International MPN News, Science & Opinion

Mayday – May 2012 Contents

Vol.II,   No. 4

 

 

 


On death and dying

 The Gift of Myelofibrosis

by Zhenya Senyak

Embedded in the husk of pain, discomfort, weakness and stress that surround our chronic blood disorders is a secret we all know. 

There is a gift, an excitement, a bright light shining over our lives.  From the time we fully understood our diagnosis, we have had our delusion of immortality shredded.   Our impending death bestowed fresh meaning, poignancy, sharpness on our days.

Not permanently, of course.  We creep back under the warm blanket of our own myth of eternally enduring life at every opportunity. And how could it be otherwise?  How could we go about doing dishes and shopping, transacting business while constantly staring down the voidy dark space of Eternity?

Usually, myeloproliferative neoplasms impact our organic lives gradually, over months, years, sometimes decades.. Often indolent, sometimes surging, the progress of an MPN may be inexorable but its trajectory is obscure. As a result our death sentence is folded in a deep mystery that permits us to go on about our lives…until we cannot.

The immediate prospect of our own death, once proclaimed and scheduled, keeps us bouncing on the bungie cord of perception, the idea never quite out of consciousness, a precipice under our feet.

We are accustomed to hearing our MPNs described in technical, medical terms, words that shift meaning under the impact of growing biotechnical knowledge.

What we rarely hear about are the human parameters of MPNs – the emotional, spiritual and social elements that accompany every diagnosis, every prescription, every progression.  It is almost as if our blood cancer is a medical condition occurring to someone  — or some thing – else, independent of us.

It is a great error, I think, to consider our MPN as purely medical.  Our death, like our life, is deeply personal. Whatever combination of events brought about our MPNs, we carry its effects within us as do our family and those closest to us.

ET doesn’t exist outside of our lives.

PV is not a phenomenon independent of its human habitation.

Our days incorporate our myelofibrosis.

And when it’s time to start our dying, when it is end times for this life, how shall we die?

In times of pain, of weakness and sickness, can we die in such a way that completes our life, can we find a  calm space to be complicit in our dying, to surrender, to render our bodies back to it origins and slip our moorings on our final exhalation.

Can we die well?

It’s never a question of medical technology, although we are grateful for the easing of pain, improved health and energy coming from medicines and surgeries. Life extension itself, through extraordinary medical intervention, seems an unalloyed good. We don’t want to die. Our loved ones don’t want to see us go.

And yet…by medicalizing our death – by relying on medical options to extend our lives —  we risk losing the calm moment of grace  the joyful spiritual and emotional experience of our final moments.

Death is the completion of our life.  May we be present for it,

An image, a life and death:

Nowhere can the human chrysalis in its cocoon of flesh be observed in all its becoming as in its end days. The thinning of the skin, that boundary between Self and Other, thinning and scaling, spots and surface hematoma to mark the decaying outer layer of Self.

            This loss of fat and urgent juices, this emerging transparency of the skin, the frontier between Us and It, prepares the way for exit of the full born Soul. As in the beginning, a luminous drop of semen and egg was conjoined in a globe of being, a cellular liquid molecule unsustainable until clothed in bone and flesh and fitted out for its terran life under the sun.

So at the end, the promise fulfilled, that Self emerges to spread dark wings against a bright sky as it flies home.

.

Contents: 

                        Catalog:  Point and Click to 132 MPNforum Articles & Photos 

                         The List of Patient-Recommended Hematologists 

A Village in the Clouds.  The realities of our cyber life

 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

                        

Mayday!

We need you to subscribe. It’s fast, it’s free, and it helps us more than you’d believe. And it’s easy. The SUBSCRIBE box is at the top, right of every MPNforum page

We’re swamped. All of us working on MPNforum are dealing with our own MPNs.  And struggling to keep it together in these months of fast-breaking news of revolutionary genetic breakthroughs.

Taking time to post individual notices of publication to thousands of MPN patients and caregivers…and post to sites… takes days.   But it takes only10 seconds to send a notice to our subscribers.

.And when the monthly MPNforum Magazine goes to press, we have the job of getting the word out,  individual e-mails to folks in our community, posts to various websites.  It takes two days. 

Some of you have helped with donations, Some of you have helped with volunteer time. Please, help us out by subscribing.  It’s free, it’s fast.  And you don’t even have to change your routine since you’re reading the Forum right now anyhow

 Many thanks,

 

Tell your story, express yourself, share your experience in your MPN magazine.

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

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Contact: ourMPNforum@gmail.com

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