[Cancer]
[cancer] The hour and manner of my death
I’ve been thinking a lot since the surgery, as I’ve emerged from the post-operative fog and am working my way along the paths of pain. The new metastatic tumor sites uncovered during the surgery make things a lot more serious than they already were. And that is saying something. I have not given up seeking a cure — hence the genomic testing of my tumor — but it seems highly likely to me I will go terminal within the year, or at best, sometime in 2014. Even then, it will take time for me to die, possibly up to another year.
Just lately, I’ve been seeking some meaning in all this. Given that I’m a low church atheist1 and a strong rationalist, I’m perfectly aware that the universe doesn’t carry meaning, per se. It just is. Meaning comes from the interactions we as thinking, ensouled2 human beings experience with one another and with the universe at large. Meaning is what we make of it, to be found where we assign it.
Death is the least surprising part of life, after all. The only certainty you can assign to the prospective life experience of a newborn child is that they will someday pass away. Everything else is a combination of luck, circumstance, training and experience. Yet we live largely in the pretense that death will not come to us personally. Many religious narratives are framed around mitigating the impact of death through reincarnation, an afterlife, or some other form of immortality of the essential self. Comfort for both the future decedent and the bereaved. We seek to reverse death in so many ways, to transform that most unsurprising of events into a surprise which can be safely deferred or ignored.
Obviously I do not know the precise hour and manner of my death. But I know it will likely come in the next year or so, and it will come due to organ failure and the related system breakdowns as my cancer advances. The bullet with my name on it has been inching towards me for almost five years. I can watch it spiral in the air as it lazes ever onward toward my as yet still beating heart.
This is the most frightening experience of my life.
But I don’t want to die in pain and fear. I don’t want those around me to live in pain and fear. Sorrow is inevitable at the passing of someone beloved, but I want my passing to mean more than months of dread and a final death watch.
I don’t know how I will make that meaning take form, or even if I am wise and patient enough to do so. This isn’t about glamorous soap opera diseases or Special Dying Person wisdom. I just want my love and friendship to be more powerful than the disease which continues to erode my body and perforate my soul.
If there is any joy or sense to be found in knowing the hour and manner of my death, I hope to find it.
1. When I say “low church atheist”, I mean I’m not of that mindset that seeks to deconvert others or discredit religion. This in contrast to the “high church atheist”, who advocates strongly against religion in all its forms. (Yes, I will have my little jokes.) My quarrels with persons of faith begin and end in the public square, where I firmly believe based on ample evidence that a rational secular humanism best protects the rights and freedoms of everyone, regardless of their faith. In the place of worship and in the home, believe what you will. As I’ve said before, I will defend to the death your right to your religion, and I will equally defend to the death my right to be free of the strictures of your religion.
2. Yes, I know I’m an atheist. When I say “ensouled”, I mean that part of the human mind and experience sometimes described as mythos — the part of our minds that partakes of spiritual experiences and perceives the world through filters other than rational empiricism. This in contract to logos, the rational mind. I’d be a fool to deny that the spiritual dimension exists, especially as given that I’m a writer, I see how strongly story telling taps into those deep, deep wells. What I don’t see is any reason to believe that the soul is anything but an emergent characteristic of the architecture of the human mind.
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Posted: 7:22 am Thu January 31 2013 |
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This has to be tough. I don’t think I could face this without my Christian beliefs and, from that standpoint, would be spending my time reading from the Psalms and book of John. So I guess I don’t really have much advice other than to say that I hope you know there are many who understand your fear and pain and we are rooting for you and for your recovery.
Having had a couple of moments when it appeared I had one foot in the grave, I also know that there’s a tendency for those around you to pull back and put emotional distance between you and them (I especially noticed this with medical people). So you may need to reach and and gently remind folks that you are still there, you are still alive and kicking, and they shouldn’t start mourning until the worst comes. Likewise, while it is good to be aware of your mortality, you aren’t dead until you’re dead — don’t give up when you still have even a few days left to enjoy.
I’m sorry I don’t have much more than platitudes for you. Possibly there are councilors who can help you through this time as well (?). You message seems in many ways a call for help and I’m hoping you’re persist until someone steps up to the plate to offer the answers and help you need. In the meantime, I will be thinking of your plight and (yes) even saying a prayer or two for you.
Thank you, Duncan. Just to note, this isn’t really a cry for help so much as an exposition of my thought processes and emotional journey. I am blessed with supportive friends and family, a good therapist, and good doctors who listen carefully to me.
Beautiful sentiments beautifully expressed. You are amazing, Jay.
@jay_lake holy crap, man, that’s awful. Death may lack meaning but I’m certain your life and work has created plenty of it, for many.
@jay_lake Speaking of your work, what’s a good book to start with?
Inspiring words, Jay.
This post really moved me. I wish I had some words of wisdom or comfort to share with you, but I … I’m at a loss for words.
Thank you for sharing your struggle with us. Hoping for a fast and relatively painless recovery as well.
@jay_lake Aw crap, man. Horrible stuff, beautifully expressed.
.@jay_lake strong and powerful words in that entry. My heart aches to see anyone suffer this ultimate fate let alone you. Thanks for sharing
Glad to hear this. It is tough enough without going it alone.
Thank you for sharing. When my time time comes, I hope to have this kind of dignity. Bless you.
Thank you for sharing. When my time comes, I hope to have this kind of dignity. Bless you.
I think that the expressions of your journey through this, as you dodge and parry from that seemingly inescapable bullet has given it all meaning, for sure. I am consoled in my worry and grief for you and yours to know that you are surrounded all the time by love (for that in your dispatches has been unquestionably clear).
Keep fighting, Jay. We’re all behind you. I continue to keep a candle lit for you.
Death comes to us all, fast or slow. As a society we have done our best to divorce ourselves from the inevitable ending — put it away as if it doesn’t exist, sweep it under the rug, protect the children. As if any of us can be protected. I honor your grace in dealing with these difficult things.
Like is the for the beauty of the post, not the news.
It is a priviledge to know you. Your voice will live inside my head for as long as I live. I have no evidence of God, but I have faith in people who love us, and draw closer when we need them. All any of us can do is love each other.
Jay, sending love and a good juju that you are able to have what you need and wish.
words don’t suffice to express that you will be missed
Your grace and dignity are inspiring. Thank you for your words.
Jay, you are a thoughtful, rational, and passionate person as always.
People being honest about what it’s like when you start to have glimmerings of the hour and manner of death is valuable to all of us. With luck, it may still be long delayed!
Very profound, very moving. Thank you.
Thanks for your courage, Jay.
Your honesty and clarity are amazing.
Jay, I realize our short association doesn’t give me any privilege and I don’t mean to be annoying or intrusive. However, I do believe your work in writing about your disease is profound and important. For those of us who write, at least for me, it’s inspiring to see you blasting away it it, with thought, love and skill. You’ve been very clear about your odds, so we know the score. Yet, you keep showing up at the page. Your effort exalts the craft and your place in it. I don’t mean to be hokey, but even as I read what your experience is–and feel sorrow for what you are going through–it’s also moving. I don’t know if it’s a comfort or not (and that would be a question I’d have) for you to know that your thoughts, written down, communicate and will do so after you are gone, just as you wrote them. However, I know I will always think “There’s Jay. Wow, what a tough, good writer. That’s a lot of live up to.” I’ll think it whenever I read something of yours, just as I think it now.
Thank you, Ben.
With grace and style, you hold a light of keen intellect that illuminates the dark path ahead of you — and share what you see with us, who follow you. Thank you.
Thank you, as always, for sharing your thoughts, Jay. I wish you as speedy a recovery from surgery, as possible.
Your thoughts are very valuable to me. I don’t seek out readings about mortality, but the ones I trip over are usually flavored with mainstream beliefs. It’s powerful to hear from you, because (a) you share my exact view of the sources of meaning and (b) you are staring it in the face and yet through the terror you are thinking hard — which is what we meaning-is-what-you-make-it folks have to do. I read this post out loud to Martin and he too was awed. Thank you.
This high church atheist fears an unexpected, sudden death with the consequent inability to sort matters out, and with things unsaid and undone. As you said recently, live, love and laugh every day, and do more in one week than many do in a year. Cancer may affect many organs, but you can stop it affecting your heart. Go out in a fucking huge blaze of glory dude.
Sending my best.
Well clarity and honesty are sharp here. I wish you the best though.
Thank you for being honest.
Hugs.
Jay,
It’s difficult to adequately express my admiration for your willingness to describe your plight and how you are dealing with it. You are obviously blessed with a fabulous community of supporters, both those who know you well and those of us who do not.
Your unflinching courage in the face of your illness has been as moving and powerful as anything I’ve experienced in my 68 years. Your concern for the people around you and how they are being affected by your plight demonstrates a very large soul.
I think it may be the curse of mankind to seek understanding and meaning where none is possible.
Each of us has experienced the horrific injustice of people dying too soon or too hard. The only thing which can give meaning to our deaths is our lives. Your life has been far more meaningful than most.
Your blog on cancer is quite important. Tomorrow I take my wife for a follow up visit after a colon resection. They place her at stage 2 (no lymph node involvement) and we will discuss a plan of care. I will get an oncology referral even if they tell me it’s not necessary. Your post on mortality hits home with this reader–thanks for your help,
You are most welcome. Good luck and good health to your wife.
‘The system is very much stacked against sick people, and the terminally ill. The time, mental energy and organizational skills required to navigate all the nonsense is overwhelming, at a time of life when people are the least prepared to deal with that. I’ve come to realize this is a great moral failing in our society, one that we are largely blind to, and which we make excuses for when confronted.’
I don’t know you, Jay, but you have touched me with this. Respect.
[...] [cancer] The hour and manner of my death »01-31-2013 [...]
For what it’s worth, I wrote this 2 years ago the day before a drastic cancer operation and my chances of surving to write this seemed slim and none.
AN AGNOSTIC’S PRAYER
by Norman Spinrad
agnostic (common definition): someone who neither believes nor disbelieves in God
gnosis:literally knowledge
gnosis mystical and philosophical definition: direct experience of the transcendent
gnostic: one who believes that faith or the acquisition thereof must be based on such
direct interior gnosis rather than dogma or scripture.
As I write this I’m sitting in a hospital bed with stomach cancer after a serious setback, and because of who I am, all I’ve written for four decades, and my connection to extensive networks of good and caring people all over the world, I know, because they have told me, that many people, some believing Christians, Jews, maybe Muslims, are praying for me to the versions of God in which they have the sort of faith that I do not, some like me, agnostics, but giving it a try.
I am encouraged and deeply touched by all these prayers, and I somehow feel guilty for not being able to join them with prayers of my own, for obviously I would like nothing better than for my prayer and theirs to reach the ears of a benevolent, loving, omnipotent God who will then rescue me from this grave disease.
But I’m a gnostic, I suppose, I only believe in what I know or experience. I have had what I do consider transcendent experiences, and indeed over 4 decades ago one of them did save my life. But when it comes to such direct experience of the grace of Jesus, Jehovah, or Allah, I remain agnostic, having never been touched by such a thing.
And so, an Agnostic’s Prayer, 100% in public domain, do with it what thou wilt:
Dear God, Jesus, Jehovah, Allah, or similar caring, loving, transcendent being by whatever other name, I don’t know if you’re out there, but if you are give me a sign, touch my soul, fill me with your grace, and thereby prove to me that you exist.
By whatever means you choose, by whatever means necessary. That’s not really very much to ask from such a God. I ask for that now, and for my personal salvation afterward, only when and if I know in my heart and soul that I’m not whistling Dixie and praying a Hail Mary into nothing but the void.
All believers in you wrestle with the problem of evil and injustice rampant in a world supposedly created by a deity who is omniscient, omnipotent, loving, and just, a glaring paradox which can neither be denied nor explained by any scripture or logic. To worship such a god blindly, a god who is the moral inferior of his human creations, is to simply bow the knee to superior power.
Of course those who do not believe in such a god have no such problem, not believing that any natural morality, goodness, or for that matter evil, is inherent in the structure of the universe.
So God, Jesus, Jehovah, Allah, or whatever caring, loving, transcendent being by whatever other name who may be out there hearing this prayer, give me a sign. I’m not praying for a burning bush or a physical manifestation of any kind, just the grace of gnosis of your existence in my soul and in my heart.
And then I will pray to you for my salvation as so many believers already are. And then I will, like them, pray for the salvation of others in dire straights, and for the salvation of the world.
Over to you, Big Boy. If you’re out there, show me your face.
Jay — My best wishes to you. Your posts have led me to think a lot about life and mortality, and that has been good. Though I’m sure you would have liked to put off the insight and wisdom you have provided for a long time.
As always, appreciate your openness.
The thing I remember most is the desperate desire to have some time off, some furlough from planet cancer. As you know, I got my departure ticket and got to forget, mostly. What I want more than anything for you, Jay, is days without dread, days without fear, days when you and the people you love do not feel so bounded by this. What a long strange trip it has been. You are ever in my thoughts, my fellow expatriate from the world of the healthy, my strange twin.
I haven’t given up either. I hope you can come home. But the biggest luxury is really the absence of dread. If I could wrap that up in a box with a big bow and give it to you today, I would.
Thanks for this post, Jay. My hope and thoughts, as they have been, continue to be with you.
Your body is dying, Jay, not you. The disease can never be even a fraction of what you are.
[...] can read Jay’s complete post here, and follow his daily updates [...]
[...] can read Jay’s complete post here and follow his daily updates [...]