Tuesday, December 14, 2010

"Challenge on Earth": I don't want peace

I’d love to tell you I was away on some glamorous assignment, or dangerous one. But I wasn’t. I had been invited to a concert and I couldn’t go. Linda decided that we should go out to dinner to make up for that, with coupons we had from some time ago…but I couldn’t go. I did make it to the second farmers market this year, snuck it in. I guess there are the good days and nights and the bad ones.

I had a couple bad days, and one very, very bad night. I wish I knew how to describe a bad night; maybe like when you got food poisoning, that feeling before everything came out and you started feeling better. The knowledge that something is wrong in the body and for me, I have to hope that sleeping helps it, because being super-hot without sweating and a heart rate over 100, isn’t something a hospital can fix. It causes some suffering, and a lot of paralysis, so much paralysis these last few days, but it just is what is.

Bad days means the pain breaks through, or it hurts so bad I cry, or snap. It means I don’t know really much of anything, including what happened a few hours ago, but I try to be in the now and here and figure out how to help, if that is what needs doing. I don’t recognize anyone but Linda, and I just hurt, sometimes when waves of grey like concrete dripping and solidifying off my bones makes leaning against the wall all that I can do.
The minutes, the days, are what I said to Linda were what people say, just spending time together. Linda has an idea to put something on Amazon toy section and it sells in a day, I put something on and it sells in a day. It is electronic money and not ‘real’ but then what is ‘real’. Linda says not to worry, she ordered some pills this week, and I guess that means something. It means don’t worry. I try to figure out what day it is and when Christmas is, since I am still building up to Halloween. For me, I think it will be a Jan. Xmas, as I send out presents as I can, both in matching them up and writing. I look at the window and wonder if I will live to remember what the outside looks like.

It is raining, and I am scared when it rains. I just don’t remember why.

Every night I thank Linda for taking care of me that day. It helps for me to remember and her to know that I appreciate it. Thank you, anyone reading this who has helped me, or been there for me, or helped Linda, because I’ve learned that being alone and ill is really hard.

I have ideas, between the moments of pain in the bed. Ideas on how to start a business, or how to reach the people who are inside, and have no contact with others, wild ideas, ideas I wish I had the energy and hours and days to do. I had a dream of learning a sport with a long pole and a double blade at the end, it is sort of ‘neuropathy epee’ as you do rotations, and in a swing, try to peg the blade through the other person’s foot (they have special shoes). I wear a kimono with the long sleeves in this sport and I really enjoy it. I am learning very quickly and this annoys those who have been there for a while. I don’t understand the frustration people who must in their heart know it is a hobby have toward those who hunger to learn everything. I was smiling that wide grin, and I practiced and practiced with the blades between club meetings. I couldn’t get enough. It is the first positive dream I have had in three years, Linda said.

If there is something after this, some after-life: I hope I get to challenge myself, because that is what true joy is for me. I realize now why I never had peace. I thought I was cursed, to be like a mythic figure who is denied peace in the heart. But for me, to risk and challenge myself in every way, to focus my entire being within the limitations, seeking and learning new ways of excelling, in pain, with new callous’ or bleeding, that is what gives me joy. I don’t want peace anymore. I want to try, and fail and try again.

Not really the statement someone who has so much medication attention should be wishing. But I do, because failing, and getting hurt is part of being open to change, and challenging myself, completely, requires change. Here is to ‘change and challenge on earth’ instead of peace this season, at least for those of us who need it, and keep nudging the systems to show that things can be done better.



You have the most amazing attitude to life and death of anyone I have ever met. You have MOXY girl! I feel priveleged to be along for the ride...even if my seat is waaaay at the back.Love ya Beth ,you're gorgeous <3

Aviatrix said...

I can't think that you would ask for peace, considering what it means when people say, "she is at peace." Go on disturbing the peace for as long as it pleases you. Please.

Lorna, Bob and Liam said...

Ok, I was going to try to say something either profound or funny... and Aviatrix totally beat me to both. So: what she said.


You obviously thrive on challenge, I just wish more of it was by your choice, you know?

Much love, as always...

wendryn said...

Yup, Aviatrix beat me to it, too.

I'm glad you are still fighting. I'm glad you are still here. Peace is overrated.


Raccoon said...

Some of the descriptions you come up with, like the "waves of gray," are simply amazing.

I like the last picture. Life among the bones.

cheryl g said...

Ah Sis, if there is one thing I know it is that for you meeting a challenge is that moment the rest of us think of as peace. Then it is time for the next challenge.

I agree with Aviatrix that you should go on disturbing the peace. Just, please try not to get arrested.

Waves of gray... yeah that is a very evocative description.

Kita said...

Waves of grey - I know 100% what you mean. Its a terrible place to be in, and for those who live it, I have the deepest respect for. Beth, you are the most wonderful person I have ever had the privilege to 'know'. I wish you as much disturbance as you need to grow. Aviatrix said it best!

Lots of love, as always..

SharonMV said...

Dear Beth,
I'm sorry for the bad days, the pain & sickness. The bad nights - they are so long and lonely. The only challenge then is to survive that night. Then you can go on to the challenges that bring you joy & accomplishment.

the good dream - it could be because you are sleeping in less pain. I remember your descriptions of terrible nightmares when you were in bad pain. I hope you will have more good dreams. I like dreams that tell a whole story & create their own world.

No, peace is not for you. You are still & ever a warrior. Challenge, yes. And I hope, much joy.


Neil said...

Trying to someone in the foot is a good dream?? Okay, you're dreaming that it's a sport, and the special shoes must protect the feet, but that still strikes me as less than "good."

On the other hand, you're not dreaming of really ugly stuff, so I guess it balances out as good.

"Peaceful" would be good; "at peace" would not be so good for you. Less pain, more time in the right world; those would be better.

Thank you to Linda from me, too, for looking after you. You're BOTH beautiful!

Love and zen hugs,

Karolina said...

Your strength amazes me. I wish I could be as atrong as you are. To fight. Fight for what I believe. But so many times I find that impossible. I just fold. Sleep. And then sleep some more, hoping that the problems will go away on their own. You inspire me, but I need to be stronger to make something of that inspiration.


rachelcreative said...

It's familiar to me the frustration and sadness of having so much time to think of things I want to do, have all these ideas but not have the energy or reserves to do any of them.

Then when I get a little better or have a good idea the challenge of not trying to do all of them in one day and thus triggering lots of bad days to follow.

Sorry to hear the pain is breaking through and you're having bad days and nights. Somehow I know that you're definition of bad is probably worse than a lot of people can imagine.

I'm due to send you a letter this week but it won't make it through the post for ages because of Christmas so I might scan it and email it to you to print out, or send something electronically :)

tinarussell said...

I’ve never settled on what I think of the idea of an afterlife... but my ideal Heaven, the one that’s always been in me, is a beautiful, endless complex of pretty white walls and gorgeous shower rooms and I have everything I need to make art and meet people and have lots of sex into eternity. I like that you say that your ideal afterlife is one where you’re constantly challenged, because my ideal afterlife is one where I get to keep making stuff up. ...That’s my ideal current-life, too, of course. Hmmm...

Olivia said...

I love that you invented a new sport in your dream and were so enjoying the process of mastering it. It is just so.... YOU! Yes I agree with the others, disturb the peace as much as you need, want, and love to.

Elizabeth McClung said...

Karolina: The greatest fights I have fought were those where to those watching, I sat doing nothing at all. I did not give in to the depression, did not drink myself drunk, did not take pills to overdose. Most victories for those who have from fatigue to depression are ones which will never be recognized.

I wasn't blogged yesterday: I don't know, I think for me, dying and living used to be the same, and now I realize they are not, but that they are closer than I believed (okay, now that got all wierd and mystical or something). I will become more, even as I am physically less - my decision, commitments.

Aviatrix: Well, yes, it has been suggested that PEACE on a giant slab of marble placed above me when dead MIGHT keep me stopped....for a while.

Raccoon: I like the last picture too, it is a visual metaphor but almost literal. Nice.

Cheryl: I have always feared getting arrested, but now - maybe I should, you know, I am not sure the down side (until recently the women's prison doors weren't wheelchair accessible - I wonder how much else isn't?)

SharonMV: Well, it certain has a lot more pain and drawn out in dying than TV led me to believe. I think maybe if I didn't do extreme things like Boxing and such to push my circulatory system or wheeling to help my intestines then I wouldn't be around, but I don't want to give up on that challenge either. I do wish your wishes come true though.

Kita: Yes, those who live a life where food is bland, and all is grey are those with true faith and strength - for they fight for what they cannot feel or even see - the hope of a better life for themselves.

Neil: No, the blade goes right through the foot, I think the shoes make sure the blade doesn't break bones. No pain, no gain kinda sport.

Rachel: Thank you - when it is bad now, it is very bad. This is the time when if people wanted to be there toward the end, they should start heading this way, you know, because this IS me communicating as oft as I can.

But when I can get up, or whatever, then that is good too - and I do what I can do, if too many days have not passed so that I don't remember anything.

Tina: Shower rooms? Well, I guess each person's heaven is individual, but not even like a garden?

Olivia: Yes, that is what was fun, it was me - last night I was putting on a production and learning the use of the patient conductor from a master.

tinarussell said...

I’d make sure they had a garden just for you, Beth :D Seriously, I have an obsession with bathrooms. Magnificent, enormous bathrooms with rows and rows of showers often show up in my dreams as a sort of Heaven. ... Yeah, I know. You might have to be me to understand. I assure you, it’s AWESOME

Lene Andersen said...

Neuropathy epee is a brilliant idea! I'm glad you had a good dream.

Change and challenge on earth. Amen to that!