through the ache of time

My poem today on The Bardo Group blog …

The BeZine

720px-52706main_hstorion_lg see it moving – Life!
moving through the ache of time
seeking that place
where identity isn’t worn on a sleeve,
where individuals challenge the tribe,
where beauty frees itself from convention,
where the chains of fear dissolve

– Jamie Dedes

© 2013, poem, Jamie Dedes, All rights reserved * Photo credit ~ NASA, U.S. Public Domain

photo-on-2012-09-19-at-19-541JAMIE DEDES (The Poet by Day)~ I am a mother and a medically retired (disabled) elder. The graces of poetry, art, music, writing and reading continue to evolve as a sources of wonder and solace, as a creative outlet, and as a part of my spiritual practice.

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drawing the world back into ourselves … celebrating Lung Leavin’ Day

“Breathing involves a continual oscillation between exhaling and inhaling, offering ourselves to the world at one moment and drawing the world into ourselves at the next…” David Abram, Becoming Animal: An Earthly Cosmology

469px-Lungs_diagram_detailed.svgBreath: So necessary to the maintenance of life and so often a metaphor for life and spirit. Every year around this time, I take advantage of my blog to change the subject and write about diseases that harm the mechanism of breath, our lungs. I don’t do this to draw attention to myself. I do it to draw attention to the lung disease. I want people to be aware because Interstitial Lung Disease (ILD) can go undiagnosed or misdiagnosed and unattended for too long adding even more devastation to what is frankly horrific.

This year I was contacted by Heather Von St. James who wrote to me saying, ” I am an 8-year survivor of mesothelioma – a rare cancer caused by asbestos exposure. When I was diagnosed, I had just given birth to my little girl and was told I had 15 months to live. After undergoing a risky surgery, which required the removal of my left lung, I beat the odds and created Lung Leavin’ Day as a way to commemorate this day that changed my life forever.

“Lung Leavin’ Day is now used to encourage others to face their fears! One important thing cancer taught me is the importance of acknowledging these apprehensions that prevent us from living life to the fullest extent. Each year on February 2, friends and family gather at my house for a bonfire where we write our fears on plates and smash them into the fire.

“This year, we are asking bloggers to face your fears and raise awareness of this event by virtually participating in Lung Leavin’ Day! I have created an interactive page that tells the full story of this special day, which can be found here: Lung Leavin’ Day

“I would love it if you would check out the page and share it on your blog to help spread the word about Lung Leavin’ Day!”

800px-Kitchenware_Melamine_Plate_RezowanAnd so I encourage you to visit Heather’s blog. Learn about Mesothelioma. Face your fears – whether they have to do with lung issues or other challenges – and break a virtual plate by way of symbolically breaking your fears.

“Every damn breath hurt like hell, but I kept Breathing too. I told myself it would be a privilege to breathe through pain like that for the rest of my life – just knowing each breath was a gift.”  Rachel Van Dyken, American Romance writer

LLD-TalkingPlateIn the video below, Heather tells her story – or so I assume. I have to admit, my own experience with ILD is such that I can’t watch the video or read Heather’s entire story. I am, however, one of the lucky ones. I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 1999 and given two years. This condition turns lungs into scar tissue and scar tissue isn’t permeable enough for breathing.  IPF is fatal, usually within five years of diagnosis. As it happened, I responded to drug interventions and it became clear to all of us that I don’t have IPF.  

We went for years with the diagnosis-of-the-month or year. Now, thanks to my fabulous physicians, my condition is “managed.” I am considered chronic and stable and have a precise diagnosis: Hypersensitivity Pneumonitis, one of the many different kinds of ILD. I have an oxygen compressor and portable oxygen and medications that do not heal but do slow disease progression. I am in an excellent (99% success rate) pre-transplant program at a renown research and teaching hospital.

Heather lives with one lung. I live with two damaged lungs. Neither of us are going to run marathons, but we’ve both beat the odds. We’re both still here with our families and friends and we both live rewarding lives. The age of miracles is not dead and however imperfect our healthcare system is, people like Heather and me would not be alive without the advantages it does offer. Thanks to a combination of the best health care providers, our own internal resources and our families, we experience big and small victories and major love every day.

Please read about and be aware of the symptoms of lung disease and if you have any doubts about your lung health, see your doctor. Take advantage of the tools and expertise available for diagnosis, help and care. Remember that in these matters, timely action improves your chance of survival and the quality of your life as a survivor.

Illustration and photo credits ~  lungs/Patric J. Lynch, medical illustrator under CC A 2.5 Generic license; dish/Rezowan via Wikipedia under CC A-SA 3.0 license

Orhan Pamuk: The Fear of Being Left Outside, What Literature Needs to Address

Orhan Pamuk (b. 1952), Istanbul Turkey, Novelist

Orhan Pamuk (b. 1952), Istanbul Turkey, Novelist ~ photo courtesy of Mr. Pamuk

“What literature needs most to tell and investigate today are humanity’s basic fears: the fear of being left outside, and the fear of counting for nothing, and the feelings of worthlessness that come with such fears; the collective humiliations, vulnerabilities, slights, grievances, sensitivities, and imagined insults, and the nationalist boasts and inflations that are their next of kin … Whenever I am confronted by such sentiments, and by the irrational, overstated language in which they are usually expressed, I know they touch on a darkness inside me. We have often witnessed peoples, societies and nations outside the Western world–and I can identify with them easily–succumbing to fears that sometimes lead them to commit stupidities, all because of their fears of humiliation and their sensitivities. I also know that in the West–a world with which I can identify with the same ease–nations and peoples taking an excessive pride in their wealth, and in their having brought us the Renaissance, the Enlightenment, and Modernism, have, from time to time, succumbed to a self-satisfaction that is almost as stupid.”

—Orhan Pamuk, Nobel Lecture (translation by Maureen Freely), 2006

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Some thoughts for today for us as writers, artists, and bloggers and simply as humans being. How do you feel about this statement? Is it fair?
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… and thus we begin a new week …

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