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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2013-01-31 06:22
Subject: [cancer] The hour and manner of my death
Security: Public
Tags:cancer, health, personal, religion
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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Lioness
User: elisem
Date: 2013-01-31 14:50 (UTC)
Subject: (no subject)
*comes over and sits by you*
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andelku: Apu
User: andelku
Date: 2013-01-31 15:52 (UTC)
Subject: (no subject)
Keyword:Apu
I don't mean to be cheap. But I run a Shakespeare company in Chicago and there is a lot of stuff about facing death in the later plays, esp Tempest (which I'm directing right now) and King Lear. Actually also in Hamlet, although Hamlet is not dying naturally, he still knows he is about to die "if it be now it is not to come, if it be not to come it will be now" I'm not remembering the line correctly. Haven't read Hamlet in a while.

But there is deep stuff in Shakespeare. He was a great observer of the human condition and talks so frankly about mortality from nearly every angle. He's a pal. He might help.

I do follow your cancer posts, and I usually don't say much because I don't know what to say. But I am thinking of you. :hugs:
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torreybird
User: torreybird
Date: 2013-01-31 17:24 (UTC)
Subject: (no subject)
Echoing: "I usually don't say much because I don't know what to say."

Perhaps that's one of the greatest gifts Shakespeare gave us--words that give us examples of how to treat each other.

Jay, I hate to make a request of a person in pain, but in the spirit of writing about the taboo of cancer and death, I'm asking anyway. How about a list of what others--whether strangers on teh web or just those who are at a loss for words--might say to express their presence with you in this journey?
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Jay Lake
User: jaylake
Date: 2013-01-31 17:27 (UTC)
Subject: (no subject)
That question is worthy of some thought, and a blog post. I will observe that the answer to that must be fairly idiosyncratic — what I am prepare to hear may well not align with what others in a similar situation would welcome.
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torreybird
User: torreybird
Date: 2013-01-31 17:42 (UTC)
Subject: (no subject)
I expect that the more idiosyncratic your answer, the deeper your answer.

What I would love is an example of what that thought looks like, at all. In my experience, too many people feel a barrier to saying "this is what would help me" -- whether it's words to hear, or foods to eat.

Thank you for considering it. :-)
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andelku: Apu
User: andelku
Date: 2013-01-31 19:51 (UTC)
Subject: (no subject)
Keyword:Apu
Perhaps that's one of the greatest gifts Shakespeare gave us--words that give us examples of how to treat each other.

He is good with the words. And he lived at a time when people didn't believe death could be cheated. People died young all the time, from violence and disease. And they didn't always find comfort in the doctrines of the Church. In fact, faith was a very cynical matter involving international European politics just then.

Here's the speech I was thinking of:

HAMLET:
Not a whit, we defy augury: there's a special
providence in the fall of a sparrow. If it be now,
'tis not to come; if it be not to come, it will be
now; if it be not now, yet it will come: the
readiness is all: since no man has aught of what he
leaves, what is't to leave betimes?

This speech is from Act V and its not one of the superfamousey ones like "To be or not to be" (although that too is worth a reread, especially for an atheist or agnostic.).

And, you'll notice, its short. Not even a monologue. But it is the point in the play where Hamlet accepts that he is about to die. And says he is okay with it.

We defy augury ... we step into the unknown ... which actually directly refers back to "To be or not to be" which states explicitly that the scary old thing about death IS that it is unknown, . Even the death of a sparrow is significant, which is a Biblical reference, but the rest of the speech couldn't be less typically Christian.

If it be now 'tis not to come;
if it be not to come, it will be now;
if it be not now, yet it will come:
the readiness is all.

Because it is about fate. And inevitability. Not redemption, nor heaven, nor hell ... again Hamlet goes on and on earlier in the play about how really we don't KNOW anything about what happens after death ... an extremely daring thing for a man to say publicly in the late 16th century when people are getting killed over fine points of doctrine.

And it is about acceptance.

since no man has aught of what he leaves
what is't to leave betimes?

meaning essentially what does it mean to die early when again, nobody knows what happens after death, although I think now he's talking about what happens to those he leaves behind.

Hamlet offers no answers. He just says, okay, I can go without the answers. I'm ready. I too am part of the natural world.

The readiness is all.

Anyway, I apologize if this is inappropriate. But I didn't think I could just post the quote without putting it in context.

Edited at 2013-01-31 07:51 pm (UTC)
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Jay Lake
User: jaylake
Date: 2013-02-01 00:29 (UTC)
Subject: (no subject)
Thank you for this.
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andelku: Apu
User: andelku
Date: 2013-02-04 01:49 (UTC)
Subject: (no subject)
Keyword:Apu
You are welcome.
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threeoutside
User: threeoutside
Date: 2013-01-31 16:48 (UTC)
Subject: (no subject)
At your elbow, dood.
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kellymccullough
User: kellymccullough
Date: 2013-01-31 17:02 (UTC)
Subject: (no subject)
Listening, empathizing, sending hugs and warmth and compassion.
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scarlettina: Hug 2
User: scarlettina
Date: 2013-01-31 18:22 (UTC)
Subject: (no subject)
Keyword:Hug 2
Thinking about you, my friend, as I do every day. ::hug::
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Keikaimalu
User: keikaimalu
Date: 2013-01-31 18:37 (UTC)
Subject: (no subject)
I see you walking this path, and I know that I don't know this path, but I also know that while we don't all walk the path of cancer, we do all walk the path of death.

Most of us have the luxury of pretending it isn't real. Living in denial. Laughing about the small foibles and losses of gradual aging, as if the end result is going to be smiling, wrinkled people in rocking chairs on a veranda, not a tombstone.

Life is hard enough when you can stick your head in the sand and pretend death does not exist. I've had glimpses of my own death, but only at great remove, and even that has been enough to change me drastically as a human being. I am not sure I could maintain sanity and an awareness of my own mortality at the same time. It seems crazy-making.

May you find whatever peace and joy you can. May health return to you.
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User: radiantlisa
Date: 2013-01-31 19:25 (UTC)
Subject: (no subject)
Yes, this. All of this.
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(no subject) - (Anonymous)
ellen datlow
User: ellen_datlow
Date: 2013-01-31 19:59 (UTC)
Subject: (no subject)
Jay, although I don't think I've ever posted on your blog before, I've been aware what you've gone through these last five years.

I've admired and been moved by your persistence, by your realistic optimism (if you get what I'm saying), and by your willingness to take your continuing struggle public.
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Jay Lake
User: jaylake
Date: 2013-02-01 00:29 (UTC)
Subject: (no subject)
Thank you, Ellen.
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Submarine Bells
User: submarine_bells
Date: 2013-01-31 21:13 (UTC)
Subject: (no subject)
What they all said.

When I read your post-surgery post that talked about the new unexpected sites, my first response was an urge to say simply "I'm so, so sorry". I wasn't sure if that would be helpful or not, so I didn't. With stuff like this, folk arrive at coping in a myriad of ways, and some of those ways work less well with directness, you know? But I don't really know what I can say that would be a goodness for you; while I have my own emotional reactions to reading about the ongoing developments, they're your ongoing developments, and anything that I, a relative stranger on the internet, might feel about all this is goddam tiny compared to what you've got to deal with.

I'd like my presence here, such as it is, to be supportive and helpful. If you do think of anything you'd like to hear from us that you would find supportive and helpful, I'm all ears.

In the mean time, I'm here, reading what you're writing.
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Jay Lake
User: jaylake
Date: 2013-01-31 23:14 (UTC)
Subject: (no subject)
Thank you.
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Max Kaehn: MAX ZEN
User: slothman
Date: 2013-01-31 21:16 (UTC)
Subject: (no subject)
Keyword:MAX ZEN
You’re going through something absolutely terrifying, and you’re not just looking it in the eye, you’re documenting your experiences along the way for everyone else to learn from. You’ve given me, and likely numerous others as well, an up-close look at something that is normally either kept discreet or dramatized for a television audience. With each post about your journey, you create meaning.
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Karen
User: klwilliams
Date: 2013-01-31 23:00 (UTC)
Subject: (no subject)
This so very much sucks, as I'm sure you're aware. While it would be nice to choose the time and manner of your death (preferably far, far in the future, and painless), I'll mention the pain to friends of those who suicide is a long agony of a different sort. Which is why I won't do that, because I won't cause that pain to my godchildren. Just sayin'.
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fledgist
User: fledgist
Date: 2013-02-01 01:05 (UTC)
Subject: (no subject)
I'm sitting here extending a virtual arm around your shoulder, Jay. The tears, though, are quite real.
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anghara
User: anghara
Date: 2013-02-01 01:30 (UTC)
Subject: (no subject)
I hate to see you write this. But this, even this, is written with so much grace. A potential world without your voice in it is one day going to be a hard one to face.
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punkrocker1991: books
User: punkrocker1991
Date: 2013-02-01 02:41 (UTC)
Subject: (no subject)
Keyword:books
If you must go gently, I hope it is surrounded by friends and family, those who know, love and respect you. All the best, and thank you for your continuing strength. Keep beating the statistics.
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daveraines
User: daveraines
Date: 2013-02-01 05:09 (UTC)
Subject: (no subject)
>> 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.

I wish for you the power to accomplish these gracious desires.
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LiveJournal: pingback_bot
User: livejournal
Date: 2013-02-01 08:00 (UTC)
Subject: Links I found interesting for 01-02-2013
Keyword:pingback_bot
User nwhyte referenced to your post from Links I found interesting for 01-02-2013 saying: [...] The hour and manner of my death [...]
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