MY GOOD WRITING ROOM

img_2099“At the end of the day, it isn’t where I came from. Maybe home is somewhere I’m going and never have been before.”  Warsan Shire

I was diagnosed with interstitual lung disease in 1999. It wasn’t until 2008, however, that the most dramatic adjustments to my manner of living were required. What follows was written in April of that year. It was originally published in the now defunct California Woman.

It’s a good writing room, this room into which I have downsized to accommodate my disabled body. The room is big enough for comfort and small enough to be easy – and quick – to clean.  Perfect!  It’s the master suite in a sprawl of a condo on the gentle sweep of a tree-lined street in Menlo Park, California, a long way from home . . .

That march of trees down the drive, by the way – the oak and maple and campertown elm – is important. I’m enamoured of trees. Their proximity influenced my decision to rent.

“Trees are sanctuaries. Whoever knows how to speak to them, whoever knows how to listen to them, can learn the truth. They do not preach learning and precepts, they preach, undeterred by particulars, the ancient law of life.” ― Hermann Hesse, Trees: Reflections and Poems

img_2102-2This place has a solid, foursquare feel to it. There are no stairs inside the condo and no stairs to reach it, and this is an added attraction. The colors are soft and peaceful: creams, peaches and pistachios, maroons and deep green. My large and cherished statue of Quan Yin and two tall plants add grace to one corner. My pie crust table with a small forest of variegated greenery sits in the other. There’s a maple secretary, which is perfect for my laptop and family photographs, a shrine (or so my world-class daughter-in-law says) to those who sit at the center of my heart. I have tossed a white cloth of Brandenburg lace over my round bedside table. My stereo lives on top of the old oak dresser. There are two mismatched-bookcases, much valued by me. They are part of our family history.

Once, forty-some years ago and 3,000 miles away, I was addicted to Georgette Heyer‘s Regency romances. I think if she would have written about this room with its fine, healthy plants, good books, good music, and hodgepodge of furniture, she might have described it as “shabby genteel”. That’s okay by me. I’ve got no one to impress and it serves my body, my spirit and my latter-day ambitions well.

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I decided on a double-bed. It offers ample enough room to lay out books, pens and colored pencils, paper and even my laptop. My darling landlady’s two yellow-eyed black cats are also ample and like to hop on the bed for a visit. Executives both, they supervise and comment petulantly when I ignore their direction. I’ve had many kitty companions. My last was Pywacket. I’ve learned over time that cats, like moonlight, inspire the muse. They are very welcome in here.

There’s a washer and dryer inside the condo, so I don’t have to try to lug laundry to a garage or laundry room and back. The kitchen isn’t quite as bright as I’d like, but it’s clean – scrupulous – in granite and stainless steel. I enjoy cooking almost as much as writing. It’s an endeavor that feeds my soul as well as my body, though I admit I miss having the energy and opportunity to cook for others.

I’m all moved in and settled. If you peeked in at me, you’d think me a housefrau, not a bad thing, running the laundry while preparing dinner: creamy yogurt, enchanted broccoli with olive oil, garlic, and lemon, and cheery orange carrot-coins with fried onions and dill. I prepared a risotto with rose brown rice, shallots, and shiitake mushrooms. Later, a mug of  honeyed Citrus Chamomile for a restful night of writing and sleep.

From this stillness, this cleanliness, this simplicity, I will write, cook and love my people with reckless abandon. For the moment, there is safe harbor. Life is good and tomorrow is a new day.

© 2008 Jamie Dedes

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

and then a new generation

10358082_10152372768442034_1234373728_n…and then a new generation …

a boy, an old soul
but a merry new story
fresh at bone and marrow
adhering to Conrad’s dictum
with little shocks and surprises
in every sentence of his book
his life, his metaphor . . .
wearing Truth as his dermis
seeking tears, not blood
and he, like all good art
changed me for the better

© 2014, poem, Jamie Dedes, Photograph courtesy of my cousin Dan, all rights reserved, from the family album, please be respecful

haunting the years

silhouettes-of-childrenthere’s little i’d want to live over
but a few moments, with special people,
their memory held safe, gently wrapped,
with affection, like a
gift waiting to be touched,
opened and savored …

ribbon tugged
….. paper unfurled

the scent of other children, brothers,
the timbre of their voices, those early days,
the freshness playing in my mind,
in flickering light, like

an eight-millimeter film
…..t of toddlers and youths

haunting the years until today
when i found you again

i reached out 
…..and you reached back

© 2014, poem, Jamie Dedes, All rights reserved
Illustration ~ courtesy of George Hodan, Public Domain Pictures.net

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