The Spoon Theory … or How To Continue to Be Happily Artful Despite Chronic, Catastophic and/or Life Threating Illness

This one is for all my poet, writer, artist and musician friends who continue to create in the face of sometimes dramatic  physical health issues and disabilities. Be as well as you can be. You are valued. 

There are two videos included here.  If you are reading this post from an email subscription, it’s likely that you’ll have to link through to the site to view the videos. They’re both worth the time and effort.

The Spoon Theory (see video above) is a clear and vivid way of explaining what it is like to live with any chronic, catastrophic and potentially life-threatening illness. I suspect that it is also explains what life is like for those who have lived long enough to be described as “elderly.” Understanding The Spoon Theory gifts us with compassion for ourselves and patience with how long it takes to get things done … even a poem, piece of flash fiction, a blog post or visits to other bloggers.

The first step in living successfully with catastrophic illness and advanced aging is to recognize (acknowledge/understand) the ramifications in terms of everyday life and its details. The Spoon Theory helps with that.

The second step is acceptance. That’s about letting go of your story. It’s about not being defined by the circumstances of your life. It’s about living with not struggling against. This requires something much more profound than positive thinking, which tends toward the superficial.

Letting go of our stories means letting go of judgement and attachment and a sense of victimization, which are the root causes of many of our very human pathologies. The philosopher Arthur Schopenhauer wrote of this my-story mentality as “striving, disappointment, and boredom” or a life that is devoid of Spirit. Songwriters, who often make their living by stoking the “pain body” or the residue of emotional pain that stays with us [Eckhart Tolle], call this the IFD disease – idealization, frustration (the ideal cannot be achieved) and demoralization.

The third step in the journey is to adapt, a business of the heart. Adapting is not about giving up. It’s about finding our core of  joy and gratitude and no one reminds of joy and gratitude  better than the beloved Benedictine monk, Brother David Stendl-Rast (video below), who combines the wisdom of traditional Christianity with pragmatism of Buddhism.

No guilt. No judgement. Just joy. With understanding, self-compassion, patience and acceptance, we can still produce as so many of us do … and maybe, instead of beating ourselves up over what didn’t get done each day, we’ll be able to pat ourselves on the back for all we do accomplish. We cannot share The Spoon Theory with everyone. Many people will not understand our challenges. All that matters is that we do and that we support one another.

© 2017, words, Jamie Dedes (The Poet by Day), All rights reserved


“In politics being deceived is no excuse.” Leszak Kolakowski

Recommended read: On Tyranny: Twenty Lessons from the Twentieth Century by Timothy Snyder. Left, right or center – American or not – it’s a must read for our chaotic times … and not just the list of lessons but Prof. Snyder’s commentary on each. This book is a rational enlightening little gem and a powerful wake-up call.

Lesson One: “Do not obey in advance. Most of the power of authoritarianism is freely given.  In times like these, individuals think ahead about what a more repressive government will want, and then offer themselves without being asked.  A citizen who adapts in this way is teaching power what it can do.” Prof. Snyder

THE WORDPLAY SHOP: books, tools and supplies for poets, writers and readers

Celebrating Sixty-seven Years on the Razor’s Edge

Om or Aum the mystical or sacred syllable in the Indian religions, which symbolizes the all-encompassing basic substance: God, Allah, Being, Source, Light, whatever is your preferred pointer.

The Hindu Om or Aum symbolizes the all-encompassing basic substance: God, Allah, Being, Source, Light, whatever is your preferred pointer.

“Rise, awaken, seek the wise and realize. The path is difficult to cross like the sharpened edge of the razor, so say the wise.” Katha Upanishads, verse 1.3.14

SURPRISED TO HAVE MADE IT TO SIXTY-SEVEN

photo-on-2014-03-31-at-17-08In gratitude today, I celebrate sixty-seven years of life, forty-seven years with my world-class son, and sixteen years of survival beyond my medically predicted expiration date.

About a week or two after the CitySon Philosopher was born.

About a week or two after the CitySon Philosopher was born, Gravesend, Brooklyn, N.Y.

In 1999, I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) and given two years to live. (No, I have never smoked in my life.) Thanks to the boundless patience and kindness of my son and the compassion and good offices of an extraordinary medical team, I’m still here, sometimes home-bound and always bound to toting an oxygen tank. These complications don’t keep me from enjoying the CitySon Philosopher, my beautiful, smart, fab and funny daughter-in-law, and the friendship of many including my friends from our Group for people with life-threatening illnesses, my neighbors, the members of our spiritual congregation/social justice network and my arts community of poets, writers, artists, musicians and bloggers.

With cousins Dan and Chris, like brothers to me.

With my cousins Dan and Chris, like brothers to me, Bay Ridge, Brooklyn, New York

Regarding the latter, I hold Jingle Yanqui (no longer online) most especially in heart. Her vision for forming a cohesive and supportive online poetry community has facilitated a network of poets I could not have hoped to manage on my own. It makes up for being unable to take part in off-line poetry readings and groups.

With Mom circa 1980, San Francisco

With Mom circa 1980, Park Merced in San Francisco

Without a doubt, I cherish the friendships and shared values among The BeZine core team members and guest contributors. They rock … and they’re helping to rock the world into peace.

Senior year of High School

At my Aunt Yvonne’s: junior year of high school when being a writer and poet was just a dream, Bay Ridge, Brooklyn, New York

This is perfect. Unable to find out who created it. If it's yours, please let me know and I will credit or take it down as you like.

This is perfect. This is exactly what it feels like to have the writer’s eye and ear. Different perspective. I love this illustration. Unable to find out who created it. If it’s yours, please let me know and I will credit or take it down as you like.

Celebrating poetry, prose, music and art with you through your books and blogs numbers among my most treasured gifts. Thank you for your honesty, for sharing your wisdom, your joys and sorrows, your laughter and pain and very human folly, your faith and despair, the rough knobby wool of the human condition. As my workload and commitments have expanded over the years and my disease progresses, I don’t get to visit as often as I like … but I do peek in on you and you continue to endear yourselves to me.

LESSONS FROM THE SHARPENED EDGE OF THE RAZOR

Over the past few days, I have been thinking about life lessons learned from years of living – as you do too – on the razor’s edge:

  • We are not meant to compare ourselves with others. Our beauty is absolute, not relative.
  • Freedom is a state of mind. It requires a recognition of  Madison Avenue values and programming and a disconnect from them and from any other received values that are not consistent with our own inner truth.
  • Committing art is spiritual practice.
  • We are meant to immerse ourselves in beauty: family, friends, flowers, music, poetry …
  • As long as we live on this earth, we have to make a living, but we were not meant to be wage-slaves. Find the balance between making a living with making a life.
  • Health is a relative thing: We will always be more-or-less healthy. We may have to modify our activities because of health challenges and/or aging, but as long as we’re alive, there’s no reason not to stay engaged.
  • When we receive a terminal diagnosis, it takes time to process and to deal with the shock. Eventually we find our way to peace and continue our lives, albeit within the limits of disability. The terminus – as you can see from my experience – may be a long way off.
  • The only difference between people who are living with a terminal diagnosis and those who are not is that the former are no longer in denial.
  • Don’t turn good time into bad by worrying about what is an inevitable part of life. There comes a point when we accept that things are just the way they should be even though we don’t understand the whys and hows.
  • As long as we insist on identifying with the painful experiences of our lives, with the insults received at the hands of others, we feel desolate and somehow less.  The order of the day is reframe and reinvent. The need is to rewrite our stories.
  • People who are at peace with themselves are never cruel. If someone hurts or has hurt us, it’s because of their own pain.
  • Best policy: let go, trust yourself and get on with life.
  • Consciousness is not the mind attached to the brain. It is a Light independent of the physical. We may not always have form or human personality but we have always been and we always will be. The challenge is to be a worthy spark of Being.
  • Love – true love – is not romantic love. Love is found by seeing the reflection of Being in ourselves and all life. It is the ability to recognize the sacred everywhere and in everyone, even in our frail and fallible selves, in the most unfortunate conditions and the most unfortunate people.

May every day be a rebirth for you in the light of Love.

In metta,

Jamie

Metta – the Buddhist practice of holding self and others in loving kindness, a value shared by the world’s religions.

A sweet kind photo-grid made for me today by my cousin Dan. Meaningful, memorable photos all.

A sweet kind photo-grid made for me today by my cousin Dan. Meaningful, memorable photos all.

Family photographs are under copyright.  Please be respectful. The Om illustration is in the public domain.

SUBSIDIARY DEITIES

Introducing Baxter Dedes, the newest member of the family and 'The Poet by Day' office manager

Introducing Baxter Dedes, the newest member of the family and the new ‘The Poet by Day’ office manager. Baxter is a Rat Terrier and Chihuahua mix … a “Rat-Chi.”

Remembered warmly and with gratitude, Baxter’s predecessors:

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Brutus.

“A kind of additional or subsidiary Deity designed to catch the overflow and surplus of the world’s worship . . .  The Dog is a survival — an anachronism.  He toils not, neither does he spin, yet Solomon in all his glory never lay upon a door-mat all day long, sun-soaked and fly-fed and fat, while his master worked for the means wherewith to purchase the idle wag of the Solomonic tail . . .” Ambrose Bierce, The Devil’s Dictionary

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Buddy and his best pal.

“A dog teaches a boy fidelity, perseverance, and to turn around three times before lying down.” Robert Benchley

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Xiang Xiang’s Ah Man, better known as “Gus.”

“My dog is worried about the economy because Alpo is up to 99 cents a can.  That’s almost $7 in dog money.” Joe Weinstein

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Feyd.

“How’s it going, Mr. Peterson?,” asks Woody in Cheers. “It’s a dog-eat-dog world, Woody, and I’m wearing milk-bone underwear.”

© 2016, photos from the family album, Jamie Dedes, All rights reserved

Happy Father’s Day with Mexican-American Poet and former California Poet Laureate, Juan Felipe Herrera … the immigrant experience

Juan Felipe Herrara (b. 1948), American poet and writer, photo by SlowKing

Juan Felipe Herrera (b. 1948), Mexican-American poet and writer, photo by SlowKing under GNUFDL

I posted this a few years ago here and just included it in this month’s issue of The BeZine.  I’m re-posting it now because it highlights the quality and character of immigrants to the United States of America, which seems a good thing to do at this time. I’ll post this Sunday’s Poesy later today. 

Juan Felipe Herrera is a Mexican-American poet and performance artist, a writer and cartoonist, a teacher and an activist.

“Many poets since the 1960s have dreamed of a new hybrid art, part oral, part written, part English, part something else: an art grounded in ethnic identity, fueled by collective pride, yet irreducibly individual too. Many poets have tried to create such an art: Herrera is one of the first to succeed.”  Punk Half Panther by Stephen Burt in the New York Times

Herrara incorporates into his writing his experience of family and the life of the compesinos, migrant farm-workers.

“Into the tilted factories, the smeared taxis,
the stunted universities, into the parlor of bank notes,
in the cramped cookhouse where the dark-skinned
humans still stoop and pitch the daily lettuce bags …”

He sometimes tells stories that arise from what is for him a pivotal moment: the early school experience of trying to fit in though he had no English-language skills. He also writes stories that illustrate the problems of immigration, which often separates families.

In 2012, California Governor, Jerry Brown, named Herrera California Poet Laureate, the first Chicano poet to be so honored.

Many of us – like Juan Felipe Herrara – had fathers or grandfathers who came to the United States to make a better life for themselves and eventually for their children and future generations and who went on to make substantive contributions to this country. Sometimes we like to remember and acknowledge them for their vision, courage and hard work. Today seems like a good day to do so. The video below is charming children’s story, A Tale for Father’s Day, about Herrera’s immigrant father. Enjoy!

Happy Fathers’ Day to all the dads and to all the moms who, for one reason or other, are both dad and mom.