[cancer] Talking about life

Further on the question of the nature of my life and my process of death, Ron says:

I considered the posts that I read and saw nothing in them but anger and suffering. If Jay feels that there is more to his life now than suffering, he should post that more often than complaints about his GI tract, his inability to write or even function cognitively at a level that allows any degree of productivity.

(Actually, he said more than that, but the bit quoted above gets to his point.)

Simply put, I still have a pretty good life. I’m miserable a fair amount of the time, and scared almost all the time, but I still have [info]the_child and Lisa Costello and a host of friends and family around me. I still watch videos, read a little (though not nearly as much or as swiftly as I used to), go out to lunch, and even get on planes or in cars and go places. My life is full of love, entertainment and distraction.

But those stories aren’t so interesting. Some of them aren’t even mine to tell.

As I’ve said on multiple occasions, my own story, the tale of my illness, death and dying, is the last story I do have to tell. My happinesses are specific to my own life. My sufferings are emblematic of so many other lives. That’s not ego talking. That’s the experience of blogging my cancer journey these past five and half years, and receiving countless amounts of email and comments and in-person feedback.

When I see a movie, or eat a good meal, or have a nice evening with a friend, that’s not really news. That’s just me living my life.

But as I collide with the limits of my disease and my death, and the financial, legal and medical processes around it, that’s news. It’s information. When I write about it, I put a voice to something many other people experience in silence, and I bear witness to something many other people have not yet encountered.

At any rate, that’s how I see things. And so this is what I talk about on my blog. Just as in fiction, where we rarely tell stories of happy, well-adjusted people whose lives are going well — where is the dramatic conflict inherent in that? — in my blogging, I rarely tell stories of my happy, well-adjusted days. I’m too busy experiencing them.

Not to everyone’s taste, to be sure, including presumably Ron’s. But it’s the story I have to tell.

16 thoughts on “[cancer] Talking about life

  1. Anna says:

    Oh for fuck’s sake. I can’t believe people are coming to the personal blog of a terminal patient and complain that he doesn’t write about the joys in his life so much.
    Apart from that, it is very apparent to me that there is plenty of joy and love in your life, Jay. So much so that I have occasionally envied you, despite everything.

  2. Deven says:

    Ron’s comments are proof that readers bring themselves into everything we write. Where Ron saw anger and suffering, I saw gritty determination and openness.

  3. Elaine Brennan says:

    What was it Tolstoy said, “All happy families are alike; each unhappy family is unhappy in its own way.” ? And that’s where the stories are.

    I so much appreciate your willingness and ability to share the up-and-downness of your days and nights, and to keep us, even just as observers and witnesses, to the reality of your story.
    I agree with Anna that the joys and loves of your life are very much present and obvious even when they are (mostly) background to your frustrations and concerns and fears — its all part of your life as you are living it to every degree possible.

  4. pwstrain says:

    What Anna said, but applied to _any_ personal blog.

  5. Yes, it’s important to tell those who do not have cancer about the troubles and pain of dealing with cancer. I believe it’s equally important to tell those who DO have cancer that there can still be joy in the life of a terminal cancer patient.

  6. Jeff P says:

    Gee, nice to have someone who’s not dying from cancer tell someone who is what they should be writing about. The fucking gall.I agree w/ Deven re what I take from your current blog posts. I find them moving, and am grateful for the insights you share as you take this unenviable journey. Thank you!

  7. Stuart says:

    Years ago I began reading your blog to help affirm my conviction to be a better writer. Now I read your blog to reaffirm my conviction to be a better human.

  8. Ruthie says:

    Your struggles become our struggles. Keep sharing. *hugs* (((Jay)))

  9. Ellen Eades says:

    I think Janet has a point. I have read your blog for a very long time, and I’ve always appreciated the posts about the_child, the rock band names, the con silliness, the growing up outside the US, the extended Lake family, and the other things that make Jay a wonderful and multidimensional person. Cancer casts a deep pall over those, but if you still have it in you to share those, I would love to hear more about them. And I promise it won’t make me forget that you have cancer and it has deeply affected who you are. But affecting who you are isn’t the same as being everything you are. There is more to Jay than cancer, there always will be, and I embrace those things because they will survive the cancer. Lots of love, Jay.

  10. Tara Roys says:

    I truly appreciate the fact that you blog about cancer. Specifically, I appreciate the details, the workarounds, the fact that you acknowledge that it’s hard, and the fact that you don’t feel the need to hide it. You said something awhile back that really helped with my illness (It’s not cancer, but I’ve been disabled by it for three weeks). It was something like, “The people who tend to survive cancer aren’t the ones who can con themselves into being healthy through ‘the power of positive thinking. People that do ok are the ones that do everything the doctor tells them to religiously, stay on top of their meds, and take what control they can of the process.” That really helped. I can’t turn myself into some happy zen robot while simultaneously dealing with a difficult illness. But your post inspired me to start budgeting my energy the same way I budget my finances. I can ‘save up’ a reserve each day to deal with the unexpected stuff and plan ahead so that I do have energy to do some of the stuff that actually brings me joy. Then I’m free to be a grump the rest of the time. That’s done more to balance me out than any of the dozen ‘power of positive thinking’ books I’ve read.

  11. Ben Fenwick says:

    If I may offer–Jay, you’re reporting news. News is the reporting of *events*. An event is something that happens, usually all at once, or is an occurrence resulting in a state of being at least different than something that existed prior to the event. The most important thing about an event is that it usually is something breaking or catastrophic. This is why news is usually deemed “Negative.” Most events are negative. It’s hard to find something happening all at once that’s positive. Maybe a baby being born? The Moon Landing? Publication of a new book? Otherwise, most things that happen all at once aren’t positive. Now, for instance, a tree growing is obviously a positive thing. But it doesn’t happen all at once. Most positive things are non-eventful.

    Suffice to say, you are having an eventful life, Jay. You are cursed to live in interesting times. And you are taking us on that weird ride with you. Do it. Fuckem if they can’t take it.

  12. Tamara says:

    It’s easy for Ron to make such judgments… he has the luxury of speaking from the mindset of one who is not condemned. Goodie for him. It’s his karma. I quietly thank you, Jay, every day I read one of your posts because, despite what Ron thinks:
    a/you still have a sense of humor, and that makes you the best kind of warrior
    b/you are actually very generous in sharing insights into horrible suffering so that the rest of us can reset our own perspectives
    c/your words give even the ugly confines of death a beautiful human element that will long survive your physical stroll on this world

    Personally, I want the news and information. I do not live close enough to you to be able to do more than just witness, and I take that role seriously. I feel that, with every post, I am walking beside you, my friend, you who are literally chronicling the path to death and, you know what? I’m a much better soul for it. And I think yours is a much better soul for doing it. Ron needs to evolve, as his comments show a soul in need of substance if he cannot see beyond the offense of pain and suffering.
    Hugs as always,
    T

  13. Michael says:

    Sure, I see some suffering and some anger. There is bound to be suffering and anger for a man who is, barring the near miraculous, effective doomed to die. Hell, one of my best friends was just diagnosed with DLBCL and once she got over the shock, she’s been a little angry about it. And such maladies always bring some level of suffering.

    Honesty is what I read Jay’s cancer related blogging for. I have a non-zero chance of developing thyroid cancer and it helps me prepare to see Jay’s honesty. Because, the truth is, most of the people I see blogging about their own cancer experiences aren’t particular honest, for which I do not blame them, but I get nothing that helps me prepare for the, as my doctor has put it, inevitable likely hood of my own cancer experience.

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  15. Elle says:

    uh. Let’s see. Its a personal blog of a terminal cancer patient. I thinkk he is entitled to express whatever he feels like. I suppose that readers can too-but it seems self indulgent to complain about a cancer patient complaining in his own blog.
    I am interested in the truth of it all-the misery, the “anger and suffering” if that;s what there is.

    1. Elle says:

      and sorry about the dumb typos.

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