International MPN News, Science & Opinion

Through the Looking Glass… May, 2012

Vol.II, No.4

Note:

There are new password requirements on some  MPNforum features.

  The Catalog of MPN articles, a hyperlinked listing of all articles published in the Forum with abstracts and photos  and ourList of Patient-Recommended Hematologists are password protected. The password is available to Subscribers.  

The Full Story is here.

(Table of Contents and links to articles found at the bottom of this page.)

Perhaps such secrets, the secrets of everyone, were only expressed when the person laboriously dragged them into the light of the world, imposed them on the world and made them a part of the world’s experience.   — James Baldwin

A village in a cloud


Few of us meet each other in our homes or neighborhoods. We share a different kind of intimacy.  We all come together in the Internet Cloud,  meet in support Lists or on Facebook.  

We exchange e-mails, tell stories share pictures in MPNforum Magazine pages, all through our computer screens. We have crossed so easily  into the cloud, into a space that is at once physical and ethereal, it seems entirely natural.

Zhen

Our computer screens are a deeply  private domain, just a foot or two from our eyes, password protected, a space we use to pay our bills, write our thoughts, figure our taxes, or reach through the Looking Glass to explore new worlds.

 We sit in the same chair, across that same bright screen,  and with a keystroke we summon both the workaday details of our private lives and all our complex relations with each other in our MPN Cloud Village.

 Linked by a rare and potentially deadly disease, we have carved out this MPN Cloud Village in the hollows of electronic data packets and come to know and count on each other in ways not seen since early tribal times.

What do we do when we boot up our computer and open our window into this strange and boneless world of  light and shadow,  this pixellated world of purely spiritual beings held briefly, electronically, in the grasp of passing voltage?  .

We  do what humans do in every environment. We love and fight, we grieve, gossip and comfort each other….and somehow, without bodies, without substance, it all works spectacularly. The leap into the void of cyberspace takes us through the Looking Glass of our computer monitors into a world without boundaries, without weather, without smell.  

A year ago — in space cleared by Drs. William Damishek and Harriet Gilbert — we built our MPNforum village on a hill in that world.

The Internet notice was brief:   MPNforum’s registration expires April, 26, 2012

It’s a good time  for us to come together and talk openly.We knew we were headed toward our first birthday. But when the notice arrived, we had an
 actual birth certificate.  In just tw
o weeks, MPNforum Magazine will be a one year old.  Happy Birthday to all of us.  It’s a good time for friends to gather, look ahead and glance back to see where it all started.

We promised a party.

What greater party can there be than a gathering of blood brothers and sisters, scientists and caregivers,  poets, artists, and clowns — all summoned , all banished  in a keystroke at your command.  Bring back those friends you met in the Cloud and lift a virtual glass to toast our common journey.


And to help make it possible, our birthday gift to you is a Tool, the Catalog of MPNforum Articles.

 The Catalog is an archive of every story published  in our first year including a thumbnail photograph for each, a short description, and a link to the original article.  The record extends from today all the way back to the beginning. (OK, it’s not exactly complete yet, but almost…)

It started with Karl.

 When the first e-mails arrived from Khorak42@yahoo.com to the MPD support Lists,  they were short, sometimes badly spelled, and mostly contained comments on treatments and good wishes,  signed Karl.  Some words of advice, a few jokes,  just out of the blue, a guy with MF  struggling with  his symptoms, reaching out into the void, through the computer Looking Glass.

.By February 2011, Karl was failing rapidly but his sense of humor and his words of advice never failed right to the end.   He died  March 6, a year after he first surfaced. One day after his last post to us all. No one knew his last name. 

I left MPDchat the following month and started MPNforum, recruiting Arch and Jeremy to help get things started. still not knowing what Karl looked like, what his life had been like.

Our first issue featured Karl Kevin Lachevet on the cover…and fired the opening salvo  in a battle against the darkness and shadows that have kept so many of us in isolation.  Those first stories about Karl, his photographs, cellphone in hand, a shock of light hair, glasses, the stories from his wife, Wanda, and daughter, Terra,  all combined to give us a fuller, more compassionate reality of the man.

As MPN patients we found ourselves no longer in Kansas but in the full and colorful world of Oz. We would never go back.

Over the next 12 months as patients, caregivers and scientists stepped forward to share their work and their lives, MPNforum  continued to shine a light on our stories,  our troubles and triumphs, to make it all part of our common experience. We now know each other in ways we never did before.  That’s our birthday gift.  We get to stay in the Land of Oz .  

By the numbers:  In our first year, more than 50 of us combinedf to report on science and breaking news and help bring our private, isolated MPN lives into the “light of the world.” The numbers themselves are stunning proof that the forces that kept us — MPN patients and caregivers isolated and in darkness– would no longer prevail. In an MPN show-and-tell never before seen in our community, we shared our stories and pictures through the computer Looking Glass

The pages of our first issue, May, 2011,  were visited by 1064 of us. Last month alone, 11,325 visitors from all over the globe read the articles and columns in MPNforum Magazine. In all, we published 144 articles and 424 comments.   We will finish our first year of publication having hosted  more than 80,000 visitors to our stories.

But the real story of MPNforum can’t be told in numbers alone. Just page through the Catalog and see the panorama of drama, humor, science, and art  that our fellow patients as well as scientists, writers, editors,  clinical investigators, drug companies, and doctors have brought into our Village  right before our eyes.

‘The List of Patient Recommended Hematologists, barely begun two weeks ago, already has the names of six or seven  dozen local hematologists, a treasure for any of us looking for a doctor good enough to be recommended by his MPN patient.  It’s a beginning, an example of what we can do when we come together to blend our MPN village in the cloud with the fully solid reality of the hematologist’s office on Main Street

An always welcome gloss on news and features has been the diverse voices of our columnists — Arch, Jeremy, Harvey, Patricia, and Mike — sharing their perspectives, wisdom, humor, and insights with us each month. Their words have gotten us off our couches, into our hearts and armed us for medical encounters.  They deserve our gratitude and  an extra piece of birthday cake. This month, Michael’s column on connecting with one another sounds the right note to kick off our celebration.

 A critical element in all our work, the 2012 Editorial Board  is a core group that has moved beyond editorial review and evolved into an advisory and planning cadre, reviewing administrative options and helping  secure our organizational future for our second year…and beyond.  Coming of Age,  a report of a Council meeting presents our plans and budgets for comment by the entire MPN community.

Finally,  each of us individually, at our own computers, populate our community Forum.  That’s why  this first anniversary is cause for universal celebration.  It’s our common enterprise, our common achievement.  While hundreds have participated actively in MPNForum, many thousands more have been”the light of the world,” have played the critically important role of witnessing, responding to the call of the story.

As before, whether you subscribe to MPNforum or not,when you’re ready to add a comment to an article, or tell your own story, or take a hand in editing or producing the magazine, MPNforum Magazine will be here for you… if we’re smart enough and lucky enough to create a sustainable, cooperative and supportive structure.

One year ago, our MPN community had no magazine. Together, we’ve made a beginning.

 Happy Birthday, MPNforum Magazine

Contents, Special anniversary issue

                        Catalog:  Point and Click to 132 MPNforum Articles & Photos (Please subscribe to access.)

                         The List of Patient-Recommended Hematologists (Please subscribe to access.)

 Coming of Age  Is MPNforum about to start running ads?

Research for a Cure  For the Foundation, April is one tough month,                                                                      by Barbara Van Husen & Michelle Woehrle

 Take a Break  Poetry Corner  — by Arnie McConnell


Columns

                         Jeremy on the Road Warrior

                         Harvey on Living in Two Worlds

Michael on How and Why Connect to Others

                         Arch  on Coke Bottle Legs, etc.

                         Patricia on Seven Steps to Visualization

                        

 

Tell your story, express yourself, share your experience.

You can add your comments to stories or write  your own.  We can help. 

Open a discussion with a Letter to the Editor.


Contact: ourMPNforum@gmail.com

Comments on: "Through the Looking Glass… May, 2012" (6)

  1. Zhen, Your “Village in a Cloud” was an excellent read; I so enjoyed your references to “Alice in Wonderland”, what an out of the box thinker you are. Great job, well done. Happy first Birthday, it has been a great 12 months – looking forward to the next 12.

  2. Sheridan Emery - PV'd in CA said:

    Zhen – and All – THANK YOU!!!! Another great publication this month. MPNforum has become my life-line — I don’t often comment but I do read each article and have the FB forum comments forwarded to my email. As Harvy Gould says, I’m currently “Coasting Along” and gathering as much info as possible so that when I need it – IF I ever should, but hoping NOT – I will not be thrown for a complete LOOP!!!! Information and knowledge is SO IMPORTANT!!!! So, HAPPY BIRTHDAY!!! What an amazing year! Every month – good info. Just read Dr. Arch’s info on legs/feet – THANKS – MORE GOOD INFO – now off to do even more research as erythromelalgia is so prevelent with my PV! Walking is the hardest thing I do every day. The pain ALL NIGHT is my companion. Sheridan

  3. Zhen, if it wasn’t for the Atlantic, I’d give you all a hug in gratitude. As a recent widow, I’ve lost my main source of love and support, but thanks to MPN Forum, I don’t feel alone. I’m looking forward to the birthday party, but as it will be early morning in the UK, I’ll be in my virtual dressing gown with a virtual strong cup of coffee. Love to you all, Elizabeth

  4. Nice reading, helping me to cope – knowing you all; thanks for the well done job!

  5. Thanks for this….beautifully written as usual.

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