International MPN News, Science & Opinion

Message in a Bottle

Why Blog?

By Zhenya Senyak

Once I made a trip to the Yale Rare Book Library to copy original material from the poet Matthews Arnold’s notebook.  I can still recall the electric connection felt by just holding that little worn notebook.  Inside were scraps of verse, some illegible scrawled lines, and neat rows of figures totting up the day’s expenses. A shopping list of sorts.

Matthew Arnold’s notebook was a log, a Blog…without the Web. And it’s the Web that changed everything. Because in a Blog, a record of our life is not jotted down in a notebook carried in our vest pocket.  Creator and publisher, we share it, across the Web with the snap of a finger.

 If the jottings of our days, shared across the Web, is the essential Blog, then pretty much all of us blog, often. It’s a means to pop up, exchange views, say “here I am.” message-in-a-bottle Personal e-mail, FaceBook postings and texting as well as formal blogs published on established blogging platforms all convey the same message.  Lengthy, illustrated stories or haiku-sized tweets are both forms of Blogs. Even the exchange of views on support lists often have bloggish elements.

Here I am.

Matthew Arnold’s Dover Beach may have established positioning for a generation “between two worlds, one dead, the other powerless to be born,” but his notebook sketches for the poem were never designed to be shared.

Thus, the essential nature of the personal Blog.

It’s like a message-in-a-bottle tossed into the oceanLike a GPS tracking system. The personal blog establishes the coordinates of our lives – “I am here, this just happened, I am going to “ – and broadcasts them to a tribe of followers, a family, a community. The message, “Here I am” is critically important. When the whole universe is outside, we are each obviously the center. Sending out our coordinates is a kind of public service to the rest of humankind.

As opposed to Public Blogs…blogs created to sell us something, an idea, information or a product.  Portfolio blogs, product blogs, political blogs. public service blogs.  From a media perspective, these are the least innovative since they simply port over the old print and broadcast advertising formats into the Web. There is no “Here I am” element. The message-in-a-bottle public blogs toss into the ocean is, often, an order form.

MPNforum as hybrid Blog

Hybrid Blogs like MPNforum present the façade of an on-line publication using the WordPress blogging platform.  Here a mix of personal and immediate stories and reporting of events using objective journalism criteria mash up to present a form that is neither fish nor fowl.  Another version of the hybrid is Andrew Schorr’s PatientPower, an openly commercial enterprise that blends reporting and personal stories with staged video interviews.

Viewers can easily tell the nature of a blog from its urgency to convey the physical, spiritual or emotional location of the blogger: Here I am.

The MPN Blog

By revealing our personal experience of MPN blood cancer, we break through from the singular to the plural: “We are here.”

We can do this because we share a land in common. Our corner of the universe is a place of Exile, Few of us have come here voluntarily.  We were kidnapped by MPN, our lives abruptly changed. Once we cross the Ellis Island of our confirmed bone marrow biopsy, this new land and its new language, these new sights and sounds and citizens, make up part of our new realities. And so we blog.

In our MPN Nation., where chaos rages within our bones, we have little control over events. But we can  shape our experience by blogging.  We order events by creating and sharing a story. For some, blogging provides an escape from the crippling despair that trudges in the footsteps of fatigue.  We express our fears and hopes. In creating and reading our blogs we find each other.

Finding our own MPN Blog

The fastest growing sector of MPN blogging is not the formal blogging platform but Facebook. The ability to pop up at will, Like or Unlike a comment, drop in a post or respond, all in an instant is a powerful draw. We can contribute soundbite, tweet and text, with a photo or video tossed in, and be on our way in seconds…or hang out for awhile.  There are times a longer visit, a full description of a critical event, for example, is required and then we can head for our blog. But there are times all that’s necessary is Here I am…and then I’m gone.

MPN Facebook sites have several thousand combined members with overlapping membership. Myelofibrosis, MPD Myeloproliferative Disorders, Polycythemia Vera Support and Essential Thrombocythemia are not only MPN phenotypes but the names of some Facebook groups, each with hundreds of members. Facebook is an everyday option of many of us take to weigh in at the calling of the roll.

The rest of this rant is for those who want to launch their own MPN Blog.

There’s every good reason for us all to build and maintain a blog. It’s engaging, creative and transformative. It’s a way to pay forward while paying back.

MPNforum has a selfish interest in promoting the MPN Blog.  Presenting the unmediated voice of the blogging MPN patient or caregiver is the purest means of fulfilling the most difficult part of our mission. We can interview and we can profile but nothing approaches the living, dynamic reality of an MPN Blog to forge connections in our community. We want to publish MPN Blog excerpts and lists of MPN Blogs.

If you want to start your own Blog, here are a few basic resources:

Some major Blogging sites, all free, all easy to use:   WordPress.com   http://www.wordpress.com …  Blogger http://www.blogger.com …  Jux  https://jux.com/,,, Tumblr https://www.tumblr.com/   … Caringbridge  http://www.caringbridge.org  dots sml   

A good article to give you the highlights of each major blogging platform:   http://www.techhive.com/article/2025931/which-free-blogging-platform-is-right-for-you-.html dots cml cropped     

A listing of 25 blogging platforms:http://taimoorsultan.com/list-of-25-blogging-platforms//

 
finger pointingA great resource for all things MPN is the MPN Research Foundation Blog at www.mpnrf.blogspot.com In addition to Foundation news, views and video clips, there are guest blogs to discover. Contact Michelle Woerhle: mwoehrle@mpnresearchfoundation.org

If you want to create an MPN blog of your own on WordPress, we’ll be happy to help you get going and answer questions along the way. (I’m not sure WordPress is the best platform; It’s just the only blogging one we know enough about to lend a hand.)  Contact: zhenyasenyak@gmail.com.

Take me back to the Contents

© MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission is prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.

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