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 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.
Comments on: "On death and dying – the Gift of Myelofibrosis" (17)
Beautifully written, my heart has been touched … what frail humans we are without God in our lives … God Bless every family dealing or experiencing the loss of losing a love one . Thanks
I am still in fight mode. I was recently diagnosed and have hope of prolonging life or even a possible cure. I have six children and I want to see them happy in their lives. I want to live each day to its fullest.
Of course, Lori, and how could you do otherwise? I think, in this piece written more than three year ago, I was more concerned with us identifying with our MPNs, with medicalizing our lives — an our deaths — and losing sight of the awesome journey our passage truly is. The idea of myelofibrosis as a gift was deeply felt, sharpening perceptions, stripping away frivolous activities in face of mortality. There’s no rush to prepare for our own end times. In all our components we have always been here, we will always be here. We are home. Thank you for writing…and, yes, a cure is definitely near.
i have become a ambassador for 23and me they are doing research on mpn’s please contact me for more info at firstname.lastname@example.org please let me help you it is a free DNA test and will give you lots of free info
so very well said
I agree with Rosemary. There is pain at the beginning of life with a mother’s labor and at the end with the grief of loved ones and there is certainly pain along the way, but in each case there is much to hope for and look forward to.
Thank you so much for putting in to words how I feel at times. I have PV at the moment and am hanging on that “bungie cord of perception” with a loving family and frinds that don’t quite get it as I look “okay”. Your way with words has always given me food for thought, touched my emotions and confirmed for me that there others who know how I feel.
Wonderful Zhwn- thank you. I found this piece uplifting and hopeful. I am not sure how you did this- but you broadened my perspective of my “disease” to my life.
Very interesting – something to ponder. Mary, Remember that many people that have an MPN will die from something else that is not related. The person across the street from you could slip in a bathtub and pass away. I know some people who have had an MPN for 30 years or more and are doing very well. Remember that new medications are coming out daily and that positive thinking, faith and hope are a way to healing; miracles happen every day.
I guess that there is so much to know and not to know and if it was for me I could accept. But it is for my son who is in the process of diagnosis and ??? treatment. Your post hit me in the guts and I have been unsettled all day by such ponderings. Maybe now is just not the time for me to accept as you obviously have had to.
My God Zhen, that is absolutely beautiful. Thank you for that.
I have decided to leave this group because I cannot bear to hear this. I looked for hope and support, not hopeless inevitability. Goodby before I even got to know you.
Hi Mary…Hope and support come in many forms. And just as recovery and new drug discoveries are part of our MPN world so too is frustration and failure. Hope and support are most needed when inevitably some of us weaken and succumb. We can look at instances of undesired outcomes but it’s hardly hopeless. I think the point of the piece was death completes life. I like what Rosemary said, Our life is a process, and death is part of that process. We can do this fighting, kicking and screaming. Or we can go out with grace and hope for what is yet to come.” It’s easy to leave the group I hope you consider a more difficult, creative and hopeful option: Joining in, sharing your concerns, contributing your experiences.
Wow..so sad. I guess I am not ready for this line of thinking.
As always, beautifully written in a mythical and mystical manner. You have a gorgeous way with words that benefits all of us. Thank you.
Very well put. I really liked the phrase, “full born soul”. Our life is a process, and death is part of that process. We can do this fighting, kicking and screaming. Or we can go out with grace and hope for what is yet to come.
So true…so beautiful. Thank you Zhen.