Good grief

Grief is a funny thing. A peculiar thing, I mean, not an entertaining one. It creeps in unexpectedly when everything seems fine, silent as Carl Sandburg's fog which "comes / on little cat feet." It does not listen to reason. It pays no attention to any list of gratitudes. When it wells up, cue the waterworks.

Grief brings fragility. As though the delicate eggshell of the heart could crack open at any moment, revealing an endless salt wellspring. Even writing about it from a distance, I want to keep it at arm's-length. I use stock phrases: "a funny thing," "cue the waterworks." I'm deflecting to keep it at bay.

Grief doesn't only come in the aftermath of loss. There's anticipatory grief, awareness that a loss is coming. And sometimes losses compound one another. The loss of health. The loss of the unthinking freedom which comes with health. The loss of an anticipated future, of what one thought would be.

Grief is, I find, not like depression. When I have experienced depression it has placed a scrim between me and the world, whereas grief leaves one exposed and open. When I can head depression off at the pass, that's a good thing, whereas trying to evade grief seems emotionally and spiritually unwise.

Also unlike depression, grief has a known cause: loss, or the expectation of loss. It's not an existential sadness without explanation. Grief has meaning. As Rabbi Matthew Gewirtz has written, grief can offer the gift of transformation when we allow ourselves to feel it fully and to be changed.

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Learning to greet collapse with joy: from Tisha b'Av to Sukkot

This concatenation of ritual -- this dance that begins on Tisha b'Av and ends on Sukkot, that begins with the mournful collapse of a house and ends with the joyful collapse of a house, this intentional spasm that awakens us and carries us through death and back to life again -- stands for the journey the soul is always on.

That's Rabbi Alan Lew in the book I begin rereading every year around this time. This Is Real And You Are Completely Unprepared: The Days of Awe as a Journey of Transformation.

Every year some of the same passages leap out at me. And every year there are some different lines which strike a chord. This is very like my experience of reading Torah every year, too.

This year I'm struck by his reminder that this period of holy time begins with the mournful collapse of a house -- the fallen Temples -- and ends with the joyful collapse of a house -- the sukkot we dismantle at the end of our festival season.

Impermanence is inevitable. The house is going to collapse. Our bodies fail. Our lives come to an end. But do we greet that inevitable collapse with anxiety, or with faith in whatever comes next?

[W]e can regard the ninth of Av as a time when we are reminded that catastrophes will keep recurring in our lives until we get things right, until we learn what we need to learn from them. Tisha b'Av comes exactly seven weeks before Rosh Hashanah, beginning the process that culminates on Rosh Hashanah and Yom Kippur. Tisha b'Av is the moment of turning, the moment when we turn away from denial and begin to face exile and alienation as they manifest themselves in our own lives -- in our alienation and estrangement from God, in our alienation from ourselves and from others.

The moment when we turn away from denial and begin to face exile and alienation. For most of us this doesn't mean exile from the Land. But everyone experiences exile, even if only from the childhood innocence to which we can no longer return.

It is so tempting to deny that everyone feels alienation and exile. I want to pretend that I don't feel these things, and that my loved ones don't either. It is so tempting to put a band-aid over everything that hurts and pretend that we can make it okay.

But today is the day to face the fact that a band-aid isn't going to cut it. That loss and fear, sickness and death, alienation and estrangement are part of every life. And in that existential turning, we can begin to change how we relate to all of these.

As Rabbi Lew writes, "Tisha b'Av is the beginning of Teshuvah, the process of turning that we hope to complete on Yom Kippur, the process of returning to ourselves and to God." Today, because we are willing to face grief, we begin to return home.

Tisha b'Av has a hot tip for us: Take the suffering. Take the loss. Turn toward it. Embrace it. Let the walls come down. // And Tisha b'Av has a few questions for us as well. Where are we? What transition point are we standing at? What is causing sharp feeling in us, disturbing us, knocking us a little off balance? Where is our suffering? What is making us feel bad? What is making us feel at all? How long will we keep the walls up? How long will we furiously defend against what we know deep down to be the truth of our lives?

There's no escaping loss. All we can do is let the walls crumble -- the walls of "holding ourselves together," the walls of "bad things happen to them but not to me," the walls behind which we've allowed ourselves to become complacent and comfortable.

Because every moment is a transition point. And in every moment we can choose to accept the truth of our lives -- that life is temporary; that we come from Mystery and we return to Mystery; that we can't protect our loved ones from sorrow and pain.

All we can do is let the walls fall, and grieve their falling, and pour out our hearts before God -- throwing ourselves wholly into the journey toward that other home demolition, the one at Sukkot which we will greet with song and processional and joy.

Because if we can learn to greet that home demolition with joy, then maybe we can learn to greet the collapse which is at the heart of human existence with joy. Things fall apart. Can we use the next two months to learn how to greet that with celebration?

Sorrow and illness, from near and from far

I've written half a dozen different openings to this post, but none of them feel as honest as beginning with this truth: sometimes it's hard to be far away when a loved one is sick. As a rabbi I've bumped into this truth frequently, ministering to people whose loved ones are distant. But there's a gulf between experiencing something vicariously, even through profound empathy, and experiencing it in one's own heart. As I wrote a while back (Spiritual life in the open), I am learning now to navigate the experience of praying for a loved one who is ill. Sometimes that experience stretches me. Often I feel that I am not handling it well enough. (What would "handing it well enough" even mean? I'm not sure. But the feeling arises even so.)

Intellectually I know that even if we were in the same place, there wouldn't be much I could do. I wouldn't be able to heal them. I wouldn't be able to make them feel better. I wouldn't be able to magically lift the exhaustion or the discomfort. I wouldn't be able to do away with the myriad insults of longterm illness, from the pic line through which chemicals daily flow, to the side effects of those chemicals, to the weariness which makes even previously-pleasant experiences too tiring to imagine. But when I am far away, not only can I not do any of those things, but I only get scattered glimpses of how my loved one is doing. I'm looking at them through a tiny gap in a moving curtain -- a phone call here, some emails there, none of which are enough to add up to a complete picture. I imagine that if I were there in person, I would be able to help more. At least I would be there.

That's what runs through my mind all the time. And then I spend a few days with my loved one, and I recognize the ways in which even being physically present doesn't hold a candle to the limitless fog of longterm illness with no definitive endpoint in sight. These are rocky shoals and unfamiliar waters, and there is no lighthouse guiding the way. Nothing is easy. And my heart overflows with emotion, because this is not what I want for my loved one, and I am entirely powerless to effect any change at all. What does it mean to try to maintain optimism in the face of a beloved's suffering? What does it mean to try to maintain hope? To what extent am I obligated to cultivate hope even if my loved one can't join me in feeling that hope? There is a low thrum of grief, as steady as the beating of my heart. Jewishly we say that descent is for the sake of ascent, but I can't see how to transform this.

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How news and social media can hurt us

Crying_computer_userLately I've been talking with rabbinic colleagues about how best to minister to our congregants who are struggling with the news out of Israel/Palestine. We're hearing from people who are unable to fall asleep because they can't stop thinking about the images of destruction and grief, or who wake up and immediately start agonizing about the conflict or worrying about loved ones.

For some, the realities of what's happening there provoke a crisis of faith. For others, those realities provoke profound anxiety. How can we best care for people who are struggling in these ways? The question feels especially relevant to me because not only am I tasked with extending pastoral care to people who are struggling, but because I myself am also struggling to maintain my emotional and spiritual equilibrium in the face of the violence, destruction, and fear.

Maybe the first thing we can do is honor the reality of the struggle. A colleague just pointed me to something I found really interesting -- research showing that media exposure to trauma can create trauma in those who are watching, even from afar.

Tens of thousands of individuals directly witnessed 9/11, but millions more viewed the attacks and their aftermath via the media. In our three-year study following 9/11, my colleagues and I found that people who watched more than one hour of daily 9/11-related TV in the week following the attacks experienced increases in post-traumatic stress (PTS) symptoms (e.g., flashbacks, feeling on edge and hyper vigilant, and avoidance of trauma reminders) and physical ailments over the next three years.

The previous conventional wisdom had been that indirect media-based exposure to trauma is "not clinically relevant." But these researchers found otherwise. The article continues:

The relevance of indirect media exposure became apparent again after last April’s Boston marathon. In the days following the marathon bombings, my University of California, Irvine colleagues and I decided to replicate our 9/11 study and examine the impact of media exposure to the Boston Marathon bombings. We sought to look at all types of media: how much TV people watched, their exposure to disaster-related radio, print, and online news, and their use of social media like Facebook, Twitter, YouTube, and Vimeo in the week following the bombings. We were especially interested in responses to social media coverage. Unlike traditional media that warn us about the gruesome nature of an image before showing it to us, social media typically display such images without warning.

Here's the conclusion to which I really want to draw your attention:

People who consumed lots of bombing-related media in the week after the bombings were six times more likely to report high acute stress than those who were at the Boston Marathon.

Let me be clear -- I am not suggesting that those of us who are following stories out of Israel, the West Bank, and Gaza from afar are experiencing more trauma than those who are there. I recognize that from afar we can only barely begin to grasp the terror and the trauma. My child is safely watching cartoons; other peoples' children have been terrorized and killed. There is no comparison. What I am suggesting is that the media we consume has an impact in all four worlds: spiritual, intellectual, emotional, and even physical.

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Spiritual life in the open

Empty-Hospital-BedAt my two most recent poetry readings, during the Q-and-A session, someone has asked me what it's like to live my life so publicly and to expose my heart in my poetry as I do. The truth is, writing poems of miscarriage and healing, or poems of postpartum depression, didn't feel "brave." It just felt ordinary. I make sense of my life through writing. I always have, ever since the adolescent days when I kept a diary in a series of cloth-bound notebooks which I kept proudly on my shelf. Sharing my writing with others who might be walking a similar path has become one of the ways I minister to people around me. I have learned that when I share my experiences (whether sweet or bitter) I feel less alone. And people who read what I write often tell me that they feel less alone when they read my words, too, and that feels like an added blessing.

But I do think a lot about how my openness, particularly my poems of early motherhood, may someday impact our son. I hope and pray that when he is old enough to read Waiting to Unfold, he sees the love which was always a throughline, always present, even when I was struggling to find myself amid the waves of postpartum depression which threatened to drag me down. But I know that as the child of a poet, and the child of a rabbi, he may come to resent the ways in which my openness about my life means that his life is sometimes visible to the outside world, too. Maybe you've noticed that I rarely use his name on the blog anymore -- not because it's a secret, not because it's difficult to unearth, but because I'm becoming conscious that I don't want my life story (in which he is certainly a star!) to overshadow his narrative about himself.

I know that many of you, like me, have been avid readers of Rabbi Phyllis Sommer and Rabbi Michael Sommer's Superman Sam blog. They began the blog when one of their four children was diagnosed with leukemia. They posted there religiously about the ups and downs of his treatment; the blog is where where so many of us, me included, got to know their beautiful family and their extraordinary son Sam, may his memory be a blessing. I admire them for that -- and I admire them even more the way they've continued writing about their journey of grief in the wake of their son's death. When I read their blog now, I see them modeling for all of us how to make our way through the murky waters of grief. They are showing us, by example, how to grieve out loud and how to let other people offer care and love in response. They are living their spiritual lives in the open, and they teach me more than I can say.

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Joshua Prager's Half-Life

HalfLife_Byliner_396_612_35I recently finished Joshua Prager's Half-Life: Reflections from Jerusalem on a Broken Neck. Prager was a young man of nineteen studying in Jerusalem when the bus he was riding in was slammed by another vehicle -- not an act of terrorism, as one might have assumed, (especially when a Palestinian driver hits a bus full of Jews), but simple carelessness and bad driving. His neck was broken, a moment of rupture which divided his life irrevocably into a "before" and an "after."

The book's narrative curls around and loops in on itself. We read about Prager as a hale and hearty student; we read about him paralyzed; we read about the morning of the crash, and the last bodily freedom he remembers; we read about physical therapy and the excruciating effort to regain bodily control. Learning to breathe and to sit again. From quadriplegic to hemiplegic to walking, albeit with difficulty, with a cane.

We return with Prager to Jerusalem, and as voyeurs on his shoulder we accompany him as he slowly makes his way through the city where his life changed. Navigating, for instance, the cobbled streets and uneven city curbs which I remember from pushing a stroller there in the summer of 2008 with my housemates' three-year-old in tow.

This book is full of poignant tension between what was, and what is, and what might yet be. The same could be said of Jerusalem, with its storied history and contested present and future. As Prager himself notes: "This ancient city is a palimpsest, its narratives written and rewritten on white stone." This memoir's structure evokes that quality. At the beginning of any new section, we might be in the now or we might be in the then -- or any moment in between. Even in the now, the then peeks through.

Prager approaches his subject with clear eyes and deft turns of phrase. I admire his ability to write so candidly about his experience, without sentimentality and without sparing anyone, including the reader. The scene where he goes to meet the driver of the minibus responsible for his injuries is a particularly fine example of that. He doesn't sugar-coat and he doesn't flinch from what is -- and he also resists the urge to demonize or oversimplify. (You can hear him tell that story in his TED talk, which I've linked to below.)

One of the book's most memorable moments for me (as a rabbi and sometime hospital chaplain) is the scene where the rabbi emeritus of his synagogue walks into his hospital room and loudly prays over his prone body. Prager writes:

I was mortified. No, rabbi! NO!

But I, who one month before had wrestled a trio of classmates, pinning each, was unable to fend off a rabbi in his eightieth year. And as the litany unfurled -- God asked to shine his face upon me, to be gracious to me, to lift up his countenance to me, to give me peace -- I wished to disappear. But I saw over my stockinged feet that the congregation was not listening, the yellow man beside me, his saffron urine bagged between us, minding his tea. And so I succumbed to a blessing.

In some ways this whole memoir feels to me like a book about succumbing to blessing with grace, and also a book about fighting for every inch of recovery and understanding. The two coexist sometimes uneasily, and that tension is part of what drives the narrative forward.

Prager resists the platitudes -- "everything happens for a reason" or "God only gives us what we can handle." (Two of the top sentences on my list of things never to say to hospital patients, by the by.) But he also resists, I think, the sense that if God doesn't have a "plan" then our lives is meaningless. I experienced this book as Prager's work at making meaning out of his own life, out of the lived Torah of his human experience. And in reading about his process, we join him in making, or finding, meaning too.

You can read an excerpt online here. To my surprise, the Kindle edition is only $3.99 on Amazon. Worth a read.


For more:

Joshua Prager's TED talk, In search of the man who broke my neck [video]

The Q & A: Joshua Prager: Reconstituting a Self, The Economist

Returning to the hospital which saved my life

History_07I don't remember when I first learned the story of my birth. As long as I can remember, I've known that I was born ten weeks early, weighing 3 lbs 1 oz, in a hospital which had no neonatal unit; that I was rushed across town in an ambulance and lost half of my birth weight before I made it to the neonatal unit at Santa Rosa; that I spent six weeks in an incubator because I had hyaline membrane disease, a terrifying diagnosis because it had recently taken the life of Patrick Bouvier Kennedy.

I knew in a distant intellectual way that many premature babies born as early as I was didn't survive. I remember taking penicillin every day until I was about six, when suddenly tests showed that I had developed surfactant, to everyone's surprise. (Developmental insufficiency of surfactant, and underdeveloped lungs, are among the problems of hyaline membrane disease, now called infant respiratory distress syndrome.) But as a kid I took my own survival for granted, as I think most children do.

It wasn't until my nine months of clinical pastoral education, in my first year of rabbinic school, that I started to understand just how scary my birth must have been for my parents. One of the places where I made the rounds, at the hospital where I served as a student chaplain, was the neonatal intensive care unit (NICU). There I saw impossibly tiny babies, babies whom one could hold (as my father had always reminisced) in the palms of cupped hands. Babies struggling for vitality. And I saw their parents, by their sides, hoping and praying and yearning for their babies to thrive until they were healthy enough to bring home. When I could, I ministered to those parents. Sometimes I told them that I myself had been one of those NICU babies. I think -- I hope -- that they took some comfort from that.

While I was in San Antonio visiting family last week, my childhood pediatrician took me to visit the NICU at the hospital which saved my life. As a kid I knew Dr. Wayne as the tall man with the gentle voice who took care of me when I was sick (which was fairly frequent -- perhaps a legacy of my premature birth.) He used to give me tongue depressors on which I could draw puppets. Now I know that since then he's had a broad and illustrious career which includes teaching medical students, serving as an administrator for Christus Santa Rosa Children's Hospital, and being honored there with the creation of the Richard S. Wayne Distinguished Chair for Pediatric Cardiology. And he was gracious enough to take the time to give me a tour of the NICU which once saved my life.

RawImageDr. Wayne began by showing me photographs from the early days of the hospital, starting with the three Catholic Sisters of Charity of the Incarnate Word who began caring for the sick there in 1859. (My favorite photos were from the 1920s: the doctors with bushy mustaches and white coats, the nuns standing in the background of the operating room in their dark habits, and of course no one was gloved or masked because that wasn't yet the norm.)

Then we went to the place which had been the NICU in 1975 -- a small squarish room, now a storage room filled with disused hospital beds. (On some walls, remnants of yellow duckling wallpaper remain, a faded imprint of the room's former life.) He showed me where the neonatal cribs had been. I could see how little space had been available for anyone else in the room; parents couldn't stay with their kids, there was no place for them to be. He told me about what they had at their disposal back then, much of it retrofitted adult medical equipment.

And then he showed me today's NICU at Santa Rosa, with its brightly-colored floor cemicircles denoting each two-crib "pod," the headwalls filled with places to plug in monitors and medicine-dispensing pumps, gentle lighting for the babies' comfort, floors and ceilings designed to mute the busy hospital's sounds. To my amazement, we met someone on the neonatal transport team who's been working there for 41 years, and when told my birth year and situation, remembered me! We walked slowly around the unit, and as we passed different babies, Dr. Wayne stopped to chat with their caregivers or to remark quietly to me about some detail of their situation and their care.

Visiting the modern NICU moved me deeply. I saw tiny babies: some resting in their specialized cribs; some cradled in nurses' arms, in the wooden gliding rockers which sit alongside each crib, taking bottles; some attached to specialized preemie ventilators. Dr. Wayne showed me some of the equipment they use in truly dire cases, including cases where they have to mechanically bypass both heart and lungs. (That's extracorporeal membrane oxygenation, or ECMO, and the Santa Rosa NICU is one of the places where this procedure is done with neonates.) We visited the pediatric intensive care unit, too (where I thought, with quiet grief, of Superman Sam and his family as they move into hospice mode). Everywhere we visited, I was struck, as always, by the kind and gentle caring of the pediatric nursing staff.

When I was a student chaplain, I was married but had not yet taken the leap into parenthood. My chaplaincy colleagues told me that having a child would be a profound theological education. And they were right. Many of the poems in Waiting to Unfold reflect how becoming a mother has changed my sense of God. As I toured the NICU and PICU at Santa Rosa, I found myself thinking not only about God's limitless compassion, but also God's limitless grief when Her children suffer. I suspect that ministering to pediatric patients and their families would challenge me in a new way now that we have a child. It would be all too easy to project my own fears of loss and grief onto the parents and children in need of care.

The modern NICU at Santa Rosa is gorgeous -- and as the hospital is reconstructed in its new form, it's going to be replaced by a new NICU which will be light years ahead of this one, as this one was light years ahead of the one I once inhabited.  (For more: see Children’s Hospital of San Antonio to work with Baylor College of Medicine, Texas Children's Hospital to elevate pediatric care in San Antonio, about Santa Rosa's plans to collaborate on a new facility.) But before that renovation takes place, I'm grateful for the opportunity to walk through these halls and to offer silent prayers for healing for the babies who are growing there now -- and to offer my spoken words of immeasurable gratitude to those who every day do the work of keeping kids like me alive.


Black and white image: NICU "isolette" from 1984, nine years after my NICU years, from a history of the March of Dimes. Second image: from an Express-News article about the Santa Rosa NICU.


Maintaining hope in the face of depression

Depression-loss_of_loved_oneSomeone asked me recently how to maintain hope when depression is dogging one's heels.

The first thing I want to say is: no matter how isolating depression feels, you are not alone. Others have been where you are. We recognize the terrain and we recognize the tricks that depression plays on you -- the ways it makes you feel existentially solitary, disconnected, broken. We recognize, too, the way that depression tries to preserve itself. How it murmurs into your ear that nothing will ever be different -- that this is what life is and you will never feel any other way. It is lying to you.

There is help, and I urge you to take it. If you are in therapy, call your therapist. (If you're not in therapy and want a referral, ask someone local to you -- your rabbi or someone you trust.) If you are in spiritual direction, call your spiritual director. (If you're not in spiritual direction but want to explore that possibility, here's one way of finding a spiritual director; you might also reach out to one of my teachers for a referral.) Consider antidepressants or anti-anxiety medication; know that there is no "weakness" in not being able to bootstrap yourself out of depression.

Extend kindness to yourself in whatever ways you can. Try to eat well. Try to get enough sleep. For me, a hot shower and a cup of good tea are always restorative. (So is good hand lotion. I know, it sounds silly, but it really does help.) Walking outside in the fresh air sometimes helps too. Take advantage of whatever small things you can do to make yourself feel better, even if the feeling-better is only temporary. Lather, rinse, repeat. Our sages famously listed things which "have no limit" -- and though self-care isn't on their classical list, it's definitely on mine.

Recognize that depression may at times be disabling, and give yourself ample credit for any goal you set which you are able to achieve. Sometimes just getting out of bed in the morning may feel like you're trying to climb Everest from inside an iron lung. And -- this seems extra-unfair -- bear in mind that sometimes depression brings with it a kind of emotional paralysis which makes asking for help almost impossible. The depression may whisper to you that no one wants to hear from you when you're "like this" or that there's no point in seeking help. Let me say again: it is lying to you.

I heard Rabbi Jeff Roth teach years ago that if one reaches the hour for reciting the modah ani prayer for gratitude in the morning, but finds oneself unable to access the gratitude with which one wishes to invest the prayer, one can say the prayer with the intention of someday being able to feel gratitude again. I know that there are days when gratitude feels impossible to reach. I know that there are days when it feels implausible to even hope for better. On those days, know that people who love you are willing and able to hold on to that hope for you even if you can't reach it yourself.

You who are struggling with this right now: I am holding you in my prayers. If you can't believe that you will ever feel better, don't beat yourself up for that. That's not a failing on your part: it's something the depression has stripped from you. But I believe that this isn't all there is, and I believe that you will reach a better place again. If you can't believe that right now, it's okay -- I'll hold on to that belief for you until you're able to hold it for yourself again. You are loved by an unending love: not only when you are healthy, but also when you are sick; not only when you are optimistic, but also when you feel the way you feel now.

May you find comfort, speedily and soon.


Image source: wikimedia commons.


Daily April poem: on the couch


You're pale against the red velour
and where your moose pyjamas gape
your belly is jaundiced
the curry-powder yellow of betadine.

They promised you a popsicle,
pressed a berry-scented mask
to your struggling face
and then you woke

to uncooperative legs and tender tummy,
a tube biting your hand like a snake
and monitor cables streaming
from your skinny ribcage.

Now you lie limp as the blanket
draped over your knees.
When you try to move, confusion
blooms: why does it hurt?

And clustered like ghosts
in the back of my heart:
all of the children who won't
be fully recovered tomorrow

all the parents who've learned
to mask oxycodone with honey,
who shave their own heads bare
in powerless solidarity...

How does God bear it?
Maybe the same way we do.
The heart shatters, but keeps beating
just love, just love, just love.

The second 30x30 poem prompt was "on the couch." I immediately thought of our son on the couch when he was recuperating from (perfectly ordinary, unremarkable) hernia surgery. Then I thought of the recent tough news at Superman Sam (The post you didn't want to read), and of all of the kids who are recuperating -- or not recuperating -- from infinitely more terrifying medical adventures than ours. The reality that children suffer is almost more than the heart can bear. Of course, we ache, and then we keep on loving; and in that, I think we mirror God, the cosmic Parent Who does the same.

If you want to send a note to Sam, you can write to him at Sam Sommer, E584 / Children's Hospital of Wisconsin / P.O. Box 1997 / Milwaukee, Wisconsin 53201-1997. Receiving notes, cards, etc (many featuring superheroes in some way) cheered him last time they were in the hospital for an extended stay.

On the 30 poems / 30 days front: some of us who are writing poems in response to these prompts are submitting them to the 30x30 website. If you're interested in other people's responses to these prompts, you can check out each day's submissions by clicking on each prompt link, here. And if you're interested in other folks who are attempting this same daily poem feat during National Poetry Month, don't miss NaPoWriMo, now in its tenth year!


Eulogy for a child with Canavan's

I don't usually share eulogies here. They are personal, and this blog is public. But this is an unusual situation, and I think the eulogy might be helpful to others, so I've removed identifying material in order to share the essence of what I offered at a funeral a few days ago. If these words are useful to you, you are welcome to adapt them.

If you got here by googling Canavan's Disease, please know that there are informational links at the bottom of this post.

When a child is born, we rejoice. We imagine possibilities. Our minds run away with us, providing us with dreams and imaginings of wonders we hope the child's life will hold.

When this child was born, no one imagined that his life, and his parents' lives, would be circumscribed by a neurodegenerative disorder... nor that he would come to be such a ineffable presence in the lives of those who knew him, cared for him, and loved him.

Because of the dangers of Canavan's, this boy was never alone. His parents, and later his nurses, took constant shifts in caring for him. He communicated with his eyes and, for a time, with sounds. When he was in his parents' arms or enjoying therapy his smiles and laughter brightened the room.

His was not the life his parents might have dreamed before he was born, but it was his own, and he lived it wholly. He experienced love in the touch of caring hands and the attention diligently paid to the apparatus of his care.

His parents, and his caregivers, experienced a deep connection with him. And they knew that connection was reciprocated, and they knew that connection was real. Every time he fought his way back from another illness, another hospitalization, they knew that -- in his mother's words -- "he still wanted to be here."

His parents knew him without words. They teach us that we can know each other beyond words, and listen deeply past the words we do hear, to something deeper, more ineffable and more lasting.

The same was true of his nurses, his caregivers, physical therapists, music therapists, those who lovingly massaged his body to help preserve his muscle tone, the teachers who came to offer him a window into the wider world. When he lay on his bed in the sun, his parents called it "his beach." Once his health became too poor for him to risk the trip to these hills, his parents preserved his room here intact, a place for their son in this town they called "the home of their hearts."

I was blessed to spend an afternoon with this young man and his family last month. I sang him the lullabies I sing to my own son, and his eyes stayed on mine. I experienced his quiet presence in the room, and the sweetness of his neshama -- his soul -- was clear without any words at all.

I am humbled by this child's life, and by the boundless well of love and compassion which his parents and his caregivers expressed every day through a million acts of caring and nurturing.

He  lived, and struggled, and was loved. He experienced the world from his own unique vantage. In the wake of his death, there is grief. Nothing we can offer will soothe the empty place where he used to be.

May his soul soar free, no longer fettered by limitations or by suffering. And may those who loved him find comfort in the knowledge that his suffering has ended, and that in caring for him so lovingly, they epitomized some of the best of what humanity can be.


For more information:

About Canavan Disease

National Tay-Sachs and Allied Diseases

Center for Jewish Genetics: Canavan's Disease

Jewish Genetic Disorders

Support for Families With Canavan's

Debbie's Psalm 3 - After Returning to Work

I pulled Flames to Heaven: New Psalms for Healing & Praise, by Debbie Perlman (may her memory be a blessing), off of my bookshelf recently. One of the poems I read there which really moves he is her psalm three, subtitled "After Returning to Work."

Reading her psalm, I remember my own journey of returning to work and returning to normalcy after my strokes. And I marvel at the extent to which this poem rings true for me even in the most ordinary of times: no recent illness, thank God; no hospital stay; and still this poem says something I need to hear. Maybe it's something you need to hear, too.



After Returning to Work
For E.L.L.

From the flurry of my life, I will praise You.

As I drive the child-circle errand-round,
Hurrying to meet allotted times,
I will stop for You,
To marvel at Your creation.

From the tasks that await me,
That tempt me to focus on minutia
Of hometasks, and homework, and jobwork,
I will pause for You,
To remember Your goodness.

From my perpetual self-reproof:
Is it enough, could it be better,
One more effort, a different preparation,
I will tarry for You
To praise Your Name.

In this fullness of my life, O God,
Calm my constant motion,
Quiet my pursuit,
That I may wait for You with a serene soul.


Prayers for two boys who are sick

I've been thinking a lot lately about children who are sick. Their names rise up in my morning prayer; their images float before me during meditation. In my extended online community, there are two children who are struggling with cancer. One is a not-quite-four-year-old boy, from whose brain a large and dangerous tumor was recently removed. The other is a six-year-old boy who is undergoing chemotherapy for leukemia. Their names are Gus and Sam.

I have never met either of these boys. If you want to be a stickler about it, I've never met their parents, either -- not in person, anyway; I've never shaken their hands or enfolded them in an embrace. But I read their parents' words, I look at the phtographs their parents share, I hold both the children and the parents in my heart and in my prayers. I know them in the ways which most matter.

It's among a parent's worst nightmares. I can't even really imagine our son being sick, not sick like that -- some self-preservation instinct in me keeps the idea at arms' length. When I was a student chaplain at the hospital in Albany, I ministered to families whose very young children were very sick. But there's a gap between knowing intellectually that my child is not magically protected, and actually getting the realization in my heart. Selfishly, I hope I never have to "get it." And my heart breaks for all of those who do.

A good friend of ours works as a Child Life Specialist. She tends to children who are in the hospital, helping them to understand the procedures they're facing. She uses role-playing and therapeutic play to help the kids process what's happening to them and to help them navigate the often-overwhelming world of the hospital with relative comfort. I think what she's doing is some of the hardest, and some of the most important, work there is.

I pride myself on my words, but when I think about these two boys fighting cancer, and about their families struggling to make sense of their diagnoses and to maintain hope -- when I remember that these two little boys are only two of the 12,500 children and adolescents in the United States who are diagnosed with cancer each year -- my words fail me. I fall back on the one-line prayer which Torah tells us Moshe prayed when his sister was stricken with disease: ana, el na, refa na la -- Please, please God, please heal her.

Please, please God, please heal them. Guide the hands of their doctors and nurses, give us the skill and the insight we need to cure this disease and every disease, guard these children safely until they are well.

October is national breast cancer awareness month here in the USA, and pink ribbons are everywhere. NFL players sport bright pink shoes during football games at this time of year, which is always vaguely comical. I have friends and family who have battled breast cancer. I'm glad people care. But I didn't know until this morning that September, now over, was national childhood cancer awareness month. How did I not know that?

I turn to Debbie Perlman's Flames to Heaven, New Psalms for Healing & Praise, and the book opens to her psalm two. I offer this, thinking of Sam and of Gus and of all the children who are ill, all of the families who fear and hope and grieve.


A Song for the Time of Treatment
For C.R.S., z"l

And I will praise You with clear sweet tones,
Singing Your gift as I gather my courage,
Hearing the music of my life
As, once again, I gird myself for battle.

And I will praise You with melodies
Remembered from my girlhood,
Songs that comfort me in night's darkness,
That relieve pain as I call forth their echoes.

And I will praise You with measures counted
In perfect stillness,
As machines whir and focus their healing beams,
As fluids rush through clear tubing.

And I will praise You, seeking harmony
In the discord of this illness,
Seeking to hear again the sounds of strength
Above the cacophony of this invader.

And I will continually praise You,
All the days of my life.


I asked my friends whose children are sick what we can do to help. The first answer was "consider adding children's cancer research, and the foundations built to help pay for children's cancer treatment, to our charitable donations." Here are a few:

  • CureSearch: National Childhood Cancer Foundation. "CureSearch for Children’s Cancer funds the lifesaving, collaborative research of the Children's Oncology Group, the world’s largest, cooperative pediatric cancer research organization in the world."
  • Children's Cancer Association. "When seriously ill children and their families need more than medicine, the Children’s Cancer Association’s innovative programs create joy one moment at a time."
  • CURE Childhood Cancer. "CURE Childhood Cancer is dedicated to conquering childhood cancer through funding targeted research and through support of patients and their families."
  • Sam's parents also have a How You Can Help Us page on their Superman Sam blog.

On bodies, blood, and blessings

Here's a question I've been asked but have never known how to answer: is there a blessing for menstruation?

I've been thinking a lot lately about the ways in which American culture teaches women to have negative feelings about our bodies. One of the subtle ways in which this happens, I think, is in the shame we're taught to feel about even mentioning menstruation, much less experiencing it.

People generally don't talk about menses in polite company. And when we do, we use euphemisms. (When I was a teenager, people said "on the rag." I'm not wild about that term, though it's slightly better than the curse.)The point, though, is that it's not a curse. Each month when my uterus sheds its lining, that's a sign that new life isn't growing in my womb this time around, but that doesn't change the reality that my body can be a home for new life, and that's incredible.

There are times when menstruation can be a heartbreak. For women (and their partners) who struggle with infertility or experience miscarriage, who yearn for a pregnancy, the monthly return of bleeding can be a source of tremendous sorrow. I remember the first few periods after my miscarriage. The bleeding and the cramping reminded me of that awful morning in Colorado when I had woken to discover my pregnancy over. I don't want to gloss over that.

But that doesn't make the bleeding itself wrong, or gross, or something to be ashamed of. This is something which cis-gendered women -- half of the human population! -- experience every month from puberty until menopause, except when we're pregnant (and, for some women, during the early months of nursing). Our wombs grow the stuff they would need to support a fertilized egg, and then when no egg implants, our wombs naturally let that stuff go. This is a natural part of life, no more "gross" than birth or death -- both of which, granted, may be scary, but to my mind anything which connects us with birth and death is by definition holy.

Birth and death (and, by extension, blood) offer opportunities to connect with something deep and meaningful, something far greater than ourselves. This is, I think, one way to understand Torah's language around taharah and tum'ah. It's not a matter of being "pure" or "impure." When I am not in contact with birth, death, or blood, I am tahor: a spiritual blank slate. When I am in contact with these things, I become tamei, charged-up with a kind of holy energy, vibrating at a different frequency for a little while because I have touched something beyond. (This is not, by the way, a new idea; I've written about it before, drawing on a number of prominent theologians and interpreters who make this case.)

There's a lot of talk lately in the American public sphere about women's bodies and women's health. I recommend Emily L. Hauser's Dear GOP: You do know how pregnancy works, right? (and, for a bigger-picture look at how our culture speaks to/about women, her post Like a girl) and Jessica Winters'  recent essay Are Women People? (also Catherine MacKinnon's scathing Are Women Human?, written in 1999 but still powerful) as well as the excellent series of recent Doonesbury cartoons which some newspapers have published on the Op-Ed page instead of the cartoon page. (Here they are: Part one, part two, part three, part four, part five, part six.)

Watching these debates unfold, I find myself wondering whether the world might be a better place if we celebrated women's bodies instead of allowing ourselves to be made ashamed.

So is there a bracha for menstruation? Rabbi Elyse Goldstein asked that question (see her essay Reappropriating the Taboo at My Jewish Learning), and came up with an answer I think is pretty neat. When she bleeds each month, she recites the blessing

בָּרוּךְ אַתָּה יְיָ אֶלֹהֵינוּ מֶלֶךְ הָעוֹלָם, שֶׁעָשַׂנִי אִשָּׁה / Baruch atah Adonai, eloheinu melech haolam, she'asani ishah:
Blessed are You, Adonai our God, Ruler of the Universe, who has made me a woman.

In a traditional Orthodox prayerbook, as part of the series of morning blessings recited each day, men are instructed to thank God for not making them women, and women are instructed to thank God for making us according to His will. In most liberal siddurim, we find instead a single blessing -- intended to be recited by people of all genders -- which thanks God for making us in the divine image. But I love Rabbi Goldstein's idea of sanctifying menstruation by actively thanking God for making me a woman, using this twist on these very traditional words.

I make the asher yatzar blessing when I go to the bathroom. If I can aspire to sanctify even that act, surely I should aspire to sanctify my body's potential to nurture new life -- and my body's ability to let that potential go.


If you're interested in this subject, don't miss Kohenet director Taya Holly Shere's writing on sacralizing menstruation, which is excerpted in Jay Michaelson's book God In Your Body.  

Poem published in Qarrtsiluni

If you're interested in smart, thoughtful, creative literary work on the web you probably already know Qarrtsiluni, the literary journal whose name comes from an Inupiaq word meaning "sitting in the darkness waiting for something to burst." The current issue is focused on Health, and has featured some fantastic material -- I'm especially struck by the recent poem Sarcoma by Marilyn Taylor, and also Marjorie Saiser's poem Loving My Daughter in the Mountains.

I'm pleased to be able to say that I have a poem in the Health issue, too, which has just gone live. It was written a few years ago, after my second stroke, and was inspired by a series of five photographs at the Williams College Museum of Art (learn more here.) The poem is called "Body," and it begins:

Tradition calls
for parchment, stuff
capable of surviving
stitches made from
tendons and glue.

The body too
is a scroll, scribed
in circles...

Read it (or listen to it) here: Body. And then feel free to leave a comment, either there or here...

Test run

The late-night drive to the hospital sometime before one's child is born is a rite of passage. Almost every pair of expectant parents I know has done it. Maybe there's a preterm labor scare, or the mother starts having contractions which seem to be trending longer, stronger, and closer together and the parents-to-be dash to the hospital to see if this is "really it," bringing their already-packed labor suitcase and strange new carseat along for the ride just in case. In our case it was some blood pressure readings which led us to call the Mother-Baby Unit late at night; their instructions were to come in immediately, so we did, and we wound up staying for a while.

There's no cause for alarm; baby and I are fine, though the staff there kept us for observation (and to work on titration of blood pressure medication) for a few days. The first night at the hospital I dozed a scant few hours of sleep, interrupted by the sounds of laboring women down the hall and the sudden startling (and startled) cries of newborns. The second night, although nurses woke me every few hours to check my BP, I was so exhausted from that first night that I actually slept in between the checks. Being able to get reasonably satisfying sleep in short snatches seems like good preparation for the early weeks of parenthood.

There were things about this adventure which reminded me of my stroke hospitalization a few years ago. This is the same hospital where I was a patient then. (Indeed: the stroke center is right down the hall from the wing where laboring mothers and their babies stay.) And there are elements of the hospital experience which feel the same no matter what one's in for -- the sounds and scents, the beeping of monitors, the tactile experience of getting an IV port or feeling an automatic blood pressure cuff inflate. Since I just recorded a podcast of a stroke poem for Qarrtsiluni's upcoming health issue, it's been surreal to revisit those memories.

Of course, in other ways this experience is entirely different from that one. Where the strokes came out of the blue, these late-term pregnancy complications are not a big surprise. (My history of hypertension all but guaranteed that this, or something like it, would arise.) And there's the awareness that at the end of this journey, God willing, we'll come home with a tiny person: that changes everything.

Continue reading "Test run" »

The view from week 35

Pregnancy, 36 weeks. (I'm not quite there, but I'm close.)

I haven't written much at Velveteen Rabbi about being pregnant, aside from that initial announcement post this summer and a handful of offhand mentions this fall. Those of you who don't know me in person (which is most of you!) could be forgiven for imagining that perhaps the pregnancy hasn't loomed large in my consciousness. Maybe the reason I'm not writing about it is that it's just not a big deal?

That's an erroneous assumption, of course. If anything, pregnancy is such a big deal that I find it hard to write about, at least in prose. I've written half a dozen poems on the subject since I found out I was pregnant last Pesach, but they aren't ready for public consumption. Unlike the Torah poems I often share here, these poems don't feel ready for prime time. There's something intimate about them, about the whole experience. Which is funny, because it's also a very public experience; no one who sees me now can doubt that they know (at least some of) what's going on in my life.

I write here about Judaism, about God, about spiritual life -- a range of subjects which could easily encompass meditations on pregnancy and impending motherhood, if only I could find the way in. Part of the challenge is that the subject is at once so big and so small; it's an enormous life-change and a perennial miracle, and yet it's a perfectly ordinary thing that humanity has done since time immemorial. There's a balancing act here. This is incredibly important, and it's also incredibly mundane. Though I guess the same could be said of daily spiritual practice, too.

Continue reading "The view from week 35" »

Braced for surgery

As Ethan notes, he's about to go offline for a month -- maybe longer -- because tomorrow he's scheduled for his second vitrectomy. (For those who are curious, here's his explanation of the process, written last year.)

This is the same surgery he had last year (this time, they'll be operating on the other eye.) The good news is that the first vitrectomy was successful, and this time we know what the recovery curve might look like. (Last time, they just didn't know how long he would be incapacitated by the surgery, and told him he might be able to drive again after a few days; this time, we know it will be at least month before he can read again, and that he won't be behind the wheel of a car anytime soon.)

Even though it's easier to face with some advance awareness of what we're in for, the prospect of surgery is never comfortable, and neither is the recovery. Thanks for understanding if I'm a bit slow to answer email or moderate blog comments over the next few days -- even though there's relatively little I can do to make this easier for him, my attention needs to be focused here at home for a while.

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Different Strokes

I posted last month that an essay of mine had been published in the February 2009 issue of The Women's Times. The story told in this essay will be familiar to longtime readers of this blog, but a few of y'all asked to see the piece, so I figured I'd share it here now that the March issue is on the stands. Thanks to the editors of TWT for soliciting and publishing the essay.

In June of 2006 I traveled to Montreal to meet friends. When I got off the train, I found that I couldn't speak French. I could hardly hold Ou est le metro? in my mind, and my English wasn't much better. I clung to a slip of paper with my hotel's address on it, and navigated my way via beseeching looks to strangers who kindly pointed me in the right direction.

I unloaded my luggage, met my friends for dinner, and said, "Something strange is going on." They embraced me and pressed Thai food and a beer into my hands. By the time I had eaten half a plate of dinner the mysterious inability to speak coherently had passed. I had a fleeting thought that perhaps I should see a doctor, but I was on vacation in a foreign city with farflung friends; I put it out of my mind. I was thirty-one.

Six months later, on Christmas Day, I lost vision in one eye. We were eating Chinese food and watching a movie when it happened. Half of my field of vision disappeared, as though a veil had descended.

I thought it was a floater. I feared a detached retina. But I didn't want to schlep to the emergency room on Christmas, so I didn't see a doctor until the following day, when the diminished vision didn't improve on its own. A visit to the opthalmologist led me to my first MRI, which showed that the visual problems were rooted in my brain.

Continue reading "Different Strokes" »

"Different Strokes" published in The Women's Times

If you live in the Berkshires or bordering regions in Vermont, Connecticut, or NY, pick up the February issue of The Women's Times and you'll find an essay by me in its pages. Every February TWT does an issue focusing on health; this year they asked me to write an essay about my strokes and their aftermath, seen from the vantage of two years out.

(I'm pretty sure the essay is also in the Pioneer Valley edition; PV readers, can you confirm/deny?)

Many of the observations in the essay may ring a bell to longtime readers of VR. Because the piece begins with the strokes and moves forward through time until now, I touch on several of the stages of my recovery (both physical and emotional) which I chronicled here.

Writing the essay gave me a good opportunity for reflection on the strokes and their lasting implications. Thanks, TWT. (And if any of y'all do read the essay, I'd love to hear your thoughts! Feel free to leave a comment below.)

March 2009 ETA: the essay is now online here.

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Taking care

What a week: anticipation, tension, relief, and aftermath.

Ethan's surgery seems to have been successful. When they let me back into the recovery room and I saw him sitting in a chair, upright and becoming alert again (right eye bandaged tightly), a fierce relief grabbed hold of me that didn't let go for hours. The unmitigated good news is that the surgeon believes they were successful in doing the work they wanted to do -- baruch Hashem and alhamdolillah! Deep thanks to all who left comments, sent emails, and have been saying prayers of all sorts on his, and our, behalf.

Since then, the week has been a bit of a roller-coaster. The surgery is over, but the recovery is just beginning, and the elation of making it through the surgery has given way to some frustration with the limitations of this post-surgical period. Slowly and surely we're finding our way. Yesterday afternoon while I was teaching Hebrew school, a friend came over to read to him for a while. He's planning and cooking elaborate menus; he can't work, exercise, or read, but at least he can cook. (As long as he stays clear of our very sharp knives...)

And I'm learning how unlike chaplaincy is the experience of watching a loved one undergo surgery. I've facilitated lifecycle events for "strangers" (folks I didn't know until they engaged me to work with them), for old friends, and for family, and those three categories feel entirely different to me. When a relationship already exists, the work can be both sweeter and more challenging. Of course, I'm not here to do the work of pastoral care! Though the chaplain part of my brain keeps pointing out how I might try to do things differently if I were.

The counsel I would offer to someone else in shoes like mine this week is this: being family to someone who's undergone trauma -- physical or emotional -- can be difficult. So be gentle with yourself. Cut yourself some slack. Do something nice for yourself. Remember that it's not your job to make things "all better" -- you can't. What you can do is be loving, and be present, and be responsive as best you can. That's all anyone could ask, and it's important work, so kol hakavod to you for doing it.

Anyway. Today is the third day after the surgery and so far, so good. Thanks to everyone who's been with us along the way.


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