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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 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

“The Mighty” (That would be you and me!) … and your Wednesday Writing Prompt

I am disabled. Hear me roar!

I am disabled but not unable.  Thanks to medical technology, fabulous and caring physicians, family support, social support (both online and off) and computer technology, I continue with my chosen career, my chosen causes and a life that is as full and engaging as anyone could hope.

Now, I’ve discovered The Mighty (details in the video below) thanks to my Bardo Group Beguines colleague, Lana Phillips. What a great find!

A wonderful idea, essentially an online support group for people who are dealing with chronic and catastrophic illness and sharing information and resources. The people who visit The Mighty site and/or write for it, share their stories (including stories of parenting). They are women and men who are ill or disabled themselves or who are caring for others who are ill or disabled … or, perhaps both.

We are so fortune in these days that there are support groups available. My own mother lived with cancer over and over again. First breast cancer, which kept reoccurring. Then thyroid, kidney and other cancers. Ultimately she died at 76 of breast and colon cancer.  In her day, there were no support groups,  no one in her life who could understand the complications: psychological, financial or physical. There was no adult who could observe, understand and intervene. She also suffered from mental illness and was in an almost constant state of stress and trauma.

Unlike my mom, I have the benefit of a support group at the Medical Center for people with interstitial lung diseases who are in pre-transplant (me), transplant and post transplant programs. I also belong to an off-line support group of people with “life-threatening” (read ultimately fatal) illnesses, which is run by the local Buddhist meditation center. Some are – like me – lucky enough to go on for years. I was diagnosed in 1999 with Idiopathic Pulmonary Fibrosis, which is fatal within five years of diagnosis and for which there is no cure.  I’m still here because the diagnosis was wrong. There was no way to know that until time passed and reactions to medical treatments could be observed and evaluated. These proved that the condition is actually Hypersensitivity Pneumonitis. So, as you see, I’m still hanging out. Some of the members of our Buddhist group are not. Over the last seven years we’ve lost nineteen friends. That’s the tough part.

The upside is that our offline support groups provide us safe haven to share information, to be open about our fears and frustrations, and to share our joys. So too The Mighty, where there are a rather remarkable number of conditions addressed from a personal perspective and in a manner that is informed, compassionate and uplifting. Bravo!

WRITING PROMPT

Write a poem, short story or feature article about dealing with chronic catastrophic illness or disability. Directly or indirectly, illness and disability touch all our lives. It’s just part of this package called Life!  If you write an article, you might consider submitting it to The Mighty. Submission guidelines are HERE.

© 2016, words and photograph, Jamie Dedes, All rights reserved.