Wednesday, July 02, 2008

Your life, your credit. My team, my life, my choices (Version 2).

I have an apology and some explanations and thank you's to give. Last week I was in a bad head space, and to be completely truthful, after 36 hours of continuous pain, I am not in that great a one right now, so I am going to try very hard to think and write clearly. Also, in trying to write this, Victor and other brought to my attention that I forgot things like "sharing" so I have tried to rewrite this, and I hope it makes sense, and if it doesn't....er...I blame the drugs!

Last week in a post called “Angry” I wrote: “It is difficult to explain the depth of shame and pain I get from finding out that people are imitating me; and now the suffering they feel, is to me, my responsibility.” Just to clarify here, that is a stupid, arrogant and self centered statement that I want to apologize to all of my readers for making.

A lot of my readers have disabilities, many of them have little support, less than I do, and many others are single parents or parents of children with special needs, or caregivers or just people ‘getting by’. I do stuff and I write about it. What gives me the right to say how what I do or think can be used by people, particularly people who are using it to motivate themselves, to use it like a cheerleader in the mind to get them over that bad patch? I don't. I have NO right.

I write what I write and I would LOVE to hear in an email or comment if that helped you do something. You are all mature individuals and you know your conditions and your lives and it was arrogant AND presumptuous of me to think that it was all up to ME; all about ME, MY fault, MY responsibility if anything went wrong. If you have CFS/ME, or you have Lupus, or you have Lymes or you have three kids and you are a single parent and something I write speaks to you and says, “Let’s go adventuring!” and you do that. That’s you! That is you taking a creative work and making it into something you can use to make your life better, and I have NO RIGHT to claim or even imply credit for that; if you went out and dug a garden because I went out and did a race, then great! I’d love to hear about it, love to hear how it went. Because you know your condition and you know that my condition is different, and you are an intellegent person. And if what I wrote made you think, I'd like to hear that too. But to claim it as "my responsibility"? Come on!

I was being an ass when I made that statement in "Anger", and I hope you can forgive me. I take people’s stories too, I read other people’s blogs or emails and I get a voice in my head saying, “Go and do likewise Beth!” But at the end of the day, that is my choice (and my decision to take those risks, not the people who I imitate), and while they inspired me (yup, they, and that includes you, the readers that "inspire" me – so back at ya! You probably 'inspire' me more than vice versa - seriously, I had no MP3 player, no music, so who did I talk to in my head during that race - well it was all of you!) I made the choice. And while I appreciate, desire and in may ways need the support to complete that choice, I am the one who has to actually do whatever crazy thing it happens to be and then I am the one who because of that choice has to live with the consequences.

So please forgive me and let me back in and tell me the stuff you are doing?

I just re-read that last bit and rewrote some, as it sounds like we all need to be very selfish and that we can't do things together and that is not what I meant at all. I do not achieve alone, and yes, people do deserve credit for helping me, for inspiring me and later I hope I make that clear. What I was trying to say is that, if people ARE inspired by me, and I am in a space where I don't know how to deal with that, or what to do, well, that's my issue! But I hope I am gracious enough to support them, and care about them and hope that they succeed, as they have done so often for me. But no, I don't have the right, to determine what they do, or why they do it or what parts of my writing they use or don't use, and the same of my life. But that doesn't mean we all live alone, that we all must struggle alone, grabbing what we can from others. I hope we work together, have fun together, like the May Madness weekend. I just, felt it was very wrong of me to put my own doubts, my own fears, my own worries about how others were doing because I didn't want bad things to happen to them and so I said something that implied those who are inspired by me, if bad things happen (as they sometimes do), they it was THIER fault. And that was immature and very wrong to write and I apologize.

And while I might or someone else might inspire someone to do something, in the end of the day, the person who made the choice, they are the ones who have to gut it through; who have to see it to the end. All I can do is try and support them as much as I can. And so they are the real (oh, another one of those 'words' coming up) heroes. Okay, I hope I explained and apologized enough and we can move on?

I realized today that I have a VERY surreal life. I mean, I am having seizures every day, and debating going to the hospital and then… a few hours later, go and do a 10K in a racing wheelchair. And then go right from the finish line, and the first aid tent to back to being on oxygen and not moving and having little seizures that day.

I have actually gone FROM the hospital, stopped at home to nap and then gone directly to boxing, or badminton with the hospital ID bracelet still on my wrist. So I admit, this is NOT really a typical life for anyone, is it?

So yeah, I went up tonight to do badminton because my right arm is getting purple/black and I wanted to see if that improved it. Well, the badminton DID make my right hand twice the size of my left hand (I showed everyone the neat ‘freaky human trick’) but then had to leave when my arms were green (too hot!). And now I am back on oxygen. And in pain so bad that I am doing the “how many minutes till my next pain pill?” Plus a new overnight care worker came; I said to her, “I’m not at my best, you know the whole 36 hours of continuous mind blowing pain.” I REALLY hope that tomorrow that goes back to normal: the annoying to aggravating pain.

But the thing is, how do I get to live this life where instead of being curled up into a fetal ball, I go out and do stuff? Is it because I am some super crip, or heroic or some dying woman who is living life to the fullest. The answer to that is no, no and yes. And some part of that is me, but the other part of that is the people who support me. Could I have done the 10K without Linda and Cheryl? No. I could barely wheel back to the van to ride home much less wheel down to the start and then back again. I could not have snapped the cold break packs, or stopped the EMT from putting blankets on me and warming me up. I did not get the chair ready the night before, they did. They put out my clothes, they talked to me and kept me calm. I could not have done the race without a woman named Janet who fixed my racing chair and gloves because she said, "I want Beth to do what Beth wants so much, to LIVE.....right up to when she dies."

Sure, I was going to badminton tonight solo but Linda nixed that and came and did work for her job on the laptop, just to keep an eye on me. That is how I am able to do all these things and live to write about it. In the same way, how is it that I am able to write EVERY SINGLE DAY? Is it because I want to leave a record, and have some meaning to my life? That I have set myself a challenge? Sure, but it is just as important that I am part of a community of people who are there to lift me up when I am down. The readers, those who comment or not, are part of my support network. They are my family, my friends and the people who I share my life and vice versa. The people who send me packages, and gifts and postcards are the people who are a physical part of my life. The 90+ people I send postcards to are people who I am emotionally invested, who I take delight in finding “just the right postcard” and “just the right sticker.” I do it for them, yes, but also I do it for me, to be connected to humanity and to care about humanity.

I am able to go to Goldstream, and to the Cemetery and to the 10K race and everything else because I DO have a net of people supporting me, some right here like Linda who hold me up. I KNOW that many of my readers do not, so making comparisons in such cases is unproductive. I am fortunate and I know it. What would I do without Linda? I would be lucky to get my groceries. Getting my stuff from the pharamacy and to my medical appointments would take up ALL my energy. It is because of her and others that I am able to have choices in my life; and about what to do with my life. And this week that choice was to do a 10K and now I have to recover from that. And she is there to help me.

Up at badminton, one of the guys who was pretty stand-offish for months came up and said to me, “It is great that you come out…..I mean, that you come and play badminton in a wheelchair at ALL is incredible.”

And I said, “Well, if I WON, that would be incredible, but just coming out and trying, that only gets me a ‘pretty good’”

He looked baffled. And was probably hurt. I wasn’t trying to diss him, I was trying to explain that being in a wheelchair and going three blocks to the Y is not incredible. If he wanted to think I am incredible, look at the time and effort I have put into the sport of badminton and how I am improving myself. I told them I was a bit tired as I had won the 10K race in the yesterday.

He and his girlfriend were totally speechless, “A 10K….in your wheelchair?”

I avoided the “I find it easier than dragging my body miles with my arms” line and said, “Well, in a specialized racing chair, but yeah.” They were blown into speechless. I was AMAZING!

There were close to 1000 runners yesterday, how many had cancer, or were recovering, how many had recent losses and grief, how many had arthritis or how many decided to lose weight and took up running by themselves a few months ago? I did a race. And yeah, because I am weaker, I am facing seizures and autonomic failure on a weekly and daily basis, it was pretty amazing, but I bet there were 10, 50 or 100 ‘amazing’ stories out there that day.

What is amazing is that I have a partner and a sister/friend who help me WEEKLY achieve my dreams, who give me the chance to make stupid choices. Who are with me during the good times and the bad and who help me try to feel an equal person after a loss of memory or when I have trouble speaking. That I have friends like Maggie and Lene and all the other people like Neil who write and care, all the people here on the blog: that is amazing.

To end with a smash of realism: am I worse? Yes. There is another D word that no one wants to use: dementia. Do I have it, well according to the technical definition, I do some days. Will it be part of my future, I hope not. Am I weaker? Yes. Am I thinner than a few months ago? Yes. Do I have less reserves regardless of whether I try to horde them or not? Yes. Have I had a remission? No. Am I going to? Probably not. Do I have to fight fear and depression and pain every day in order to do what I think will give my body the best chance for a longer survival? Yes. Will I continue to pursue my dreams, whether they be sending everyone who wants one a couple postcards and caring about 90 or 100 people I will never get to meet, or looking forward to a trip to San Francisco which may never happen? Yes. And I will use whatever means needed to get through a day, a week, a minute, an hour. I will use your stories from your blogs, I will use your emails, your messages: I need them. And I am not ashamed about that. I need them to keep going. I may not get to thank you individually, so thank you. Yes, I am taking your stories and using them to keep going. And anyone who wants to take mine is free to do so, the same with pictures. It has always been so (devo’s excepted). Just try not to sell them as yours.

And thank you for cheering me on on Tuesday. I heard every one (even the silent ones).

28 comments:

cheryl g said...

"I want Beth to do what Beth wants so much, to LIVE.....right up to when she dies."

I second that sentiment Sis so I will be there helping, doing what I can.

desdemona said...

Well, why do we need to consider everyone who's done something amazing by running the 10k? Maybe we don't need to because we don't know them. YOU did something amazing, because YOU did it and we think YOU were amazing because we know YOU.

Also, running/participating in a 10k: yeah, totally nuts. I never understood people who wanted to do it. But then I am the least competitive person ever. If you want me to not do something you just have to offer to compete with me.

Victor Kellar said...

I used to run 10K races. I used to run 5K every day. Those days are gone, with my ankle and all. But I read your blog and I watch Collette preparing for her 60K two day walk in September and it changes my attitude about myself; no running from me but I am talking to a club that does medieval style sword play and wondering if they can accomodate me. So, sure, its all about me and you are all about you and we experience everyone who is all about themselves ... I think this may be sharing

SharonMV said...

Dear Beth,

You know you have encouraged me, been a friend and a muse, a fellow traveller on journeys both dark and bright.
I'm trying to recover from the last few days too, although my adventures were of a more mundane nature. and having pain days, bad pain some days. rheumatologist was not much help, but is running some more tests & having me back in a month. I guess i've progressed - it used to be come back in 4 months, then 3, last time 2 months. Now only one more month of excruciating pain & other non fun stuff before we address the problem again. But i think he is starting to listen. thank goodness I don't have to rely on him for actual medical care & pain relief. My internist (my primary doctor) is back & I'm going to see her in the a.m. And then back home for my 7 hour IVIG infusion.

So glad to have you & this network of friends you've built in my life.

Hope you are feeling better tomorrow.

Sharon

Elizabeth McClung said...

I changed the post becuase Victor reminded me that there is SHARING and that it isn't all about me or other people doing things all on our own but about connections and doing things together and finishing things or even trying things BECAUSE of those connections. So I rewrote it - and I hope you read version 2 instead of the colder and more "I am an island" version 1 which wasn't what I had intended.

Cheryl: Thanks, thank you so much for all that you do.

Desdemona: Well, you beat me in the having kids department...but then that isn't where I am competitive. And actually, I tend to be harder on myself than anyone else. I am glad and thankful that you support me, that you care about me and I realized I didn't put enough of that in the post - so I changed it - thank you.

Victor: You opened my eyes, thank you for sharing about Collette and your desire to get back into sword play and more important that I had missed the whole aspect of sharing, that in apologizing, I was seperating people - which isn't what I wanted this blog to be about. And that those connections, to me, to you, help you and help me too (like in editing, and in finding Vitmo - did I spell that right?). But you are right, it is not just all about ourselves and so I made a version 2 and I hope it makes sense, otherwise, like I said, I blame...er....late night drugs?

SharonMV: Yes, I like to travel with you, I WANT to be with you and you with me as we go through the dark and the light. Thank you for all the encouragement you have given to me, and the support you still give me.

I am sorry your rheumatologist doesn't get that we aren't cyborgs that can do test without cost. And I am sorry you are paying that cost. I hope you recover soon. Quicker than I. Or how about "race you!"

I hope the IVIG treatment does the trick and puts you in a pain free state - how long until it kicks in? And where can I buy it on the black market?

I am glad to have you too and the network of people and thanks to Victor, I realized that while I don't deserve credit, I still want to be there, still want to be part of people's lives and part of thier support and connections.

Judith said...

You are so right about people in the race - its like a metaphor for life. Everyone with their own joys and sorrows, struggles and achievements. I remind myself of this as often as I remember because I know I can be self-centred and I can be single-minded (especially where my children and my work are concerned).
I don't think that I inspire others in any way but once somebody tried to use the fact that my sons are blooming gorgeous as a justification for leaving their husband - i.e. not all kids from broken homes are a mess. And I did put them right because my boys have had the good fortune to have a number of sound and outstanding influences in their lives that have had very little to do with me. I suppose I was just saying 'do what you have to do but don't imagine that our stories will be the same just because we have some things in common'.
But yes, we are all grown ups and we are responsible for our own stuff.
I am so glad to have met you Beth -you make me think and that is no bad thing!

elizabeth said...

Beth,

You are a one woman army. For good. Even long after you leave this world - your voice will resonate and your movements left tracks on all of us.

Thank you for that. Thank you for writing even though it isn't always easy. I for one, amoung many, am proud to consider you my friend.

Rachel M said...

You don't need to apologise for being caring and compassionate.
I thank you for being honest and sharing your experience to empower others.
I see synergy effect from your blog as if a tiny positive ripple turning into tsunami. :-)

Lene Andersen said...

I'm with Janet and Cheryl. Whatever I can do, you have it. Beautiful post, my friend.

Don't worry overmuch about the Angry post. We've all had bad days and several very bad days in a row have a way of firmly lodging your head up your arse. It's alright - the most important thing is that yours popped out again. ;)

JaneB said...

Hi Beth,

I feel that I need to respond to your post, but also that I am not QUITE sure what I actually need to say... that you're inspiring? I know you hate the word, but as someone with far fewer physical problems but depressed and often feeling very alone in my head, your reaching out from your situation, to write every day and to send me a postcard when it's such a big effort for you, well, it touches me in a very important way. Dropping in here is part of my day, and sometimes when I just want to give up and hide under the duvet, thinking of the you I've met through your words helps me keep going. Mind you, other times I just get upset at the Beth in my imagination as well as the rest of the world. And I'm busy searching for the perfect postcard to send back to you...

Gaina said...

Personally I don't think there's anything to forgive as I took that statement the way you meant it, not how it might have sounded to you in retrospect.

When you have a chronic illness or disability, you do become very inwardly-focussed. It's unavoidable to a certain extent because the nature of your circumstances means that you spend more time alone or in the company of very few people than able-bodied people do.

You nearly psyched me up into an attempt at walking today. I had planned it, but last night I must have been hurting pretty bad as I dreamed all the scars on my legs opened up and my heals where bleeding - I was even a bit scared to look at my feet when I woke up! - so I figured it might not be the smartest idea in the world! haha.

I *heart* ibuprofen.

Gaina said...

P.S. Mental confusion is also a sign if dehydration so don't consign yourself to the dementia ward just yet ;-)

Perpetual Beginner said...

We all need support, some of us can just ignore that bit of reality better than others.

In truth, human beings are meant to be a communal sort of creature. When one of my dojo's brown belts stopped coming to class, we were annoyed. When we discovered about two years later that she had been dealing with breast cancer, and stopped coming to class when the chemo got to be too much we were horrified, and truthfully, fairly pissed off. She had needed help and we hadn't provided it (hence the horrified) - but because she had not trusted us enough to let us know she needed help (hence the pissed off).

You, Beth, for all your woundedness aren't doing that. Linda and Cheryl are amazing for helping you, and you are open enough to let them, to accept their love and help, to use it to do and to live beyond the limitations your body is imposing on you.

Your 10K IS amazing, and your badminton, and your cemetary visits, not because of what they are in and of themselves, but because of what goes into them, what you and everyone around you puts into them before you ever wheel to the starting line.

FridaWrites said...

Elizabeth, dear, I don't think you owe us an apology. Challenging situations create emotions about those situations. Don't worry that I ever do something risky because of you; there are many days when I've just been unable to move no matter what you're doing. I do know exactly at what point, according to pain level, I'll make myself far worse and generally avoid that.

I'm one of those stubborn people who won't always listen when I should. One of my favorite lines from a friend was, "Just go ahead and do what you're going to do anyway." Everyone advised me not to go to the concert in May and pleaded with me not to, except one doctor and my husband, both of whom knew better.

I'll take risks on my own because I want to or need to. I was told I really shouldn't have a second child, and here he is.

It does help to know that others are doing so too, and that's one reason I enjoy reading your blog. TIA one day, badminton the next. It also helps me mentally say, "screw bronze" when people suggest I just need to lessen my schedule and do far less rather than use my scooter.

retiredwaif.com said...

Hey, Elizabeth, you seriously are the one who gave me the idea of wheelchair iaido, and IF I can find someone to train me and figure out the time and money to do it, then you will be totally responsible when I am wheeling around with LIVE STEEL because fencing, well, I'm not going to say it's for pussies or anything, but... well, you do the math.

Seriously, I do like winding you up in your comments section.

I'm thrilled you finished the 10K, actually, but I do know what you mean about having support. My husband, his family, my friends, and even my ten-year-old are the reasons that anything I do is possible, physically, financially or emotionally. Putting off his own education to keep working full-time so that I can go to school AND have medical insurance, not to mention picking up ALL the slack for me? Supplementing my income with help on things like the wheelchair, or other things they think might make me comfortable? Taking on a LOT of responsibility for her little brother, and being understanding when she has the sickie mom? Yeah, these people are the reason I can keep going.

Veralidaine said...

No long or funny comment today. I am a better person for reading your blog. I want you to know that.

yanub said...

Elizabeth, when you titled that post "Angry," I think you gave us all plenty of clue right then and there that we should take whatever you were saying with a grain or two or three of salt. We know you love us.

The best thing about disability is that it really brings home the truth that community and individualism are intertwined. The best community is one that supports individual achievement and difference, and the best individual is one that gives back to community. You are a great example of that in action. What you do, who you are, how could you do or be without any of us? When we cheer you, we cheer us, too. And you give back fully. By daring to take risks, you encourage the fainter hearts among us to do what otherwise might only be a dream. Where you wheel, the path becomes smoother for those coming behind, who are not trailblazers, and for those who are adventurous by nature to take new, fresh risks that will continue to open the path for the community. So, by supporting individualism, the community benefits by having individuals who are more able to be part of the community.

Neil said...

Dear, sweet, wonderful Beth: I loved the "living til you die" phrase too.

But pain times 10 to the 43rd power, plus painkillers, plus an overactive conscience, PLUS the inner voices creeping up on a body, plus Beth = A Bad Thing.

My opinion is that you took your own phrase out of context. There was huge pain involved before writing "Angry," I assume pain and frustration came out of the act of typing it, and, well, you were angry to start with. And of course, there were those inner voices.

I read the Angry post again; both now and when I first read it, I asuumed it was the pain and frustration talking, and only listened to about half what you actually wrote, and tried to guess what was BEHIND the written word.

There's no shame in having people imitate the good things you can do; if people are stupid enough to imitate the, umm, stupid things(?) you do, that's THEIR problem. And if they're in the same medical shape as you, and you've (sorry) inspired them to LIVE until they die, I wouldn't say that's wrong.

You have your life and your choices, we have our own lives and our own choices. Please don't feel responsible for other people's choices. If I choose to cycle 160km in one day in honour/while thinking of you doing 10K, that's MY stupid choice. Maybe you've inspired me to do something fun, but it's my choice as to what to do.

Now, if I were rich enough to fly to Victoria, and with your direct encouragement (c'mon Neil, it's easy!!!), jump into a poorly fitted racing chair, and roll WITH you in 10K, and thus completely wrecked my shoulder joints and arm muscls & tendons; well, that might be something you could feel guilty for.

But you have only described what you've done, and if others do the same thing on their own, you have no need to apologize.

That's my opinion of course, and a long-winded one to boot. I'm only sorry that I don't ave your command of the English language, and can't be more concise.

Love and hugs, dear, love and hugs; to you, Elizabeth Wonderful McClung, and to your team: Linda the Childe Bride and Cheryl G, who is so much more sensible sometimes than I am.

Victor Kellar said...

Elizabeth, I hope you understand I was in no way being critical of you, I was just doing my thing and offering a different perspective. I understand the Angry post, it it was me in your situation those would be the only posts I would be writing (but I am a cranky old dude, what can I tell you)

I just wanted you to know that, as always, I am here to listen and absorb and take what can from you and all the other commenters. If you took anything from me, then it is proof that the process works; and it only works if you continue to be honest and express yourself as you feel in that moment

abi said...

You make me think a lot, and you are teaching me a lot. The biggest thing that you have taught me is to persevere. If something is important, you should keep at it until it is done. It's also about grasping opportunities - deciding to do something, then doing it; not letting life pass you by.

Personally, I think that the most amazing thing that you have done is your trip to Japan. That involved something quite out of the ordinary (for me, travelling around local bits of my continent can take a while to get my head around, and I'm not good with language barriers- it seems to disrespectful to turn up not knowing the language, and I rarely have time to learn enough before I go), and you shared it with us. You lead by example, and we may follow if we dare! I don't see you telling us to follow, though. It's a personal responsibility thing.

I reckon that you should take some credit for some of the good stuff people do (you started it), but rather than feeling bad if things go wrong for other people, you should just commiserate and pass on your best wishes, if you are able.

Oh, and the inspiration thing - I have done some reading about it, and begin to see why you might have a problem with it (just in time for you to say that it might be a possibility). So much thought and reflection - my poor little head doesn't know what to make of it!

Sorry - this is all rather rambling and scrambled. I hope it makes sense, and what I have said comes across in the spirit in which it was intended (yes, I shall cringe next time I read it). Thank you for being you, for being so perfectly human, and for writing to us. Long may it continue!

Neil said...

Ha! I know how you just LOVE the word "inspiration," and I've been wondering how to avoid it...

From now on, I shall try to use "influence" or "encourage" instead.

Soooo, if one of us is influenced by your excellent example to do something good, go ahead and take the credit, ducks, and milk it for all it's worth. :)

If you encourage me to do something that you know is stupid (which I know you wouldn't do) then you should apologize when I get hurt. As in: "I'm sorry you got hurt trying to keep up with me with no training in a wheelchair. That was stupid; don't do it again, twit!"

If you encourage me to grab life and enjoy it, and I do, but I mis-understand you, and am influenced to do something stupid, that's my fault, and needs no guilt on your part. Just commiserate, send a sympathy card, and move on.

There, much shorter, and I avoided the dreaded "I" word.

Zen hugs!
Neil

Theodora said...

I got your postcard yesterday and it was lovely. The crane, uplifting and elegant as she lifts into flight; the Hello Kitty, cheer in my day; the fishermen on the front. I am sitting here at work thinking about it.

I am lucky in that my disease only really catches up to me when I eat (and after I eat until the dose stabilizes, which takes three to five hours depending on how much insulin I took and how many shots I took it in). The rest of the time, the time when I have no food and no short-acting insulin in my body, I am nice and stable. Hmm...

Elizabeth McClung said...

Judith: As to the race and people's struggles, I think everyone can be focused at work and family and the "immediate" the difference is people can SEE my issue: Oh look, she is in a giant wheelchair! While the person who carries around a big bag of depression: that's invisable, same with grief or all the other things that people overcome sometimes every day to keep on keeping on.

I am pretty sure you have had SOME influence on your sons - but not if they are inducing people to split up and have sex with them - which seemed a sort of odd compliment.

I glad I met you too!

Elizabeth - party animal, wedding drinker, comedian! I am glad we are friends. Yeah, I'm high maintainance! Or rather, it is like a suspence film and there seems to always be ANOTHER villian round the corner.

Rachel M: Thank you for praising my honesty and thank you for forgiving when I realized that in trying to protect me emotionally, I was trying to minimize what other people were doing.

Now if I make a tsunami - that's a good thing right? People like that with a little pepper on top? (I'm joking, meterologically I tend to see myself as El Nino - where things happen and no one expects it....who is to blame! El Nino!)

Lene: Well the same, in fact you really COULD have like some of my joints if you wanted. I keep telling the hospital to harvest the bits of me I can't feel. Spread the goodness of Elizabeth around. They keep saying, "You have to be dead first" - I say, "Rules are MADE to be broken" (okay, that is enough macabre humor for now!)

What, I was being an ass for several days an no one said anything. And if it popped out - I am having shower!

JaneB: Well, it is odd since my first reaction was, "Oh no, she's angry at the imaginary Elizabeth in her mind, what could the imaginary "I" have done to make her made at the "me?" - sigh. And there I start all over again.

I'm glad you drop in here as part of your day and being depressed and fighting against that is like fighting Fog - it seems you never win, but you can't give in either. Maybe we can keep going together. And I think that I will enjoy sending you another card and you will find the perfect card for me too. You support me. Have you seen yourself that way; as a person who helps and supports someone else who is having a tough time?

Gaina: well, that was very gracious of you to take it how I sort of wanted to say it, but nicer.

Wow, well if you want to walk, I am I for that I would like to hear about it. But yeah, maybe wait until that dream has dissapaited.

It is true that I often have signs of dehydration even though I drink when it is hot, maybe I am peeing my hydration away (this isn't survival island and I don't have to drink it or something gross like that do I?).

Perpetual Beginner: I understand that emotion of sad and angry completely. It is the frustion of finding someone has gone off and stiff upper lipped it and I get frustrated because "I'm here! I'm here!" even now, I here if people want a listening read on the email and if I can, I will try to reply and if I can't make things better, I can hopefully help you feel less alone. So yeah, it would piss me off if my friends were keeping thier own hurts and needs from me, just becuase I have a few issues to deal with. As long as I am not in the hospital, I can handle another email (most days!).

It is true, my dreams are a communial dream and I depend, I trust, I need others to help me, to make it come true - I do the wheeling but they are there, they put me there and are ready to catch me if I fall.

Frida: You do MORE than enough risky behavoir, and I take NO credit for it (did I say take off your neck protector to do an exorcist stunt? No!).

But I know what you mean. You use the scooter because it means you can do more. you went to the concert becuase you knew it could be great, or you could have to come home early. You had an operation your neuro didn't think you should have BUT you have a better quality of life becuase of it. You definately listen to you, and anyone who defies a neurologist is tops in my book!

Retired Waif: Hmmm, well yes, you have steel, but I have the training and ability to kill someone by crushing thier larnex with a cane, or an umbrella - I don't need the sword to kill, the ability to hit with precision, speed and incredible force (or a light touch) is within me: I AM THE WEAPON (I wish, I can't get a fork of food to my mouth these days with much accuracy!). I like you winding me up too.

Yes, what you say about how everyone pitches in, and is there, and does it in a way that is impossible to repay, but becuase I think they love you. Something I can't really "get" or "accept" as real for myself but why else would people want to do this, support me, care about me, care what happens - becuase they want to see if I go splat? Or is it something more?

Veralidaine: I am better person for your being here, and I look at mice and rats and all animals in a different way now (probably not the MAIN influence you wanted?).

Yanub: Oh I really like that quote you just did about supporting the individual and giving back to the community. I believe in that. I am almost insane right now in pain, sorry. But that is perfect, it makes what I said in about 1000 words redundant, that is what I meant. Wow, the whole part is eloquent, even the last bit about the community which supports the individuals makes people who are better able to support the community - it is true! It is well written and makes perfect sense! Write a paper and get that published!

Neil: Hmmm, should I be upset that you only read 1/2 of what I wrote or happy that you looked beyond it, didn't get upset and tried to see where I was in my mental space at that time? Hmmmm...

I have a very odd life, I have to exercise and feel pain in order to keep going. And so I lot of what I do is actually logically self preservation; and the rest is just me - the person who says, "Did you just say that was 'impossible'? REALLY? Let's see if that is true!"

So yeah, people can take what is usefull and accept that I am a bit nuts for the rest.

If you want to cycle 160 miles in a day - I REALLY WANT to read about it - but since you already do strange things with your bike, up, that one is entirely on you.

I do encourage people including myself to push the emotional and personal envelope, but what can we do until we try. As for influence, I think my influence is very small indeed, but my intentions are good and I keep busy, and keep the postal worker in Canada and the US employeed so I am a slightly good very small influence. A butterfly flapping it's wings doesn't always make a hurricane in the other parts of the world.

Abi: The first paragraph I was going, "Yeah, that a really good lesson" and then I was going, "Oh wait, you learned this from ME?"

I think you are right; I am going to end up doing everything I can so I might as well narrate it. And if people think that is cool and want to do the same. Then good! And if things don't always turn out the same, since I can convince people to do things for some reason, particularly when out of the house. Then, yes, I will be there for them to listen to them and they can lean on me.

Well, I am definately with you on the "Long may it continue!" and I do take it in the spirit and I need inspiration and I need heroes and I need people who make me feel like going out and doing something - so to me that is inspirational. Going three blocks to the Y isn't, at least not JUST that - but that I try my all and that I work hard and when I lose I smile anyway and work as hard as my body will let me. It that inspires, fine. But I am not an example of what anyone could be because I believe the potential to be, maybe not anything, but with support and help and a dream, that personal potential can happen. (Oh no, now I sound like some creepy motivational speaker!). Okay, I love sport. I will keep trying to do sport, regardless how wildly inappropriate that is in my condition. If another person likes crafts or making models or gardening, and the decide they are going to HAVE a garden, even if it is a window garden, then I hope you see what I mean.

Dawn Allenbach said...

The way I read the comment you quoted was you taking responsibility for bad things happening to others, and that's just silly.

I am your friend through everything, especially your silly bits.

Neil said...

Sorry, dear, three corrections:
1. I read EVERYTHING, but when it's obvious you're in extreme pain and not making complete sense, I listen to the lucid bits, and try to understand what's making you say the silly bits;

2. not 160 miles, only 160 km. There's a difference, and I have done 190 km in one day. But that was 24 years ago; I was single and had time to spend 160 km on a bicycle. These days, family comes first dammit. :)

3. Speaking of silly bits: "As for influence, I think my influence is very small indeed..." One word, Beth, dear - BULLSHIT!!!

I know your intentions are good, dear friend, and that's why I'm still here with you. But anyone who can write with the power and humour you can, even with your pain screaming at you, has more influence than you might think.

You're more of a storm front in the northern hemisphere that causes an increase in butterflies in Australia. You're powerful GOOD, Beth.

Love and zen hugs - always,
Neil

Raccoon said...

sorry, Beth. Your trip to Japan had me going "if she can do it, and she's worse off than me, then I can do it."

I don't know if that makes you inspirational or not, but you were on my mind a lot during my trip. "If she can pull herself up the stairs to get on the train, I can use the chairlifts to get on the subway!"

Motivational. Inspirational. Will you accept those words from another gimp ?

So, was the hydrogen bomb postcard reminiscent of your brain bombs? Female pirates -- sounds good to me!

Maggie said...

Hi--I'm back among the living. Ai is getting used to Pacific time and we went grocery shopping tonight. She is very excited that I have friends that know how to speak some Japanese and is looking forward to meeting you. It looks like I have a bit of reading to catch up on.
1.I'm very proud of you winning the 10k. Even if you came in last of 100 chairs, I'd still be proud to say there goes my friend Elizabeth.
2. You can be angry. Will you fell better about being angry if I give you permisson?
3. So, my theory on the whole running thing was run only when chased. Does the same hold true when you are in a chair? Roll faster when chased? Roll like you mean it when chased?
4.Umm, I'm out of smart ass things to say, I'm going to finish eating dinner and be sure that Cheryl is probably annoyed with me because I got home from the grocery much, much later than plnned. Have a good night and rest well...rest poorly...just rest?

Elizabeth McClung said...

Raccoon: I have no idea why I sent you that - I think Cheryl and I just thought it was between that and boys making out with other femme looking guys and you probably wanted a bomb to look at instead? Um, I was saying, "What do I give a guy who worked at a Ren faire and is into books?" - and the Hydrogen Bomb seemed well - I guess the fact that the US actually SELLS it and it is proud that they made and blew it up above ground and so you can get a postcard of this fun event we all enjoyed! Irony? Punch drunk? Dunno.

I thought about you alot while you were in Korea - I didn't want to send you a Japanese post card, seemed a bit redundant. I hope you had a good time, had some good memories. Actually, we thought of you a lot in Japan, mostly, "Raccoon is going to Korean, I HOPE they are more prepared than here or he is F**KED!"

Hey, my postcard had a Raccoon ON it and you are dissing it?

Dawn: thanks, I was being silly.

Neil: what is it 160 km now, wimping out using metric, come on, I know you have 160 miles still in you! (Would this be the type of negative encouragement I WOULD be responsible for?).

Well, I think my influence is small but I don't think it is evil - I do have not just good intention but I hope good actions. Or actions which indicate my intention.

Maggie: Konbanwa! I look forward to seeing Ai, we might give you our Oxford dictionary which has Kanji side and English side so she can show you words she wants, and you can communicate that way?

I heard you tried to take charge of Cheryl's yard, good luck on that, I gave up, I think there is some sort of sacred bond there.

Can you tell Ai that I have a lot of Manga too, and a LOT of recent anime IN Japanese, so I can give you a DVD and she can watch it on her computer. We are watching Minami-ke Okawari right now but can get Code Gauss R2 if she wants. Just ask her what she wants and I will get her some nightly viewing, if she isn't catching up with her friends on R2 (I think that is the name of the Gigantic online forum in Japan) - I also know the words to Linda Linda Linda by the Blue Rodeo so we can do Karoeke (sic).