MPNforum Magazine

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On death and dying

 The Gift of Myeofibrosis

Embedded in the husk of pain, discomfort, weakness and stress that surrounds 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 its 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.

–Zhen

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