, I do feel deeply afraid. I feel the yawn of some terrible loss that is to come, that is already coming, that has already arrived, a gravitational tug. I stand in front of the cheap wine at Trader Joe's and cry like an animal and I hate those people as much as I fear them. Lewis: "No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing." Yes, I thought, yes. Being in the world while grieving, while holding the "doomed" child in front of you, means that you often move through the world tired, or uncaring, and like you are slightly drunk. Prayer may fail Lewis — "But when you go to Him when your need is desperate, when all other help is in vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside" – but thinking and imagining do not. He gets up and gets right back into his landscape of grief. He starts planting, weeding, tearing up, building, burning everything to the ground and starting over.

And in the middle of all this spiritual and intellectual activity, Lewis gets technical; he searches, flounders. What happens to the physical body, he muses, and/or to the soul, to the person, this "cloud of atoms" after death? "That is, in what place is she at the present time?" Part of what infuriates Lewis about the "she's in heaven" angle is that it presumes that his beloved wife is either static, and therefore might as well be dead; or alive, and then how does that work? Does she age in the way we understand it in our own universe and in our own bodies? Or is there reverse aging? Do we morph into various creatures at various angelic whims? "Jung said that there is no coming to life without pain, and that may well be true of what happens to us after death. The important thing is that we do not know. It is not in the realm of proof. It is in the realm of love." Is there some death initiation? Some physical or moral hoops? How can we ask a God to be both mysterious and all-powerful and also understandable? "All nonsense questions are unanswerable. How many hours are there in a mile? Is yellow square or round?" Lewis is an algebra teacher trying to explain the actual physical size of an imagined number – is it the size of a basket, a kitten, an ocean, the microscopic head of a pin?

Kind people have said to me, 'She is with God.' In one sense that is most certain. She is, like God, incomprehensible and unimaginable…Unless, of course, you believe all that stuff about family reunions 'on the further shore, pictured in entirely earthly terms. But that is all unscriptural, all out of bad hymns and lithographs. There's not a word of it in the Bible. And it rings false. We know it couldn't be like that. Reality never repeats. The exact same thing is never taken away and given back.

No alternative realities, then. No Ronan growing up in some other dimension, on some other planet or in some other place. But then why the dreams of him walking into my room, asking for a story, a glass of water, a hug? Why these images of him at six, ten, sixty, thirty-two? Why are the images so vivid? Has part of him already crossed over and these dreams are giving me a taste of a secondary universe not unlike the one Lewis creates behind the wardrobe door? And how can I square a non-belief in God's existence with this desire to blame God for not being good, for allowing evil, and for demanding that some part of my son goes on after his physical death? Lewis: "What reason have we, except our own desperate wishes, to believe that God is, by any standard we can conceive, 'good'? Doesn't all the prima facie evidence suggest exactly the opposite. What have we to set against it?" Exactly. But then who or what creates the afterlife, the secondary world, the other place? He revises this logic in the next chapter, describing it as "a yell" instead of a thought, and in the end he decides that the depiction of God as Sadist is too anthropomorphic to be an adequate description of God's alleged powers, even more inaccurate and offensive than an old, bushy-bearded man looking out for humankind's best interests.

Of course, like Lewis, I will never not be without Ronan, from the moment after his last moment and until the final moment of my own life. His absence, like Lewis's wife was for him, will be "like the sky, spread over everything." The whole rest of life is going to be a great big without. Life will always be amiss in some way. There are a lot of mountains in the land of grief, a lot of gut-busting treks, a lot of work to do: tunnels and high rises to dig and build; tourist attractions to promote. And that needs to be done on a daily basis, mind you, because the beloved dies again and again. Rebuilding is always required. It's easy to get lost in the work of creating a whole new country of grief, and Lewis worries about the days after the "mad midnight moments." I, too, dread the moment after the final moment, that "landfall" as Lewis would describe it (different from an "arrival," which implies safety), that I wish I had never become a parent, I wish the journey with Ronan would end now, this minute, I wish it would never end and that time would stop – I wish all of this in the same moment, and then I wish I didn't wish it, and then I wish I could stop wishing or thinking. No wonder grieving people are so exhausted all the time; no wonder we retreat to trash television and episodes of Law and Order or hypomanic episodes or liters of vodka. Especially in this culture where we're taught that all of our value rests, somehow, in the future and what we do or accomplish there, then what do we do when what's coming for us is death?

So if we don't really care – can't really care – about the sorrows of the world until they are our own, meaning that our faith and sympathy are revealed for what they truly are – acts of imagination – then what? Imagination is okay, Lewis decides, it is all we have, it is enough. When the grief lifts, he remembers his wife best; when he is not thrashing and screaming, he can feel her, he can rest, he's at peace. The intensity of our longing to understand, he believes, is what makes that understanding so uniquely impossible.

Almost every month I drive Ronan to the valley of Chimayo, to the Chapel of Santo Nino de Tocha, the baby saint who runs around doing miracles during the night, which is why the back room of his colorful chapel filled with birds and monkeys and trees is full of tiny shoes. He wears himself out doing all those good deeds. I'm worn out, too, tired of traveling up and down the spiral of grief, in and out of the valley of grief, to Chimayo and back, through the dusty rooms, sweltering in summer and icy in winter, feeding Ronan in the brick of white light that falls through the sunroof in the the back chapel, scanning the different shoes, noticing new ones, new photographs, different rosaries draped over the statue of the walking baby saint with his tipped hat and blond hair and placid face. It is here when I understand best that love is loss, and that loss is not made of a series of curses thrown our way. Each part of our survival is dependent on a mass of small coincidences, the thinnest web that spreads out behind us and beneath us; rather than catch us, it pushes us our delicate bodies forward into the easily wrecked realities we inhabit. A whole wall of photos of teenage boys who have been killed in Iraq. Crutches covered in dust and hanging from the wall. One boy's college I.D. card. Prayers written on casts that have been cut away from the body. A lot of prayers from mothers.

If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing, that she may still hope to 'glorify God and enjoy him forever.' A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see his grandchild.

I don't believe in the Christian God, but in Chimayo's sanctuario I always duck into the room with the healing dirt. I grab a handful of it and sprinkle it through my son's hair; sometimes I eat a little bit of it or toss some down my shirt. I buy the statue of a saint or a candle or a  shrine box or a triptych or a Milagros from Nicholas at the Vigil Store. "This is for someone looking for love," I hear him explaining. He holds up a sterling silver leg meant to be worn close to the body, meant to induce some miracle, some healing. "This one helps with wounded limbs." Tiny images of the body meant to heal the biggest wounds.

My experience in Chimayo never repeats, and it's the place where I go to visit the latest shape of my grief, and I always find something to add to a shelf, to a wall. And I leave things as well, little pieces of my gradual loss: a pair of Ronan's outgrown shoes, a votive candle, my own slobbering tears. The hills always cast a new light; the tamales are always delicious. A lot of grieving and hurt people come to Chimayo to unload pieces of their grief, or hope; they come to stitch together personal landscapes of loss, so in fact the town and the dirt and the churches and chapels and spaces are all a part of the story of loving, the story of living.

And although I don't believe in the afterlife, I can imagine myself in some far away place, some made-up reality, where the boy my boy might have been does something as simple as walk across the floor and into my arms. My own vision of heaven. I see this sequence all the time, repeated, replayed, it sits on me, a great weight, but it is never quite the same. I take the same path to Chimayo each time I visit, but the sequence never repeats. The shadows change and shift. Everything is different, everything is the same, the sequence rolls out identically but it is always new.

When I arrived in Spain this summer, I stepped off the plane in Almeria and thought this looks just like Albuquerque. A taxi drove me to an empty farmhouse at the end of a red dirt road. Everyone had gone to Granada for the weekend. I was alone, and on the table before me was a four-course dinner and a newly-pressed bottle of wine. Flies hovered over the food. An unseen dog barked on and on. I've never been so lonely, so adrift and yet so excited, so charged, in all my life. Goats bleating wearily from hillsides; wind running through all the empty rooms; ancient olive presses with levers like giant arms; a cross meant to replicate the feeling of Gethsemane looming in the moonlight on a hill. For some reason I think of that first night alone in Spain as I prepare Ronan for bed each night, rubbing de-stressing ointment on his fat wrists and just under his nose; carefully strapping him into the plastic booties covered with a blue and green fish pattern that keep his feet flat at night to reduce muscle spasms; kissing his face and stretching his sweet limbs and sometimes getting a toothy grin for my efforts. A lonely time, empty, but also full of something else. Potential? No. Stillness? Sure, although it's more than that. It's map-making time. The time at the end of the day when the brain rearranges what has happened in order to remember it when the beloved has gone. And it is love and it is sorrow and it is heaven and it is hell.

Lewis says, at the end of the A.G.O." "I thought I could describe a state; make a map of sorrow. Sorrow, however, turns out to be not a state but a process." It needs a history, it needs breathing room, it wants to dwell. He also believes that if heaven is real, "the notions will all be knocked from under or feet. We shall see that there never was any problem." Maybe. I hope so. I want to believe as much as I know that I never will.

I do know that some morning, years from now, I will have this identical dream, a dream that always repeats (and always in the morning) but feels slightly different each time: Ronan walking into the bedroom in the morning, two years old and then four, asking for a glass of water, or a snuggle, or saying "mama." And that grief – and that happiness, too – will be just there, just within my half-asleep grasp, trembling on some paralytic edge between imagination and truth. Wherever I am when I dream this dream, I will be in the same country I thought I'd left behind years ago. I'll be on that bending, twisting road to Chimayo with my talismans and votive offering of baby shoes and tiny shrines and trinkets and magical objects, wishing without believing in the consequences of that wish, and I will think I'll have left it behind, this part of my life, this death, this loss, but I know that the country I'm living in now will be right there, so close that my lightest breath could ripple the grass, crack the sky, split the heart of this imagined but very real and painful and often beautiful world.

The Etymology of Grief

Grief is:

An empty pillow book

Waiting for someone to change the subject

Ink spilled on white pants or a white sheet: ink from a pen, ink from a squid, blue-black and slimy

Sighing a lot

Feeling naked in private and feeling private in public.

The soundtrack of the life of a baby: Burl Ives, Sinead O'Connor, Natalie Merchant, They Might be Giants, Ella Fitzgerald, The Story, Bruce Springsteen

Writing a fantasy novel (already a bestseller in online pre-orders)

Running amok

Using its knowledge of symbiosis against you

Bulimic, anorexic, gluttonous, abstemious and possessed of other varying appetites

Flammable

Responding to a simple question with a trilogy

The sea, wherever it is found

A blister slowly shaping itself to the bottom of a foot

Happy in an expatriate bar that is empty of locals

Turbulence in an airplane as soon as you are handed a cup of hot coffee or tomato juice or, if flying internationally in coach/tourist class, a plastic cup full of red wine

A hand on an ass when it is not welcome there

A long nail in need of clipping

Airport food

A sudden nosebleed

Slutty

Faithful to the last

History misspelled by an accidental keystroke: shitory

An eight-hour time change every five minutes

Farting in public while standing naked on a table while people discuss you

Impulsive and cantankerous: a terrible travel companion

Time. All clocks. Every watch, even Swiss-made

A stuffed panda with a single ear that has been forgotten on a bus

A stereotypical image of a dictator: broad shoulders tapering to a narrow waist, a jagged ponytail with furiously splitting ends, busy eyes, bushy eyebrows

Walking around with booze on its breath

A dog that barks all night until it is kicked

Green and slippery, like the truth, like a lie

A bird halfway between the lowly pigeon and the self-righteous hawk, circling

A story by Kafka

Dreaming of its future taxi-driver, asleep in his bed. Does he have children? A boyfriend and/or a wife?

Endlessly resourceful

The stupidity of being told how to use a seat back flotation device and a seatbelt in the event of a real aerial catastrophe

A half-read book

Worrying about a beloved friend staying in Paris in a rented flat. Is the roof secure? Is there rain in the forecast? Did she find milk at the store? What is she eating? Are strangers smiling at her on the street, and would that be a good or a bad thing?

An endless conversation with past and future selves in shouts and whispers

An unwashed nightgown on a dirty hook

Sudden chatter of sunlight, everywhere

A skinny rat swimming past a subway car during a rainstorm, the car stalled out and bobbing, swaying

Trash from the upstairs neighbors flying past your window

Not telling you anything

Chasing a coin across the floor before it drops out of reach under a floorboard

Amateur at everything

An unfinished letter

A stinky air-freshener called "Summer Daffodil" or "Sporty Grape"

A vacation in the middle of the ocean, crappy raft optional

The phrase: "getting accustomed." And this one: "being brave"

A shoddy translation of something else that it is itself afraid of and cannot name

A stack of postcards from places you've never been tied together with a rubber band, discovered in the bedside drawer of your favorite friend

Rebound

There is something maddeningly attractive about the untranslatable, about a word that goes silent in transit.

-Anne Carson, from "Variations on the Right to Remain Silent"

Today Ronan is wearing his Thera-Tog, the "super suit" that is designed to help him maintain better trunk control. It noticeably improves his posture, but as is the case with all the therapy we do with and for him, it's not about improving anything. There are no expectations attached to what we do. We've had to tilt his high chair back a bit, the bouncer is now padded on all sides and he needs shelving paper underneath his feet to keep them from splaying out. In general, he seems to be much happier on his back, with stuffed animals propped beneath his elbows, or his legs elevated and stretched out over the boppy pillow.

"It's good for him to be able to hit things or change things with his body in space," the physical therapist tells me. She shows me how to press his butt into my belly, wrap one arm beneath his knees and the other across his chest to help him stand. I can tell Ronan likes this; he squeals and smiles. This is like a first step, I think, and although there won't be a second solo step, there will be nothing apart from this assisted standing, we clap and cheer anyway. I wonder how it feels to him, these movements and this praise, inside his very uncomplicated brain that has made everything about his body so complicated, the quality and nature of his experience of the world impossible to translate. Our brains simply cannot manage the great simplicity of his outlook. I wonder if this is why people have such a strong reaction to Ronan, why they unaccountably and often to their great surprise, fall in love with him so quickly, so fully. Is it his great silence, his great calm (even when he's snickety), his great peace? I'd give anything for him to be running around right now, screaming and wailing and testing limits and our patience, trying to stick a fork in a socket or something, but that he's perfectly content is inarguable. The illogic of this makes my own brain spin on its normally developed stem.

"Do you think he senses this new orientation?" I ask, feeling his weight against me. "Oh, yes," she says. "You can see it in his face." She reminds me to gently shift him over my forearms in order to release him to the floor. "We don't stand straight up out of a chair," she says, sitting on the couch and then leaning over before standing up, demonstrating the way most of us pitch slightly forward without thinking. Our bodies know what to do. They just go and go in space, sitting and standing and reaching and pushing and pulling, with the brain and the cortexes and lobes and whatever else all following suit. Ronan's does not. We have to coach him. We do for him things that his brain cannot master on his behalf, although that's not exactly right, either.

When lay him on a blanket and let him rest in a side-lying position and then roll him back and forth from side to side, as if he's lying in a hammock, singing row row row your boat, gently down the stream, merrily merrily merrily merrily, life is but a dream, he moves his foot slightly forward, all on his own, all systems firing together for that one second. "You did that!" the physical therapist coos, and Ronan smiles at her, showing all eight teeth. When I lie nose to nose with him, he reaches out for my face, my lips, the edges of my hair. "He still wants to be able to do things, make changes with his body and see the reactions he makes, the ripples," she says. She massages him with a vibrating personal massager; a search for a similar device on the internet turns up a list of less savory alternatives, even when we type in "sensory integration disorder therapy tools," and has the therapist and I giggling like junior high school girls.

"The vibrations speak to his bones," she tells me, pressing the vibrating tool flat to his heels. "Uh-huh," I say, thinking this sounds a bit new-agey, but there's no doubt that Ronan is enjoying himself. Ronan was exhausted after all this movement, minimal as it might seem to anyone viewing this scene from the outside. But moving a foot on his own, just a centimeter, matters to him, batting at the chimes of his dragon toy matters to him, even if it's just a fingertip grazing the edge of a dragon-y foot, and so all of these movements matter to me, all of his likes and dislikes, all of his abilities and limitations. When our friend Carole was here this weekend to take us to the opera, she realized that Ronan liked it when she ran a finger from his forehead (complete with Harry Potter-esque magical lightning mark) down his nose as she does with her cats. "You're a kitty," I tell him, and he makes his dragon/purring noise. I want to record that noise in order to remember it when Ronan is gone, but there's no way I will. I'd never be able to listen to it or else I'd never be able to stop. Next we'll try rocking him in the hammock. Next week the therapist will bring distilled essential oils to stimulate smell, one of the last senses to disappear. I've started waving lavender and lemon under his nose and sometimes adding both to his water. Yesterday I mashed fresh mint into his peas. There might not be a next year, but there's a next day, a next week. For now it needs to be enough.

After my recent allergy attack, the doctors warned me about "rebounding." Careful for a rebound! they intoned as they scribbled out a prescription. I took steroids for a week and Benadryl at night, maintaining a general spirit of watchfulness. In most cases, the source of an allergic reaction is never fully determined, so I'm back to dragging around an Epi-Pen wherever I go. Oh, the body and all its mysteries, all its myriad ways of going wrong, of failing, which of course in the end (as in the literal end), it is designed to do. Who and what are we? I often think when I sit next to Ronan, or watch him happily staring at me, at his hand, at a toy I present for his in-the-moment amusement. What are our lives about, or for?

When I was in the ER in Colorado Spring after the allergy attack, Ronan sitting on the bed, the nurse prepping my veins for the IV, I thought what if Ronan outlives me? Doubtful that this will happen, of course, but then, anything is possible. None of us knows if there's something in us that will kill us today or tomorrow or next year, or if next week's trip to the grocery store might be the last one we take. Rebounds are around every corner, for all of us, even if we think we're immune, even if we call ourselves lucky, even if we think we're smart enough to avoid disaster, as if intelligence helps in any way at all.

Tell me what I am, and who you were, Griselda's piece-of-crap husband asks her in the opera named for this woman who was outcast, tested, abused, and above all, loyal. Rebound after terrible rebound — that was her fate, her life, her task. Good old opera. Two nights in a row, and the histrionics and wild arias demanding that the shadows recede and that the suffering stop ring more true than I'd like them to, even if the set of Griselda looked like a mini-golf course with Goya paintings leering in the background. I remembered singing those arias in the soundproof rooms at St. Olaf, when I desperately wanted to be a diva. I dreamed of a flowing gown and a tiara and a thick waist. I imagined writhing on the floor and pushing my hands to the sky while maintaining clear pitch and a stunning vibrato. Alas, this soprano became an alto during the first year of freshman year, so those hopes were dashed. But I can still appreciate a good Vivaldi flourish though, and there were times in the opera last night where I could practically see the notes floating out of the back of the singers' heads.

Who do you say that I am? This is a question that is asked often in operatic arias, interactions and plots. It's also asked in The Odyssey, which Rick and I listened to last week for about one hour on the drive from Wyoming back to Santa Fe before we decided to switch to another audio book. It's a question that Jesus asks in the Bible, it's a question we'd been asking ourselves a lot on our brief weekend vacation in Estes Park.

In the crucible of grief (and of life, too, although grief is basically life intensified), who you are changes from moment to moment. Yes, as Gail Caldwell says in her book about loss of her beloved friend, the writer Caroline Knapp, "grief is who you are when you're alone," but it's also who you are when you're together. Me and Rick. (Parents who will outlive their child). Or who you aren't. (Parents of a healthy child) Or who you might be in the future. (Parents again? Or parents of a dead child?)

Who are we? Ronan stayed with his grandparents in weirdly hot and humid Cheyenne and Rick and I spent two nights in Estes Park at Workshire Lodge, a collection of modest cabins near a stream where we used to stay when I was a child, less than a mile from the entrance to Rocky Mountain National Park. It's hard for Rick and me to be away from Ronan, sometimes it's hard to be alone together. What can we talk about except what's coming? And we don't even know what's coming, but we do know there will be that final moment, and then the next moment – the one I dread most – after that final one, and then all the moments after that, stretching on to the end of our lives. I don't tell Rick this; instead I ask if he wants to hike Chasm Lake, Sky Pond, or Dream Lake. None of these sound appealing; even their names are too full of story, too overwhelmed with meaning, too full, overflowing, too ripe for translation and interpretation. We decide on Twin Sisters – a trail that climbs straight up through several thousand feet to windswept and panoramic views of the mountains. We watch a family of bighorn sheep scramble up on one of the rocky outcroppings. We eat our sandwiches in silence. There are 350 trails in Estes Park, and for a moment as we're heading out I imagine writing a book called A Moveable Grief. I'll move to Estes in a camper van and hike all of those trails after Ronan is dead, day after day, my own little depressing stunt memoir. I thankfully chuck that idea on the way down, and almost laugh out loud thinking about it.

Ronan's life, and our experience of it, often feels untranslatable, and for that reason, the loss is that much more acute. We ache all the more. Sadness like a rock that drops and drops and drops and never reaches the bottom of the well or touches the cold stone sides.

Ronan, who are you?

In Homer's epic we have cloud-gathering Zeus; earth-shaking Poseidon; clear-eyed Athena – everyone gets an adjective. I try to think of one for Ronan. Chubby butt Ronan; peaceful-heart Ronan; mind-boggling-zen-baby Ronan. Nothing fits. They all sound like riddles or jokes. He's just Ronan. Ronan Louis. Baby. Beloved. Son. Ours. And something else, too, that has and needs no name. He embodies some ineffable quality that is literally lost in translation, off scene, on the sidelines, but planted in our hearts, mysterious and tremendous and true.

Where to Begin

Today there is grief in the world, as there always is, but this time it makes the news, one terrible story after another. A shooting and a bomb in Norway. Another artist lost to addiction. A former professional basketball player dropping dead of a heart attack while in the early stages of pregnancy. Families walking for miles in Somalia, literally starving, with aid workers risking their lives to bring life-saving food. And for people in my hometown, a family killed in a flash flood. A husband and a father losing his wife and three daughters in a matter of minutes. I read these stories and scan the obits of the people who don't merit a full-length news story; we ingest images and columns of information in the morning news as we chew and swallow our cereal or toast, drink our coffee and our orange juice, and then we carry on with our days. What else are we to do?

The story of the man from Laramie who lost his family went viral among my Facebook friends. I felt speechless with rage, numb and floating. I feel like this often as I care for Ronan, as the clock on his short life runs down, as I watch him change, lose head control, struggle a bit more to swallow his food ("There are five different muscles needed to swallow," the oral therapist reminds us as she watches Ronan eat his prunes). When one reads about such tragedies our responses are always inadequate. How to connect with a photograph of bereaved people, their faces twisted with despair? How to understand what it's like for a man to wake up in the hospital and be told that he is the only person in his family who survived? We cannot know one another's grief, we can only try to witness it when the griever allows, but I thought about that man and his family all day as Ronan and I whisked across a delightfully rainy Northern New Mexico landscape, Barack Obama's sonorous voice reading The Audacity of Hope as we twisted along the mountain path between Raton and Trinidad. Obama talks about the chronic restlessness endemic to our culture, this idea that we are always seeking, striving, going forward. I think there's this impulse, but I also think people want to stop. They want answers. I certainly do.

I don't think I will ever stop thinking about that man from my hometown, who lived with his family in the town I end up in that night – Colorado Springs. Scanning the comments on Facebook before I go to sleep that night at my friend Carole's, I find this line: Talk about doomed!

I shut the computer and want to scream. People are so selfish in their responses to grief, so short-sighted, so unhelpful, so mind-numbingly ignorant. That man is not doomed. He is grieving a horrific, incalculable loss that when he lives through it, will have changed him. Before him is a road that will test him – already has – to his limits. But you know what else? Someday, certainly not any time soon, but someday, that man will laugh again. It will not be the kind of laugh it was before – it will be of a different depth and quality, it will have a different pitch and a more complicated texture. I cannot say what that man is feeling, but I can bet that it will be a long time before he owns his own mind again. But I understand at least part of his mourning keen. I imagine it as if I could hear his voice and I want to keen with him. I want to inflict cruelty on this cruel world. And I want his family back for him. I want people to stop blaming Amy Winehouse for her addiction, to stop saying things like "she had so much potential" as if this were her only real value to the world. I wonder if blond, blue-eyed men will now be targeted for special screenings in airports, and I think about St. Olaf College, where I was a student, where everyone, it seemed, had a relative in Norway, or had gone to Norway, or had blond hair and blue eyes. We are humans, mortals, we are all doomed, I think, every one of us, eventually. None of us knows how we will meet our end. If our country is plagued by restlessness than it is also plagued by a belief in the myth that we have any kind of control over what happens to us.

I get a physical reminder of this the next morning, back on the road and headed to Cheyenne, when I experience anaphylactic shock for the second time in my life: lips swelling up to my nose, throat itchy and swelling, eyelids beginning to seal shut. In the car mirror I look like a Botoxed, newborn kitten. I turn around and head to the nearest emergency room, where I make it just in time to be injected with a delightful, heart-hammering cocktail of Benadryl, steroids, and adrenaline. As the IV goes in, the doctor tells me that the cells of the body carry memory. In other words, if you have an allergic reaction once, subsequent attacks will be more intense and severe. The body knows, remembers, and is ready and able to freak out the second time around. Carole and Ed arrive to care for Ronan and we guess about the causes of the shock: bee pollen in the smoothie? Nuts from the day before? "Sometimes you can just suddenly get allergies," the doctor says, as if I'd suddenly adopted a bad habit like smoking. But it makes sense to me. I feel allergic to the whole world and all the bad news in it. "Never get Botox," Carole jokes, and we take a photograph of my messed-up face as insurance that I never will.

Carole watches the vitals screen behind me and gets concerned when the heart rate spikes. "Ooh, you're a lightweight," the nurse coos as she fits the oxygen mask on my face. When I was 18, I remember leaving my aerobics class after I started feeling funky, walking back to the dorm, struggling up the stairs, and calling out for my Ryann, my roommate. I remember looking in the mirror and laughing about how funny I looked, all puffed up like a weird red-headed fish, even as I was losing my breath and Ryann looked pale with fear. I remember the adrenaline shot and the sleepiness in the quiet rural Minnesota hospital; I remember being worried about finishing my Plato paper. Now, almost twenty years later, I'm worried that the quick rise in my heart rate means I might die, that the burn in my chest signals the end, and I don't want to die in a regional hospital ER where photographs of nuns line the walls and where a warning in the waiting area lets you know that life will be saved NO MATTER WHAT and that abortions will not be performed. I don't want to die before Ronan, which is something I had not once considered before this moment. At 37 I am much more attuned to the body's fragility, much more conscious of the skinny-string moment between this outcome and another. If I'd left Carole's house only 30 minutes earlier I would have been calling 911 on the highway, where there might have been ambulance-impeding traffic or no cell-phone reception.

Ed comes to sit with Ronan while I am prodded and injected and watched and SAVED, really, and I nod off into a drugged sleep. When I wake up in a state of wooz I see Ronan, sleeping frog style, across Ed's chest, his soft mouth open, Ed awake but with his eyes closed. A moment of peace that is quickly interrupted by a woman rolling in on the other side of the curtain. Ronan startles but resettles. Ed rubs Ronan's back and says "shhhh." I hear the nurse talking to the older woman who is here after having a negative response to new medication. She repeats her birthday to about four different people within a matter of minutes. 8.13.39. 8.13.39 she croaks out. "Okay, sweetie," says the nurse, or "okay, hon," and I want to tell her that this woman born on 8.13.39 is not her sweetie or her hon. She is a grown woman with a name and a story. Her husband is trying to explain to another patient nurse about his wife's medications. "Okay," says the saccharine-voiced nurse, "since you have Secure Horizons insurance, I need you to repeat your birthday one more time." Secure Horizons? Really? I'm awake now and I've unhooked myself from the oxygen and the heart monitor. Ronan is touching the stiff hospital sheet with a slightly trembling hand. "I'm going to I-Hop," the husband says. "Do you want anything?" The woman's voice is slightly wheezy, but she says, "Strawberry crepes,"  through a hiss of oxygen. Off he goes, returning 45 minutes later with a Styrofoam container of crepes that he helps her eat.

I think of the man from Laramie again. How he will be asked to begin again, even though he doesn't want to. I think about how people will discuss him for a while, and talk about how tragic it is, and then they will forget about him. I will probably forget about him, too. But he will have to go on. And he is not so different from me, I decide, or from you. Nobody's horizon is secure, no matter how expertly the insurance companies try to spin this tale. He is beginning where all of us, at some point or other, will begin. Like Odysseus, we will, at some point in our lives, rock up to some distant shore having lost everything: our family, our pride, our ambition, our physical strength, our ability to be consoled, our mental health, all our hope. Like the post-flood Noah, the world washed away, beginning again. Humanity is the definition of heartbreak, not one man's horribly sad and horribly unfair story. It is the human story; it is your story. You make the mistake of thinking it is not at your own peril.

How to say this strongly, passionately enough. Although our individual stories of loss are different, we will all lose and we will all be asked to start over. To say otherwise is not only to disrespect that nature and quality of one man's loss, but to reveal that dangerous short-sightedness. There but for the grace of God go I, people are fond of saying, as if a disastrous situation has ejected that person from God's good graces. You are not going anywhere but for the grace of God. You are just going. It's easy to take that distancing step, but much more difficult to be a witness, which is a vastly different enterprise. Sit and listen. Understand that you, too, are human. Be brave enough to look that fact in the face. You are doomed and you must go on: these two realities held in balance define everyone's human struggle.

I could have died on the highway with my terminally ill baby in the back seat. Either way, I guess I'm doomed, and that Ronan is doomed, but perhaps no more than anybody else. I guess that I will also have to figure out how to begin again when Ronan is gone. That, too, is a human story.

On the way home we pass a fatal car crash between Denver and Cheyenne. The next day I buy a book and a 2012 planner, wondering: how many of these days will Ronan live to see? I walk by all the parenting books, the bargain books, the fantasy dragon books and stand in line with all the tourists in town for the big rodeo. I'm still itchy all over, hopped up on the steroids I'll take for the next few days. Above the cashier is a picture of a boy, about six or seven, with dark curly hair, reading from his Nook. A boy in a nook with a Nook. Through the window you can see the green, leafy trees – a little boy in a New York City apartment, reading. He is the image of Rick as a little boy. I think of the Ronan I had thought would love to read, like his parents. I remind myself that my son is who he is and that it's enough. My expectations of him would only serve me, not him, as all parental expectations, in the end, do. I remind myself that I'm practicing a new and different kind of parenting that's not better or worse but that has value, even though people are always telling me how unlucky I am, how tragic we are.

John Calvin, my favorite thinker of the year, lost his children as infants. He soldiered on with his work, passionate and difficult and brilliant man that he was. As his biographer Bruce Gordon notes, Calvin didn't give much of himself away in his work, so we don't really know his feelings about this, although we can certainly imagine. I wish he had – a letter, a diary entry, something. But he was a medieval man, and probably not likely to pathologize his pain, to analyze it, to dissect it. People didn't expect to live to be 100 in the 1500s. I sometimes feel like I'm living in a medieval universe – Tay-Sachs, of course, being thousands of years old, and there is still no cure, nothing to do except "make the baby comfortable." And despite all the "progress" of this world, pain happens. Accidents happen. People die.

In the ER, life is precious – a Code Blue always ready to be called, defibrillators at the ready, but it's also cheap. "You've got a bed on 20!" I hear someone call out. Nobody's horizon is secure. But you still have to have one. You still have to get up in the morning and live. That's the epic story of all our lives, the only real challenge worth worrying about.

After a big defeat, when Obama regrouped and decided to campaign again, he talks about getting in his car with a map on the passenger seat and heading out. I like the image, the impulse. He mentions no goal, no end point. Just a map as a rough guide to an unknown journey. But a beginning. So yes, we read about tragedies with our breakfast and then we go on. We begin again. That is what we're supposed to do. It is not an easy story, for any of us, but it is the story of being human. The only story we have, and it's the single story we all share.