Wednesday, December 23, 2009


In Triage, EMT and Doctors do rapid evaluations and then tag: Green for likely survivors, Yellow for serious but decent chances, and red for a bad time/chance ratio. Not personal, no, except to the person being tagged.

It is hard to leave my skin, so much has it melted into me. All I do to keep it from rotting, or peeling away in strips, I am trapped within these eyes. For others, it is difficult to see me. As for me, what are another few lesions, right, or a seizure, or some aspect of brain degeneration, a slurring? What does it matter to me, who can’t imagine what it would be like to love me. Who can’t remember the world where I walked strong?

Only Linda now is not frightened to touch me, to look me in the eyes, to not find reasons to start triage. Only Linda with the open heart, centered.

In the darkness of 4:00 a.m.

“This isn’t just something in my head is it?”

Linda’s voice is soft, cradling, “No.”

“It isn’t something chronic, something I just live with, is it?”


We both wait in the silence while I close my eyes. Some things can’t be said in daylight.

“I’m going to die, aren’t I?”

Her voice is soft but it fills my head, fills the room. “Yeah.”

It seems so much that this life in a hospital bed is a movie set, is an odd dream. This couldn’t be real. The ice pack settles and I realize that tears are running down the sides of my face, around my ears to fall to the pillow. “Yeah.”

From the darkness a hand to hold.

People accept that Triage occurs, they don’t think, they don’t want to think of the person lying on a cart, neck muscles bulging to suck down another breath, trying to swallow but a mouth to dry, the people passing by in a fever haze. They just try to stay conscious, to breathe, not knowing that a red sticker sits on the outside of their chart.
I had another blog post I was going to write, but I couldn’t do it today, too fatigue. How much fatigue? Imagine taking your day, and being awake for 1/3rd of it. And then you only have one tenth of the energy you normally have. And then you only have a tenth of that energy. That’s right, 1/100th the energy, and then you cut that in half. Do you go during break at work for donuts? Now imagine that being something that takes two weeks planning and recovery for 2-4 days.

So I had another blog, about Sakura-con, something light, a little fun. I got the pictures done and loaded into blogger. Then part of my illness struck, and after ‘now’ it was almost two hours later. This simply IS. It is what ‘living in the now if you want to live’ means. This is what scares people.

Tomorrow will be a blog about the future, the hopeful, not the gritty reality of the breath you take to steady yourself before going into a hospital room to see someone.
Last night after being helped to bed. I was drooling a bit, and slurry.

“What if I walked away or destroyed all that I possessed?” I asked Linda, “then, then would I be get to be insane instead of dying?”

How does she look at me so calm, how is it her voice doesn’t change but a tinge of sorrow? “No.”

“No, I knew that. I just had to….” I take that breath to steady myself, “I just….that there was something.”

I drink the bitter cup, a sip at a time.

In the end, still red chart marked, if found breathing, they will call it a ‘miracle’ and try, knowing it is too late. Not knowing of the eternity within and between breaths that only an iron will could have hung on through. That is what people don’t want to see. Because it hurts to watch. They get the choice of turning away, a luxury which, when their turn comes, will be chosen by others also.

They say that because there are no nerves inside the brain, you can’t feel the damage but that’s a lie. But a brain with damage is something, a breath of agony is still a breath.

Triage. I am lucky to have a hand to hold.


rachelcreative said...

People are more than tick boxes and categories. Illness, acute, chronic and terminal is more than the odds of surviving - the scale of quality of life.

Your words so powerful as ever.

Reminding me that you must always strive to see the person, the whole person - not the labels or what is assumed. My husband tells me never assume.

I don't know how to make it better Elizabeth. But I hope you know I'm listening and I'm your friend.

yanub said...

An iron will is what you have. Of that, I never have doubt. An iron will, and Linda.

"From the darkness a hand to hold."

"That is what people don’t want to see. Because it hurts to watch. They get the choice of turning away, a luxury which, when their turn comes, will be chosen by others also."

Beth, these lines will stay with me. Thank you for them.

wendryn said...

I'm crying.

I can't say more than this: your writing, as ever, is evocative and beautiful, a reflection of you.

I'm not a hand to hold - too far away - but I'm still here for you.


FridaWrites said...

I am not turning away. You said you can't imagine what it would be like to love you--I can't imagine what it would be like not to love you! You are absolutely the most giving person I know. Even with the memory loss, the smartest, in common sense as well as an academic sense. Your soul is good and kind.

I am glad you have a hand to hold. This means more than anything at difficult times.

Thank you for the explanation about 1/1000 the energy. Although I can't feel your experience directly, I want to understand as much as possible. I think I'm at 1/100th the energy; at 1/10 the energy I can still have a pretty normal life (I become super-efficient).

Kate J said...

Beth, I'm so very sorry to read that things got so bad for you. The only good thing about it is that Linda is there to care for you and love you. I guess that's the most important thing in a marriage, that you're there for each other when things are as bad as they can be.
My thoughts are with you both today, as much as they can be. I don't pray... but am sending as many positive waves as I can.
With love and peace

Lene Andersen said...

I'm torn here... torn between the friend who loves you, who wishes I could be there, too, to take your other hand. Torn between that and the part of me that is in awe of your writing. This was brilliant, heartbreaking, deeply evocative and... brilliant.

Aviatrix said...

Triage is about limited resources, when there is not time or staff or supplies to treat everyone. So the wounded are sorted into three categories: those who will be able to recover without medical intervention, those for whom nothing can be done, and those who receive treatment. So a person can be either too sick or not sick enough to receive treatment. It's supposed to allow the maximum number of people to survive.

I'm used to thinking of this as a field hospital or disaster area system, but you've pointed out that it occurs to people like you in a city that is not in a war zone or the aftermath of an earthquake. Sobering.

There is, in the triage system I was taught, one more colour of tag. I'm not going to try to pretend it makes it a good day, or decreases the crappiness of the day one iota, but a red tag is a lot better than a black one.

Stephanie said...

You write so poetically in this entry.

No, that doesn't help, but ... what will? I'm thinking of you, Elizabeth.

cheryl g said...

This is such a powerful post! It brought me to tears and still does on the 4th rereading.

You write, “What does it matter to me, who can’t imagine what it would be like to love me.” I can’t imagine not loving you and do not understand those who don’t seem to be able to. You are beautiful, generous, amazing and my life has been made much richer because I know you.

I have thought about you a lot this week and I realized that my hesitance to touch you comes from 2 things. I am loathe to cause more pain with my touch and I am leery of rejection when you are too sensitized to be able to tolerate touch or the heat from my hands. I am not willing to let fear dictate my actions anymore and I want to touch you and hold you. I will try to do better at that.

I will not turn away. I will not leave. I will reach out for you so there’s another hand to hold.

Elizabeth McClung said...

Rachel: I think what you say about the sustainable stable quality of life is true. I focus on the future, on what was accomplished to skip over the 95%. After trying all day, I didn't want to go to bed without people having seen a glimpe.

Thanks for listening, and pop-ups and the future, the days when the future is gone, that I realize how long I have waited. I was told today after I explained that 'my GP' had not after two months even renewed prescriptions and was told, "That's what you've got Elizabeth, there are lots of doctors, they just don't want to take patients, or have practices, there are lots of locums around."

Yanub: I want to be you, and understand what it is to be me from outside, but I can't, much like every hyperextension and dislocation bonds you to a reality which cannot be concieved by 99% of the population. Linda is centered, without that, life would be very isolating, desolate.

Wendryn: I wanted to cry so that you did not. But the thing about this is it strips everything away, the good face, the bad, the weaknesses all exposed. The face I wanted to show the world worn down until the quiet conversations in the darkness are shown.

Live, and cook, and celebrate. I thought in envy of those who were 'passing me by', but I think there is a time to dance, a time of joy, a time of sorrow - I have all of these and I will try, within my 1/100th to have them again. You know me, you hear me, but make sure you live, love, embrace, delight, strive. I would. I am.

Frida: I think of you more than most. How rapid it has been from advocate to enebral, from cane to power chair. Your energy still radiating, but to those who are used to people who understand what it is like to fight against the weight of exhaustion.

You are super-efficent, and you will keep using that to survive. I want a life for you and your family which is more than survival but security and stability. Maybe you don't have these types of conversations yet in your head late at night. I can listen too, when you need it.

SharonMV said...

life goes by me, those who live pass by. They don't have to avert their eyes because they never see me. But in their hearts they have turned away. When people don't see you or hear from you, they can can return to their world of denial & assume that you're OK or even "better". They don't want to think about you being ill, let alone dying.

Thank you for describing the fatigue, trying to quantify it. People just don't understand how bad it can be sometimes, how no amount of will power can overcome
it. Sometimes even the iron will of Beth can't overcome it.

I'm not turning away. I wish I could be there to see you, to help & to hold your hand.


Raccoon said...


A hand to hold.

Kita said...

Beth, my hand is anothe one holding yours. I know I have been silent, but I have been here. I have no idea where you get your strength from.


Baba Yaga said...

What is it like to love you? Easy.
Frightening: because love can be selfish, and we don't want to lose you, at least not yet.
Inspiring, which is a word only to be used with caution in the context of illness and disability: but perhaps inspiration is in the nature of love. Or perhaps it's just in our nature to love where we find inspiration. (Or both.)
Taxing; which is no ill thing!

That's a little of what it's like. Why one would... ahh, I know how hard it can be to understand that. That you are loved by such a select lot f people should be evidence that there are very good reasons, even if you cannot see the reasons.

If I had to pick but one, it'd be your dedication to truth; but it's how that intertwines with your whole you-ness which makes you so beautiful.

(Linda's rather a beautiful soul, too. Thank you for that glimpse of the quiet time in the darkness.)

David C. Jones said...

Reading this makes everything else seem so small. My thoughts are always with you.

Neil said...

I think you are VERY lucky, Beth, to have Linda. She's wonderful. And you're pretty wonderful too, you know.

Your writing is concise, powerful, and sensitive. I know I can't make things better, either, but I can listen and read. And if I were near enough, I'd be holding your hand too.

Of course, with so many of us holding one of your hands, your next project must be the cloning of more hands.

I know your views on this so-called festive season, dear, so please accept this wish to you and your wife for a Happy Zombie Cannibal Day.

From the frozen Prairies, a virtual hand is holding yours.

Love and zen hugs,

rachelcreative said...

Well just so you know I'm still thinking about you. Thank you for being a good friend. I'm thankful for all that we've shared.