Log in

No account? Create an account
An author of no particular popularity

Jay Lake
Date: 2013-04-20 09:45
Subject: [cancer] Flowers for Algernon
Security: Public
Tags:cancer, health, personal
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.

Post A Comment | 13 Comments | | Flag | Link

User: threeoutside
Date: 2013-04-20 17:26 (UTC)
Subject: (no subject)
Of course it's tragic, no matter how it plays out. It's a tragedy for you, for your family, and for us your friends. There *is* much sorrow to come. It will grieve us all if what you describe comes to pass. Maybe it won't; maybe death will take any of us in our sleep, too.

This is all what it means to be human, illness, fear, love, grief, achievement, glory, decline. This is such a truism I feel like I should apologize for it. What I'm trying to say (and not doing well) is that this is what a support network is about. Helping us up, and sometimes, sadly, helping us down.

*hugs* You know we're here.
Reply | Thread | Link

User: emmainfiniti
Date: 2013-04-22 11:27 (UTC)
Subject: (no subject)
Reply | Parent | Thread | Link

User: swan_tower
Date: 2013-04-20 18:00 (UTC)
Subject: (no subject)
Your willingness to chronicle your experiences in public is amazingly courageous. Many people would hide it.
Reply | Thread | Link

selfavowedgeek: Blade Runner eyeball
User: selfavowedgeek
Date: 2013-04-20 18:06 (UTC)
Subject: (no subject)
Keyword:Blade Runner eyeball
More like sharp, incisive kind of dignity that *can't* help but express itself because of your own willingness not to hide it. Or hide from it.

Augustus McCrae from Lonesome Dove comes to mind: "'It ain’t dying I’m talking about, it’s living. I doubt it matters where you die, but it matters where you live.'"
Reply | Thread | Link

User: martianmooncrab
Date: 2013-04-20 18:14 (UTC)
Subject: (no subject)
you will do it in your own style, and I find that to be brave.. go kicking and biting..
Reply | Thread | Link

User: fledgist
Date: 2013-04-21 01:42 (UTC)
Subject: (no subject)
This. Very much this.
Reply | Parent | Thread | Link

asakiyume: Man on Wire
User: asakiyume
Date: 2013-04-20 18:29 (UTC)
Subject: (no subject)
Keyword:Man on Wire
I was coming to your blog because I want to leave you a comment about that opalized wood from a few entries back, but then you grabbed me with this entry.

All kinds of stuff I could say, but instead: I bet all your friends really want to be with you right up to the threshold that only you'll be crossing over, no matter what the route looks like. Don't worry about them (us--I get to say "us" now); they'll be summoning their own handfuls of heroism, and that's their story. You'll be busy coping with what you're coping with. So far--from what I've seen--you're brilliant. Super generous, super brave, a real hero. And *however* it ends, you're still a hero.

But yeah, it's also super sad.
Reply | Thread | Link

User: goulo
Date: 2013-04-20 19:09 (UTC)
Subject: (no subject)
Documenting the whole thing is unusual, honest, informative, enlightening, touching, inspiring, fascinating, and it keeps you in touch with friends and readers around the world. To me, the tragedy would be if you decided you were ashamed of the potential decay and stopped blogging. Keep on keepin' on, and sincere thanks for being you!
Reply | Thread | Link

User: jocosa
Date: 2013-04-20 19:28 (UTC)
Subject: (no subject)
I've been reading your journal from afar for a bit now. At times it has been a very tough read as this is exactly how I lost my mom almost 11 years ago. Liver cancer. At her initial diagnosis they gave her 6 months, but she proved them wrong and we got 2 more years with her. The majority of that remaining time was really good.

I keep coming back to read though, because it gives me another perspective on it, sort of an insiders look so to speak, as she did not talk much about what she was going through or was feeling/thinking. Your courage and dignity, and even your sense of humor through out it all has touched me, and also inspired me in my life.
Reply | Thread | Link

User: keikaimalu
Date: 2013-04-20 21:47 (UTC)
Subject: (no subject)
Death is a cruel bastard, and cancer its sadistic henchman.

My wish for you is the same as my wish for all of us: that you get to go out on your own terms, with as much comfort and mental presence as possible. And delayed as long as possible.
Reply | Thread | Link

desperance: luke
User: desperance
Date: 2013-04-21 01:26 (UTC)
Subject: (no subject)
cancer its sadistic henchman

I am going off at a total tangent here, which would be outrageous in another context but Jay is always interested in words, so: the teenagers of Oxfordshire (at least) have taken to describing broad, muscular men as "hench". We had never heard this before, but the derivation is simple: henchmen in TV and movies are always big and broad and muscular, right? Hence, by definition: "Yeah, that man, he's totally hench..."
Reply | Parent | Thread | Link

User: mmegaera
Date: 2013-04-21 02:12 (UTC)
Subject: (no subject)
I can't speak for anyone else, but please let us have you (for most of us, that means the blog, no matter how it changes) for as long as we can.
Reply | Thread | Link

Lethran: Angel
User: gwyd
Date: 2013-04-21 06:31 (UTC)
Subject: (no subject)
It's a brave thing to do, to not go softly.
Reply | Thread | Link

my journal
January 2014
2012 appearances