Saturday, October 18, 2008


This is the time I wish there was the climax, the aftermath. Linda and I at a formal, a good night for me, sitting upright. That’s what books are like. And then there is the fade out with the warm feeling.

Real life is about waking up on the floor, real life is about cooking your own organs from your body dying. Real life is about being rolled over on your side to be drained so that you don’t drown on your spittle, or when you pass out half way through drinking a coke. Real life being scared EXCEPT when your body isn’t telling you to breathe, when your pupils are fixed and the voices are very far away. It is all very far away. Real life is having bruises you don’t remember getting. Real life is money. Real life is when a lapse of memory means running out of a medicine because you have six or seven, and there is always one or another about to run out. Real life is having to pay money for a book on “dying with dignity.” Which is a joke because when your hair is ripped out, your clothes ripped and stained while people try to move you or roll you to clear your airway, and you are drooling on yourself, the idea of ‘life with dignity’ seems more interesting.

Real life kinda sucks.
Sometimes, you get beaten so bad, that even if you got up, no one would be able to notice. Sometimes a small stoke is a “good day.” And you wonder how the people they send can do “assisted living” when they don’t to appear to have woken up to life yet?
This is the point in the book where the protagonist feels a clear sense of happiness and victory. Real life is seeing pictures of yourself smiling at races and not remembering what that felt like. Movies hate real life. We hate real life. This is death, this is goodbye. And it takes a while before all of the body and brain stops moving. Our society is scared of it, maybe readers are too. Goodbye.

I don’t have the chance to leave, any more than today I had the choice of where the drool would land. Spittle. I wonder not if my hair will keep growing afterward, but will I die and STILL have a mouth full of saliva?


SharonMV said...

Dear Beth,
I'm here, reading. I'm scared, scared for you, but I won't be scared away. Wish I could be with you, be there for you. Love you,


Caroline said...

I hear you Beth, it's all I can do for you but I do, I really hear you and I'm not going away. x

JaneB said...


still here, still listening, still caring.

thea said...

"And you wonder how the people they send can do “assisted living” when they don’t to appear to have woken up to life yet?"

While I love the way this is expressed, the irony, and in fact the understatement of how inadequate your staffing is, I feel for you with the support you're not getting.

These people clearly need training about what life is! Surprising they don't get it. Every time I do something like watch a video of, for instance, ELizabeth playing badminton to funky music, or something like that, I know more about what life is. Every time I see someone do something kind or caring I learn more about life.

How is the world so dense?

Abi said...

I am scared, too. This certainly isn't how it is in movies or books; I also prefer their versions for the most part. Most characters wouldn't be portrayed as being quite so eloquently communicative as you at this stage, though. You win there. As do we, because we get to read what you say.

As always, I am here, and I am reading.

kathz said...

All I can do from here is send my love and concern for you.

OneSick said...


Real life is ugly, smelly, farty, spotty, painful and full of icky-gooey stuff.

But it is REAL. As are you, which is the reason I come back here everyday.

The art you used in this piece is beautiful, BTW. Not real, but gorgeous. I suppose life (or death) is about finding a balance, somehow between the real and ugly and the unreal and pretty.

That makes no sense. But it sounded good!

Hang in there,

One Sick Mother.

Cygnet said...

Sending love to you.

yanub said...

I am not scared off by the fact that you are dying. Pissed off by the treatment you are receiving, yes, but not scared. But maybe it is fear that drives Beacon to be so stingy, so cruel. Maybe it is fear that directs social policy into narrow and callous decisions.

Neil said...

Darn, Sharohmv said exactly what I want to say...

Dearest Niece:

Yes, I am somewhat scared of death, but death is a part of life - a natural consequence, one might say. But I am also not leaving until it's over for you. As hard as it may for you to write, and as hard as it may be for me to read, you're stuck with me until the end. I also wish I could be there to hug you in person and to help however I could; ut I can't be and I'm sorry for that.

Nope, death is NOT dignified, but sometimes the person who's doing it can be. I suspect you will be.

Love and hugs,

Neil said...

I meant to add that the images are, once again, perfect. The mountains look gorgeous, but it would be lonely up there; the house on the island looks even more alone. The log cabin just looks cold.

Still loving you,

wendryn said...


I'm sorry I'm so far away. I wish I could help. I've seen several people die, and dignity...well, if you manage to die with dignity, you're one of the lucky ones. I think it's a fairy tale to make the rest of the world happier about death.

I'll keep reading. I'm sorry it's so hard.

Anna said...

Well I won't say goodbye but good nigth. Take as good care as you can.

Your'e right. Neither life or death makes sense as beautifully as they do in movies and novels, at least not a lot of times.

good night

Victor Kellar said...

I'm not scared. I'm not even sad. If you are making a choice, if the end is what you want, I can't be sad.

Collette and I are your friends, we support you. In whatever you choose. Whevever you choose.

We love you

cheryl g said...

I wish I could make your real life better. I want to scream and curse at this unfeeling universe that has made you go through so much pain. I want the power to change your reality but the universe doesn't seem to want to grant it to me.

So, I do what I can. I am here. I witness. I pray. I try to ease the burden. I am not leaving. I love you!

missnomered said...

Elizabeth, that was beautiful and heartbreaking.

I'm sorry I haven't commented in a while, but please do know I think of you often and wish you the best.

Raccoon said...

I don't comment for couple of days and you start saying "goodbye?" That's bogus!

Oh! A metaphor! (Or simile, or something like that.)

When I ended up in the chair, I felt a bit like that. It didn't feel good.

I'm better now.

Raccoon said...

Oh! Today's mail included a raccoon! And an anime girl with a big gun! Yay! A card from Beth!

And your handwriting is still amazingly neat and tidy. I think, even when I was AB, my penmanship wasn't that neat.

(Another postcard to tape to the edges of my monitor!)

Lene Andersen said...

Real life isn't pretty. Real life is sometimes beautiful, even with the spittle. Like this post - it's real, raging, sad and beautiful, all at the same time. Real.

I am here. I am not leaving. Wish I could be closer.

Tammy said...

I'm so terribly scared for you, but I can never be scared off.
Real life sucks. I understand why so many slip off to fantasy land.
I'm here, I care, I'm listening, I'm scared, and I wish I could be there with you and Linda and Cheryl.

Perpetual Beginner said...

Real life breaks your heart, and when you put it back together, breaks it again. But it can only happen when you have a heart.

I'd rather stay with reality, however ugly and painful it can be, and have my heart broken, then retreat into beautiful unreality. You have all my admiration that you stay as real and raw and heart-broken as you are. The pictures are beautiful - you are real, and terribly precious.

Elizabeth McClung said...

SharonMv: Yeah, I was a bit scared yesterday, but we have times like that, I want to be there the times after your IVIG.

Caroline: Thanks, I determined to blog even after five hours of being speechless and only having use of one hand. Thanks for listening.

Janeb: Thanks for remembering Linda and Cheryl, if it wasn't for them, I wouldn't be here, and that cost them in time and energy too.

Thea: Well, when they can't "get" why I would do badminton because "Hey, why not watch TV instead?" and my life NOW is more exciting and demanding and then they condescend to me, they are not going to get the importance of loss and grief over the lines I have set on going out or exercising, my "Life" getting smaller.

Abi: yeah, if it wasn't for the book The Diving Bell and the Butterfly, I wouldn't have understood the slightest, but of course, that WASN'T ME - when I read it, when I watched a film about a person dependant totally on a family, draining them petitioning for euthenasia, I didn't "get it" in my gut becuase it was an academic question, the essays well written about an unusual circumstance, it wasn't ME. Well now it is and how do I explain to people that this is LIFE, this is part of the condition and this is DEATH too - that like someone with cancer moving through thier body, they are in a way Dead, just still moving, the black mark on them, until finally the cancer takes over and they stop moving. There is no war between Life and Death, but here a war between me, what I can do, and THE BODY, and what it decides to do - which yesterday was sprain wrist, sprain both shoulders, crack or bruise ribs on one side, bruise body, make the right leg damaged and that was only part II. I woke screaming in the night, that is LIFE. And not just for me.

I am glad you are still reading, I read your blog, not always enough energy to comment - I think more should comment as you turn the usual into the witty.

Kathz: Thank you, and back at you, sometimes the body screams so much I can't think of others, but when I do, I try, becuase I have to remember I am not what is important, that what strength I can give, I should. And that is the spaces between, which people don't get either. Someone condescended to me on "how nice it is to have a hobby". And talked to me as if I had severe mental developmental problems. Because I was on oxygen in a wheelchair.

Onesick: Yes, you get this, farts and ick and pain so bad that you are trapped in bed and need two people to lift you out, what dignity? Haha. I was originally going to just post the pictures but I remembered that Linda said that very, very few people know how to understand me when I talk entirely in concentrated metaphor. No, not real, but a form of communication, for me.

Cygnet: thanks, and love to you too.

Yanub: I think it is what makes people want to talk about old age instead of dying or about health care and curing and 'preventative medicine' becuase as they say, they pay tens to hundreds of millions to get a machine to look at the little bits of my brain, but I can't get the funding for someone to help me soap my underarms and take a shower or wipe my bum. So that says what we want to look at - the stable, the people who will recover, society wants hope (for themselves perhaps?) so bad, they will let those who don't fit, fall by the wayside.

Neil: you sort of portray yourself as a type of gum or fungus that I can't get off my walls. I am glad you will be here to the end but you don't need to be so grim about it. Even Cheryl, who knows and talks, by staying here while Linda was away said she finally understood Disability Time, the time to take off clothes, to shower, to do the hair, the rest in between the rests to cool down again before I can go out and wheel somewhere - all planned and yet it is 3 hours minimum for what people do in 25 minutes. Disability time. I guess there is Death time too - time lost, memory lost.

Wendryn: Since I sprained both shoulders in my grand mal and did something to my right ribs I will take a VIRTUAL hug. Yeah, like I said, dying, but there is a slow train wreck. I just had a REAL LIFE day, so in my face, I couldn't pretend and laugh and joke becuase breathing hurt, typing hurt, I could see a bit and after the worked on me and I still couldn't swallow for five hours I sat and worked for 90 minutes to make that blog after 1 am at night. I will be here with you, the living, thatis how important it is to reach out to me.

Neil said...

A fungus, am I? Well, dear, you've grown on me too, so we're even there. :)

Very gentle hugs are what I'll send tonight, in honour of the bruises and sprains.

Lots of love and positive thoughts too!

rachelcreative said...

Ugh. I'm sorry it's so hard.

Beautiful pictures. I love the one of the house on the island. Looks so peaceful. I'm surprised I see peace and not isolation but that must mean my brain is still thinking positive.

FridaWrites said...

Somehow I missed this post. The losses of dignity are indeed difficult and probably what I dislike most about the medical profession.