Originally posted on Everyday Matters:

Image by Sean McCabe in AARP

Image by Sean McCabe in AARP

Papers across the world this morning are announcing the death of 83-year-old surgeon Sherwin B. Nuland, perhaps most well-known for his National Book Award-winning “How We Die: Reflections on Life’s Final Chapter.”

On a personal note, Sherwin Nuland was known affectionately as Shep by my family.  He and my father were young roommates – physicians-in-training in London in the late 1950s.

Last spring, my father and I had the chance to see Shep in New Haven, CT, where he was still very active at the Yale School of Medicine.   He was everything that all of the obituaries say about him today – thoughtful, intellectual, capable, dignified, humble, a mensch.  Time passed quickly, and a few days later, we exchanged messages by email.

Having learned of my “Year to Live” project, he wrote that, in thinking about mortality, “I seem always to get…

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large__4420314547This beautiful piece about an ailing doctor who makes his own coffin appeared in the New York Times over the weekend.

Once again I was struck by the realization that honest reflection on our own death is more about living than about dying.

I wanted to share my new blog with you as well.  You are always welcome to explore!

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A couple of years ago I blogged regularly about my Year to Live project.   The 365 day experiment profoundly changed the way I think about life, even to this day.

Every once in a while, something fantastic and year-to-live-y grabs my attention and makes me want to jump up and share it with you.

I promise this video about 17-year-old Zach Sobiech’s last days will be worth the 20 minutes it takes to watch it.  Truly – grab someone you love and a box of tissues and just do it.  Because, as Zach says:

You don’t have to find out you’re dying to start living.

Zach died peacefully yesterday at 18, surrounded by his loved ones at home.

To the degree we can embrace our mortality rather than deny it, we can live that much more completely and joyfully.

- Dean Ornish, MD

Some time has passed since my Year to Live project came to an end, but my interest in reflecting on death as a way of truly living continues on.  I’m happy to recommend a book called Enjoy Every Sandwich to anyone else who isn’t afraid of the conversation!

A quick read, Enjoy Every Sandwich is a spiritual memoir written by Lee Lipsenthal, a young physician who learns he is dying of esophageal cancer.  It reads a lot like Tuesdays With Morrie, flowing with insight and the beauty of human connection.

Here are my main take-aways:

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The amazing baby shower!

Hello, dear readers of Last Year to Live.

This month marks a year since my one year to live project came to an end.  And a year since my close childhood friend Marisa died of metastatic breast cancer.

I continue to be grateful for everyone who came along with me on this writing journey and for all of the comments – some on the blog, but many more off-line – that kept me inspired throughout that year.  The number one lesson I learned is that engaging in the topic of death unequivocally made me live life more fully.

I have some good news to share!  I’ve just come back from Marisa’s brother & sister-in-law’s baby shower.  Marisa would have been an amazing aunt to this little one, and I like to imagine her smiling at all of us.   The holidays will be a little easier this year.

On my end, because I’ve been missing the brightness of life lived through the lens of writing, I’ve launched a new blog called Beyond Siri’s Grasp.  I hope you’ll sign up for new posts by email or RSS on the top left side of the new blog.  (Unfortunately I can’t transfer your email over automatically, but if you’d prefer, send me an okay and I’ll enter it by hand for you.)

I look forward to seeing you there!

(If you are coming to this Year to Live blog for the first time, consider reading through it in chronological order, starting with the post on February 10, 2010.)

Thank you for reading!

All my best,

Barbara

Last month my year to live journey came to an end.

For nearly one year, a small group of us met each month at the Village Zendo in New York to discuss mortality and to think constructively about how we might go about living our lives if we truly had just one year to live.

I documented my thoughts throughout the year in this blog.  What I did not write about was the all-too-real end-of-life journey of my earliest childhood friend Marisa, who was courageously facing metastatic cancer while I went about my hypothetical journey.

On the night of November 17, our class did a “dissolution of the body” meditation — a guided exercise used by Tibetan lamas to prepare people for the journey of death and beyond.   I’d be pretty hard-pressed to tell you what it was like because right at the point when our teacher said, “Resist the temptation to fall asleep,” I fell promptly asleep.

But that’s not the important thing.  Five days later, Marisa passed away.

In my grayest moments, I’ve dismissed my own year to live process as frivolous because I am, as much as any of us can claim, healthy.

Then I remember the last time I visited Marisa.  We laughed about the silly details of our childhoods together, like how we let our brothers con us into racing their dirt bikes off a ramp, flying through the air over us (a la Evel Knievel) while we lay completely flat on the asphalt.  And the great trips our families took together involving rented beach shacks and RV trailers.

“It’s hard to come up with a memory from childhood that doesn’t include you guys,” she smiled.

With a lot of hard-earned wisdom under her belt, Marisa posted on Facebook in June: “9 years ago I was diagnosed with breast cancer.  I’ve seen my share of ups and downs over the years but I seem to only really remember the ups.  The downs will come and go – no reason to get stuck on them.  But the ups, those are the memories you keep forever.”

Of course, “forever” is a relative term.  Marisa’s ups are now my ups.  And maybe someday my own children will remember parts of the stories and her ups will be theirs.  But eventually it all fades into some ethereal mystery.

Still, I like her view of things — if we can put the things we’re grateful for into some kind of internal treasure box to look back upon sometimes (all things in moderation, of course), we’d probably be doing ourselves a world of good.

I can imagine that burying a child of any age has to be the most painful act of all.  I’ve heard many people question faith and god in these circumstances.  Allow me to share a passage from one of the best books on dying I read all year (and believe me, I read my fair share of them!).

“Here If You Need Me” by Kate Braestrup is the autobiography of the chaplain for the Maine game warden who herself was widowed with four young children when her husband – a state trooper – was killed in a car accident.  I’ve read and re-read this passage many times:

My children asked me, “Why did Dad die?”

I told them, “It was an accident.  There are small accidents, like knocking over your milk at the dinner table.  And there are large accidents, like the one your dad was in.  No one meant it to happen.  It just happened.  And his body was too badly damaged in the accident for his soul to stay in it anymore, and so he died.

“God does not spill milk.  God did not bash the truck into your father’s car.  Nowhere in the scripture does it say, ‘God is car accident’ or ‘God is death.’  God is justice and kindness, mercy, and always – always – love.  So if you want to know where God is in this or in anything, look for love.”

I’ve been looking for love everywhere.  I saw it in my fellow classmates and our teachers at the Zendo this year.  I saw it in heartfelt comments on this blog.   I saw it played out in my own family.  I saw it in the acts of complete strangers on our trip overseas.  I saw it in the hugs and stories shared at Marisa’s funeral.

I’ve got a year’s worth of learnings, sayings and little nuggets I could end with.  I think, though, I’m going to leave it with this.  If you find wisdom in it, please use it to inform your own journey.  And please keep me posted!

Every day in Zen temples around the world, the following verse marks the close of the day’s ceremonies:

Let me respectfully remind you, life and death are of supreme importance.  Time passes swiftly and opportunity is lost.  Each of us must strive to awaken.  Awaken!  Take heed, do not squander your lives.

May our paths cross again soon,

Barbara

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photo by D Sharon Pruitt

Friends,

Unbelievably, I’ve arrived at the end of the Year to Live project.  While I had originally thought our final class would take place in January 2011 – 364 days from when we started — it will draw to a close this Wednesday evening instead.

(Our teachers harbored no secret agenda in ending the class early.  No not-too-subtle message about the unpredictability of it all.  It was truly just a scheduling issue.)

I’ve learned from others that the “dissolution of the body” meditation which symbolically ends the class is a powerful one.  Frankly, I’m scared of it.  One person I know who experienced it said that this exercise is so visceral that he actually lost control of some, ah, bodily function when he did it.  So – yes – there are many reasons to be resisting all of this!

Someone asked our teacher, a hospice chaplain, about the main regrets people share on their death beds.  Number one, our teacher answered, is that they wish they’d said “I love you” more often.  Number two is that they wish they’d taken more vacation.  That’s it.  We’re pretty simple creatures when it comes right down to it.

In homage to love and appreciation of the journey, I’d like to share a passage I’ve been thinking about over and over again for the past several weeks.  It’s from the book “About Alice” by Calvin Trillin honoring his late wife:

Once, for the program at the Hole in the Wall Gang Camp [a camp for children with cancer and blood diseases] gala, some volunteer counselors contributed short passages about their experiences at camp, and Alice wrote about one of the campers, a sunny little girl she called L.

At camp, Alice had a tendency to gravitate toward the child who needed the most help, and L. was one of those.

“Last summer, the camper I got closest to, L., was a magical child who was severely disabled,” Alice wrote.  “She had two genetic diseases, one which kept her from growing and one which kept her from digesting any food.  She had to be fed through a tube at night and she had so much difficulty walking that I drove her around in a golf cart a lot.  We both liked that.”

“One day, when we were playing duck-duck-goose, I was sitting behind her and she asked me to hold her mail for her while she took her turn to be chased around the circle.  It took her a while to make the circuit, and I had time to see that on top of the pile was a note from her mom.  Then I did something truly awful, which I’m reluctant now to reveal.  I decided to read the note.  I simply had to know what this child’s parents could have done to make her so spectacular, to make her the most optimistic, most enthusiastic, most hopeful human being I had ever encountered.”

“I snuck a quick look at the note, and my eyes fell on the sentence: ‘If God had given us all of the children in the world to choose from, L., we would only have chosen you.’”

“Before L. got back to her place in the circle, I showed the note to Bud, who was sitting next to me. ‘ Quick. Read this,’ I whispered.  ‘It’s the secret of life.’”

Let me thank you all, once again, for sticking with me throughout!

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One of the things that makes Halloween and the Day of the Dead interesting in my family is the skeleton we’ve had in the closet for 3 generations running.

While this may sound sinister or downright peculiar, let me assure you that Felix, as he’s known, holds a cherished position in our household.  For starters, he’s a silent but reliable teacher and a master at imparting lessons of impermanence.

Here’s a short essay I wrote about this, which was published on Salon.com today.

http://www.salon.com/life/feature/2010/10/30/skeleton_in_my_family

Some of the Salon readers suggest we should give him a proper burial.  Others think that as long as he fulfills the role of a teacher, it’s OK to keep him above ground.  I’d love to hear your thoughts…

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Atul Gawande

Two weeks ago some of my closest friends from college were in New York for our annual gathering, a tradition we began nine years earlier.  The amazing thing about my friends is that they’re game for almost anything, which is how we found ourselves on a beautiful Saturday morning inside a massive auditorium listening to a lecture entitled “How to Live When You Have to Die” by the physician and author Atul Gawande.

Atul Gawande is the new American “Dr. Death.”  I mean that in the most optimistic of ways.  While Jack Kevorkian made headlines for championing a terminal patient’s right to die via physician-assisted suicide, Gawande is “instinctively against” Oregon and Washington’s assisted suicide laws, which he fears may lead to a mistrust of doctors.  Gawande’s focus is on exploring end-of-life care, including ways in which terminally ill and their families come to grips with death .

He opened the lecture by talking about the phone call he received from his wife’s cousin, whose 12-year-old daughter had Hodgkin’s lymphoma, a disease that is 85% treatable.    Unfortunately, the treatments weren’t working for this little girl, who was emaciated and so ill that she hadn’t been able to see friends for over a year.  The cousin wanted to know if they should try the last recourse of treatment — a bone marrow transplant that had a slim margin of success.

Atul Gawande found himself “utterly useless” in this conversation.  Years of medical training had taught him to say that there’s always something more we can do.  But how to weigh one more radical treatment against the suffering of a loved one?

That question lead him on a journey.  If you get the chance you should read his latest piece in the New Yorker:   “Letting Go: What should medicine do when it can’t save your life?”

The real take-away from Gawande’s latest work is this — patients benefit most by having someone to talk to about death.  In his article he states that “… people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.”

Above all, there are 4 simple questions to talk through with those who are ill:

1)    What do you understand to be your prognosis?

2)    What fears do you have about what’s to come?

3)   What are your goals as time grows shorter?

4)    How much suffering are you willing to go through for the possible trade-off of added time?

One person he talked to said her ailing father thought through these questions and concluded that he’d still want to live if he could eat ice cream and watch football on TV. It was the benchmark she used in deciding upon all medical interventions until the day his condition no longer allowed for these simple pleasures.   Gawande reports that a conversation based on these four questions with his own father was “incredibly hard but completely transformational.”

Of course, the premise of the Year to Live class I’ve been taking is that it’s never too early to have these conversations about death with ourselves and with our loved ones.  Some day we won’t get life’s winning lottery ticket, as Gawande would say.  And having thought about death would hopefully have meant that we used the time we had being as committed to life as possible.

So what happened to the 12-year-old daughter in Gawande’s family?

Her family took her home from the hospital and stopped all but palliative treatments.  Ten days later he got the email sent to close relatives and friends saying that she had passed away.

All is well,” the message read.  “Our home is full of peace.”

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For a recent Year to Live class, we were asked to bring five objects that represent the most meaningful aspects of our lives.  The task was to place these 5 things on a small altar in the classroom, where we could then explain them to our classmates.  (There’s a powerful twist to this exercise, but I’ll get to that later.)

In the days before our class, I found myself going through all of my possessions, clutching photos of friends and places, wishing the teacher had asked for 10 things instead of 5.  But being the ever-dutiful student, here’s what I came up with:

  • A photograph of my family — including my children, my parents, an aunt who is like a second mother to me, and my nieces and nephews.  It had been a perfect evening by the bay.  Everyone was healthy, and we were almost giddy about being together.
  • A photograph taken by my father-in-law of a lone apple tree which stands on their windswept property in upstate NY.  I love this gnarled tree.  The trunk is absolutely hollow, yet it supports the most incredible foliage and fruit season after season.  The photo represents a profound appreciation of nature, as well as resilience and abundance.
  • A piece of drift wood taken from the enormous message Dave left for me on the beach one morning years ago in drift wood, sea shells and pine cones:  “Barbara, will you marry me?”
  • A small clay Buddha made by one of my sons while we were on a family retreat at the Insight Meditation Society.  It symbolizes the gifts of contemplation, compassion and community that I’ve found through studying mindfulness.
  • A necklace made by desert women in North Africa.  It was given to me by a human rights activist I worked with who became a true friend.  A year ago she nearly died on a hunger strike, and I learned much about what it means to take a stand for what you believe in.  The necklace represents my work, which is fulfilling and gratifying (most of the time!) because of people like her.

On the evening of our class, we set up our small altars side by side.  I was blown away by the power of what everyone brought:  photos, baby clothing, journals, sheets of music, cherished jewelry, an onion, a note from a lover before she died.  All of it symbolizing the significance of our lives and the broader web that links us with the people and places around us.

Then came the twist. . . we were going to do a walking meditation around all of the altars, and each time we walked around we were to take one of someone else’s objects and put it under a cloth on the adjacent table.

Wait – did I hear that right?  We were going to take one of these life treasures away from someone?  And others were going to take away mine?  Yes – that was the exercise.

I wasn’t sure I was going to make it through.  The objects themselves I can live without.  But what they represent, I cannot.  If the very idea of the exercise was that painful to me, how could I inflict it on others by gathering up their things?

So we began the walking.  And the taking.  And the being taken from.  First the photograph of the apple tree vanished.  On the next rotation, the drift wood was gone, then the necklace, then the Buddha.  I also picked up objects from others and placed them as carefully as I could under the cloth.  I could hear some of my classmates quieting tears.  Mainly, I was focused on the photo of my family.  I nearly pleaded, “OK – I get the point.  Let’s just stop the whole thing here.”  In the next rotation, the picture of my family was gone.  Then the very cloth that represented the altar was gone.  I was gone.

There may be an element of  ‘you just had to be there’ to this.  But I can tell you that the experience felt like death itself.  It shook me to my core, revealed all of my attachments, and demonstrated viscerally the lesson of impermanence.  Up until that moment, I thought I was handling all of this study of death pretty well.  Now I see that I had been holding it at arm’s length, dealing with it intellectually and in words.

There’s been much for me to reflect on as a result of that class, and the lessons don’t come easily to conclusion.  But in the meditation that immediately followed the disappearance of our altars, I felt inexplicably hopeful and light.  It was as if a source of great worry had been lifted.   I wasn’t at all sure what it meant, but it seemed like a net good and I’m going to go with that.

I’d love to hear what 5 objects are most meaningful to you…

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