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[cancer] Talking about life - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2013-11-14 06:15
Subject: [cancer] Talking about life
Security: Public
Tags:cancer, child, death, family, friends, health, personal, radiantlisa
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.

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mevennen
User: mevennen
Date: 2013-11-14 12:38 (UTC)
Subject: (no subject)
I'd be up for a post telling Ron to go fuck himself, quite frankly.
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Not Actually Jenny
User: jennyanydots21
Date: 2013-11-14 12:50 (UTC)
Subject: (no subject)
Seconded! Who the hell is this Ron person anyway?
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Katherine Sparrow
User: ktsparrow
Date: 2013-11-14 13:21 (UTC)
Subject: (no subject)
Thirded. Who asks that? For reals. Ugh. Someone who is lacking in some serious empathy, or basic social skills, or something.
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Swan Tower: armor
User: swan_tower
Date: 2013-11-14 18:25 (UTC)
Subject: (no subject)
Keyword:armor
No kidding. There's a large gap between "when I read the posts, this is what I see from them, which I guess isn't fully representative" and "Jay owes to to me to post about the things I want to hear." The latter is so very much Not Okay.
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asakiyume
User: asakiyume
Date: 2013-11-14 13:30 (UTC)
Subject: (no subject)
Interesting that you put it in terms of the personal and the universal--the daily-life, happy stuff you see as personal and incidental, whereas the cancer suffering--while obviously personal and unique, too--you see as having more universal relevance.

Actually, your personal joys and incidental moments are plenty story-worthy, but *you* are the writer of your public life, so you get to choose which moments you write about, and definitely the goal you've set for yourself of recording your struggle is worthwhile, heroic in fact.

Edited at 2013-11-14 01:32 pm (UTC)
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User: nicosian
Date: 2013-11-14 14:33 (UTC)
Subject: (no subject)
Its your blog to write as you choose. If this person finds it not to his liking, well, there's a back button. Never really understood why people seem entitled to the blog narrative of their choice by someone else.

That's my nice version of a message for Ron. The more blunter version has been well covered by the first reply.:D

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Elizabeth Coleman
User: criada
Date: 2013-11-14 17:23 (UTC)
Subject: (no subject)
Amen.
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Karl T.
User: karlht
Date: 2013-11-14 15:28 (UTC)
Subject: (no subject)
Jay, speaking only for myself, I'm here to share the journey with you as much as I can from this distance, and to help your other friends and people you've touched let you know that as far as possible, you are not alone -- we love you and support you as much and as far as we are able, singularly and collectively.

Simply put, I don't look to this blog to entertain me (I suspect it will -- most things you write do, in one way or another -- but it's not what I'm here for.) I'm here to give honour and comfort to a man I admire and respect, and if I can help his friends and loved ones along the way, so much the better.


Edited at 2013-11-14 03:29 pm (UTC)
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Lucy Kemnitzer
User: ritaxis
Date: 2013-11-14 15:31 (UTC)
Subject: (no subject)
When I read your posts, I don't see the story of a miserable man with no quality of life to fight for. What I see is a man who is valiantly fighting for what life he can get, who is sharing the difficulties and true emotions of the fight -- the fight itself, really. It's not always easy to look at, but it's honest.

I'm seeing the opposite of despair. Despair would be silence at this point. I dread the your silence.

Maybe I see this differently because I am in the stage of life where death is beginning to be expected. I'm older than half my grandparents were when they died, older than my mother was, older than my husband who I expected to outlive me (my worry right until he died was that his early smoking would make him ill and he wouldn't have me there to help him: I never expected it to kill him so young).

Or maybe it's that I understand the fierceness with which you value your life and your commitment to your daughter.

I do disagree with you on something, though. You say that yiu've been robbed of the power to write, but your writing is strong and beautiful. The only thing (and it's huge, I won't argue that) that's been taken is fiction. This writing you're doing now is a huge project, full of life and meaning.
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Elizabeth Coleman
User: criada
Date: 2013-11-14 17:27 (UTC)
Subject: (no subject)
Exactly. If Jay's misery truly permeated every corner of his life, then he wouldn't have the energy to post.
And for F's sake, the internet is MADE for bitching! You can bitch at the impersonal void that is the internet, and meanwhile share your joy with the individuals you love.
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twirlgrrl
User: twirlgrrl
Date: 2013-11-14 17:32 (UTC)
Subject: (no subject)
Yes, yes.
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threeoutside
User: threeoutside
Date: 2013-11-14 17:39 (UTC)
Subject: (no subject)
IMO, you are doing a tremendous humanitarian service by relating the physical, mental, social and business (to include insurance and governmental) issues that confront you. The more patients like you - who are able and willing to explain and articulate what's happening, and why so much of it is unnecessary and unconscionable - we can get, the better off the world will be. Every time you talk of your struggles with red tape, mindless bureaucrats, reluctant insurance organs, I always think, "And so many hundreds of thousands of other people without Jay's intelligence, education, experience and just plain chutzpa just get steamrolled right under those merciless wheels." Thank you for documenting all of this. It has to be so hard. Just wanted to tell you I appreciate it.
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The Empress of Ice Cream
User: icecreamempress
Date: 2013-11-14 18:37 (UTC)
Subject: (no subject)
I am on Team Dylan Thomas here.

Do not go gently into that good night.
Rage, rage against the dying of the light.


You don't owe anyone a comforting Beth March death arc.
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We're flat broke, but hey - we do it in style....: Fuck Cancer
User: kshandra
Date: 2013-11-14 20:11 (UTC)
Subject: (no subject)
Keyword:Fuck Cancer
I want to marry this comment.
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horace_hamster
User: horace_hamster
Date: 2013-11-14 18:53 (UTC)
Subject: (no subject)
I have always believed -- dunno why, whether it's reading between the lines, or mentally extrapolating from little phrases in your posts, or just assuming based on what I know of your personality -- that you most certainly do have happy days and glorious moments and joyous experiences that intersperse with, or collide with, or share time with, the pain and GI upset and fear and miserable bits. And, as you noted, you're a fiction writer -- so of course it makes perfect sense that you would show the ick bits and tell the pleasant bits!

FWIW, I really appreciate the naked honesty of your posts. They're all the more important to me now as my sister was diagnosed last weekend with stage IV breast cancer (mets to the bone, lung, and brain) -- you've given me a perspective on what it will be like for her, and you've given me heaps of insight into what I can do to support her.
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Zoe Sotet
User: Zoe Sotet
Date: 2013-11-15 04:32 (UTC)
Subject: (no subject)
Your life, your blog, your cancer. Post whatever the hell you feel like posting.
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