International MPN News, Science & Opinion

A reflection – When survival is not an option

Don’t worry. You don’t know enough to worry. That’s God’s truth. Who do you think you are that you think you should worry for crying out loud. It’s a total waste of time. It presupposes such a knowledge of the situation that it is in fact a form of hubris…      -Terence McKenna.

It is only human to make plans, to extend the on-going narrative of our lives into the future.

But how do we develop a story line when the ending is in sight?  

Lately, I find myself trying to create a narrative for the end of days.  In my case it’s not myelofibrosis, my long-term companion, that’s beckoning me to wrap up my story

And it’s not even the growing decrepitude of my familiar, dear and aging body. 

It’s the intrusion of a solid tumor rising up from the endless replications of cells over four score years. Its emergence placed a period, a fullstop to the last chapter of my life, not at  a specific hour but a firm enough punctuation for me to hear the clock ticking.

In that frozen instant of time, when we know we will not recover, our story line shifts from plans and dreams  to alternate versions of  the final chapter of our story. 

There are times survival is not an option. The die has been cast. In my case, I have had my single cycle of chemotherapy and radiation. I am pain free and can expect to remain that way for a while.But return and expansion of the cancer is pretty much inevitable.  My narrative line ends at a brick wall beyond which lies mystery, an adventure in different realms.

(In truth there is a possible treatment option requiring submission to extraordinary medical procedures.   To plan the end of life recovering from well-intentioned barbarous interventions strikes me as a particularly lunatic and desperately disillusioned narrative.  Were I younger, were my offspring still young children, were I in love, were a million other circumstances prevailing I might consider alternatives. But I am content.  I have lived my life fully and this urgent call to prepare for its ending is both timely and welcome. )

So…how make plans under these circumstances that come to us all, what story line will sustain the coming days, how many pounds of coffee shall I buy, what projects take on, what papers burn, how prepare my mind for the journey when the destination is personal oblivion? Think back to the sweet days shadowed by a growing realization of mortality. Think back to…

… a summer evening a year ago.

It is 2016. The transcendent peace of an August evening on the porch, screened by a thick bamboo grove from sound and street. On the porch in the green dusk, among the maple trees and cicada,  a cup of coffee, my animal companions stretched out in their own fashion.  This is a very good, sweet life and I am profoundly aware of it when the coffee is hot and the evening is cooling.

On aging, death and apoptosis

And yet I cannot help but notice the contraction of my days.  Except to my good dog Jenny, my faithful parrot Bozo and even from time to time my sweet and zany cat Katrina, I have become personally irrelevant.

My life, my days, my petty concerns and rollicking passions are of primary importance to no one on Earth.

The dawning realization of my receding significance, the setting sun of my once bright noontime radiance, is particularly acute when recalling those days as a student, a young father of young children, a husband and lustful lover. Those remembered and sharply edited days, powered by ambition, surrounded by newly discovered lovers and old friends, by colleagues and work teams, squads and platoons in uniform, dancing hasids around a wedding chuppah drift through memory

Now it is all gone.  How could it be otherwise?

My surviving close old friends, my family live in distant states in other lives. And I am fully occupied within the boundaries of my skin.

Most of my children have children and some of their children have children.  Bursting containers of ancestral DNA, they are fully bound up in the compelling and relentless drama of everyday family life, citizens of a miniature nation bound by treaty, custom and constraint to the outside world, pursuing their multiple ambitions and desires.

I have good hearted and astonishingly beautiful grand-daughters, the older ones with new baby boys, new grandparents, friends, diapers, doctors, housework, husbands and the penetrating power of a rapidly sprouting baby life marking their days.  The younger ones are consumed by growing in every conceivable dimension, awake and asleep, in the nested protection of home and family.

In my bungalow retreat in the foothills of the Blue Ridge Mountains I have become iconic to them.  A crumbling granite figure carved in the craggy mountains of their consciousness.  Shrouded in mystery like an antique god whose magic has faded to be phoned up on holidays or some special occasion as if approaching, in ritual obligation, an ancient shrine that has fallen into disrepair.

Beyond an occasional brief hug or pallid handshake, I am rarely touched. Physically.  I frequent neither massage parlors nor prostitutes and a passionate kiss or embrace is only a dream-like memory while the fevered plunging gyrations and gasping crescendos of sex seem to be the recollection of an extended long-run performance featuring someone else in another life.

And so I compensate and like isolated old people everywhere make myself fully relevant to myself. Although I eat little I prepare elaborate meals for myself, compounded from food carefully bought at farmers markets, organic stores or harvested from my small garden.

I practice old time fiddle tunes on the violin which I play badly. I return in passing to guitar or banjo as to an abandoned stringed and fretted familiar wife.   I binge on Netflix French movies and on-line Hearts, explore genetics and report on the therapeutic follies of blood cancer treatment on-line to a dear and mostly incorporeal multitude of souls beyond the electronic pixel wall of cyberspace.

I seem to be cultivating an old man’s querulous eccentricities,  a taste for peppermint Lifesavers and feel bereft when the familiar blue plastic bag lies empty in the cupboard.  I drink a dozen cups of strong coffee daily, good French roast coffee, freshly ground and French pressed.  I bake bread several times a week and religiously feed my sourdough starter resting in its mason jar.

Collateral damage

On the primary plane of physical existence, mine is an irrelevant life to all but myself, Jenny, Bozo and sometimes – particularly on cold winter nights –  Katrina.

There is a great trade-off to their sweet companionship. I fear dying before my animal companions.  Their rituals of eating and treats, of morning and nighttime walks, of drives to the trails or river, of games and simply hanging out. All gone.  I am their primary connection, their translator and protector, their caregiver and companion. Jenny pants in anxiety when I return from a short trip without her. For nearly a quarter century, Bozo has never been far from my voice or thoughts.  I have always been their only home.  And suddenly all that is taken away from them with an impact no other living soul on Earth can feel.  Their prospective grief is my one prevailing burden. As if I were in control of the flow of events, the passage of time. It is a fear I need to let go.

(Who do you think you are that you think you should worry for crying out loud.)

While one deeply subjective narrative thread is broken by my death another is stitched into the bundle of life, another incarnation will have begun with that last exhalation.

No longer old, I am become new, physically reconstituted into primal elements, recombining on Earth just as I am freed of a material body, another raindrop slipping back into the restless ocean.  Home, again.

line short red red 50%

It is  2017.  Where are all my motorcycles tonight, my black BMW R-60. My silver and black R-100 with racing fairing, my Ducati 400 and Yamaha 250 YDS-2. Where my Columbia 28 sloop?   Where my brothers, my old dogs and cats?  Where my wife, my little ones and where my houses, my cars, my armor and weapons and where the blond days of my juicy and innocent youth.

Ghostly gone and faded under the moonlit stern waters, framed by trailing bow waves behind the fleeing craft of my days. I am headed on a broad reach into the expanding vortex of eternity.  At home in the universe. Again.

-Zhen 

line short red red 50%

© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2017. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Reproduction is permitted provided full and clear credit is given to authors and MPNforum.com with appropriate and specific direction to the original content

 

 

Comments on: "A reflection – When survival is not an option" (6)

  1. Omg, you have left me in tears….mostly because your words express the same feelings and realizations that I have. Thank you for expressing in words what I can’t, or am just too tired to write. You have an amazing gift.

  2. Kathy Van Meter said:

    Beautiful and fitting. I sit here in Mayo’s ER with my husband who fell in the parking lot on our way to our heme-onc appointments. Battered, bruised and broken he jokes with the staff. He is terminally ill with amyloidosis. You, Zhen, did a fine job describing how you feel in this strange end of life place we find ourselves inhabiting. I love how you write, have for many years. Peace and blessings, my friend.

    • Thank you Kathy… You’ve been a good long time cyber companion. So sorry about your husband’s fall. Since you’re in the ER he’s likely in some pain…despite his jokes. Humor, when possible, is our one reliable defense. The other, I’ve found, is conscious breathing and finding a peaceful place within…sometimes nearly impossible, of course, but always worth the effort.

  3. Barbara Kurtz said:

    I can’t say it better than Margaret Sims did. Thank you for pulling a large contingent of MPN patients and caregivers together, only one stop in your long life journey and sharing your end of life story. And leaving us believing in Santa Clause.

    • Dunno about Santa, Barbara…unless it’s that North Pole of the mind where the world conspires to bring us joy. As to the rest, I think how far back you and I go and never having met in person…although we almost made it last year at ASH. You’ve been a strong supportive person for MPN patients through all the ups and downs over the years and continue reaching out, sharing as our FB admin and friend. Did you ever consider nursing as a career?

  4. Margaret Sims said:

    Dear Zhen, I sit here absolutely stunned by the beauty of your writing and the window you have opened into your most intimate thoughts. What a generous, inestimable gift you have given us. With admiration, gratitude, and love, Margaret

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: