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| The Folded Napkin (The early a.m. A thin coat of ice had formed on the Lake after temps. dropped at night. This resulted in ice designs. ) |
Have you met Madi? Yesterday, she entered the house, not her's, or the one where we catch a moment of repose and reflection among family or friends, beyond the sparring matches of our own lives. The rest on soft cushions intricate in their floral patterns and tonal compliments kind of places. No, Madi was going to Parliament, that other house, with the flexible yet sturdy frame, democratic seats that are worn in places, padded in pink , brown, blue, green with a dash of purple, and strategically, lovingly maintained for the comfort of many.
She stepped up to the immense and polished door and knocked to see if anyone, the politicians, were at home. As she was admitted to this place of good governance, a giant in children's size shoes, the conversation accompanied her right over the threshold of debate, policy setting/ making and onto the big screen HD Tv of Kathleen Wynne and the Ontario Liberal Minister of Health. The negotiations with Vertex for affordable pricing of the drug Kalydeco, price tag $348, 000 a year for treatment, were taking time and she was simply asking could you hurry it up already. -Benefits to Madi's quality of life, priceless.
This 12 year old girl had a lot of pluck, a polite manner, simple effective presentation skills, a nice outfit, and a calm that would render some adults to shame. Her fortitude and poise was a valuable lesson when juxtaposed with some of the behavior and antics seen in the Houses, ours, and others across the globe. I once witnessed shoes being thrown across the room in a televised parliamentary debate in India. We are no better, here and we all have stories and examples. The real story, Madi, is one you will want to know.
You can find more details and well rounded coverage for this issue of a rare disease, the family's fight, cost and balancing, the network , the challenges on many levels on CBC, Evening news or here Rare Diseases .
WELCOME back. Ok ,you did your homework. Interesting wasn't it and important? OMG, I am such a teacher. :) Let's take the discussion to the next level and centre around the idea of distribution. The pharmaceutical company, as you read, is developing and offering funding for the drugs necessary for Madi to live with energy, strength and a measure of normalcy, that is close to perfect, given her fight. She is sparring with cystic fibrosis and winning, through the availability of this drug, but there is always the next round in the fight. Time is not on her side. As you read, the community, Dad's work insurance and the family are also in the ring, sparring with the cost of treatment. They do have help. I think it would be easy to agree that all the Madis, Joshs, Samuels....______ (fill in the blanks, kind of thinking) deserve our best treatments and this is irrevocably tied to a price tag, cash flow. Everything behind the production of Kalydeco, from distribution, research and yes profit margins, in a tight free market economy, requires expense. Our value system is, indisputably, worth a lot more than $348, 000 a year. Priceless jumps into my mind, yet again, as a simple pointed descriptive term.
As a society, a people we should demand quality of life for our children and tie this to pragmatic , creative solutions for funding. If we are to maintain a healthy, rich value system in conjunction with monetary considerations, we cannot say, "pay up or lose out" to this family, to Madi, to children. The systems, financial and ethical, are indisputably linked ,two kernels of our identity, within our times, our heritage and our society.
The ring for the sparring match needs to open up into spring meadows fenced in by those sustainable forests, on one side, and pot hole repaired roads, on the other. In this resplendent field of battle exists Black- Eyed Susans, Daisies, some Purple Strife, kingly Rods of Gold, grass varieties, the pollinators-the counter to terminators-:) rabbit and mouse holes, that will turn your ankle but are also homes in a meadow ecology. Why do we meander here as allergy season approaches? Because nature teaches us, and writers love metaphors, analogies and hope readers do too for their en light enment, in a busy day.
In a share economy meadow of multifaceted and collective conscience, Madi need not go without. There is a great deal of wealth in the world. We need a fair and democratic idea for distribution in a free economy. Let's look at some of the new keys. 1. Crowd sourcing. 2. Sponsorship programs on many levels around the globe tied to cancer research, education for girls, and many of the big issues of our times. 3. Information: An in depth study into the start to finish process of making these life saving, life improving drugs. -The inside scoop is ice cream, tiger tail. 4. Innovative, creative and practical business models from our leaders across cultures and all industry. We should not underestimate the brain power, creative intelligence of business when harnessed to good cooperate citizenship and sound, sensible investment. Research can go beyond the medical labs. We have begun to see this in the transition away from the cubicle philosophy to be replaced by larger centres and quiet work spaces for choice and movement depending on the job and to facilitate higher productivity or smarter use of spaces for humans.
Madi has already entered the parliament buildings with confidence and calm and addressed a slew of reporters. The media treated her with a respect that allowed her voice to be amplified, her feelings to be broadcast without the push and shove of the usual media scrum. I was in awe, refreshed and thankful for this sign of respect, this measure of control, on their part. As I sat sagging on my own cushy couch, I had the Notepad, with the metal spirals, at hand. The incessant clicking of my pen made the music, as I feverishly depressed the silver endpoint, down up, down up. The story was being told and we only needed to listen. She expressed a wish to feel well, to go on fighting, sparring with cystic fibrosis but with a meadow at her back not in the ring with boxing gloves, the clang of the bell, the fists and surging adrenalin. Her access to medicine would soon end as the cost could not be supported indefinitely. The essence of her message was poignantly felt, from my seat in my small home. This brave girl of 12 was speaking for her right to quality of life, hers and others, in The House. What a simply beautiful, extra special, sampler of democracy. The solution can't be far.
In fact just across the way, in another style of sparring match, this one definitely in the ring, there emerges a winner. Your arm is held high and the announcement echoes out across the cyber space pulsing with excitement. WE win, if I may be so bold as to use this plural first person pronoun. The restoration of a value system we hold dear. One that says that equality is for all people, is championed here. The system was first torn and then repaired through the aid of institutions: sports, courts, owners and more. I am referring to the ousting and fining of the owner of the L.A. Clippers basketball team over allegations of his less than sterling, tarnishing, in fact, racist comments.
I like to believe that there is always an opportunity to restore the balance of things even further. Yes, I am probably a rugged optimist, at times. Soooo I have a few questions. Where does the money go? 21/2 million? This is a drop in the basket, after a tip off the rim, for Mr. Sterling. While I have your attention, I would like to introduce the procurers of said amount to a girl named, Madi Vanstone. Maybe, you would like to invite her to a basketball game? I am sure she loves sports? From what I have heard, just between you and me, the Clippers, The Raptors, the media, the new franchise owners, the fans and whoever else is following this issue, she is quite a fighter, too. You would like her, as you have this connection in common, although your fights are uniquely yours. A portion, small, could go as a sponsorship, the rest of the funds could go to other sponsorships related to your sport and also the fight against racism, in all its forms. I know this is just a solution that allows for more time for finding better solutions but more may come.
From meadows to rings the sparring matches are fought and won. The hope! Our upright value system, credited to us as the only bipedal +highly cognitive,+ feeling species, could be the champion in this complex system of distribution and democracy. Oh, there goes the bell, round 3 and Peace steps into the ring. Yikes, quick change, let's go for coffee, this time round. I step out of the ring, for now, amidst shouts for blood, the curses and the rising receptacle to be filled by the raw and torrid promise of mortal combat . There are all kinds of fights.
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| The Dove |
by Donna Thompson
http://www.theglitchfactory.com Writation
Copyright 2014
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