Wednesday, January 20, 2010

Four letter words, use them, abuse them!

Okay, I tried a new four letter word today: REST. I slept and I stayed in bed for like four hours. Then I slept again. Okay, see, I CAN rest. Admittedly, I spent that time doing emails and then afterward I did two blogs but that is CLOSE to REST right. How about we call that half-rest? Quarter?

There is a new blog post and a new layout at The Postcard Project.

I am at home, as it turns that there are lots of ways to hurt soft tissue, and most of them involve the skin turning funny colors later, but not a lot require a hospital. Not in this province. Oh, about the fall, the wheelchair is FINE!

Last night, I was up late. God, why so many colours of pain?

Sometimes I try to keep my face immobile to pretend the sobbing ain't happening.

Thank you for getting it, the last post, those who did. Thank you.

Right now, even resting is riding the wave. This is a picture of Cyclops the most deadly wave in the world....almost.
Waimea, it was forbidden to even Hawaiians and just the back surf had killed two surfers when Greg Noll went to ride it. His words describe what this disease stage feels like for me. Still alive though. But like Noll on the big killing waves, “Instead of getting smaller as I rode it, the sonofabitch grew on me. It got bigger and bigger, and I started going faster and faster, until I was absolutely locked into it. I felt like I was on a spaceship racing into a void. At first, I could hear my board chattering across the face of the wave in a constant rhythm. As my speed increased, the chattering noise became less frequent. Suddenly there was no noise. For about fifteen or twenty feet, I was airborne. Then I literally was blown off my board."

Greg made a special board. A giant surfboard for giant waves. And December 1969 a series of storms came together from different angles to combine into channeling all power and fury on that tip. Greg went to Makaha where black waves so large they had never been seen before in Hawaiian history were slamming over the beach. Alone on Dec 4th, none of the Waimea surfers daring what seemed sure death, Greg Noll paddled out into waves so large, they made the shore dark. He went on to surf the biggest wave ever ridden, before or after, eighty feet plus, before wiping out.

When stage two of autonomic failure is occurring for over two week, three weeks and there has not been a regular heart beat for how long? It is riding the wave.

Even resting is riding, the chattering noise become less and less. I don't want no noise. I want a bigger surfboard.


Kita said...

I remember the day my doctor told me 'Rest' I laughed at him - with 3 kids all under 10 (at the time) rest was the last thing on my mind.
Years later, with the kids in care and me on my own, alone with my FMS, I do nothing but rest. I am basically bedbound except from the times when I am dragged up to the horse - it used to be every day, but now I'm lucky if it is once a week. Still, he is being taken care of, so I can rest easy about that.

Yes, my sister. Rest. It is the most difficult, absurd thing to ask of people who are used to getting up and doing.. but it is so important. I know it is frustrating. I know it is horrible. But your body needs it.

Take it easy, sis. Cry when you need to, there is no shame in tears. And know that you are not alone. Ever.

Much love.

FridaWrites said...

Riding the wave is a metaphor that's also used for childbirth to deal with pain, for staying centered despite physical sensations so strong they pull you down. I also think it's a great metaphor for what you do, though unlike with childbirth, your pain is of a lot longer duration. I'm on a surfboard next to you, trying not to go under myself and urging you on.

wendryn said...

I'm glad you got some rest. The image of riding a wave that big is terrifying and quite appropriate. Here's hoping for a bigger surfboard.


Neil said...

Thank you for trying to rest, Beth. Now, if we could only eliminate other four-letter words, like Pain, and Fall. Do NOT attempt to abuse those words, please! Of course, those words shouldn't be abusing you either.

I'm still here, still caring. Some days I get it; other days I only think I get it. Thank you for teaching me, or trying to.

Love and zen hugs,

rachelcreative said...

I hope there's a way for a bigger surf board. The noise of the wave must be relentless for you.

Today I've been making a pop up for you. I can hope that for a moment, when you open it, you can forget about the wave just for a second or two.

I wish I had more to offer. I wish I knew how to make surf boards.

Aviatrix said...

For us, reading your blog is a little like watching you out there in the surf. You emerge, on top of the wave and we see you coasting along there for an entire blog post. Then you go down and we don't know how far underwater or for how long. We get glimpses of your head, still afloat as you respond to comments and then we hold our collective breath again, wondering if you will be able to make it atop the next wave.

Always glad to see you again. And you made me LOL over the wheelchair being alright.

Lene Andersen said...

That's a really good term for it - riding the wave. It really feels like that where you're caught in the grip of a Cyclops kind of pain. It just grows and grows and when you think it can't grow any more, it does. Relentless. Frightening. Oddly exhilerating (that's the pain delirium hitting).

And yes. For you, that first paragraph constitutes rest. Way to go! ;)

Anna said...

Take care. Rest is very very good. And yes, a bigger surfboard is what you need. Sorry it seems so hard to get it.

Hope that the waves even out a bit.

Ellie said...

That is an amazing story and powerful imagery. I quoted it on my blog (with credit for you). I can take it down if you want.

Here's hoping for good waves for you.

Olivia said...

Well done with the resting. Now do it again! The riding the wave image is a powerful one. So many of us are now fervently wishing and hoping for your surfboard to get bigger. Is your doctor(s) any help?

SharonMV said...

Dear Beth,
Keep trying the R word - you doing very well (for EFM). I'm so sorry that your in so much pain from the fall. You are bruised & battered, but paddle out to meet the waves again. I remember times when I was sick with infections & having terrible migraines,(oh, yes in the old days I used to get a raging migraine with every infection including sometimes the dreaded eye-pain migraine or the ear pain migraine), in a fever, shivering & burning at the same time, and suffering the joint & muscle pain, neck pain from the lupus flare that came with each infection. All you can do is hold on for dear life and try to think this won't last forever, something will ease. But you, Beth, are up there riding the big wave, without even a board - riding the water & wrestling the power of the sea. Like Odysseus, fighting the sea god, Proteus, you hang on through every form & shape your disease can manifest. Odysseus won his fight with the shape-shifting god just by holding on.


e said...

I'm glad you were able to rest a bit...I like the new layout for the Postcard Project.

Jill said...

if it helps an gentle hug and an I love you,, Thank you for the postcard..

Raccoon said...

Can you fit a big surfboard in your apartment? I mean, it sounds like a fun way to go flying, but he wiped out at the end. We don't want that to happen.

Yes, that four letter word: use it, abuse it, and repeat ad infinitum!

cheryl g said...

Great job on the resting! Now you just need to do that a few more days in a row so you can make sure that fever stays away. The description of riding the wave is a vivid way to describe what the pain and autonomic problems are like. I really want you to have a bigger surfboard too.

Dagny said...

I'm glad you are resting.

and I will hope that you find that bigger surfboard.


JaneB said...

I love the analogy. Keep practising the REST thing - become a world expert at SNOOZING on that big board!

Denise said...

Maybe it would be easier to rest if you thought of it as an indulgent, raunchy kind of nasty word instead of the icky and tragic kind of nasty. Though I suppose company would help you with that shift, too. :p Perhaps joint project with Linda?

*hides under a pillow*