*rolls up sleeves*

[kyburg]

SNARK MODE=ON

I'm more than a bit out of sorts tonight. I'm going to call your attention to two passings of close, dear ones - not of mine, but in my circle. Dear ones of dear ones, as it were.

Shelton Jackson. AIDS.

Jennie Sutton. Cystic Fibrosis.

Half my age. Younger than Cliff when he left.

People mention what fighters they were. How terrible it was they 'lost the battle.'

As if.

Guys, having a disease process? Isn't a matter of a fight - because it's not, and it never will be.

You don't get to fight. This isn't a battle. You don't even get to defend yourself.

You get handed something to endure and deal with. You get something that doesn't care, doesn't even throw a punch at you - before it steals everything in your life, and then takes you life without batting an eye. It's insanity to even consider you will get a fair shot. A fair fight? *laughs*

This drives me nuts, because it implies that if you don't 'win?' You failed. You didn't do something. You didn't get help from the Right People. You were - unlucky. You can fill in the blank. Shoot, go ahead - co-op God. For good or ill. It's done. You know what it sounds like, you've heard it.

Here's your warning. You do this around me, you're going to get it.

You get to work as hard as you ever have - for vanishing returns. Maybe no returns at all, but you do it anyway because you want out of this nightmare and that's the only way that looks promising. You live in an acute awareness of being that is both a curse and a blessing. You wish you could have the day of a lifetime - because it could be your last, and tomorrow could be worse - and have to deal with the reality that this day has more suck (and no money) in it than anything else, and you can't. But you endure it - hoping tomorrow will be different. But today, you enjoy the sunlight. The rain. Whatever you can grab - because this is your time, the only time you are going to get. And you know you must make the most of it. It's all you'll get. Vitally aware.

Vitally aware you're getting the short end, but you make the best of it. It is what it is.

Fight. Fight what? Something that sits on your chest, sucks your blood, kills you from the inside out, short-circuits your nervous system, plays with your body chemistry like some science project from 6th grade, what? Oh yeah, that'll work.

Shelton did something wonderful. He told everyone what it was like. He took it in, hoped for the best and just did what he could. Hope's Voice. Dear God.

There's little braver than enduring a transplant, in my book. To consider it, do it and when it stops working? To consider doing it again? And why?

She failed the saving throw on the genetics. Yeah, I'd give the whole mess the finger. Cliff certainly did often enough.

I remember the absolute smugness Cliff had on his 35th birthday. He'd made it. He wouldn't see two more birthdays - but he'd made it to 35 when everyone said he wouldn't.

Fight. You wish. You manage to endure and survive these things, if you can. That's all.

Let me tell you something. This ain't no dress rehearsal. This is all you're going to get. One day, one hour, one moment at a time - and when it's gone, it's gone for good. It's not coming back for you to try again, this moment. Not ever.

So don't be surprised if I'm willing to do whatever I must to avoid being unhappy a single moment if I don't have to. Regret, sadness, whatever - those things are part of a healthy acceptance of life and its realities. But if depression rolls around? No. I spent too much time there already - and I know too much now to ever go back there. I don't deserve it. Nobody does.

And it's a fucking lie. Test those boundaries, push that envelope - it'll give. Promise. You won't die - of fail, embarrassment or panic. Hang in there, grab on by your fingernails and don't let go. Look for what is true and unchanging - the rest of the world is no more perfect than you are. Things fall down. It's okay. You deal. You move on. Let it be. It'll be okay, really. Trust me. Trust yourself.

I want to live my life in near exhaustion - every day as full as I can make it, curious about what's around the corner and willing to give it a go, even if I fall on my face. Like nobody's watching (and really, who is?). Hard to hit. Always in motion.

I'll never feel sorry for you if I see you need a shove back onto your feet more. Come on - your life is calling, can you hear it? Are you listening for someone else to relay the message instead (don't)? Get up, pay no attention to that bullshit hiding behind the curtain whispering threats. Deal. Cope. Work. (It's all just work, didn't anyone tell you that?)

You don't need anyone to tell you you're awesome. You just are. Accept it, tuck it close to your heart of hearts and never forget it. You're the first one to know this - nobody else can make it stick if you don't hear that from the bottom of your soul.

Strive. Get out in front and make it look like a parade. Fake it. You'll make it, eventually. No other choice - if you keep at it.

But this is IT. No do-overs, no going back to make changes. No rewrites.

Do your best.
Clean up your own messes.
Be aware of your impact on others.

People rock. You rock and you don't even know it yet.

Now get to work.

SNARK MODE=OFF

Comments

[elorie.livejournal.com]

I feel exactly the same way about that stupid "fight" metaphor, and for much the same reasons. If cancer was a thing you could fight and win, my father would still be alive.

[kyburg.livejournal.com]

Werd. What a stupid, nasty thing to say to someone. Do people ever THINK?

[kimberlychapman.livejournal.com]

Yes and no. They think insofar as they want to say something, and in the absence of anything worthwhile to say - because really, what would pass muster in the face of such overwhelming pain? - they grasp onto what they've heard others say.

It's the same for any illness that causes any kind of hardship. There are whole lists of ridiculous but common things said to people going through infertility on the support boards.

It's a stupid metaphor, but I kind of get why it gets used. It's comforting and easier than dealing with the true horrors of death and suffering.

[kyburg.livejournal.com]

Do me a favor. Link a picture of that awesome cake you made here. Everyone needs some awesome and that WAS JUST. *applauds*

[dichroic.livejournal.com]

Yesterday there was an article on my local radio station misreporting a (legit) study as "You don't have to worry about curing cancer any more, because it can be prevented by just eating healthy and exercising!"

Nothing like screaming at the radio on your way to work in the morning. Tell it to the *other* two-thirds of cancer victims, the ones whose disease can't be prevented by a little exercise.

I do think it's worth keeping a positive attitude and fighting a disease, if only because if it helps, it helps, and if it doesn't you have the satisfaction of knowing you did all you could. (An attitude that seems to be shared by my close relative currently dying of a rare and aggressive cancer.)

[angelx.livejournal.com]

wow, that is a powerful entry you have there. sorry to hear about your friends but i agree with what you said about being hand something unlucky in life.

[angelx.livejournal.com]

actually, i agree with everything you said about the subject. it's just a really sad entry.

[kyburg.livejournal.com]

They were beautiful lives, hon. They were beautiful, beautiful lives.

[jrittenhouse.livejournal.com]

As someone with a chronic, life-threatening and non-curable ailment, I agree with you on all of this. Helps if you have a little girl to keep you stirred up and going.

[drlaurac.livejournal.com]

Seconded. Behcet's has made me celebrate every year, really every day, as more time to enjoy this fascinating life. Sure, some days I feel like crap, but it makes the good days that more awesome. And children do make a difference. Every one you love makes a difference.

That...

[amanda-nye.livejournal.com]

was awesome.

Preach it. You do it well, and no hypocrites in this building -- you live it, too.

[n6vfp.livejournal.com]

I only wish I could be an organ donor, but with my auto-immune disorder (SLE), I wouldn't wish it on anyone. Yeah,I've beat the predicted date of my demise,better living through chemistry. When you get angry, you write so well. I've been lucky, I've only 'died' once, spent months in hospitals, but I'm still here. The best we can do is gain some inspiration from those who pass before us, live life (I try to live every day), give what you can to help others, be it money, knowledge, guidance, hope, and remember, pay it forward, because when you hesitate, but for one moment, you may miss the time of your life and someone else's. Life is precious, Cherish it and the lives of those you hold dear. But don't forget to keep those people who pass through your life alive in your heart. That's important.

[kyburg.livejournal.com]

You know, it was pointed out to me today that you really should let the people on the donation squad decide if you really aren't any good for spare parts. If you have no problem being a donor - let them decide if anything is fit for human consumption after you aren't using it anymore.

They'll have your history. You never know.

[n6vfp.livejournal.com]

That is quite true. Thanks for providing a bit of perspective.

[bheansidhe.livejournal.com]

My father, when he died of congestive heart failure, had been hepatitis positive for 40 years. Last I was told, over 70 people were gifted with pieces of his body - cadaver bone, skin, and retinas were the major donations. I don't know the specifics of your condition, but I know that there's more to donate than organs.

[feyandstrange.livejournal.com]

For my condition at least, they really don't have a clue - nobody's been arsed to do the damn research - but they do know we have some interesting low-level tissue damage to major organs, and that we carry one heck of a germ load which is hiding below the level where our immune system can do anything about it. I don't want to run the risk of that germ load getting into an immuno-compromised person because some doctor who knew nothing about CFIDS (and there are many) decided it was worth the risk. (THe only major CFIDS agency recommends against that risk for now.)

The only thing worse than not getting a transplant is getting one that seems okay for about a week. And I say that having watched my aunt nearly die on the transplant list.

In general, though, you're right - if a person's gonna be on innumosuppressants to keep that transplant organ going anyway, an awful lot of stuff can be bypassed.

[purdypiedad.livejournal.com]

That was the saddest pep talk ever. But I agree, and I feel convicted. Thank you.

[nagasvoice.livejournal.com]

As writer Terry Pratchett remarked, via his fantasy character Death, humans have invented some of the strangest concepts in the Universe.
"Boredom," for instance.
I believe he wrote that before he was diagnosed with early-onset Alzheimer's, too.

[lackofgravitas.livejournal.com]

Have you heard of this book, or even of the author? This is what I always think of when I read a newspaper report of someone's 'battle' with cancer/anything else.

[feyandstrange.livejournal.com]

I'm sorry.

I was with you all the way until:

"I want to live my life in near exhaustion - "

...at which point I made that noise you make when you're sort of laughing but it isn't that funny, kind of a snort-bark thing?

Because no, you don't. You want to be *doing* enough that you push towards exhaustion, absolutely. But you don't want to be exhausted all the time. That's my job. And the pay is ass, but you know that. And people who do push too hard can end up in my wheelchair - so take your vitamins and sleep occasionally.

That said: hell yeah.

The only time I approve of that stupid 'fight' metaphor is when it works for us. Like the friend of mine with cancer whose friends, all LARP geeks, threatened to stage a LARP in which everyone played white blood cells attacking and beating the snot out of his cancer with boffers.

[gallo-de-pelea.livejournal.com]

a LARP in which everyone played white blood cells attacking and beating the snot out of his cancer with boffers.

that is AWESOME

[kyburg.livejournal.com]

BOFF-A-THON.

We should sell tickets, raise money.

[kyburg.livejournal.com]

I am one of those very lucky people who sleep easily, well and wake up *instantly* ready to go. Feet hit the floor, I'm UP. Let's go.

So when I'm exhausted? Yeah, it's been a good day.

(And I'm on the really good One-a-Day for Women I've taken for decades. Yay Moms who insist on these habits early.)

[juliekaye.livejournal.com]

I am one of those very lucky people who sleep easily, well and wake up *instantly* ready to go. Feet hit the floor, I'm UP. Let's go.

Oh man, I would give anything I think to be one of these people. I've finally gotten my thyroid to a much better functioning ability the last couple years (after 10 years of barely being able to function) and so I'm dealing better overall. But even now, I can count on one hand the number of times I've woke up feeling rested and ready to go. It's always a struggle and I think if my bladder didn't force me out, I'd probably never get out of bed.

But overall, I probably shouldn't complain because I'm worlds better than I used to be so there is that. :) Maybe one day.

But yeah, I think I'm a little bit jealous of you right now. lol

[kyburg.livejournal.com]

I did say lucky...don't I know it.

[bkwrrm-tx.livejournal.com]

THANK YOU! God, I wish I'd had the words for this when my daughter died of cancer.

Do you mind if I add this to my memories?

[kyburg.livejournal.com]

Not at all. Anything I put out here is for public consumption and well I know it.

[anahata56.livejournal.com]

I'm not as polite as Missy--I added to memories anyway.

Because...just...YES.

To the risk of getting pelted with rocks

[turandot.livejournal.com]

I think the metaphor is apt. It is a battle, at least with some diseases like cancer. You're battling against your own body's abnormal functioning and growth, and you're doing it every day without fail. Sometimes it's just a battle with yourself to make yourself go through the pain of the chemotherapy, and everything else associated with it. For some cancer sufferers, the battle is just keeping going and believing that something, anything will work to convince their bodies to stop producing cancerous cells (and yes, I know a few cancer survivors IRL).

If the battle comes to an end that signifies "loss"? That does not, should not imply failure. The loss, cliched as it sounds, does not refer to the death, but rather to the aftermath of its occurring. The loss is for other people. Take that away, and this loss does not matter, and it should.

Are there better ways to say the same thing? Sure, you could say "So and so was lost to cancer", rather than "lost the battle". But that purports its own problems. Because that implies that the suffering person just went into some sort of woods, and passively waited for someone to help, and the help never came. You should know from your own history that this is not the case with anyone suffering from a possibly fatal disease. They fight for every breath they take, as soon as they learn of the possibility. If I were in their shoes, I would do the same.

When that fight is lost, it isn't because the person waging that fight for life somehow "failed to win", it's because the odds they were faced with were staggeringly against them, and were insurmountable. You can't "fail to win" when the game is rigged against you in every possible way.

My mother in law had to have a hysterectomy and aggressive chemo for months. She went in remission for a few months, and then the cancer came back, not as aggressive, but still there. She had to go through a different set of chemo (because it had come back so early, using the same treatment as before would not have helped any), more aggressive, more tiresome. Did we want her to fight through all this? You bet your ass we did. We didn't want her to lose, not because it would have made her fight a failure, but because we didn't want to lose her. Not now, not for a long while.

Fought it she did, bravely, and she has succeeded for the time being (with cancer, as you well know, there's always the possibility that it will come back later in a mutated form - there is no "forever free of"). The odds were not as staggeringly against her as we first thought (Originally? She might have been dead by now). But had she succumbed to the disease, would I or anyone that knows her thought for a second this constituted a failure? No way. Fighting a terminal disease is akin to being an epic hero: there is no failure in death. There is just tragic death.

Re: To the risk of getting pelted with rocks

[ms-hecubus.livejournal.com]

I agree with you. I've watched a loved one waste away from a terimal disease and each day was a battle. A battle to enjoy life; a battle to make the most of what time was left; a battle to do all the things you need to before the end; a battle to say good-bye.

I'm sorry to paraphrase from a movie here, but you don't just fight the fights you can win you fight the fights that need fighting.

Re: To the risk of getting pelted with rocks

[kyburg.livejournal.com]

I'd argue a bit of semantics here.

'Battle' suggests something can be won, hell - that someone is actually going to SHOW UP to face you instead of sneaking around behind your back knocking your legs out from under you.

I'd offer this replacement. It's work, nothing but. Replace the word 'battle' with 'work' - I find that far more honest.

[varna.livejournal.com]

Two things come to mind:

"Life is not a journey to the grave with the intention of arriving safely in one pretty and well preserved piece, but to skid across the line broadside, thoroughly used up, worn out, leaking oil, shouting GERONIMO!" - Bill McKenna

And Bellana's personal observation: The things we regret most in this life are very rarely the things we do. It's the things you don't do that stay with you.

[kyburg.livejournal.com]

Or that you don't GET to do. Very much so.

[sirena73]

That was very well-said. And kind of beautiful. So, thank you for that. :)

[labelleizzy.livejournal.com]

thank you for this. I have put posts of yours in memories before, your way of expressing yourself is wonderful.

The icon is my brother, his wife, and their little girl (now 3); he died of a nasty, virulent kidney cancer 2 years ago this April. FWIW, yes, the struggle against insurmountable odds isn't properly called a battle, unless, as someone suggested here in comments, it is one of those epic, tragic sort of battles told in song and story...

if you don't mind, I'd like to add you to my Outside Library (friends list).

[kyburg.livejournal.com]

Sure! *chuffs*

[amilyn.livejournal.com]

This drives me nuts, because it implies that if you don't 'win?' You failed. You didn't do something. You didn't get help from the Right People.

THANK YOU. The implication in those oft-used words that someone "lost" instead of "won" because they didn't do some magical something that wasn't available or possible...it makes me utterly mad.

[kyburg.livejournal.com]

It's a loss - not a lost. *facesmacks*

As I said, someone does that around me...they're gonna get it.

please pretend that i write even slightly coherently

[veggie.livejournal.com]

DDDSDFSDFS I LOVE THIS POST.

and this is slightly related: i really hate when people are like, "OH, I DIDN'T DIE FROM THAT DISEASE/OPERATION/CAR ACCIDENT/OTHER NEAR-DEATH EXPERIENCE BECAUSE GOD SAVED ME." like, sure, god thought it was cool to reach down and let you survive but he lets other great people just fucking die. BECAUSE YOU'RE SO IMPORTANT. SOOOO IMPORTANT. to god.

it just seems really self-absorbed to think anyone is that important. i'm not religious, but looking at it from an outsider's perspective...isn't the point of religion that god loves everyone equally? so if god were the type to intervene in everyday life, wouldn't he just save everyone from accidental death? AND THERE WOULD BE NO AIDS OR CANCER OR CYSTIC FIBROSIS AND EVERYONE WOULD LIVE FOREVER. :|

Re: please pretend that i write even slightly coherently

[kyburg.livejournal.com]

Keep in mind I'm one of those people who can't deny the existence of a higher power. Call it God, call it Late For Dinner. God, Time, Whatever -

Giving cred to something larger than yourself - fine. Love Kurt Warner to itty bits, but I have to switch mental gears when he attributes everything to Jeebus. Okay - I get it. (I'm sure Jesus is happy to be remembered and loves football as much as Kurt does. Go Rams Cards.)

But for everyone who got what they wanted - there are an equal number of everyone who got the booby prize, and yeah - God made that too. Why? I dunno, really. I know we do better when confronted with a challenge - will that do?

It's better to be humble - as directed often in just about every faith system I know of - accept the good things with grace, and work like hell when you don't get the good things.

And work even harder when you get the bad things. Only game in town.

You do learn a whole lot that way, come to think of it.

And as far as God and my experience goes?

I never felt more forgotten in my life. It was if God had simply decided 'this is all you get, there's nothing left in your account' and just left the scene. We got just what we had to have to get by - so the Lillies of The Valley parable is still valid - but I'm keenly aware that God helps those who help themselves, the best. And most of that help came from people of a like mind to my own.

Got more than you need? Share.
Got enough? Good. Don't waste.
Need some? Ask, and be prepared to accept no for an answer.

You're not entitled to anything. You only get what everyone else gets.

You get a life.

Re: please pretend that i write even slightly coherently

[veggie.livejournal.com]

can you write books, please? I WOULD READ THE SHIT OUT OF THEM.

Re: please pretend that i write even slightly coherently

[kyburg.livejournal.com]

*chuckles* And what, my dear, should I write about?

I can fill an essay once in a while with this - but a whole book? *scratches head* Hasn't manifested with me yet.