Saturday, January 28, 2012

The price of holding on: defiance

I don’t pray for a miracle, but sometimes I pray to die. I never wake except to pain. The limit of my waking is based on how much I can endure, and using the one eye and balance hard won in the gym and nights too painful to sleep, I ignore the bomb in my chest and get from the wheelchair to the toilet.

Do you remember running those sprints in high school? We kept going until everyone had thrown up. The feeling you had when you staggered, in oxygen debt but as fast as you can to ensure you are not last….that is what my heart feels, every beat, hours a day. I clamp down, and just carry on.
Maybe if dying felt good I would let go.

But Death is a bully.

I don’t give in to bullies.

Beat me, suffocate me, hurt till I scream, and I do scream. I wimper, I mewl. Watch the Danse Macabre, when it hurts so bad I can’t help but writhe. I will get up. A new plan, a new attack, a new way forward. I know, as each day I lose, sometimes a little, sometimes too much to say aloud. Why has this disease eaten up our years? I know that I will never win.

Choices made when strong show us at our best, but when it is a person stripped, physically, emotionally and psychologically, that decisions matters. I vow, in all states of body and mind, to choose the best Elizabeth. I will never cede, I will still see it as a choice.

I choose to live today. This is my forever.
Besides, I don’t give in to bullies.

“Shall I tell you what the real evil is? To cringe to the things that are called evils, to surrender to them our freedom, in defiance of which we ought to face any suffering.”

Always a Digger myself, early anarchists, the Diggers of 1649. (click on play to hear the original round song.


annette2 said...

It is a thought that never actually occurred to me - to be the best person you can be given a choice. I think it is subconciously there but nit so often articulated.

You are a person of real courage to fight so hard. You and Linda are an inspiring couple. I hope you have great success in fighting in the areas you have left to you. Certainly writing and being inspiring are area you have great succes in


SharonMV said...

Your strength of spirit always amazes me, fills my heart, then squeezes it with pain. Not the kind of heart pain you experience dear Beth, but the way love can hurt. Your choice is brave, your daily battles so hard. I am glad to have the best Elizabeth of any day as my friend & teacher.

Love, Sharon

Tina Russell said...

(cuddles) You’re the best, Elizabeth. I hope I can soak up at least a little bit of your strength while you’re still with us.

Just Kathy said...

Excellent advice to live by. I sometimes forget that I have choices too... Thank you.

monnsqueak said...


Keep that bully at bay - you can block the bastards but never quite beat them. But at least blocking them stops them beating *you*.

Saw this today and thought of you.


Baba Yaga said...

Maybe that does explain your will to fight, at that. Not giving in to bullies.

I admire it. I don't have it. Only to tweak things a bit here and there. I always did go for subversion over open rebellion. ;-)

I wish you didn't have the extraordinary pain, though.

Neil said...

Thank you for being so stubborn and insisting on not dying today, dear Beth.

When it is your time to go, I'll try to remember that it was your choice to stop fighting. I pity Death when you do choose to go with him, though. :)

Yes, you certainly ARE a Digger, Beth. My compute won't play the song, but I have a version of The World Turned Upside Down; it's somewhere on a cassette from the early 1980s.

Love and zen hugs,

cheryl g said...

You have such strength of will. In all the time I have spent with you I have always seen you reaching to be the best Elizabeth you can. At the same time you also teach and encourage me to be the best Cheryl I can. You are an incredible person.

Elizabeth McClung said...

Neil: There are lots of World Turned Upside Down songs, I think Billy Bragg did one that was famous. I wish I could say I sustain by will, but more like cunning, fortune and misfortune - I die because I don't wait for instruction on what should be working regularly now must be done manually - from moistening skin to limb function. I can't die, not without some fairly horrific letting the body go to waste and the gangrene or other complications that brings. But I get you, thanks.

Annette: I find myself in a place where all I do needs to be planned, and I am lucky to eat in a day, so I think deciding it means more than function is a hope.

Sharon: thanks. I am sure we end up making the same decisions, part need and part determination for a different future.

Elizabeth McClung said...

Justy Kathy: thanks

Tina: Thanks

moonsqueak: thanks so much

Baba Yaga: I don't advocate it for everyone, but it seems I simply can't let go. I think if it was cancer, I would be the same, rather to be watching fireworks than hospital walls - Wit indeed.