Die Like We're Living

 

One of the last times I visited my Grandmother at the Care Center where she lived, staff members wheeled her hall-mate out on a gurney. 

“We all come here to die,” my Grandmother said matter-of-factly after her sheet-covered neighbor passed from view.

She was right: residents in her wing of the Care Center weren’t waiting to get better or younger or to move somewhere else.  This building was their last stop in this life.  She and her neighbors had come there to die.

Words failed me at that moment, as they often do when we come face-to-face with the limits of our existence.  I held her hand as her words about death lingered in the space between us.  The conversation gradually picked up again and we talked about goings on of various members of our extended family.  Invariably Grandma’s information was more up-to-date than mine on cousins and great aunts and family friends.  Even as the world she inhabited narrowed, her sharp mind and wit enabled strong connections to a much wider world beyond her tiny room.  It was true that she longed for death.  But even as the end drew very near, Grandma died like she was living.

When she moved into an apartment in the assisted living wing of the nursing home a decade ago, my Grandmother signed up to deliver the morning paper to her neighbors.  She attended concerts, Bible studies, and many other events offered in her new home.  She also made it out to countless family events.

Then came the smaller assisted living apartment and the walker.  She persisted in delivering newspapers, handing them out from the basket perched on the front of her walker.  She attended fewer family events, as travel beyond the nursing home required energy she only occasionally had.

A couple falls landed her in the Care Center temporarily, and a few times we thought the end was in sight.  But her body was resilient and she returned to her apartment—the last time in a motorized chair—to pick up again with her magazine subscriptions and her phone calls and visits with family and friends.

She moved to the Care Center for good last year.  Even more of her belongings were given away.  She and we together witnessed the downsizing of her vast life into a single room with a bed, a chair, and a dresser.  But even though her yearning for death grew in inverse proportion to the size of her living quarters, and even though moving, sleeping, eating, living became increasingly difficult, Grandma recommitted herself daily to showing up for another go at life.

Last summer the girls and I stopped in for a visit, and when we arrived at her room, we found it empty.  As we headed back to the nurses’ station, we spotted her, wheelchair positioned close to two friends, head buried in a newspaper.  After assuring us she could return to the paper after we left, we proceeded to her room for delightful conversation, hearing yet again the stories about her years in Madagascar as a missionary kid, about spending her thirteenth birthday in Paris, about how it happened that she ended up going to St. Olaf College in the 1930s, about her thoughts on the latest political elections and use of tax dollars in the city of St. Paul.   

In December, Grandma had a stroke and was taken to a local hospital.  A day later she lost consciousness and the decision was made to return her to the Care Center.  Back in her room, a constant stream of family, friends, and staff made its way into her room to say goodbye.  Family drove in from neighboring states; fellow residents kissed her forehead and described the vibrant friendships they had enjoyed with her.  Staff members stood at the foot of her bed with wet eyes, relating stories of the conversations, laughter, and prayers they shared with my Grandma.  She had come to the Care Center to die.  But those final visits from so many who loved her testified to how Grandma had been dying like she was living.

Living with a stage IV cancer for the past five years has caused me to think a great deal about dying.  About how I hope it doesn’t come for a good while but also about how it might, and about how I will face it when it does.  My Grandma gave me many gifts in my forty-seven years of life, but the most recent—and perhaps the most valuable—has been the gift of seeing her die like she was living.  She often said to anyone who would listen, “I know I’m going to live fifteen years longer than anyone wants me to.”  Truth is she lived about five years longer than she wanted to.  But even as she prayed fervently for death, for the reunion with her parents, her siblings, and her husband of sixty one years, my Grandmother never stopped having stimulating conversations with her friends, relishing every visit from family members, reading her Bible and the newspaper, and thanking God for this new day.

I thank God for my Grandmother’s fabulous long life, and for offering us all a view of how we might live, even when death is just down the hall.  

Borning Cry: Great Grandmother Edition

In December my Grandmother passed away, a month shy of her ninety-fifth birthday.  On her birthday weekend in January, her entire family—joined by many friends—gathered to celebrate her life. At the memorial service, the eldest of the nineteen great grandchildren, Linnea Peterson, who I’m also proud to claim as my daughter, offered a tribute to her Great Grandmother.  This is what she said:

As the oldest of the great-grandchildren, I felt called to give a tribute to Great-Grandma Swanee from a great-grandchild’s perspective. I’m going to structure what I say around a hymn that I’ve learned and come to love at Tverberg reunions, one that I think Great-Grandma particularly embodied. It’s called Borning Cry.  For those of you who don’t know it, it’s is a hymn about a life lived in God’s word and promise, from the perspective of an onlooker. The onlooker is God, but it took me several years of singing the hymn to realize that. Before I figured that out, I often imagined the onlooker as a parent, a grandparent, some sort of older relative. With Great-Grandma’s deep investment in all of our lives of faith, she fit the image I had of this onlooker. Let me show you how.

The hymn begins,

I was there to hear your borning cry
I’ll be there when you are old.
I rejoiced the day you were baptized
To see your life unfold.

My sister and I were fortunate enough to be born in reunion years, so we were both baptized at Tverberg reunions. While I don’t remember either of our baptisms, I’m sure Great-Grandma did rejoice to see us so tangibly join both of the families she cared so much about: God’s family, and the Tverbergs.

The hymn continues,

I was there when you were but a child.

For those of us older great-grandchildren, and especially those of us who grew up in Minnesota, Great-Grandma was very present during our childhoods. There were many family birthday parties, where she looked on and dispensed bits of wisdom. There were dinners at Old Country Buffet, where she always asked for a table of six, even though there were only five of us after Great-Grandpa passed away. We visited her at the condominium, which had a pool; and then in Arizona, which I vaguely remember for its cacti, grapefruit, and Southwestern decor; and then at Lyngblomsten, where we got to see her hardanger and stuffed mockey and play Triominos together. Of course, as I child, I also fixated on the sweet mint candies that Great-Grandma always had in a glass dish on the table, but she could distract me from those with her stories of her world travel and life in Madagascar.

The next verse begins,

When you heard the wonder of the Word/I was there to cheer you on.

Great-Grandma cared very much about our lives in faith. She attended baptisms, first communions, and confirmations for three generations of her descendents, nurturing us all in faith, and I’m sure her influence informed many of us younger Thompsons and made us better at helping each other grow in faith as well. Great-Grandma’s faith was strong, inspiring, and a constant part of her life. She constantly referenced God in a way that I, as a resident of the much more secular twenty-first century, was not accustomed to, and in doing so showed me just how big faith could be. As the daughter of missionaries, the wife of a pastor, and the mother of three more pastors, she believed in her Lord Jesus Christ with all her heart and encouraged all of us to do the same.

With her trust in Christ Jesus, Great-Grandma was confident in her salvation. When I visited her in the hospital after her stroke, I was reminded of the ending of the hymn:

When the evening gently closes in
And you shut your weary eyes,
I’ll be there as I have always been
With just one more surprise.

And I’m sure God was.
          
Amen.

Living Out Loud into the Future with Lisa Adams

I have stage IV breast cancer and I blog about it.  But I’m not the only one—with the disease or with a blog.  Lisa Adams, metastatic breast cancer patient and blogger with a national profile, recently became a touchstone for national debate about the use of social media in publicly chronicling a serious illness.  In early January, two journalists, one at the New York Times and one at the Guardian, wrote pieces critical of some of Adams’ treatment choices as well as the way she lets readers into her life with cancer via blogs and tweets.  Outrage over Bill and Emma Kellers’ pieces (who happen to be married) was swift and fierce, not just for the critical questions they raise about Adams’ choices but for inaccuracies in important details (like getting the number of Adams’ children wrong, or how long she’d been living with metastatic breast cancer) and in including quotes from private correspondence with Adams without permission, prompting the newspapers’ opinion editors to publish pieces alternately apologizing for and defending the journalists (if you want to read more, here’s one place to start: The Guardian website). 

Perhaps the most controversial aspect of Bill Keller’s “Heroic Measures” column is his not-so-subtle suggestion that Adams should consider going more quietly into that dark night rather than aggressively treating the metastasizing cancer.  In weighing the alternatives, he contrasts the treatment regiment of Adams to his own father-in-law’s “unplugged” death from cancer in Britain last year.  Here Keller is wading into much-larger debates about not just how the U.S. apportions its medical dollars but how and when those of us with advanced-stage cancer (and other really bad conditions) should embrace the inevitability of death.  I’m keenly aware of these debates, as they often play out in my own head.  When I learn “my” cancer has metastasized from the bones to the liver or the lungs, how much aggressive treatment will I opt for?  How are we supposed to decide when enough’s enough?

Given that he’s an opinion writer, it’s understandable Keller has an opinion about aggressive end-of-life care Americans (most often with health insurance) receive.  At the same time, even though Adams’ blogs and tweets open her up to unsolicited advice, Keller’s critics are right to point out that someone over seventy refusing invasive medical treatment is in a markedly different position than a forty-something mother with three young children who need her.  Responses from the Metastatic Breast Cancer Network and others familiar with the disease point to the Keller pieces as evidence for how misunderstood metastatic breast cancer is.  There are glimpses in the present of a day when metastatic breast cancer will not mean an almost-certain death sentence; for a small but growing number of us that future is now.  And Lisa Adams and the medical professionals who work with her are hoping to treat her into that future.   

But trying to live into that future becomes even more difficult when others continue to assume you’re dying.  The other Keller, Emma, confessed in her article for the Guardian that following Adams’ tweets became a kind of obsession for her.  “Are her tweets a grim equivalent of deathbed selfies?” Keller wonders out loud.  With her cancer metastasizing further in recent months, Adams blogged and tweeted from the hospital, knocked down by grueling treatments. Keller followed every tweet, learning, for example, how difficult it was for Adams to breathe as her lungs filled with fluid. It sounds awful.  It is awful.  And yet, (too) many of us undergo similar treatments for metastatic breast cancer, hoping that the treatments that make us horribly sick may also allow us to live into the future.  As Adams proclaims in her own response to the Kellers, “I will die.  But that day is not today.  That time is not now.”

Why do we “follow” those who get knocked down by the worst life has to offer?  I know from having my own following of family, friends, and people I’ve never met, one reason people do this is to offer words and other forms of support when we need it.  But Keller proposes there’s more going on than just wanting to offer support.  She herself admits embarrassment over her own feeling of voyeurism with respect to tracking some of Adams’ darkest days.  Given some of Keller’s comments, and the fact that she reported on private correspondence without Adams’ consent, we might well agree with her self -assessment.

But I wonder if calling close tracking of others’ suffering voyeurism adequately captures the reason—beyond the desire to be supportive—that we follow those trying to live amid lousy diagnoses.  I sense there’s more going on than an inability to look away when offered windows into another’s pain.  What I see in those who follow people through Caringbridge or blogs or Twitter is a desire to find clues for how they might respond if cancer (or other awfulness) knocks them to their knees.  We search the lives of others in the eye of the storm for indicators of possible ways through the pain.  And while Lisa Adams has cause not to appreciate the comments of all her followers, I imagine that she, like me, has taken solace in the support of her followers who help her live out loud in the future.  Here’s to hoping for more for you, Lisa, and to all of us living with—and blogging about—metastatic breast cancer.   

 

Live Like We're Dying

 

When I was diagnosed with stage IV cancer, I started preparing to die.  Granted, we should all “live like we’re dying” as singer Kris Allen reminds us, but an aggressive diagnosis ups the urgency on doing just that.  I went back to teaching even though I could barely stand up because I wanted to be in the classroom one last time.  I stopped buying new clothes because I didn’t think I’d have much time to wear them.  I insisted on a summer vacation even though my stamina was shaky because I thought that would be the last one I’d take with the family.  My husband and I secured burial plots.  There didn’t seem to be much time, and I was intentional in my preparations for the end.

Then I went into remission.  Having already resigned from my life, I gradually let myself believe that there could be another semester in the classroom, that if I bought new clothes I’d have some time to wear them, that I might get to experience another family vacation.  What an amazing turn of events.  Thank God, thank the doctors, thank the world for allowing me more time.

Living with gratitude has been at the top of the life agenda these past five years of finding remission, losing it, then finding it again.  The days, months, and years have been accompanied by unfathomable gifts of grace.  At the same time, the space occupied by a stage IV cancer diagnosis, the fickle status of remission, and ongoing oncology visits and chemo treatments is often a discomforting one.  In a recent New York Times op ed piece, Paul Kalanithi, a young resident neurological surgeon recently diagnosed with metastatic lung cancer, tries to figure out how to live in that space.  “The path forward would seem obvious,” he writes, “if only I knew how many months or years I had left.” 

Even though all of us not on our deathbeds can’t know the hour of our death, we all know we will die.  As Kalanithi points out, however, those of us with metastatic cancer know this acutely.  In his own grappling with how to live in the midst of a devastating diagnosis, this budding surgeon has found wisdom in writer Samuel Beckett’s claim, “I can’t go on.  I’ll go on,” statements that capture the competition between resignation and determination, between despair over receiving a premature death sentence and evidence that death is most likely not tomorrow.  How do we “live like we’re dying” in ways that embrace what is while also hoping for more?

I’ve been told that one day a stage IV breast cancer diagnosis will most often not be a death sentence but rather a transition to living with a chronic condition.  So far, I seem to be living in that future.  The “management” of my condition had a rocky start and has endured several bumps along the way, but overall, I’m living very well with a serious, chronic condition.  How awesome.  Yet I hear from the experts that know of no others doing as well as I’m doing with this condition.  How lousy.  

Being an anomaly makes that discomforting space a bit more uncomfortable.  But I go on, trying to lean as fully as possible in to that space, praying that more who share my diagnosis will occupy the space with me, and hoping that I have more days, months, and years, to understand how to respond to “I can’t go on” with “I’ll go on.”

A Tribute to Amma

Last summer, when Amma was diagnosed with advanced stage lung cancer, my elder daughter wrote this tribute:

First there were butterfly crackers and squares of cheese at the kitchen table. Amma spoke Tamil and I didn't understand, but I knew she got out the crackers and that she cut the squares of cheddar for me. I liked adults who did this. I was four, and I liked Amma.

Next there were nightgowns at Christmas – beautiful and lacy – fresh off Amma's sewing machine. “Thank you,” I said when my parents nudged me, and I hugged her, feeling her stiff, silky sari under my little hands. It was so unlike what my mother and aunts wore, but it felt right on her, because she was Amma.

Later, there were dresses and stockings, sewn and knitted, even as I started to notice Amma's bony brown hands and wondered, Should they still be sewing?

Lastly there were stories. “She married for love,” my mother told me. “She married for love, even though she had an arranged marriage like everyone in those days in Sri Lanka. And that husband she married for love left her when the children were young, leaving Amma to raise them on her own. So Amma arranged a marriage for her only daughter, Ann, but Ann came to college in the United States and fell in love too.”

“What next?” I asked my mother, wondering how Ann had wound up married to my mother's brother.

“Amma came to the United States and Ann introduced her to Noel, who took her to the movies and showed her around as no one else had. Over time, Amma came to like Noel, and Ann and Noel got married, and you know the rest. Amma's lived with Ann and Noel for 15 years now.”

There was another story, too. “She hid guns in her house,” my mother told me. “In Sri Lanka, the Tamil were the minority. They were fighting the majority, the Sinhalese. Amma and Ann are Tamil. They were displaced from Sri Lanka because of the fighting, but, while they were there, Amma helped the Tamil.”

The Amma I knew spoke broken English and sniffed people as a way of saying hello. She talked to my Aunt Ann in Tamil, shuffled around in a sari, carried hot sauce to spice up our bland Minnesota food, and cooked amazing Sri Lankan curry. She sewed and knitted and took care of her grandchildren – my cousins. When I was nine, Amma taught me to write my name phonetically in Tamil.

Amma's dying now, and I'm sorry I didn't ask her more about her life. I attended her citizenship ceremony, but I don't know what it was like for her, coming to the United States and experiencing a different culture. She's watched her grandchildren grow into Americans who speak only some Tamil and rarely wear their traditional Sri Lankan clothes. Yet she reminds all of us of the Sri Lankan culture through her traditional cooking, her clothes, and her presence in our lives.

Amma means “mother” in Tamil. She has only two children, yet she's Amma to us all. Mother, grandmother, aunt, immigrant, cook, tailor, teacher of Tamil – and quiet love murmured in her second language. Amma.[i]

We buried Amma this week, in a plot next to our ancestors from Norway and many parts of the U.S.  We dropped roses into the grave after the funeral where my nephew played “Scarborough Fair” on the piano as his tears saturated the keys. 

Amma lived with my brother and sister-in-law for almost sixteen years, from the time my niece was a newborn.  Since last summer she knew she was dying, and she she wanted to die like her mother and grandmother before her—surrounded by family, without fancy treatment. 

She stayed at home until the final days, when she moved into the care of angel hospice attendants.  In her last hours, Amma accepted death with courage and confidence, shepherded into the great beyond by her daughter, her son, their spouses, and her grandchildren.

The funeral and the burial were elegant, faith-filled, loving tributes to Amma, a dear mother to all who knew her.  As we learn to live without her, may Amma also be a mentor to all of us moving toward the day where there will be no more dying, no more crying, only light, only love.    

---

[i] This reflection by Linnea Peterson received the Editor’s Choice Award at Teen Ink and was published in their monthly print magazine.  See the article on the Teen Inkwebsite.

Flowers in February

 I’ve never been a fan of February.  In February in Minnesota, winter shows no signs of letting up.  The few years I lived in Nashville I was shocked when spring started to stir in February.  In Minnesota in February, spring is still years away.

On top of the arctic weather, February ushers in the Christian season of Lent, which as a theologian I strongly approve of.  Theoretically.  It’s important to pare down, do without, take stock of our sin, and reflect on the suffering of Jesus.  But practically speaking, it’s the downer season of the church year.  So when Lent comes in the middle of a Minnesota February, I dream of practicing another faith in another state.

The first February after I was diagnosed with stage IV cancer, Ash Wednesday arrived and I couldn’t muster up the courage to go to church.  The thought of one of our pastors making the sign of the cross on my forehead and saying, “You are dust and to dust you shall return,” was more than I could handle.  Two of my vertebrae had already turned to ashes and I feared the rest of me wasn’t far behind.  I needed no additional reminder that death was near.

That February—a good two months after getting the diagnosis—was also the time when the seriousness of my condition began to sink in.  It was in February I realized that eighty percent of people who have this type of cancer are dead in five years.  It was in February when I entered the classroom again and learned I was too weak to stand up and teach at the same time.  It was in February that the cancer-winter-Lent triple threat became almost more than I could bear.

These days I speak a lot about how to talk to and be with those who are living with cancer and other awful things.  In those presentations people often ask, “What was it that people did for you during the toughest times that you appreciated the most?”  We talk about how many of us say, “Let us know what we can do,” even as we are aware can be extra burden to a person who’s likely overwhelmed already.

During that first awful February, I had no answer to those who asked what they could do for me.  I was deep in the valley of the shadow, and had no idea how to find a way out.  When you’re in the midst of the badness, it’s hard to figure out what others might be able to do for you.

So today, when I talk with others about how to be helpful to those who are suffering, I talk about how appreciative I have been of those who saw a need and filled it.  One of my daughter’s friend’s mothers is a hair stylist, and during the time I was homebound, she came to the house and cut my hair.  Another friend asked for recipes of our regular family dinners so she could bring meals that had an added sense of comfort to them.

On the less-practical-yet-still-wonderful hand, a dear friend of ours who lost his wife to the same cancer I have has created a beautiful tradition in response to my allergic reaction to the second month of the year.  The first day of February he shows up at our house with flowers.  Not just a few small buds, but a dazzling array of Gebera daisies, lilies, and roses.  February’s threat fades in the presence of their beauty.

Last week, as February breathed its last breaths, another gift of flowers arrived, this time from a dear friend in Illinois who has kept a steady stream of gifts coming our way the past four years.  For a good while it was blueberries—preserved, dried, mixed with amaretto, drenched in chocolate.  Lately she’s moved on to sunflowers—this time, with irises.  Once again, the sight and smell of fresh-cut flowers has taken the edge off this time when the valley of the shadow lurks near by.

I’ve said many times before that cancer is no gift.  At the same time, countless gifts of grace have come my way in cancer’s wake.  I—we—are often held up by these signs of grace, hope, and love bestowed on us by those who care for us.  In the longest shortest month of the year, flowers testify that spring is on its way.  In this season of Lent, flowers stand as silent witnesses that Easter is coming.  Winter is fading.  New life is almost here.  Thanks be to God—it’s March.

The More of Tamar

In my last blog post on “Rejoicing While Others Mourn,” I reflected on the rejoicing we did as a family at the end of 2012, knowing that at the same time, there was much mourning by families in so many other places in the world. Shortly after I wrote those words, a time to mourn was thrust into our midst with the sudden death of our 20-year-old neighbor as she finished up her semester of studying abroad in
South America.

As I spent much of the week at the Kaplan’s, helping plan a service that we hoped would be a fitting tribute to Tamar’s too-short life, the impossibility of such a task was an ever-present reality. How could a 90-minute service possibly capture the essence of Tamar? Of course, the question itself was an excruciating one—one that should not have to be asked by parents and siblings of a bright-eyed young woman with her whole life ahead of her. Yet there we were, compiling pictures, stories, readings, and music, all in an attempt to capture the rich life she lived.

At the beginning of the memorial service, I stood in front of the more than six hundred who came together to honor, to grieve, and to support, and tried to put into words what I’d witnessed in the chaotic mixture of love and grief that had filled the days since her death:

How do we capture a life? We turn today to photos of events and relationships; to music that invokes a personality; to readings from favorite books; to reflections from those close to the source; to words from an ancient shared heritage. All in an attempt to capture a life. Her life. The life of Tamar Hanna Kaplan.

Even as these shared memories capture aspects of her life, all of us gathered here know that there’s so much more that can’t be captured by words or notes or pictures. It’s the sudden inaccessibility of the more of Tamar that saturates us with grief today.

At the same time, we gather to honor the more of Tamar that death cannot take away. The photos and readings and recitations and reflections all point to the more of Tamar that refuses to die. All of us here today are witnesses to her dear family and friends that death does not have the last word on Tamar. The love shown here this morning is a sign that the love we have for Tamar and the love she had for her family, her friends, for life and for the world is stronger than any pronouncement of death could ever be.

Let us proceed with our honoring of Tamar and in our insistence that who she was and what she meant to the world lives on.

What came through vividly at the service was the fact that the more of Tamar was so clearly on display in all aspects of her life. She embraced living with an exuberant fierceness. Indeed, we heard that after a semester in Ecuador, she told friends she’d have to create a new bucket list, for she’d crossed off everything she’d hoped to do, from climbing a mountain to repelling down a canyon.

It’s a time to mourn the loss of a lovely daughter, sister, niece, roommate, friend. And in this time of mourning, we hope for a time in the future when laughter and rejoicing will come again, a time that will also include not only the more of Tamar, but the more of us all.

Rejoicing while Others Mourn

This holiday season our nation experienced a jarring juxtaposition I’ve become
more attuned to since living with cancer: the occasion when heartbreak collides
with celebration. The mid-December massacre at Sandy Hook Elementary School
injected shock and grief into a time when tidings of great joy are supposed to rule
the day. How does one rejoice in the midst of others’ anguish?

I admit that more than once during our family celebrations of the past few weeks,
my thoughts gravitated to the stark contrast between my family’s days of laughter
and joy and the families in Newtown crying their way through the holidays, knowing
that their precious little ones would never see another holiday, another new year,
another day of school. There were moments where it felt almost dishonorable to be
rejoicing, knowing so many others—both in Newtown and beyond—were buried in
sadness.

As devastating an event as the Newtown massacre is, it’s far from the only cause
for grief these days. Violence from Syria to North Minneapolis translates into much
holiday mourning for so many. In addition to the violence we inflict on one another,
there’s also the pain that accompanies dreaded diagnoses of cancer, lymphoma,
heart disease, and more. Our family is cognizant of the children and father down
the street who spent Christmas without their mother and wife after she was taken
away by cancer. We mourn with our extended family as a relative with cancer has
almost certainly celebrated her last Christmas in this life. I admit to struggling with
celebrating our own good fortune in light the immense pain, sadness, and grief that
exists both close by and far away.

Back when I was really sick and really sad about my sickness, my husband—who
initially had been completely undone by my stage IV cancer diagnosis—informed
me that he had made a decision: that he was going to try and relish the time he and
I have left rather than spending this time mourning that we likely don’t have much
time left.

While my rationale self understood this to be a sound strategy, my husband’s new
approach didn’t sit well with the rest of me. The gravity of my diagnosis was just
settling in to my brain. I was sad—really sad. And I didn’t want a happy husband
who looked on the bright side. I wanted a husband who joined me in the pit where
sadness and grief dominate.

Since those early days of my diagnosis, I’ve thought much about the challenge of
knowing how to distinguish, as the author of Ecclesiastes says, between the time to
weep and the time to laugh, between the time to mourn and the time to dance. Is
it possible to embrace our times to laugh and dance in a way that doesn’t dishonor
others’ times to weep and mourn?

Twentieth century writer C.S. Lewis struggled much with the interconnection of
rejoicing and mourning. Lewis lost his young wife, Joy, to cancer early in their
marriage. In the movie, Shadowlands, that chronicles their life together, Joy insists
that they talk about her impending death. “The joy now is part of the pain then,” she
tells Lewis. At her gravesite, Lewis returns to Joy’s insight, telling himself, “The pain
now is part of the joy then.”

This explanation of the link between joy and grief is one I keep close at hand, as I
shed tears for the first graders huddled together in that Newtown classroom, as I
grieve for our neighbors aching at the absence of their mom and wife, as I wonder
how many holiday seasons I will get to celebrate. The gift of life is a precious one,
a gift I attempt to rejoice in and treasure, even amidst the stiff awareness of its
fragility. It is a privilege to wake to the sun, to smile at the new year, to cherish the
stark beauty of winter in Minnesota.

My husband seems to know what C.S. Lewis’ wife knew: that loving what is
finite means that the pain and grief are unavoidable. But when we’re given the
opportunity to rejoice, let’s embrace it, even as we are aware that grief in this life is
never far away. And let us also hope, in the words of Revelation 21, for a time when
there will be no more crying, no more dying—only light, only love.

Here’s to savoring the times to rejoice in this new year.

An Advent Cancerversary

As I approach the fourth anniversary of the day I was diagnosed with stage IV breast cancer, I’m caught between conflicting emotions.  On the one hand, I’m extremely grateful to still be around.  Reaching cancerversary #4 is a milestone.  Definitely cause for celebration.  But with the cancer reactivated and recent moves to new medication and more time in the chemo room, the celebratory urge has become more muted.

Since my diagnosis, I’ve struggled with how to have cancer and how to talk about it.  Heading toward the cancerversary, I also struggle with how to mark the anniversary of cancer’s entrance into my life.  On the first cancerversary, a dear friend who lost his wife to the cancer I have brought over champagne.  We toasted the fact that I was living with cancer, that the medication had put me into remission, that our lives were beginning to resemble our lives before cancer.

But a heavy sadness followed quickly on the heels of that first cancerversary.  To be sure: I was thankful I had made it to my first anniversary of living with cancer.  I tried to focus on the positive.  In my interior life, however, the accent of the observance fell on the cancer part of the cancerversary.  The reality of my incurable diagnosis dominated my December.  Yes, I was living with cancer.  But how many more cancerversaries would there be?  

How do we mark an anniversary that signals both life and death?  And how do I live in this space punctuated by both grace and grief?

That my cancerversary falls in Advent offers a possible way forward.  The season of Advent—easy to miss amidst our glitz-saturated shopping season—is a time of waiting in darkness for light.  Advent anticipates the in breaking of Love into our mortal, finite lives.  Advent marks the beginning of a new year, where waiting and uncertainty eventually give way to hope.  Hope that our earthly stories of living into and out of cancerversaries is ultimately part of a much larger story, a story where love is strong as death, where the grace in our days is but a foretaste of the feast to come.

I guess there’s an appropriateness to observing a cancerversary in Advent.  It comes in the darkness and beckons us to watch for in breakings of light.

In Praise of Birthdays

People often ask me how life has changed since being diagnosed with stage IV cancer.  On bad days, the question brings tears to my eyes.  On good days, though, I acknowledge that cancer changes the outlook on many aspects of life.

Take birthdays, for instance.  

This week, I’ll officially enter my upper-40s.  Since the cancer diagnosis, I’ve become more attuned to the many protests we lodge against the aging process.  The popularity of botox injections and coloring hair to hide the gray, to name just two visible protests, suggest we’re not too keen on showing the world we’re actually getting older.  We want to look young, feel young, stay young.  And then birthdays come around once a year and insist that we acknowledge we’re getting older.

Of course there are some real costs to growing old.  My family spent Thanksgiving with my almost-94-year-old Grandmother, who—despite all the health challenges that come with being in your mid-90s—is still going strong.  But getting in and out of chairs is a challenge.  Walking is a challenge.  Hearing others talk in a noisy room is a challenge.  Those challenges add up.  They take their toll.

Being in your upper 40s, however, is significantly different than being in your mid-90s.  And living with cancer in my soon-to-be upper 40s leads me to embrace and celebrate birthdays as never before.  I thank God I’m alive to experience birthday 46.  Praise be that my children are growing older and I’m here to witness it.  Hallelujah that my husband’s turning (a much-younger) 45 next month and I can celebrate with him.  These days my birthday—and the birthday of others I love—is cause for gratitude for the continuing gift of life.  That we’re around to grow older is worth celebrating, at least once a year.

Recently the American Cancer Society launched a campaign called More Birthdays where they ask others to join them in creating a world with less cancer and more birthdays (http://morebirthdays.com).  I’m all in.

So here’s to more birthdays: to mine, to yours, and to everyone else’s.

In Gratitude for This Day

It’s rather remarkable that for everything else it is, Thanksgiving is fundamentally a day set aside for gratitude.  Even though attention is often turned toward the delectable dishes we get to enjoy, it’s nevertheless a day to consider the gifts of grace we enjoy individually and as members of the larger community.
 
But sometimes gratitude can be hard to come by.  Those of us who live face-to-face with an aggressive diagnosis or with other occasions for grief can find it difficult to be full of gratitude, even on an officially sanctioned day to do just that.  Since my own diagnosis almost four years ago, I know how often fear, uncertainty, and grief make insistent pleas for my allegiance, even when I’m “supposed” to be cultivating gratitude.

In the face of fear and uncertainty’s nagging presence, I attempt—with varying degrees of success—to keep them at bay.  While they tempt me with lists of anxious questions (Will still be around next Christmas?  For the girls’ high school  graduations?  Will I make it to 50?), I try and turn my attention elsewhere.  One of the best “elsewhere’s” I’ve found is through the practice of daily morning prayer.  It is the case that I often wake to thoughts of fear; in response, I move through a litany of prayers of gratitude for this day.

Hands open, palms up, I inch toward accepting the reality that I don’t have the answer to the questions fear insists I ask.  Coaxing my thoughts away from the unknown future to the present, I seek out words of gratitude for the health I’m experiencing today; for the blessings right now of a dear husband and two precious daughters whose morning routines echo throughout the house; for the gift of extended family and friends that steady my soul; for a life in the academy that offers constant opportunities to learn and grow.  As the words and images gradually fill my mind, questions posed by fear fade a bit, even if temporarily.

Words of gratitude for the grace in my life also contain an insistence of their own: they insist upon awareness on my part that others for whom I’m grateful have grief, fear, uncertainties of their own.  Being held up for years by the fervent prayers of others in my behalf, gratitude compels me toward doing the same for others.

One of my favorite Thanksgiving traditions is to hear one expression of gratitude from everyone gathered around the table.  From youngest to oldest, naming the gifts of grace in our lives creates a counterforce to those insistent fears and uncertainties that tempt us with questions of the future.  A practice, I’ve learned, that deserves replication more than once a year.

Blessed Days of Gratitude to all.

In Praise of Lament

Before we move into the season of holiday celebrations, I’d like to say a few words in praise of lament.  Lament—the expression of sadness, grief, mourning—is an underrated practice in contemporary life.  In their book about lament called Rachel’s Cry, religion scholars Daniel Migliore and Kathleen Billman suggest that we’re reluctant as a society to publically grieve our failures, limitations, and losses.  The title of their book comes from the biblical book of Jeremiah (31.15) where the prophet talks about Rachel’s inconsolable weeping for her lost children.  In Jewish tradition, Rachel’s grief is revered and respected, while in Christianity her cry receives scant attention.  Perhaps it’s because the Christian story ends with resolution—there’s a resurrection!—that Christians and many in the dominant culture do not give the practice of lament its due.

In the past several years, I’ve gained a healthy respect for lament.  Dealing with cancer or other tough issues in life leads to lament, to a posture of sadness and sorrow.  But that’s a hard sell in America much of the time, land of political slogans like, “Happy days are here again!” and “It’s morning in America.”  Writer Barbara Ehrenreich’s most recent book, Bright Sided: How Positive Thinking is Undermining America, begins with a chapter about her own entrance into “Cancerland” due to a breast cancer diagnosis.  When she found her way to online forums on breast cancer and expressed her lament over her condition—including frustration over the lack of funding for researching breast cancer—other users in these online communities responded with words of caution about Ehrenreich’s negative attitude, telling her they were praying for her so that she might become more positive.

While there is certainly a case to be made against a constant posture of negativity in the face of life’s challenges, I worry that we don’t allow enough space for lament, especially in a more public way.

It seems to me that when religion embodies the best of what it has to offer, it makes room for lament.  Religious traditions have established rituals—from All Saints Day to Yom Kippur to the Day of the Dead—that encourage public displays of lamentation.  It’s also important to acknowledge, though, that holidays and rituals intended to be celebratory like Thanksgiving and Christmas can also be times of quiet (or even not-so-quiet) lament.  When it comes time to celebrate and there has been significant loss since the previous time of celebration, the “most wonderful time of the year” can grow heavy with grief.  Perhaps we can make more space for moments of lament—both public and private—over the next couple months.

Why a post about lament on a blog about grace?  Because lament is a necessary precursor to hope.  To be able to give voice to our deepest sorrows, to attend to thesufferings that ultimately pass none of us by, is to give ourselves permission to lament.  And when such permission is granted, we can begin to take some steps toward healing.  And healing is intimately intertwined with grace.

Here’s to lament, and to the movement toward hope and healing that often follow.

For All the Saints, Past and Present

I’ve been thinking a lot about saints.  All Saints Day (November 1) coincided with one of my classes studying the lives of medieval female saints.  These women were officially recognized by the Roman Catholic Church for their heroic displays of compassion and reports of miracles they performed.

It’s also the case that this past Sunday churches around the world honored the saints who have gone before us.  Remembered especially were those who died in the past year.  At these worship services, bells tolled as each name was read aloud.  It was a time to honor the lives of those who passed away, to remember them in death, and to hope for more for all of us who mourn their passing.

I come from a wing of Christianity that does not share in the ongoing Roman Catholic tradition of granting official saintly status to persons performing miracles or living particularly virtuous lives.  Nevertheless, in remembering those who’ve gone before us, we still use the word saint.

If it is the case that all of us are children of God, then it seems that all of us are born with huge potential for sainthood.  Most of us spend our days far from that ideal; yet it’s true that especially in times of great need, many of us are recipients of grace given by saints in our midst.  I know that since my own cancer diagnosis, life has been full of encounters with saints.

Take, for instance, the friend who started walking with me the fall of 2008 when I was struggling with a broken back.  With the exception of a week here and a week there, she has walked with me, every week, for the past four years.  This friend also has a daughter who learned about saints at her parochial school.  On a test about saints, when asked to name one she wrote, “My Mother,” and got the answer wrong.

Even though this friend doesn’t fit the official definition of a saint, I think the teacher may have passed up a valuable teaching moment. In covering the facts of sainthood, I imagine the teacher talked of saints as those whose extravagant love, service, healing, and sacrifice were officially recognized by the church. But a truth-beyond-the-facts presented itself in the “My Mother” answer, where a child acknowledged she believes her mother embodies those same virtues.  Why not acknowledge—with the daughter—that there are saints among us?

Since my diagnosis, my walking friend and many, many others have shown themselves to be saints through their love, care, and concern.  So in this season of saints, in addition to honoring and remembering all the saints who’ve gone before us, I also want to honor the saints among us:

to the saints who brought us flowers during the dark days of the illness;
to the saints who delivered homemade meals to our doorsteps when we couldn’t make meals for ourselves;
to the saints who sent cards with words of comfort;
to the saints who make time in the hospital, the clinic, the radiation center, the chemo rooms less frightening;
to the saints who shoveled our driveway when our life was in shambles;
to the saints who created a quilt that keeps us warm every night;
to the saints to who sent us blueberries in December, jewelry in February, CDs in the springtime;
to the saints who came to visit from far away to dull the sharp edges of despair;
to the saints who continue this journey with us.

Know that in this season of remembering saints, I’m ringing a bell for each one of you.

Bad to the Bone: A New Slogan for Breast Cancer Awareness Month

October is officially dedicated to raising awareness of breast cancer.  Bright pink athletic gear, pink-tinted yogurt containers, and pink-lit buildings broadcast support for those living with breast cancer and those attempting to cure it.  As with any good campaign, there are also catchy slogans accompanying the pinking of our surroundings.  “Big or Small, Save Them All” is just one of the ditties designed to get us thinking about a disease that killed an estimated 40,000 persons last year.

Since being diagnosed with breast cancer almost four years ago, I’ve had a complicated relationship with popular ways of framing of the fight against breast cancer.  Leaving the critiques of the movement’s pink hew to others* I’m interested in how raising awareness has only just started to include information about the most aggressive forms of breast cancer and the stories that accompany them.

By now most of us know something about what I call the breast cancer drill: You find a lump in your breast; you get a mammogram, you’re told the awful news of having breast cancer; you suffer through the trauma of surgery, chemo, and radiation.  Then best case scenario you move into remission. 

This familiarity with the breast cancer drill was at the heart of my disorientation with my own breast cancer diagnosis.  My back broke—not once, but twice—and a biopsy on my back discovered I had . . . stage IV breast cancer? 

Come again?

I’m a woman with breast cancer.  The problem is that my path to diagnosis and treatment bears little resemblance to the breast cancer drill many of us know so well.  I found no lump; the mammograms I had revealed no tumor; I had no breast surgery, no chemo that led to loss of hair.  What does it mean to have breast cancer in a way that differs so drastically from the dominant breast cancer narrative?

Because the cancer in my breast had metasticized to the bones, “saving the breasts (big or small)” was initially a non-issue.  The disinterest in the cancer in my breast was unnerving for all of us well acquainted with the drill.  I was put on the anti-estrogen drug.  I began two years of monthly treatments of the osteoporosis drug.  I began radiation—not on the breast but on my spine, hip, and pelvis, all places to which the cancer had metasticized.  I had surgery on my back to repair the vertebra destroyed by the cancer.

All the treatment I underwent was for the express purpose of stopping the cancer from destroying more of my bones (or moving into my organs).  And thus far I’ve been incredibly fortunate: the multiple medical interventions worked as they ideally are supposed to and I’ve been in remission for much of the past three years.

But there’s more to this story.  There is no cure for metastatic breast cancer.  Oncologists hope that one day they’ll be able to treat metastatic breast cancer as a chronic condition, like diabetes.  But today the statistics are still grim: according to the May 2012 issue of the journal Nature, even though there’s been “vast improvement” on survival rates for non-metastatic (“local”) breast cancers, the journal reports that survival rates for metastatic breast cancer patients remain “dismal,” with only 22% living more than ten years with the disease.

This is one of the first Octobers when I’ve seen breast cancer awareness reach beyond the more familiar stories (which are, of course, very important) to the much-less-familiar stories of metastatic breast cancer.  At least two local news stations have interviewed women with metastatic breast cancer this month.  In one interview, the women noted how little connection they see between the pink-themed focus on breast cancer and their own journey with the disease. 

I can relate.  The pink makes me think about breasts.  Those of us with metastatic breast cancer are often thinking about our bones (and our organs) rather than our breasts.  Metastatic cancer is “Bad to the Bone.”  In the name of raising more awareness of all forms of breast cancer, perhaps it’s time to add a few new slogans to the agenda.  Then we might see that saving bones is part of the quest to contain breast cancer, too.     

*to cite just two examples of critiques of the pinking of breast cancer awareness, see Barbara Ehrenreich’s searing “Welcome to Cancerland,” or  Hamline University alum and 29-year-old cancer “thriver” Erika Lade’s Huffington Post blog, “Breast CancerAwareness: Why does my Cancer Have a Logo?”