[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 contrast 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.

79 thoughts on “[cancer] The hour and manner of my death

  1. 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.

  2. 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.

  3. Alexis says:

    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.

  4. Ben Fenwick says:

    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.

    1. Jay says:

      Thank you, Ben.

  5. Cliff Winnig says:

    Thank you, as always, for sharing your thoughts, Jay. I wish you as speedy a recovery from surgery, as possible.

  6. Nancy Wirsig McClure says:

    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.

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