Reading between the lines

Ah...although it is difficult and sometimes impossible to explain the realities of living with MCS, telling a story has a way of leading you to veins of gold or a switch that turns on an awareness, or turns off a preconception in need of a tune-up. I, the storyteller of this tale have added a vein or a switch to SamandSally.

Look to the right on this page and find LIFESAVERS AND SAFETY NETS.

• The issue of HOMELESSNESS for people with MCS is huge! Hundreds of thousands of women, children and men of all ages are as the poem BLANK describes, "kapu" or unseen and invisible, could be you with the blink of an eye or a whiff of one more toxic pesticides. Link to MCS AMERICA to read between the lines of SamandSally's tale.


• Artists across the globe (like Sally) find the challenge to maintain and show their art either debilitating and a dead-end; or, they find a way to transform and collect their energies. CreativeCanaries is a website that offers a collective of hope and HUMOR.

Real stories take time ... check back as the tale of SamandSally continues,

the storyteller

Part II Tale of Two Dears

Sally found comfort in writing daily napkins of poetry. Once a published writer and journalist and a lover of books the illness turned print into one more poisonous apple. She could not handle print so could not read. A napkin and a pen worked for her, and in six months she filled a small box, a gift from Turtle Woman a loving and understanding friend, with poems of few words and powerful emotion.

Here are a few of those poems.

Living public

Urban life.
Parking lots paved paradise.
Still the palms sway in the afternoon breeze.
`Aole fruit. Cut to avoid killing a haole from land where snow drifts in the same global afternoon breeze.
Homeless—houseless nomads sleep legally in ALOHA STATE licensed vehicle.
Beware the witching hour.
BONG! 6:01 sleeping, you are citable by law.

Living public the maimed and injured catch the eye, draw heavy hands and big billed brother.
Peck. Peck.
Bang, bang.
Slam, Slam.
Cabang.
Security in the parking lots. Log times in. Log times out.
Not every one of the folk on foot, bicycle seat and 4-wheels lives under roof with walls and windows.
The WHY STORY not the same for the flock.
How many rove because the manicured neighborhoods get routine legal poisons and chemicals to “look good” yet keep on killing long after the bugs have mutated and learned to love the poison.

Living public the lacquer on the Ugly Betty lookalike’s morning do singes my nostrils on its way to my brain cells. Beauty and fashion first. My birthright to breath … unaccounted.

Coffee House Retreat

Out of the car into the Morning’s Brew
Co-car camper asleep behind his wheel where I saw him last. Night retreats same for the wanderers on this side of Paradise.
Yeh, clean-shaven haole man with your shirt tucked oh so neat…snap back…the cat’s asleep with his everything surrounding him. A problem? Or just shaken aware.

Ness-ism

Just enough.
Enough to.
To sustain.
Sustain the light.
Lightness.
Ness-ism.
Ism without.
Without attachment.
Attachment.


Blank

Her sweet old face held me—
One face stood out among the many.
My parking lot vigil watching momona young hapa couple squeeze out of their car.
Smooth globe faces, flesh stretch the 3X tee shirt, the stretchy flowered pareau.
Plastic bags bulge with stuff pulled from Foodland Shelves.
People-persons push alcohol hand-swiped carts to the beeped open doors of vehicles. Frontiers, FAV3, Astro Vans, TRD off Road.

Your sweet old face held me in the dark, tropical night.
I notice your quilted navy coat enveloping your small frame.
Your smile, your eyes engage two brown haired heads.
Oh, I start to think…family?

Your lips make words.
They pass you.
They blank you out.
You are Kapu…
You sweet one must have uttered the unspeakable.
You with the sweet face, asked.
Help.

In the months when their car, the parking lots and public spaces were home to our dear Sam and Sally one cure became the one that mattered. Night after night when sometimes no WHERE answered their need for a place to rest, Akua … God, the Universe, the Source of All carved out space again and again. Without a roof, or toilet that wasn’t public to The Many, life in the wild offered practical and reliable spiritual connections. The birds, the wind, the sun, the moon, the ocean and the sky anchored themselves to our dear ones so they would remember how loved they are. Fairies came to kiss them. Long-flying birds filled them with the courage to seek comfort in the journey as life.

Hamakua Fairy

They come with the gloaming
Soft like the light tired from a day of bright sun.

They come soft, gentle light.
Tiny fairy, still speaking in tongues.
“Hello”…she moved tenderly alongside.
As close as she could without climbing up.

We watched the beautiful Marsh slip into her night gown.
No words. Silent.

She moved closer—
Caressed my shorts—not touching my leg.
She leaned her curly blond head into me…kissed.

I thank her with a kiss planted first on my fingers, then onto her head.

“What are you doing?” the big dad said.

We knew—fairies come with the gloaming.

Kolea

Long distance flier
Bred to know earth
Feeding on worms—once my mother, once my father?
Spot them in the winter
Stick thin on single legs
Singular
Solitary
Focused

Kualoa, Kaneohe burial mounds, Kailua parking lots, Kapiolani Park, Ehukai Street

Banded, unbanded
Tribes of Golden Plover make their time in paradise count.

Fattened the once sleek stick-legged long fliers transform

Who is the broad black-chested stud outlined in white?

Kolea prepped for Tundra copulation, ground nests, young ones
Plumped for the non-stop journey back.
Tundra-bound Kolea.
Momona with worms.
Warm from the heat of tropic sun.
Kolea aku.
Kolea mai.

Our elderly dears like the long fliers the kolea continue their ocean crossings. The choices they make challenge them individually and as a pair, and the illness complicates things almost daily. The world Sam and Sally find themselves part of poisons not only our brave dears, but the whole human and sentient clan. Great changes will test the resiliency of all in the years to come. A storyteller like me can never remain untouched by the characters she makes up. They are part me and part fantasy. Explanations are reason-bound, a story… well that is something different. What do you think?

• “Man’s attitude toward nature is today critically important simply because we now have acquired a fateful power to alter and destroy nature. But man is part of nature, and his ware is inevitably a war against himself.”

-Rachel Carson, author of Silent Spring

A Tale of Two Dears ... the whole short story

(image credit: Chris Kawika Brown)

do the thing and rid yourself of all illusions

-`Olelo no`eau

I don’t know how to explain so I will tell you a story…

Once upon a time there were two elderly dears who boxed along and lived quite simply in their cottage. Their names were Sam Tall and Sally Round. As you have probably guessed their names aptly describe our two dears. Sam was a tall lean silver-haired man with legs that stretched for yards. Sally was as round as a kabocha squash with skin the color of perfectly cooked sausages. As a young woman her hair shone black as fountain pen ink and fell well below her then slender waist. Now, Sally Round wore her generous mostly salty colored hair in a style reminiscent of Prince Valiant with plump toasted dumpling cheeks. Sam was a portrait of deeply rolling creases across his forehead with squint lines carved at the corners of his hazel eyes a template of a craftsman long a-work in the sun. His was a handsome face that still heated the juices of his dear wife after more than twenty years together.

A body wears different when you have lived as long as our two friends have lived. Sam’s shoulders bent a bit forward and his right hip ached with stiffness after climbing up and down his favorite ladder one too many times fixin’ this or that on the long days of summer. Sam’s people bred in him the energy of lightning—quick-witted, and fast in pace. Aging tempered Sam, but then can you really temper lightning? Sally wore her years with a bit more complexity. The round one was gifted, or cursed, depending upon your view with the ability to smell things that weren’t quite right. Once when she was a much younger woman she woke from deep sleep to smell a small but disturbing wisp of a smell that ought not to be there. That was what she was good at—knowing when a thing ought not to be there. As was her habit she followed her nose … a small and similarly round as her name nose … to the sleep-disturbing smell. Downstairs a far distance from the bed in which she slept, Sally Round found the smell coming from behind the ancient wall in the den. The fireman who came to put out the smoldering wall said, “Someone here’s got a lucky nose. Your house mice had made a cozy den of their own in your wall nibbled through the old wiring – a favorite food of mice for some reason, and added it to the paper and foil insulation for a grand nest. It’s lucky you were to smell that wisp of smoke.” But here I go rambling on about the old times when in fact the story of today’s telling is about the adventures our brave friends faced shortly before Sally celebrated sixty years on The Planet.

Sensitivity is a gift in some corners of time, but when Sally Round celebrated her sixtieth birthday her sensitive nose was more poisonous apple than welcomed guest. Poisonous apple indeed, the fabled fruit of jealousy and spite seemed to be the only way our gal Sal could explain her life. Surely there must have been a badly turned jot of fate that was causing such fright. Every day offered up one offending smell after smell another. An occasional wisp of something that ought not to be was one thing, but in the years leading up to Sally Round’s sixtieth birthday the work of sensing and defending became a full-time job. Now Sal had always been aware of her keen senses and learned in her fashion to create cozy nests of safety and security wherever she was, protecting her internal trust meter required these nests of comfort. Adventures and travel had always been a favorite pass-time for her, so frequent moves were looked on as a good thing in the early years. Guardian spirits traveled with our girl and she always made space for them to be near. Together with her lovely man Sam, Sally Round traveled back and forth between the place of her birth and the wide continent across the ocean. The two made many interesting friends who enjoyed their company and saved up little projects for Sam--a wee deck off the back door, leaking faucets, screen doors that no longer slid. Sal was a woman of grace and child-like humor with a heart that could keep a secret and a confidence. But something had begun to happen slowly yet progressively to Sally’s internal wires, until the summer when her trust meter became locked in the ‘off’ position. In the years of her fifth decade her nose became over-loaded with the multiple offending smells. Sal could not sort the good from the bad. Her brain became a gate-keeper who never rested. She eventually became very ill with a body that could not release the memory of smells that ought not to be.
Life on The Planet had changed so much since Sam was a boy milking cows on his Uncle Andy’s farm in Wisconsin. Once when a particularly fierce electrical storm shook the skies above his Uncle’s farm, a bolt of lightning found its way through a socket empty of its bulb. From that open socket the lightning rod traveled down to crackle into the cement floor below. Young Sam Tall sat milking the cow on that cement floor. The force of the lightning raised Sam Tall off his seat, into the air and across the barn. “Wow!” That was the extent of his Uncle’s reply as he watched young Sam stunned, his thin frame still shocked on the cold cement floor. Placid yet unrelenting awareness like this fashioned Sam Tall to see life as puzzles to solve, knots to loosen from a familiar length of rope usable again once the tangles are undone. I have heard him say on more than one occasion that a person stunned by lightning experiences things that can’t always be proven. How indeed do you account for those instances in a body’s life where energy enough to light up a city lights up your own dear self? Electricity isn’t a simple thing to understand, and yet it’s what makes every happen. The moving of energy vs. the blockage of same is all about being alive.

Sally’s illness was very strange and difficult to understand. Healers approached her symptoms with herbs, adjustments and assurances aimed at releasing the trust button from its stubborn and persistence on-position. In truth most never believed Sally’s illness. Friends and family were at first sympathetic but with time more of them simply didn’t see why she just couldn’t get over it and on with a ‘normal life.’ Sam, every loyal to his sweet wife directed his lightning pace and quick responses to fend off the smells that were making Sally so ill. At first the smells were easy to address. A flowering bush that bloomed intensely could be trimmed the blossoms bundled and set out at the curb to be taken away. Open fires were another smell trigger. There were fixes to that too. Some of them easy, close all the windows. Escape was another fix. Others more involved. Those solutions meant learning to ask for the cooperation of others and we know how differently humans respond to being asked to change. Sam and Sally would have closed many windows, left more than a dozen homes, nests and apartments including their cottage in the valley and had traveled thousands of miles trying to out run the toxic smells. By the time our friends joined the small birthday celebrators for food and drink our brave Sam and Sal were living in their car as a last solution. Safe places alluded and offending smells had become life-threatening poisonous apples.

Where would you have me lead the reader now? What part of your stories needs to be shared with the world? “Tell me more about Sam. How did he manage?” Ah good question, yes Sam’s story is as much a part of this as Sally’s. Inseparable is his story from hers like braid rope wound, knotted and unraveled so that is where we’ll continue. Lovers and friends are attracted for different reasons. A missing part of the psyche, a mirrored image, a chord struck in the heart, love at first sight. Sam Tall lived single and satisfied a good long time. His likes were varied—baseball, social justice, reading (newspapers, books and the funnies). His opinions were strong—psychiatrists and therapists are charlatans, a skilled work force is the economic key, over consumption is the downfall of current society. In short Sam Tall was a curious soul with informed opinions who was drawn to what he has described as ‘the exotics’ of cultures and women different than his own Mid-Western American laboring ethic.

Fate conjured a plan for both Sam and Sally when one day Sam found a colorful envelope in his mail box written in an unfamiliar hand. Letters, newspapers and books were among Sam’s varied likes. In the lines of that first letter Sam and Sally would begin a life together based on stories written by hand. Like this tale, a story made up and written by hand begins because fingers set to write thoughts down. But the journey of any tale will find its way with scant regard to a narrow plan. Two people always start from unique points on the continuum and given time a commitment grows between them, or not. There must have been a longing for love in Sam Tall when he read, reread and then answered Sally Round’s first letter because that is what happened those many years ago. The love of letters, words and stories were a shared ‘like’ for our two dears and would serve as platter to the mixed banquet of experiences to come. Sam’s curiosity about culture and woman was answered when he set out to spend his first summer with Sally Round. He had room in his heart for Sally Round and in the end isn’t that what love needs? “How much room did tall Sam have for his Sally?” Well, let me say he had thousands of miles worth of room for the Round gal.

By the time this tale began its recording Sally Round had finally found a doctor who could name the poisonous apple illness: MCS or multiple chemical sensitivities, an environmental illness. “This illness will change your life. There are things that will help, but the only cure is to avoid all the things that make you sick…it won’t be easy.” Our two dears had crossed an ocean thrice over and drove thousands of miles trying to outrun the environment that made Sally sick. Surely, they thought, there would be SOMEWHERE safe enough to call home for more than a few days at a time? This tale is about two elderly dears who discovered that ‘home’ means knowing what matters.

Things and people have been left behind time and again. Like land turtles Sally and Sam found that only what they could carry mattered. People –friends, family and society in the main have had to decide whether the things that matter to their multiple chemical sensitive friends mattered to them. For half a year our two elder dears slept in their car and parked their mobile bedroom in beach parking lots, driveways and lawns of friends and family. Living public lives with an illness unknown or misunderstood isolates, and that is what it was like. Public yet invisible, illness and homelessness are conditions that our society denies. Political mumble is just so much dank air. The sky is falling on thousands of us every day and every night. Life after dark is a time when the goblins of entitlement and gentrification screen out and isolate the fragile and the sick.
End of Part I of two parts
Read Part II