[cancer] Flowers for Algernon

Another fear has been bubbling up inside me just this past week or so. This has to do with my process of dying. We know the likely cause of death for me will be liver failure. That will be more clear after my medical appointments on 5/8 and 5/10, but it’s the reasonable educated guess at the moment. The more I learn about liver failure, the more afraid and concerned I become about the experience of my last months of terminal decline.

It seems more likely than not that I will encounter mounting cognitive deficits and emotional problems. The mechanism for this is rising levels of toxins in the bloodstream as liver function declines, especially ammonia buildup across the blood-brain barrier.

Which led me to think about this blog. I’ll probably keep posting, trying to narrate my experience, until I simply cannot. I now have this vision of a very public decay, my perspective narrowing and my peevishiness rising, my vocabulary becoming constrained and my patience failing, dementia and delerium taking over my discourse. Like reading the last parts of Flowers For Algernon.

What will I be reduced to before the end? How will it read to my friends and family and my audience here?

I am not ashamed. I will not hide this from the written record of my life. It just feels, well, potentially tragic. And fills me with great sadness that I might go out with an extended whimper.

So many things to be sad about as the options close off and the future both narrows and shortens before me.

32 thoughts on “[cancer] Flowers for Algernon

  1. Glenn Glazer says:

    I think the answer is recursive, Jay. From what I understand of mental decay processes, exercise delays them. That is to say, the more you blog, write and do other mental exercises, the longer the decay will take before setting in.

    Good luck, be strong.

    Glenn

  2. Alexis says:

    I do not have your gift of eloquence. The more that happens to you, the more heartbroken I become and the less I am able to write. You are always in my thoughts. If I believed in prayer I would pray now. I can only offer the force of my thoughts.

  3. Jay, you and I are quite a bit alike: you imagine the possibility, do some research, reimagine layers of finer details, make plans B, C, D, repeat. It’s impossible not to allow the brain to mastermind of its own volition when this is the space in which you spend most of your alive time.

    Because we are all with you along this journey (thanks to your willingness to be vulnerable and bare all), we are now prepared to put forth the capacity for compassion and good humor that you teach us continuously as you (perhaps) head into these dark times. Don’t worry about us; however the course runs, our thoughts remain with the good man we have known and loved for a long time and not the one who may evolve from the course of this disease. Don’t worry about how the rest of us will view what appears to be an inevitable dogleg on your journey. You just don’t know if/when this will be the way you head.

    “Keep moving and thinking” is great advice, something you *can* do.

    Also, Flowers for Algernon is a brilliant work of literature, not defined by the end but by the wholeness of the entire story.

  4. Lee Harris says:

    Jay, you are an absolute inspiration to us all. I salute you, sir.

  5. Yes, liver failure is hell. Thanks to cancer, I watched it take my dad. Do not go gentle into that good night.

  6. Ellen Eades says:

    When I think of you, Jay, I think of meeting you for the first time as a co-host of the Potlatch auction with Ellen Klages and laughing until I cried. Then I think of reading pointed political commentary and witty analysis of the writing process. Then I think of interesting stories and beautiful photos. I also really enjoyed watching the Star Trek in the Park with you and David Levine and Kate Yule. I assure you that, regardless of how your end of life process plays out, the rest of your life more than outweighs that. Because hey, fuck cancer.

  7. Ann Crispin says:

    We don’t really know each other, Jay, but your cancer blog has been a source of help to me as I struggle with this disease. You write things I can relate to, but couldn’t put into words. (I hate writing about myself.) I think you have shown great courage and I admire you tremendously for your blogging throughout all of this. You are so right about still hoping to wake up and find out it’s all been a bad dream. Sometimes I think I enjoy my time asleep more than my time awake, because often, when I’m asleep, I’m “healthy” again. It feels so wonderful. But…I always wake up. (sigh)

    Anyway, I just wanted you to know how much your blog has meant to me during the past couple of years of my own struggle with cancer. It sounds like we’re at fairly similar points in disease progression.

    I’ve tried to work hard at taking the pleasures of each day (the “good” ones) as they come. It’s all you can do.

    Hang in there, my friend.

    -Ann C. Crispin

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