The tiniest spark of joy

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We read in the Tikkunei Zohar that Purim is like Yom Kippur. This is hinted-at in the way that on Yom Kippur, one must fast and do teshuvah (repentance / return) not only if one feels like it, but whether or not one wants to do it. This is an enduring decree from the Holy One of Blessing. Rejoicing on Purim is similar. One is obligated to rejoice on Purim, not only if one is happy in oneself, or is in a situation where it's easy to feel joy. On the contrary: even if one is in a low place and completely broken-hearted, body and spirit laid low, it's still an obligation to seek out whatever tiny spark of joy is possible, and welcome that spark into the heart.

On both of these holy days, there's a flow from on high to us here below. Just as Yom Kippur itself atones for us, even if our teshuvah feels inadequate (according to Talmud in tractate Yoma), just so on Purim. Even if a person isn't feeling joyful the way one's supposed to, and therefore one's service of God doesn't feel whole, even in that case the salvation and joy of Purim will flow -- and that potential is open to us even now.

-- The Piazeczyner aka The Aish Kodesh aka R' Kalonymos Kalmish Shapira, Purim 1940

 

Last year, Purim happened a scant few weeks after my mother's death. I was shellshocked. I was in a fog. I scarcely remember the holiday at all. But I remember taking comfort in a text that R' David Markus taught me over the phone. The text said that Purim itself would do its work in me and on me, as Yom Kippur does, and that even if I couldn't access real joy, there would still be a flow from on high that would come through me to those whom I serve.

This year I sat down twice to study this short text from the Aish Kodesh, once with my Bayit hevre, and once with my other hevruta R' Megan Doherty. And only today, on Purim itself, did I realize why this text resonates with me so deeply and why it feels so familiar: this is the teaching R' David shared with me last year when I was in the pit of grief. And, in fact, it turns out this is a teaching I had shared with him a few years prior and had forgotten!

What jumps out at me in this text this year is the idea that we are obligated to welcome into our hearts whatever tiny spark of joy we can find. This isn't spiritual bypassing. This isn't "put on a happy face." This is the spiritual practice of opening our hearts even in difficult circumstances, so that some measure of blessing can flow in. The Aish Kodesh was writing from the Warsaw Ghetto; he knew something about difficult circumstances.

 

God would like us to be joyful
Even when our hearts lie panting on the floor.
How much more can we be joyful
When there's really something
To be joyful for?

-- To Life, To Life, L'Chayim / Fiddler on the Roof

 

I thought of this teaching a few days ago when I was blessed to see the national touring production of Fiddler on the Roof. "God would like us to be joyful / even when our hearts lie panting on the floor" -- Tevye might have been citing the Piazeczyner! Even when our hearts lie panting on the floor, Purim invites us to open our broken hearts to a spark of joy. Even when our circumstances (individual or collective) are dark, our tradition invites us to open to joy.

And when there is within reach "something to be joyful for," in Fiddler's words -- maybe a birth, or a wedding, a friendship, a sign of hope, a Shabbes -- we've got to seize that joy with both hands. Because joy is part of what fuels us. Because without joy, we can't go on. And the world needs us to go on, because there's a lot of work we need to do to bring justice and hope and ethics and opportunity and peace to everyone everywhere, and that's what we're here for.

So if today we're in the narrow straits of a personal grief, a loss or an illness or a sorrow... or if we're in the narrow straits of communal anxiety about the election, or the economy, or the pandemic that is sweeping the globe... we shouldn't kick ourselves for not being able to fulfill the mitzvah of rejoicing. Instead, let's open our hearts the tiniest crack, and let the tiniest spark of joy and hope come in -- and trust that the day itself will do the rest. 

 


Preparing for Pesach in a time of covid-19

ESVqeXEWoAI0SzsI've been reading a lot of posts and articles about why we should be stocking our pantries and medicine cabinets against the possibility of illness, quarantine, and/or disrupted supply chains. The most compelling piece I've read thus far is this one in Scientific American by Zeynep Tufekci. She argues that being prepared is our civic duty and is something we can do as a favor to those who cannot prepare. "We should prepare," she writes, "so that we can help lessen the risk for everyone."

One suggestion that a lot of people are making is: stock up on dried foods, and on the things that members of your household like to eat. This way if you become ill (or if there is a quarantine, or if you are staying home to avoid infection or to reduce strain on grocery workers who may be ill, or if supply chains are disrupted because of widespread illness) you'll have what you need. My kid's favorite foods include bagels, pasta, and toaster waffles. Oh, and granola bars. And buttered English muffins. 

And on the Jewish calendar we're five weeks away from Pesach, when it's customary to remove all of the leaven from one's home. So should I be trying to "eat down" all the hametz in my home in the coming month to make it easier to clean for Pesach in the ways that I want to do? Or should I be picking up an extra box of pasta, an extra box of blueberry Eggos, and an extra box of shells and cheese every time I go to the grocery store, so that we're well-prepared in the event that we need to stay home?

I can argue that Jewishly I have a civic obligation to do what is best for the most vulnerable in the general population (that's the thrust of Torah's repeated injunction to care for the widow, the orphan, and the stranger.) That may mean making sure I have two weeks' worth of shelf-stable food on hand, and stocking up on the things my kid will actually eat -- because as Tufekci argues, preparing is "one of the most pro-social, altruistic things you can do in response to potential disruptions of this kind." 

I can also argue that Jewishly I have a religious obligation to remove hametz for Pesach: that's a practice I've taken on in recent years and it matters to me both practically and spiritually. So I'm laying in a store of the wheat-filled foods my kid likes to eat... and during Pesach, I will move them to the extra freezer in the garage so that they are not in my home proper, and I will "sell" them to a non-Jewish friend, and will declare them temporarily not mine. It's a legal fiction, but this year a very useful one.

Intellectually I know that selling my hametz means there's no problem here. But emotionally I'm finding this jarring.  It feels truly strange to be stocking up now on foods that in any other year I would be trying to consume and not replace. One way to understand Pesach is as a spiritual call to leave familiar constriction and go, even if we don't feel ready. Buying extra stuff to have on hand is the opposite of "drop everything and go" -- though the "not feeling ready" part still holds. 

It feels weird to be buying extra hametz when Pesach is little more than a month away. But I accept Tufekci's argument that preparing for the possibility of staying home (if I can afford a few extra groceries every time I shop, which I can) is my civic obligation, and I think it's a Jewish obligation as well. I'm willing to live with some cognitive dissonance in order to fulfill that obligation, even as I also prepare to fulfill a different obligation that will temporarily make some of these foods not-mine.

Tradition says we left Egypt as a mixed multitude; it wasn't just we who fled Pharaoh. An illness that spreads like this one is a powerful reminder that we are always a "mixed multitude." As a society, we are only as healthy as those who are most at-risk. Preparing now is what I can do to lessen the strain on the system later, and thereby to help those who may be harder-hit than I expect to be... even if that means I'll be schlepping an extra few boxes of pasta into and out of storage this year.


A body that mostly works

TOS

That I have thoracic outlet syndrome is not particularly interesting. That a lot of major league pitchers have it too -- according to my brother-in-law -- is marginally more interesting, but not by much.

Here is my layperson's understanding: the cluster of muscles in and around the "thoracic collar" seize up and won't unclench. Nerves and blood vessels  constrict. Symptoms ensue.

It's mostly low level pain, unless I move in the wrong way. (Trying to put on a coat right-arm-first, for instance, and then wriggle my left arm in.) I've learned to adjust the way I move, the way I sleep, the way I wash my hair. 

I don't like the chronic pain or the inability to lift my arm. But what I really don't like is how it impacts my ability to play guitar. I don't feel like I'm a "serious" guitar player, but my guitar feels to me like an extension of my hands and arms even so. 

Thoracic outlet syndrome can cause pain, and/or weakness, and/or numbness. I'm not always able to manage barre chords these days. Sometimes I can play them; sometimes not. Sometimes I start a song and midway through realize I can't barre. 

It's a little bit funny when I stop and think about it. The pain is annoying but bearable. The limited range of motion is annoying but bearable. But if it gets in the way of my ability to make music? Whoa, hold up there, I can't live like that!

I will put up with pain, discomfort, and numbness. But if they are impinging on my ability to make music -- which is interwoven with one of the ways I most love to pray -- then that's a non-starter. Music is necessary to my soul, like breathing.

I can still lead prayer with my guitar. I'm just aware that it's more difficult than I want it to be. I have to work around the limitations imposed by my neck and shoulder and arm. I'm aware that my body isn't working quite as well as I want it to be.

Blessed are You, Adonai our God, source of all being: You form the human body with wisdom, creating the body's many pathways and openings... 

My thoracic outlet syndrome has given me another point of engagement with Asher Yatzar. That's the blessing that reminds us that we can't pray if our bodies malfunction too profoundly -- if something opens that should be closed, or vice versa.

Sometimes we offer this prayer during Shabbat morning services. It appears in our siddur alongside the prayer for the soul. I call it "the prayer for having bodies that mostly work, most of the time." That usually gets a rueful laugh from someone.

Because even the healthiest among us have bodies that don't always work the way we want them to. Or if they do now, we know that if we live long enough, they won't anymore. This fragility, this imperfection, seems to be built into embodied life. 

Maybe that's why this balancing act feels built-in, too. Making music with an arm that doesn't always work; praying with a heart and mind that don't always work; balancing our broken places with our whole ones -- isn't that always what we're here to do?

Praise God in market and workplace,
With computer, with hammer and nails,

Praise him in bedroom and kitchen;
Praise him with pots and pans.

(So writes Stephen Mitchell in his rendering of Psalm 150.)  In that vein... Praise God in physical therapy and on the massage table, with resistance bands and heating pads. Praise God with the range of motion that might become possible again. 

Or in the words of Psalm 118:5, "From the narrow place I called to You; You answered me with expansiveness." May the Holy One of Blessing answer all of our constricted places, our tight and painful places, our restricted-motion places, with freedom.

 


Rabbi Roundtable on the opioid epidemic

6a00d8341c019953ef01bb09ce0114970d-320wiI think their general intention is to publish these responses once a week, but given that the opioid epidemic is in the news, the folks at the Forward decided to publish a second Rabbi Roundtable this week: 

We asked 22 rabbis: What can the Jewish community do to fight the opioid epidemic?

This is a subject we need to grapple with as a community, and I'm glad that the Forward is putting it in the spotlight.


Healing and second chances

HealingA few days ago we entered into the new month of Iyar. Here's my favorite teaching about the month of Iyar: its name is an acronym for something beautiful. Torah teaches that after the children of Israel crossed through the Sea of Reeds and reached the far shore, they sang and danced -- and then, once they began their journey in the wilderness, they became afraid. What if there were no potable water for them to drink? What if there weren't enough to nourish them in life's journey?

So God instructed Moshe to throw a piece of wood into a stagnant pond, and the water became sweet. And then God offered one of Torah's most beautiful reassurances, saying "I am YHVH your healer." That's the phrase we can see hidden in the name of the month Iyar: אני יה רפאך / I am God, your healer.

In the words of my friend and teacher Rabbi Yael Levy of A Way In:

Iyar is an acronym for this promise the Divine Mystery has made to us: I am your healer. On life’s journeys you will face the seas of struggle, celebration, fear and joy, and whatever comes, I am there to heal and guide you. (Exodus 15:26)

She continues:

Iyar is a month of second chances because the full moon of Iyar provides the opportunity to make up for something that has been missed. During Temple times, it was considered essential for a person’s spiritual and material wellbeing to compete a sacrificial offering for Passover. If circumstances kept someone from someone from making this offering, he/she was given another opportunity to do so on the 15th day of the month of Iyar.

Iyar says it is never too late -- no matter what situation we find ourselves in, no matter how far away we have traveled from our intentions or goals, it is possible to find our way back.

Every life contains missteps and missed opportunities -- times when we look back and realize we wish we'd chosen differently. If only I had reached out to that person then, instead of staying silent. If only I had walked through that door, instead of staying outside. If only I had said "I love you" while I still could. If only, if only.

Part of what it means to me to say that God is our healer is to say that God accompanies us into our second chances. I don't have a time turner; I can't actually go back in time to undo my mistakes, so that I could do then what I wish now that I had done. But Rabbi Levy points out that just as our ancestors were given the opportunity to offer the Pesach sacrifice late, we too can find opportunities to make up for where we missed the mark... and I think that's one way that God can help us to find healing.

Illness and healing are major themes in this week's Torah portion, Tazria-Metzora. Torah's ancient paradigm of tamei and tahor, impure and pure -- or charged-up with the energy of life and death, and absent that psycho-spiritual "electricity" -- may not speak to us. But part of what I relearn from this Torah portion each year is that when one is sick, whether physically or emotionally or spiritually, one may feel exiled from the community. Cut off and isolated. "Outside the camp" in an existential sense: alone even when surrounded by other human beings.

And in those times God comes to us and reminds us אני יה רפאך -- I am God, your healer. I am the One Who is with you in sickness and in health, the One Who accompanies you even when you feel most existentially alone.

When we are sick and feel isolated, the One Who Accompanies is with us. And when we are sick at heart because of the places where we missed the mark, the One Who Accompanies is with us too. May this month of Iyar be a time when our second chances gleam bright before us, so we can find healing in making amends, and making new choices, and remembering that -- as Rabbi Levy teaches -- no matter how far we've strayed from where we meant to be, it's never too late to find our way back. 

 

This is the d'var Torah I offered at CBI this morning. (Cross-posted to my From the Rabbi blog.)


Childhood cancer: I have no words.

A few years ago I posted about two little boys who were fighting cancer, named Gus and Sam. At the time, Gus was four and had recently undergone brain surgery to remove a tumor; Sam was six and was undergoing treatment for leukemia. Sam -- a.k.a. Superman Sam -- died of his cancer. Gus went into remission.

Until now. Gus' mom Sasha recently posted that the doctors have found more tumors in Gus's brain. They are going to operate again, a few days after he finishes kindergarten.

I have no words to offer in response to the horror which is pediatric cancer. I am holding Gus and his family in my heart and in my prayers. Jewish tradition teaches that prayers are uplifted by our tzedakah, our righteous giving. Perhaps my prayers for Gus will have more "oomph," as it were, because I am accompanying them with a gift of money in his honor / toward his treatment or care.

If you would like to help defray the expenses of Gus's treatment, his family has established a dedicated PayPal account at [email protected] -- but they request especially that we donate to the Tanner Seebaum Foundation. His mom writes, "It's run by friends of ours and directly supports research into Gus' cancer, most of which is done by his oncologists. Right now, that research is going to save his life."

If you can spare a few dollars, the Tanner Seebaum foundation is a good place to give them. Give in honor of Gus; give in hopes that the research that foundation is doing will find better ways to help kids like Gus and their families who are dealing with tumors of the brain and spine.

In memory of Sam, donations are also welcomed at the Sam Sommer Fund, established by Rabbi Phyllis Sommer and Rabbi Michael Sommer, Sam's parents. That fund supports pediatric cancer research and pediatric cancer patients and their families. The Sommer family has also supported the St. Baldrick's Shave for the Brave campaign.

On a related note: those who follow me on Facebook may have seen recently that I posted a link to Rabbi Phyllis Sommer's TEDx talk Dead is Dead: Euphemisms and the Power of Words. It's about fifteen minutes long and it is incredibly powerful. (It has also shaped my willingness, in this post, to use real words like "Sam died" instead of euphemisms like "Phyllis and Michael lost their son.") I recommend the video highly.

Please join me in praying for Gus and his family.

May the One who blessed our ancestors, Abraham, Isaac and Jacob, Sarah, Rebecca, Rachel and Leah, bless those in need of healing of body, mind and spirit.  May the compassion of the Holy One be upon them and watch over them.  Strengthen them with courage in each day, along with all who are ill, now and swiftly.  And let us say: Amen.


 


Praying for what's possible

MiShebeirach Card (front)What does it mean to cultivate hope when the doctors say "there's nothing more we can do"? Hopes for a cure have to be set aside. There will be no miracle, no Hail Mary pass, no eleventh-hour wonder. Every specialist has been seen, every possible avenue of treatment or exploration exhausted. All of the tests have been run. What does it mean to pray for healing when the body cannot be healed?

Every Shabbat morning after we read from Torah we offer a prayer called Mi Sheberach, "May the One Who Blessed..." It asks God, Who blessed our ancestors, to bless our sick loved ones with healing. Some years ago at my shul we began using an alternative text. We still ask God to bless those in need of healing of body, mind, and spirit. To be with them, comfort them, strengthen them and revive them.

But not to heal them. Because we recognize that not everyone who is ill can be healed. And as one of my congregants has taught me, asking God repeatedly for healing which we know is never coming can be painful. And it can lead to (entirely understandable) fury at God for not fulfilling the yearned-for wish. Her perspective is actually quite aligned with Jewish tradition, in a certain way. Tradition teaches us not to pray for the impossible, lest we damage our own faith in the Source of blessing.

During the dry season in the land of Israel, it never rains. So all over the world during that season, when we reach the line in our daily prayer which asks God for the nourishment we derive from water, Jews pray instead for dew. Because rain is simply not possible (in the place where our prayers originated), and we don't pray for things which are impossible, perhaps because doing so would be tantamount to "testing" God.

Jewish tradition teaches that when one hears a fire truck going by with sirens wailing, one shouldn't pray "please, God, let it not be my house burning" -- either it is, or it isn't, but the prayer won't change whatever is already real. I learned this when I first studied Mishna several years ago (see Brachot chapter 9) -- one who prays over something which has already happened is praying in vain. Sometimes a medical diagnosis can be like that. All we can change is how we respond to what is.

When a loved one cannot be healed, perhaps a time comes when we stop asking God for healing. We can ask for perspective, for strength, for loving care. We can ask God to be with our loved one and help them find blessings in each day. We can ask for comfort, for some sweetness to mitigate our loved one's suffering or grief. We can ask God to be with their caregivers, and to strengthen the work of their hands. We can ask for what is possible, and that has to be enough.


Dealing With Chronic Illness at The Wisdom Daily

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I'm deeply delighted that the folks at The Wisdom Daily, a publication which I greatly admire, wanted to reprint a version of a blog post which first appeared here.

They reposted my piece about Toni Bernhard's book How to Be Sick as Dealing With Chronic Illness: Can You Do Well At Being Sick?

If you didn't read that post when it appeared here, or if you'd like a refresher, feel free to click through and read the (deftly edited) version they shared with their readers.

Thanks, Wisdom Daily!


How to be sick well: Toni Bernhard's guide for the chronically ill

How+To+Be+SickThis book is written for people who are ill and aren't going to get better, and also for their caregivers, people who love them and suffer along with them in wishing that things were different. It speaks most specifically about physical illness. In the largest sense, though, I feel that this book is for all of us. Sooner or later, we are all going to not "get better."

That's acclaimed Jewish-Buddhist teacher Sylvia Boorstein in her introduction to How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard.

The book was recommended to me by one of my congregants who cares for a chronically ill loved one. She described Bernhard's book as "How to be sick well" -- how to achieve emotional and spiritual wellness even when one's body remains sick.

Bernhard became ill in 2001 and has suffered from chronic illness ever since. The first two chapters tell the story of her illness. Beginning in chapter three she shares how her Buddhist learning offered her a way of approaching her illness as a spiritual practice. She wanted to know "how to live a life of equanimity and joy despite my physical and energetic limitations." This book offers her answers to that question.

Early in that third chapter she writes about the power of "just being" with what is:

Just "being" life as it is for me has meant ending my professional career years before I expected to, being house-bound and even bed-bound much of the time, feeling continually sick in the body, and not being able to socialize very often. [Drawing on Buddhist teaching,] I was able to use these facts that make up my life as a starting point. I began to bow down to these facts, to accept them, to be them. And then from there, I looked around to see what life had to offer. And I found a lot.

I struggle a little bit with her language of "bowing down to" these facts. And yet I recognize that there is wisdom in accepting what is, instead of getting caught up in wishing that things were different. I know that in my own life I get into trouble when I get attached to my expectations of how something will be, and I feel more open to blessings when I can simply be with what is.

Continue reading "How to be sick well: Toni Bernhard's guide for the chronically ill" »


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.

Continue reading "Good grief" »


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.

Continue reading "Sorrow and illness, from near and from far" »


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

POST-OP


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!

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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.

 

THREE

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.