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.    

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[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.