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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

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The Forest Refuge in Barre, MA

The Forest Refuge in Barre, MA

259 days remain

Finding time for quiet contemplation.

When I sat down to write a priority list for my last year to live project, I quickly scribbled “make time for silent reflection” right near the top.

Call it the No-Atheists-in-Foxholes Theory.  Or blame it on my being a Pisces.  But whatever the reason, I feel so strongly about the power of contemplative practices that I’ve rearranged heaven and earth to clear my work schedule and recruit friends/family/babysitters to watch the kids while I head out of town for a 10-day silent meditation retreat.  As of Friday afternoon, I’ll be meditating in the hall pictured here.

The truth is that I first came to meditation several years back, feeling weary to the core.  While seemingly everyone around me was starting a family of their own, difficulties with pregnancy and heartbreaking miscarriages had left me feeling battered and limp, like all the joy had been sucked out of living.  Nothing in my life had prepared me for feeling that low.

Then one day I saw a flyer for a program at the Cathedral of St. John the Divine called “Universal Meditation Masters:  A Conference on Meditation from Five Faith Perspectives.” It must have been the word “universal” that caught my eye.  For as long as I can remember, I had rebelled against the idea of there being one chosen faith.   (“How could millions of people tell billions of others that what they believe is wrong?” I remember indignantly  – and quite tactlessly – questioning my poor mother from the back seat of our Buick wagon as we drove home from church one morning.)  If there was something that all major faith traditions could agree on, I needed to hear about it.

The 3-day program blew my mind.  Here was the Benedictine monk Father Laurence Freeman; the head of the Sufi Order of Islam in the west Pir Vilayat; the Buddhist nun Sister Annabel Laity; Reconstructionist Rabbi Marcia Prager; and the founder of Integral Yoga, Sri Swami Satchidananda.

I recently found my aging notebook from that restorative weekend.  They had spoken about kindness, forgiveness, equality, calm, simplicity, presence, compassion.  About how our very wounds can be the gateway to new beginnings if we choose to see them as such.  Most of all, they had all agreed that time spent in quiet reflection can be utterly transformative.

Fortunately for me, New York City is a very easy place to learn to meditate.  In the midst of all the hustle, there are meditation centers of all stripes.  I pretty much tried them all, finally alighting on the non-sectarian vipassana meditation as the one most in sync with my disposition.

All these years later, what do I get out of meditation?

I think one of the most important things I take from it is a keen awareness that there are no hierarchies of moments.  Being outside with the kids on a beautiful beach day when we’re all happy is totally equal to the moment when I’m rushing frantically through the driving rain on my way to the subway so I can get to a meeting on time.  Hard to explain.  But if I can remember that, life seems so much more vibrant a lot of the time.

I also feel that meditation helps me remember that there’s a vast, calm reservoir right below the surface that I can get in touch with at any point, as long as I remember to check in.  Mainly, meditation reminds me that everything is workable.  Every stressful situation, every difficult person.

That’s not to say that I now have it “all figured out” — far, far from it!  But meditation feels like the key to something.  I have no idea yet what it unlocks, but I found a tool that works for me, and I’m continuously humbled by it.

Before I go silent on you for 10 days, I thought I’d share this wonderful poem by Wes Nisker.  Be well, everyone!!


Why I Meditate (After Allen Ginsberg)

I meditate because I suffer. I suffer, therefore I am. I am, therefore I meditate.

I meditate because there are so many other things to do.

I meditate because when I was younger it was all the rage.

I meditate because Siddhartha Gautama, Bodhidharma, Marco Polo, the British Raj, Carl Jung, Alan Watts, Jack Kerouac, Alfred E Neuman, et al.

I meditate because I have all the information I need.

I meditate because the largest colonies of living beings, the coral reefs, are dying.

I meditate because I want to touch into deep time, where the history of humanity can be seen as just an evolutionary adjustment period.

I meditate because evolution gave me a big brain, but it didn’t come with an instruction manual.

I meditate because life is too short and sitting slows it down.

I meditate because life is too long and I need an occasional break.

I meditate because I want to experience the world as Rumi did, or Walt Whitman, or as Mary Oliver does.

I meditate because now I know that enlightenment doesn’t exist, so I can relax.

I meditate because of the Dalai Lama’s laugh.

I meditate because there are too many advertisements in my head, and I’m erasing all but the very best of them.

I meditate because the physicists say there may be eleven dimensions to reality, and I want to get a peek into a few more of them.

I meditate because I’ve discovered that my mind is a great toy and I like to play with it.

I meditate because I want to remember that I’m perfectly human.

Sometimes I meditate because my heart is breaking.

Sometimes I meditate so that my heart will break.

I meditate because a Vedanta master once told me that in Hindi my name, Nis-ker, means “non-doer.”

I meditate because I’m growing old and want to become more comfortable with emptiness.

I meditate because Robert Thurman called it an “evolutionary sport,” and I want to be on the home team.

I meditate because I’m composed of 100 trillion cells, and from time to time, I need to reassure them that we’re all in this together.

I meditate because it’s such a relief to spend time ignoring myself.

I meditate because my country spends more money on weapons than on all other nations in the world combined.  If I had more courage, I’d probably immolate myself.

I meditate because I want to discover the fifth Brahma-vihara, the Divine Abode of Awe, and then I’ll go down in history as a great spiritual adept.

I meditate because I’m building myself a bigger and better perspective, and occasionally I need a new window.

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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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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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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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This essay was written by a 17-year old in 1938.  It was reprinted in the Wall Street Journal on Feb. 6.    It’s a passionate look at the 5 things the young man wants from life before he dies …

  1. Doing something truly great
  2. Friendship
  3. Travel
  4. Love
  5. And – yes – even sorrow

Before I Die

By Edmund N. Carpenter, II

The following essay was written by Edmund N. Carpenter, age 17, in June 1938 while he was a student in Lawrenceville, N.J. Carpenter would go on to win the Bronze Star for his service in World War II and to a civilian career as an attorney. A graduate of Harvard Law School, he became president of Richards, Layton & Finger, a law firm. He died on Dec. 19, 2008 at age 87 and is survived by six children and 15 grandchildren:

It may seem very strange to the reader that one of my tender age should already be thinking about that inevitable end to which even the paths of glory lead. However, this essay is not really concerned with death, but rather with life, my future life. I have set down here the things which I, at this age, believe essential to happiness and complete enjoyment of life. Some of them will doubtless seem very odd to the reader; others will perhaps be completely in accord with his own wishes. At any rate, they compose a synopsis of the things which I sincerely desire to have done before I leave this world and pass on to the life hereafter or to oblivion.

Before I die I want to know that I have done something truly great, that I have accomplished some glorious achievement the credit for which belongs solely to me. I do not aspire to become as famous as a Napoleon and conquer many nations; but I do want, almost above all else, to feel that I have been an addition to this world of ours. I should like the world, or at least my native land, to be proud of me and to sit up and take notice when my name is pronounced and say, “There is a man who has done a great thing.” I do not want to have passed through life as just another speck of humanity, just another cog in a tremendous machine. I want to be something greater, far greater than that. My desire is not so much for immortality as for distinction while I am alive. When I leave this world, I want to know that my life has not been in vain, but that I have, in the course of my existence, done something of which I am rightfully very proud.

Before I die I want to know that during my life I have brought great happiness to others. Friendship, we all agree, is one of the best things in the world, and I want to have many friends. But I could never die fully contented unless I knew that those with whom I had been intimate had gained real happiness from their friendship with me. Moreover, I feel there is a really sincere pleasure to be found in pleasing others, a kind of pleasure that can not be gained from anything else. We all want much happiness in our lives, and giving it to others is one of the surest ways to achieve it for ourselves.

Before I die I want to have visited a large portion of the globe and to have actually lived with several foreign races in their own environment. By traveling in countries other than my own I hope to broaden and improve my outlook on life so that I can get a deeper, and more complete satisfaction from living. By mixing the weighty philosophy of China with the hard practicalism of America, I hope to make my life fuller. By blending the rigid discipline of Germany with the great liberty in our own nation I hope to more completely enjoy my years on this earth. These are but two examples of the many things which I expect to achieve by traveling and thus have a greater appreciation of life.

Before I die there is another great desire I must fulfill, and that is to have felt a truly great love. At my young age I know that love, other than some filial affection, is probably far beyond my ken. Yet, young as I may be, I believe I have had enough inkling of the subject to know that he who has not loved has not really lived. Nor will I feel my life is complete until I have actually experienced that burning flame and know that I am at last in love, truly in love. I want to feel that my whole heart and soul are set on one girl whom I wish to be a perfect angel in my eyes. I want to feel a love that will far surpass any other emotion that I have ever felt. I know that when I am at last really in love then I will start living a different, better life, filled with new pleasures that I never knew existed.

Before I die I want to feel a great sorrow. This, perhaps, of all my wishes will seem the strangest to the reader. Yet, is it unusual that I should wish to have had a complete life? I want to have lived fully, and certainly sorrow is a part of life. It is my belief that, as in the case of love, no man has lived until he has felt sorrow. It molds us and teaches us that there is a far deeper significance to life than might be supposed if one passed through this world forever happy and carefree. Moreover, once the pangs of sorrow have slackened, for I do not believe it to be a permanent emotion, its dregs often leave us a better knowledge of this world of ours and a better understanding of humanity. Yes, strange as it may seem, I really want to feel a great sorrow.

With this last wish I complete the synopsis of the things I want to do before I die. Irrational as they may seem to the reader, nevertheless they comprise a sincere summary of what I truthfully now believe to be the things most essential to a fully satisfactory and happy life. As I stand here on the threshold of my future, these are the things which to me seem the most valuable. Perhaps in fifty years I will think that they are extremely silly. Perhaps I will wonder, for instance, why I did not include a wish for continued happiness. Yet, right now, I do not desire my life to be a bed of roses. I want it to be something much more than that. I want it to be a truly great adventure, never dull, always exciting and engrossing; not sickly sweet, yet not unhappy. And I believe it will be all I wish if I do these things before I die.

As for death itself, I do not believe that it will be such a disagreeable thing providing my life has been successful. I have always considered life and death as two cups of wine. Of the first cup, containing the wine of life, we can learn a little from literature and from those who have drunk it, but only a little. In order to get the full flavor we must drink deeply of it for ourselves. I believe that after I have quaffed the cup containing the wine of life, emptied it to its last dregs, then I will not fear to turn to that other cup, the one whose contents can be designated only by X, an unknown, and a thing about which we can gain no knowledge at all until we drink for ourselves. Will it be sweet, or sour, or tasteless? Who can tell? Surely none of us like to think of death as the end of everything. Yet is it? That is a question that for all of us will one day be answered when we, having witnessed the drama of life, come to the final curtain. Probably we will all regret to leave this world, yet I believe that after I have drained the first cup, and have possibly grown a bit weary of its flavor, I will then turn not unwillingly to the second cup and to the new and thrilling experience of exploring the unknown.

365 Days Remain

Tonight begins my “Year to Live” journey.  Twenty-five of us are assembled in an open loft space in SoHo, sitting on black plastic folding chairs, facing the front of the room.

Robert “Chodo” Campbell, the co-founder of the New York Zen Center for Contemplative Care, asks us to close our eyes.

In his sonorous British baritone, he instructs us to visualize ourselves going to the doctor’s office.

“Really feel yourself in that space,” he instructs.  Gravely, he begins:

“We’ve got the results of your blood work and the scan, and I’m afraid it’s worse than we thought.  You have, at most, 12 months to live.  Go home and put all of your affairs in order.  The nurse can call someone to come and pick you up.  You can stay here as long as you need and collect your thoughts.”

I feel my palms getting moist.  Would my doctor really say, “Go home and put all of your affairs in order,” I wonder.  I’d like to think he’s got more soul than that.

What would he say?  “Go home and be with Dave and the boys.”  That’s better.  Dave and the boys are a hell of a lot more comforting than my “affairs.”

Chodo rings the large gong at his feet, and we slowly open our eyes.  Then he asks us to think about a couple of things.

  • Who will you tell?

Dave.  I’d have the nurse call Dave right away.

My mom and dad?  I wonder.  My dad recently turned 80, and my mom is in her late 70s.  They’d need to know, but not right away.

The boys?  This is unimaginable.  How do you break such news to a 9 and a 6-year old?

My brothers and sisters-in-law.  Yes, I can do that.  I need their support.

Susan, Deb, Joy, the Lisa’s…  My list of friends grows and starts arranging itself neatly in my mind.  I feel a bit of relief.

  • What does this change for you?

Wow.  It’s immediately apparent.  “I’ve got to get off FaceBook and email,” I say to myself with certainty.  Superficial, I know.  But it’s a start.

It’s clear that I’ll need all of my remaining days to think about these things.  I’m grateful that the Year to Live program gives me that chance.  Judging by the reaction of my friends, most people would rather re-do the SATs before putting themselves through a course like this.

As the evening winds to a close, seven of us jam ourselves silently into the tiny elevator.  Before we hit the lobby, we stop at the 3rd floor where a woman moves to get in.  Seeing that it’s full, she backs away with a start.

“I guess she doesn’t want to be with 6 dying people,” I quip as the doors close.

A classmate behind me says softly, “But there are 7 of us.”

“I wasn’t counting myself,” I respond.  Full denial has already set in.

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