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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

This week I bring you two heads-up pennies that I gathered along my way.

  • The first is a letter about an encounter with a woman who was “too mean to die”  from my friend Kathleen,  a volunteer hospice worker.    It’s a great reminder to begin again when life gets the better of us.
  • Second, a poem by Mary Oliver that we read  in our Year to Live class .  I’m told that Mary Oliver lives on the tip of Cape Cod and draws inspiration from long walks along the beaches and salt ponds.

Wishing you time to muse this week as you stroll along under the open sky!

Letter from Kathleen

Your recent hitting the restart button post and the premise of one year left to live reminded me of a hospice patient I once had.

When the volunteer coordinator called me, she said she had a woman who was “too mean to die” and that she trusted that I was the right person for her.  (They used to send me all the “hardest” and “most unusual” cases!)

With that introduction, I left with an open heart and open mind, intending not to judge, but send loving energy to her.

She was the most miserable, unlikable, complaining, woman I have met!  She was staying with her granddaughter, who had escaped to Florida for a break, leaving behind her husband who needed to study for an exam.  She made his life pure hell!

She complained that the hangers in her closet were not hers and that other people had taken hers.  She wanted me to rearrange the furniture in her bedroom. When I told her that I was the volunteer and didn’t move furniture around, she demanded to know why I had come if I was going to be worthless!

When the nurse came, the woman went into the bathroom and wouldn’t come out.  When she finally did, the nurse examined her, changed the bandages on her legs, with the woman telling her how to do it all along the way.

When the nurse left, she cut off the bandages and called for the grandson to re-do them another way.  She complained about how he did it to!

This kind of thing went on and on all day… but I kept to my plan of open heart/open mind.

At the end of the day, I was putting her into her bed, and she looked up at me and told me this:  

Every day I go into the bathroom and look in the mirror and promise myself that I will be nice to everyone today, and I try very hard….but I find myself not being nice…..so I go back into the bathroom and look again into the mirror and start again! and again, and again…

My eyes filled with tears and I embraced her and told her that God knew what was in her heart and that was all that counted.

She was not too mean to die, she was refusing to die until she could be nice for one full day.

Talk about restarting!

When Death Comes

Mary Oliver

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;
when death comes
like the measles-pox;

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth
tending as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.

When it is over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.

I don’t want to end up simply having visited this world.

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286 Days Remain

“How was Turkey?” kind friends and family have been asking.

After being home for a couple of days, the only way I can think to describe it is as Lakshman says of his life in the Ramayana,  “It’s like something I dreamed once, long ago, far away.”

The trip had many magical qualities to it.  And the honest to goodness truth is, I didn’t think too much about my Year to Live project while we were away.  (Other than noticing how much I cling to the idea that my life will be a long one when I inadvertently say things like:  “We’ll have to come back here someday!”)

Here are just a few of the memories.  But if you promise to come over, we’ll serve tea in clear glasses, show you the whole album, and send you away with a cobalt blue charm to ward off the evil eye…

Speaking of eyes, we heard that many stray cats in Istanbul have one blue eye and one amber eye.  It was our mission to find one!  Trouble is, most just wouldn’t give us the time of day.  (There’s a pic of one on this site.)

Hiking the Pigeon Valley in Cappadocia, Central Turkey. Normally I’m not a fan of buying native garb. But, it was snowing that morning, and — having foolishly believed Weather.com — had only packed light jackets.

One morning in Göreme we woke at sunrise to the strangest sound that went something like this: Fffwwwuuup, Fffwwwuuup.  In the field across the road, 40 hot-air balloons were taking off.  (The noises were the torches inflating the balloons.)

Dave had this crazy idea that we’d take an 18-hour train ride from Central Turkey to Istanbul (rather than the 1.5 hour flight or the 10-hour bus that cost the same amount).   It didn’t sound like fun to me.

I was totally wrong.  It ranks as the boys’ top memory of the trip.  And we got to arrive in Istanbul as the sun rose, just as the Orient Express did in years long gone.

People in Turkey absolutely adore children.  On a crowded tram, a 70-year old man rearranged Evan’s hair repeatedly for 5 minutes.  (There wasn’t even a hint of creepiness.)  Strangers walked up to them and pinched their cheeks.

Here, on an elevator, some soccer fans grabbed the kids into a friendly team embrace while their friends took pics on their cell phones.

It was like traveling with mini rock stars.  Wow, did they love the attention.

Orhan Pamuk, Turkey’s famed Nobel Prize winning author, writes often about hüzün – a state of melancholy.  He opened his book “Istanbul” with a quote by Ahmet Rasim, “The beauty of a landscape resides in its melancholy.”

Indeed, Istanbul – the crossroads of Asia and Europe – is a city of neglected villas, ancient Byzantine and Ottoman glories, and the ever-changing waters of the Bosphorus, where we saw nearly fifty dolphins swimming at dusk.

There is a certain kind of yearning here, even as the city becomes “modern” at a dizzying speed.

I got to fulfill my long-time dream of seeing the Whirling Dervishes of Mevlevi!

The “turn” originated with the Sufi mystic Rumi, who (according to the fascinating poet/translator Coleman Barks) while walking through the gold-smithing section of Konya heard beautiful music in their hammering:

“He began turning in harmony with it, an ecstatic dance of surrender and yet with great centered discipline.   He arrived at a place where ego dissolves and a resonance with universal soul comes in.”

The boys fidgeted endlessly and then at least one of them fell asleep.  But I was in heaven.  And, so, I leave you for now with my favorite passage from Rumi about the Turn:

Keep walking, though there’s no place to get to.

Don’t try to see through the distances.

That’s not for human beings.  Move within,

but don’t move the way fear makes you move.

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"Early Morning" by CW Ye

300 Days Remain

One of the most common reactions I hear from people taking in the concept of the Year to Live project goes something like this:

“Before I die, I really want to walk on the Great Wall of China.”  Or see the Grand Canyon, go on a safari, explore Angkor Wat, hike the Pacific Crest Trail.

It seems that children also put travel among the top priorities for their lives.  The Make-A-Wish Foundation, for example, grants requests from young people with life-threatening illnesses.  Many of these heartfelt wishes are for cruises, visits to Disney, and seeing the Eiffel Tower.

There’s something so vital to travel.  It’s almost antithetical to death.

While I flat out refuse to buy the ever-popular book  “1,000 Places to See Before You Die”, the very concept of which seems – well – a little greedy to me,  I must admit that I too am smitten by travel.

I feel like I’ve been lucky in this regard.  Early in my young adulthood, I was overcome by a desire to see the world outside of the New Jersey suburb where I grew up.  Without hardly a second thought, I applied for a summer job as a “house parent” in a home for teenage foster kids in Appalachia.  (I still marvel at their judgment/desperation in hiring an inexperienced  19-year old Yankee to manage a high-risk group of kids who had been hardened by years of abuse and humiliation.)

One “break” from the action which I always looked forward to during that Kentucky summer was accompanying the librarian of the BookMobile on her excursions into the heart of Appalachia.  In her beat-up old 4-wheel drive, she’d navigate dirt roads which were sometimes barely passable from the landslides caused by strip-mining, all the while compulsively eating Snickers (donated by the crate-load to the foster system).   With a heart full of compassion, she’d carefully explain the situation of each impoverished family we’d be visiting.  It seemed to me that delivering books was a convenient excuse for checking in with people to make sure no one was starving to death.

After that experience I ventured a little farther, spending a year studying anthropology in California, where I didn’t know a soul.  And then I crossed the Pacific and lived in Japan for a couple of years, choosing to teach English over accepting a coveted slot in the management training program of an insurance company back home.   (Some of my elders were none too pleased!)

By the time I was in my mid-twenties, I was so hopelessly addicted to travel that I vowed to combine it with my ideals – vaguely defined as anti-poverty and women’s rights – and somehow cobble together a career out of it.   As part of my jobs, I traveled to Bangladesh, Thailand, Kenya, Egypt, Israel, Palestine, Peru.  I loved being invited into the lives of locals, thinking about how we were different on the surface, but so fundamentally the same inside.

Now that I have a family, my adventures have mostly been closer to home.   Four hours in a car gets us to the beauty of New England.   Well-planned stay-cations visiting with my brothers and their families are fine by me.

Last fall, my husband asked me where I might like to go with the kids during our long spring break.  He said I’d get 51% of the vote.

I started thinking about all that I’d want to show the kids if this were to be my last year.  What would I want to impart?  What culture would I want them to soak in?  Where would my heart sing?

Tomorrow we leave for Turkey  — land of my favorite poet, Rumi.  The crossroads of Europe and Asia.  Home of baklavah.  Muezzin calling the early morning prayers.  Multitudes of opportunities to talk about how much better the world is when we don’t see things as Us vs. Them.

For now, as we leave our laptops behind, I wish you happy spring and joyous holidays.  No matter how far or near you venture, travel well.

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If you can spare 10 minutes, take a look at this beautiful video about the organization co-founded by one of my Year to Live teachers, Robert Chodo Campbell.  (He and Sensei Barbara Joshin O’Hara of the Village Zendo facilitate our monthly sessions.)

To Rose, the woman who allowed the filmmakers to capture her final days, three bows.

Simply click on this link:

NEW YORK ZEN CENTER FOR CONTEMPLATIVE CARE

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My friend Ibrahima does not know which day or year he was born.

He came into this world in Guinea, West Africa, where his native language Mandinko had no written form until very recently.  To obtain a passport, he had to approximate how old he was and select a day that felt right to him.  (Ibrahima’s amazing account is here.)

I find his story so refreshing.  When he first told me, we were sitting in the playground on a warm afternoon watching our children run and climb.  It got me wondering how artificial dates can be and how much we allow them to rule our lives, right from the start.

Try as we may, it’s hard not to attach meaning to holidays like New Years Eve and Mother’s Day.  The list goes on:  the year we lost our first tooth, the year we graduated from college, the year we will retire.   We even vaguely anticipate how long we’ll live judging from the life expectancy statistics of men and women in our country.

All of these dates contribute to a feeling that we’re almost entitled to something, to the idea that life will work out just so, in an organized manner and time-frame.

Today is my birthday and I’m feeling a sense of rawness.  I’m amazed by the avocado plant flourishing in our window which we have tended since it was a pit.   I’m in awe of the parent in my son’s first grade class who taught the kids how to bind little hard cover books, complete with pop ups and secret compartments.  I’m grateful that a little bird picked our ledge on which to build her nest, of all the ledges in New York City that she had to choose from.

That’s not to say that there’s nothing special about being awakened by my three serenading guys dressed in crazy birthday hats.  Or that I’m not looking forward to a birthday date with Dave.

But I’m pretty convinced that there’s a simple beauty in every day.  And it’s ours for the noticing.

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317 Days Remain

These are the words that we have printed out, hung by our desks, posted on sticky notes on our fridges.

Thanks to everyone who sent me quotes, poems and sayings that keep them going and provide inspiration in their lives.

If you have another one, please add it to the comment area!

Success by Ralph Waldo Emerson

To laugh often and much;

To win the respect of intelligent people and affection of children;

To earn the appreciation of honest critics and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived.

This is to have succeeded.

If the only prayer you ever say in your whole life is ‘thank you,’ that would suffice.

– Meister Eckhart

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.

– Eleanor Roosevelt

The secret to life is to die before you die and find there’s nothing to be afraid of.

– Eckhart Tolle

For death is no more than a turning of us over from time to eternity.

– William Penn

Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic? Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard? No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish.

– Robert Brault

The fear of death follows from the fear of life.  A man who lives fully is prepared to die at any time

– Mark Twain

I swear to you there are divine things more beautiful than words can tell.

– Walt Whitman

There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle.

–  Albert Einstein

If you judge people, you have no time to love.

– Mother Teresa

Yesterday is history.  Tomorrow is a mystery.  And today?  Today is a gift.  That’s why we call it the present.

– Babatunde Olatunji

I would be most content if my children grew up to be the kind of people who think decorating consists mostly of building enough bookshelves.

– Anna Quindlen

Time is a great teacher, but unfortunately it kills all its pupils.

-Louis Hector Berlioz

Do something that nobody else has done, something that will dazzle the world.  Show that God’s creative principle works in you.

-Yogananda

Just to be is a blessing. Just to live is holy.

– Abraham Heschel

There is no way to happiness, happiness is the way.

– Buddha

A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes.

– Hugh Downs

How could youths better learn to live than by at once trying the experiment of living?
– Henry David Thoreau

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321 Days Remain

Like unexpected money found in last season’s coat pocket, I discovered a scrap of paper in my wallet this morning.

It’s a quote I must have torn out of a magazine and tucked away for a rainy day, by Charlotte Joko Beck.

On this gray day that’s neither winter nor spring, when my mood seems to match the weather, I’m glad to have found it.

Life always gives us exactly the teacher we need at every moment.

This includes

every mosquito,

every misfortune,

every red light,

every traffic jam,

every obnoxious supervisor (or employee),

every illness,

every loss,

every moment of joy or depression,

every addiction,

every piece of garbage,

every breath.

This gets me thinking of my wise friend Dana.  When I start complaining about various and sundry things/situations/people in life, she likes to say, “What’s the gift in this?

The question always takes me by surprise, followed quickly by irritation at the seeming Pollyanna-ness of articulating an answer.

But sometimes I can catch the shadow of a teacher and a vague feeling of hopefulness.

The big question for the Last Year to Live is, of course, can I learn to accept even mortality itself as a teacher?

And how to do that?

Only by parceling down situations into minuscule moments, and then even further.  Breath by breath.  Atom by atom.

By the way, if you don’t know Charlotte Joko Beck, I’m very pleased to be making the introduction!   It was only around age 40 that this mom of four — newly separated from her husband and working as a teacher and a secretary — began meditating.

She went on to write  one of the most engaging books I’ve read about living fully in the face of the pesky challenges of daily living — relationships, work, fear, ambition, and suffering.

I love the interaction she had with an interviewer for this article:

Donna Rockwell: I read your books.

Charlotte Joko Beck: Oh you read. Well, give up reading, O.K.?

Donna Rockwell: Give up reading your books?

Charlotte Joko Beck: Well, they’re all right. Read them once and that’s enough. Books are useful. But some people read for fifty years, you know. And they haven’t begun their practice.

That said, I’m signing off to get on with it.  Have a wonderful weekend, everyone!



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Living it up with homemade skis

“Dying is easy, comedy is hard.”  I love the old saying because it captures perfectly the paradox of lightness in our lives.

Laughter and smiles seem somehow foundational to our humanity, but sometimes it feels like too much of an effort to live with a sense of buoyancy.

I spent the past couple of days noting how often my children laugh.  They’re awesome at it (most of the time).   Giggles turn into cracking up, which turns into unstoppable belly laughs.  And just when you think they’re done, it starts all over again.

I am woefully far behind them.

In this last year, I want to recapture this sense of lightness.  I want to be amazed by subtlety, and to be reminded not to take this waning life too seriously.

We’re trying a little experiment in our house this week.  Can we make at least 3 people smile each day (not counting each other)?

Today we made an old lady walking down our street smile from ear to ear,  simply by smiling at her and saying hello.

When she had passed far enough behind, we high-fived each over, feeling  intoxicated by the connection.

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Painting by Vivian Shaw

330 Days Remain

Ever since completing my own advance directive, I’ve been thinking about what makes filling one out so hard for people.

Many friends have written to me after my post on the topic, saying that they just can’t seem to get around to signing one – even though they recognize how important it is.

One friend shared with me the “Ethical Will” of her aunt, Vivian Shaw, who died comfortably in hospice care in 2006.   I was lucky enough to have known Viv over the years, and to have witnessed the care and thought she put into life and, ultimately, death.

As her ethical will demonstrates, the totality of our beings goes into these decisions — our spiritual beliefs, ethical values, temperament, family situation and financial considerations.

No wonder it can be so difficult.

With my friend’s permission, I wanted to share Viv’s articulate and long-considered rationale behind her own living will, in her own words…

This paper explains the choices I make in my living will and health care proxy.

Goals

At 4 score years, I do not want powerful medications or “hi-tech” procedures.  They can be as risky to an 80 year old body as disease itself.  We have a right to choose and control our own risks — especially if quality and not quantity of years is our focus.

I do not wish to survive a disease that would gradually destroy my mind and body; a disease or accident that would leave me unable to experience the pleasures of sight, sound and movement; unable to bathe, dress and feed myself; requiring intubation or the use of mechanical equipment for involuntary functions.

A life of such mental and physical impairment would have lost requisite quality for me.  I do not fear death as much as I fear the indignity of deterioration, dependence and hopeless pain.  I ask that drugs be administered to me for terminal suffering even if they hasten the moment of death.

Beliefs

I “believe” that we are in the universe as the cells in our bodies are in us.  There is a time to be born and a time to die.  All sentient beings contain within themselves the seeds of their own dissolution.

Life and death are not opposites.  Birth and death are two “ends” of a transitory continuum.  Death is built into the nature of biological life with the same care as birth.

We are here for a brief flash in the spectrum of time.  Then, we merge again with the mystery of “Being.”  Although we relinquish our separateness, we remain – in some way – a part of the mystery.

Values

The ethicist Ronald Dworkin has written, “The crucial question is not whether to respect the sanctity of life but which decision one believes best respects that sanctity.”

Compassionate end of life care implies empathy and respect.  It reflects the Golden Rule – do not unto others as you would not have others do unto you.  Compassionate care is not correct action; it is mindful action for this unique person in her unique situation.  It is an I/Thou, not an I/It relationship.

Statistics refer to bodies.  But persons are unique mind-body integers.  Implementing treatment based on statistical data may help one person, yet seriously damage another.

Each of us in an Advance Directive has the right to state her will with regard to end of life care – whether her choice is refusal, withdrawal or heroic treatment.  In a country that has historically avowed religious and philosophical freedom, I can find no justification for denying an individual choice and control in terminal care.

A bad death is fixed in the memory of survivors with guilt and grief.  The most compassionate gift we can give to ourselves and others is serenity in the dying process.  My friends and family understand and respect my values.  Many share them.

The focus of the medical industrial complex on resisting death with powerful pharmaceuticals and heroic technological procedures is based on particular bio-ethical values — shared by some patients and not by others.

According to the Golden Rule, I deserve the same respect for my own values.  Again, I quote from Ronald Dworkin, “A government which dictates that I live and die in accord with a bio-ethical value system in which I do not believe is a humiliating form of tyranny.”

Temperament

I respect the beliefs of others but there are many whose beliefs I do not share.  I feel that extending biological existence for too long is like putting a dying flower into a splint.  An untimely death is just as much one that comes too late as one that comes too soon.

Temperaments differ.  Some of us are fighters who rage against the dying of the light.  Those who do not fight are often demeaned as depressed or castigated as lacking character.  It is hard for most to empathize with those whose fears and goals are different from their own.

Some find in their religion a reason to endure great pain.  Some have families who will not let them go.  Some are willing to endure any quality of life in order to resist death.

We are unique in our temperaments and life situations, and so in our beliefs, values and goals.

Family situation

End of life care is extremely challenging for a patient without immediate family at home or available for close supervising of hospital care.  Because I have neither siblings, husband or children, such necessary attention would realistically be unavailable to me.

There is always risk in combating serious disease.  When the patient has lived for 4 score years, that risk is magnified.  For me, stress would be exacerbated to an iatrogenic level if my doctors ignored my carefully prepared living will through which I hope to maintain choice and control in end of life care:  determined not to live in a chronic medical Orange Alert, constantly being watched for new physical catastrophe; not to live in a hospital or nursing home.

There is a natural shift in point of view as we move from youth to age.  Some want plastic surgery forever.  But many elderly patients are disturbed by some doctor’s aggressive will to “treat” at a time when they keenly intuit that “there is a time to be born and a time to die.”

Financial considerations

In conclusion – and of great practical importance – to coerce me to spend down my financial resources on expensive, unwanted end of life care would be to deny me the right to implement my beliefs, values and goals; to deny me the possibility of making a positive difference in the lives of my young survivors.

I wish to express my bio-ethical values in meaningful action — bequeathing the moral gift of a “good death” and the material gift of money which can add convenience and pleasure to their lives.

Such action would give purpose to my last days.

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