Tuesday, June 26, 2012

Bag of skin and slime: Restless

How difficult to talk about the aspects of death or disease when we work very hard culturally to avoid mentioning that we are a biological bag of skin holding lots of ick and slime. And when the mix of an amino acid bath and pulsating leeching biotubing stops functioning, it is not killing an Ripley Scott alien but the stomach and upper intestine not digesting.

Similarly, the heat of forearms, and other core muscles comes from a body fatigued and a system which breaks down what is easiest. Muscle is easier than fat, though that causes internal bleeding, as so many ironman tri-athletes have found out.

Beth moaning, arms covered in goosebumps and shaking, part of her face sliding down, frozen, mumbling tongue, “The bones, oh god, the bones, I can’t,” The panting takes over, as it has been every few minutes, unable to breath, it feels like suffocation. Sometimes I pass out, I wake up unable to see with the ambi-bag, in and out, in and out. It rocks my ribs, like the waves lapping against the shore. I’ve been shaking for 11 hours, my whole body, too weak to move, my jaw tired from trying to keep the teeth from chattering. My extremities are burning, covered with goosebumps, I am burning up everywhere.

NDY, Not Dead Yet is different than the deliberate life lived. Overheating, the fevers and changes in mental status, as well as the tints that the world is seen through; realities combining pain, fever and depression lead to conclusions which are not pleasant for anyone – particularly the one who lives them.

In bed, it hurts beyond screaming from so much at once. Any noise, any touch or movement combines to become unendurable. Sleeping pill after sleeping pill, I can’t sleep, because of the pain. I am blind now, and in my head the messages are coming in: Linda putting on one blanket, later two, as my body must be losing heat, or getting cold, or shivering. I beg, ‘Please, Please, Please.’

One night I scream and moan for six hours, though there is passing out and silence or rasping but no sleep. “Horse tail, horse tail…” I mumble, trying to explain that the horsetail cluster is aflame, and the whole lower spine is too painful to lie upon, yet, I am not strong enough to be able to breath in any other position.

I am up, sometimes, rational less than that. The nausea is so strong, yet compared to everything else flooding in, seems hardly worth mentioning. Eating, as Linda and I decide to try, though even after days, what comes out of me makes me feel a slug or snail.

“I’m up to watch the film”

Linda: “Mmmmm”

Beth: “It’s called ‘Breastless’, about tall women who are cursed with size A’s through life”

Linda snorts,

She brings me food.

“And Ice Cream?” I ask.

“Do you WANT ice cream?”

B: “You say strange sentences that make no sense.” (My grandfather’s sage advice was to eat dessert first as needed, just in case an emergency occurred).

“And Ice Cream, it is in the freezer bag.”

Beth: “And now to your favorite snack.”

Linda: “Wha?”

Beth: “Sleep, it’s your favorite snack, your beloved hobby,”

Linda giggles.

Beth, “…your escape, and tasty treat.”
The film is called Restless, not Breastless. A story about two damaged teenagers, one with cancer, one without parents, who meet at funerals, ala Harold and Maude, though these two are saturated with death. The girl is tired of the lies, the whole round and round of cancer: “They always tell me I’m brave, after every test, or needle….makes me wonder how the non-brave kids act.”

After a funeral her asks her, “Wanna meet my parents?”

Her: “Sure.”

He leads her over to a gravestone..stares at it then responds, “Yes, I’m eating! Why do you always ask that first.”

They date. They go to the morgue at the hospital. The attendant finds them: “excuse me?! Can I help you?”

“No, we were just browsing, thanks.” He says and offers the girl his arm. Security is called, who recognizes her, ‘She’s a Webber Kid.” Webber is the children’s oncology wing.

“Webber kids? That what they call us?”

“Sometimes. Cancer kids.”

No! Kids WITH cancer.”

“What’s the difference?”

“There’s a difference.”
In all living, there will be pain. To see a film which shows the risk/withdrawal cycle makes me feel like I have a support group of sorts: the damaged sort, who’s silences need no explaining and whose humor has gotten too macabre for most.

I feel like I live in a hall of mirrors, and the last thing I want is to look at myself.

Beth: “I didn’t pee, not last night, or today, and what finally came was transparent. When I was wasting, starving, dying, it was okay, everything shutting down, but now… (things are supposed to be better?)”

Linda: “Well, you didn’t have the energy yesterday. Probably the kidneys will work tomorrow and it will go back to yellow.”

Beth: “I guess.”

Last time they didn’t work for four days.

I want more than to not be dead, I want to be alive; or have the conscious choice to go. Once you are in ‘palliative’ beds, it is often a mix of starvation and drugs. Three relatives died that way. I think, if it comes to starving, I’d rather do it myself. I’d rather not do it at all, yet all doctors or organizations or those who are to help tell me is how I should be dead, and when it is hard, hard, I think they are probably right. They should volunteer for crisis lines.

11 comments:

Anonymous said...

Beth... I hope there will be some forms of peace for you. I can imagine the horrible situation that you are in. Even in the worse circumstances there will be some reliefs..

Baba Yaga said...

You have such a gift of communication... And sometimes what you communicate is terrible. (Thank you.)

If only one could post relief, a little extra kidney function, temperature control - ! I wonder what the customs label on those would look like?

Restless sounds well worth the watch. It's queer how often only fiction touches reality. It's as well something does, though.

Anonymous said...

Baba yaga!! I think u have a brain freeze! What i'm trying to say is that i hope beth condition will improve regardless of how bad it is!!

Tui Snider said...

I am thinking of you from afar and wishing so much for you to feel as much comfort as possible.

I got a lovely postcard from you recently. Thank you so much for thinking of me. You are an amazing person! :)

~Tui

Anonymous said...

praying for comfort strength and love for both of you,,

much love
Jill

wendryn said...

I'm sorry it's so bad, so hard. I hope there is some relief soon, and I second Baba Yaga - I wish there were a way to send some relief!

*hugs* to you and Linda.

Devi said...

Sending my love and prayers, wishing for comfort, strength, soothing.

Elizabeth McClung said...

Thank you for your kind thoughts and words.

Baba Yaga: I wonder if I am too smart sometimes, and if my body was meant to slide away but I bring it back and this is the cost. But that's 'Too much thinking, McClung!'

I'm here, and I need to live as deliberate a life as possible, looking forward. But yes, I wish there was a vending machine for better function and particularly temp control - I hear it is lovely outside, using INDY in the evening would be nice.

Tui: I am not giving up on travel, I just need the constant beat which gives stability of energy to post - and I am working on that. We lost our park for the Pride Parade, the city sold it to condo developers, same with the community garden - because that is what makes a neighborhood......lots and lots of condo developments. haha.

Thank you Jill and Wendryn - right now the coolish summer is the best gift.

Devi - thanks

Lene said...

I read that and one the one hand am overwhelmed as a friend, wishing there was some way of making it easier for you. And on the other hand, in awe of your brilliance as a writer. Just... wow.

If you can, get the Fault in Our Stars by John Green. Excellent YA book about kids with cancer, about living on the edge of death and with some really excellent macabre humour. The audiobook is fantastic. perfectly read.

GirlWithTheCane said...

I read and I care. I just don't have many words right now.

Much love,

Sarah

Neil said...

Bsba Yaga: And how much would Canada Revenue Agency charge for import duties of donated bodily functions?

Beth, my dear friend: I understand that not dead isn't the same as living. But even as a zombie, you're still an incredible writer.

I pray for more strength and less pain for you.

I also hope Linda's leg is healing well.

Love and zen hugs,
Neil