The writing that follows was inspired by my long term friendship with a man diagnosed with terminally malignant melanoma. His energy is now devoted to just getting through the day with as much peace of mind, and with as little chaos, as is possible under the absolutely overwhelming conditions of his declining life
Mr. M. communicated to me his sense of being inarticulate, in relation to the new experiences of his deteriorating state brought about by metastatic melanoma, and the encroachment upon his critical brain centers which had already begun. A life transitioning from being
- highly engaged with the culture and the world, and immensely supportive of his wife while doing so,
- physically healthy and active,
- spiritually, intellectually and technologically stimulating and expressive,
- at times exciting and challenging,
- occasionally joyous, and,
- regularly immersed in family and social interaction,
to one that is
- physically inactive, and almost home bound,
- threatened with the loss of intellectual competence,
- challenging in anxiety producing ways, and
- humiliating, depressing, and emotionally painful, and
- without normal joy and hope for the future, and
- devoid of physical intimacy with the wife,
- immersed in family connections, but now not under the old rules, and
- a myriad of other less than happy adjectives,
And attempting to describe the changing experience, while still in the middle of it, is a most difficult proposition.”
A story came to my mind after our morning’s meditation, of which I sent to Mr. M in text message form, and I include parts of it here as a small record of our journey together.
“Mr. M , all of your descriptors are perfect, and they will change, as you change. While in meditation, the following images came to my mind:
Life can be like a lifelong adventure hike (perhaps the Pacific Crest Trail of everyday life?). On one side of the trail we are witnessing the unbroken beauty of nature and of our own wholeness and connection to it, and the joy of unfettered movement of an innocent mind and healthy body while walking through the magic and mystery of the unknown. Yet, on the other side of the trail, a wicked forest fire has erupted, obscuring our view, threatening our safety and freedom, and taking us out of the beauty and wonder of the new moment. Its flames are now, more than gently, lapping at our back side, burning away at our past, burning away at our clothing, at all of our hiding and holdings, and at all the knowledge and memories that we cling to, and hold so dear.. When you search for names to characterize this process, I understand at the deepest level why it is hard giving it a new name, or calling it “good” or perfect while still being so painfully “burned” by one aspect of it.
Losing independence in life and in decision-making is a most difficult proposition.
Losing the ability to get out of bed and go to the bathroom in the middle of the night by oneself can be demoralizing.
Losing the ability to plan for the day-to-day exigencies of life can make one feel less than empowered.
Losing the sense of intimacy with one’s partner, who is now more or less the primary caregiver, and not the lover, feels a bit like love has abandoned us for now.
Losing strength and mobility, and being dependent on another for all movement around the house, and now, around all of life, feels like life is almost stripping us of our dignity.
Losing control of one’s bladder and bowels, and wearing supplemental underwear, and the insertion of pads onto our beds to trap our incontinence, can feel like adding insult to injury.
Losing the use of the left arm and leg, and then not having others respect one’s sense of loss, feels like the world has become insensitive to all suffering individuals.
Losing the desire to keep living on dying’s terms, while all of the other losses kept accumulating and accelerating, can make the thought and actions related to Death With Dignity an attractive option.
Yet, your journey, with this measure of suffering becoming folded into it, is part of humanity’s unbroken wholeness, of which we all remain a most treasured, though challenged, part of. Can you begin to trust that Love itself is always guiding, and coming out in its many new, challenging forms? Love is soon to become your new and only garment, and any holding back will only increase your pain.
Mr. M, our hike on the path continues, and the “forest fire” always burns (it burns for all of us). Hope and expectancy tells us to keep walking, because the “view ahead is always changing”. But, what was our past continues to burn away in uncertain and many times anxiety producing ways. Around one of those next bends in the trail, there is only the unknown, bringing whatever is to come. And, also around that same bend, the “fire” will have burned away all that is unlike your true nature, revealing who you were “in the beginning, before the World was”. Giving it a name is the challenge unique to all of us. The articulate ones write great books, and attract lots of attention to their words. You don’t need that.
There are already many fine works available for the curious to read on the subject of death and dying, but your life is now your greatest teacher. Now that we finally have realized that facts and knowledge alone are not enough support to make all of life’s decisions with, we can willingly enter through the doorways to a new spiritual awakening, populated by creativity, intuition, and insight, where transcending many of the troubling aspects of the ego, and finally accepting the inevitable deaths of our bodies, becomes more likely.
Transformation, and death, can be so closely related that many people have profound spiritual experiences on the final stretch of their life’s path. Yes, I had a “death” 31 years ago, and people who knew me before the change, and then afterward (and who were not my direct family members) witnessed them. I was accused of being a “walk-in” by a friend from the 90’s (one of those “new age friends” I met in one of our men’s group from LEC), and I too was at a loss of words to articulately describe the death and dying process that I went through, let alone this subsequent “resurrection” that I am currently living through.
Thank you for reaching out to me in your time of greatest need. I am honored that you regard me as “the best thing you have done recently” when you got me to become involved in the OHSU Men’s Cancer Survivor’s Writing Class with you. To have a published author and Dr. in Philosophy, a highly intelligent and sensitive facilitator and several others over the past few years giving mutually positive, life affirming feedback on all of our creative writings, rather than the mixed bag that many have grown accustomed to receiving in our normal life experiences, is a revelation of sorts. Thank you for honoring and respecting the words that we all write, and the words that we directly speak to each other. Thank you for involving me in a process where I can listen with my heart and mind at the deepest level to those creative urges and surges that we all share in. Thank you for allowing me into a process where I can give you extra love and attention, and draw you away from the trials and tribulation around the home long enough to give you a sense of release, and relief.
You and me, we are both on the same path, though I experience it differently right now than you do. I “die daily to all that was myself”, through a process of personal inventory, mindfulness, and insight, though small parts of the old me pops up and reminds me that I am still human, and part of this glorious mess that we call humanity. Yet, right now, what seems to be different between us is that I have, more or less, a fairly secure sense of continuity between the past and the present, and I still experience the “illusion of control”. Of course, your fine engineering mind rebels at all thought of loss of control, even while personally witnessing the dramatic effects of that powerfully humbling experience.
It is really messed up to finally find ones place in life, one’s most healthy relationships with new and old friends and family, where healing and acceptance FINALLY reside, TO FEEL LIKE WE HAVE FINALLY BEEN INVITED TO LIFE’S PARTY, AND THAT WE TRULY BELONG, and then have a disease process creating conditions that feels like a rug is being yanked out from under us, the very rug that sustains our connections, and our future. It can feel, at times, like life itself is rejecting us, while our body continues the profound ejection process of our life force.
I parked myself on the outside of humanity for much of my early life, because I never saw or felt the welcome mat set out for me, by my early experiences of family, or many of my early relationships. And I was not skilled enough to create a welcome mat for myself among the diverse groups of people who I met through school and work in my “pre-30 year old” life. Most relationships with males were troubled, and too many men seemed to be dominated by the aspect of the Common Knowledge Game that included judging all others unlike ourselves as bad, ignorant, stupid, ugly, and undeserving of further positive regard, unless there was some obvious economic or personal power gain to be made from the relationship. I gravitated towards girls as friends, as a child, and then women as a maturing human, as they did not play the “put down” game so profoundly as my male peers and authority figures did (at least the women I met and befriended did not). I clung like a drowning swimmer to an inner tube to any male friendship where I was accepted, more or less, for who I was, without having to accomplish superhuman feats of accomplishment to just “fit in”.
Toxic Masculinity is the cause of so much suffering in the world, and the cause of some of our own suffering, and, at times, I am still repulsed by the baseness, cruelty, and ignorance of many males. The spawn of Toxic Masculinity is Toxic Religion and Toxic Capitalism, and thus the whole world suffers with us. I will try not to get too political, but the election of the POTU$ was a gut/sucker punch to us. We have been victimized by this type of male energy, as well as most women and children (though many do not understand the “following the herd” and the sexual dynamics behind it), and, when I was younger and more unconscious, I probably victimized others with my “masculinity” as well.
My past unwillingness to talk or write much stems from being shut down for much of my life, by others who did not want to listen, or did not have the time to care, and my unconscious involvement with the Common Knowledge Game, where I let the opinions of others, or my perceptions of the opinions of others (another deadly creative twist of the illusory mind) drive my own unique expression nearly into the grave. Your story of your relationship with your father resonated with parts of my own past, and self-esteem issues certainly arose through our fathers’ own lack of insight, and limited ability to be emotionally present in supportive, meaningful ways.
Thanks you for caring, and for listening with your heart. And know that I give to you all that I am, and all that I have, as well. I hear you, Mr. M, and I know that there is much challenge ahead for you. Yet, “ahead” will not be done in isolation, or away from your family, and your friends. The miracle for both of us is how our hearts merged at this most troubling of times. This is one of the “great unknowns to be experienced” around each bend of our life’s path. You will experience many more “great unknowns”, as the release process continues.
I will walk with you, in freedom, to whatever extent we can,
I walk with you, in pain, while we must,
I will walk with you into the unknown, where we will eventually recognize nothing but Spirit, as we release ourselves from our bondage to our deteriorating minds and bodies,
I no longer will burden you with thought experiments for personal transcendence.
I will no longer advocate for prayer or meditation for you, nor will I withhold from you any potential benefit derived through my own relationship to those processes,.
I will walk with you into death, each in our own time, and in our own way,
I will integrate part of my individual destiny with your own, and, ultimately, join with Destiny itself.
I am grateful to have you as a friend. I am also grateful to share with you in the good intentions and prayers of our spiritually inclined/religious friends and family.” We all mean well, perhaps with some of us needing more targeted training in supporting you in the way that has the deepest meaning and significance for you.
It is quite appropriate that my wife, Sharon White, chose for her lone published book the title
“Whose Death Is It, Anyway?”
It is all of ours.
Please save yourself
Blessed Longing,
by Goethe
(Translated by John O’Donohue)
Tell no one else, only the wise
For the crowd will sneer at one
I wish to praise what is fully alive,
What longs to flame toward death.
When the calm enfolds the love-nights
That created you, where you have created
A feeling from the Unknown steals over you
While the tranquil candle burns.
You remain no longer caught
In the peneumbral gloom
You are stirred and new, you desire
To soar to higher creativity.
No distance makes you ambivalent.
You come on wings, enchanted
In such hunger for light, you
Become the butterfly burnt to nothing.
So long as you have not lived this:
To die is to become new,
You remain a gloomy guest
On the dark earth.
