Tuesday, June 17, 2008

Insecurity, hated by Hello Kitty, and more on Postcards!

I am feeling rather insecure tonight: all of today in fact. I am not going to talk about medical stuff because it makes me distressed and I don’t have answers for people on why doctors do X anymore. I just don’t. And I am concerned because it feel like there isn’t anything stable in my life anymore. And I worry that this is making me a person who has moved from “edgy” or “honest” ( or even sometimes "funny") to “deranged and bitter.”

I wrote a piece for the BBC, about how all of us with chronic disabilities are being rewritten out of the human collective by popular culture. But the way things are going with my brain going Boom! Boom! Boom! It is as if there was an 1812 Overture for Seizures, so it took me two days to post it. I posted it and immediately received a negative comment about not the first word, but the first three LETTERS of the post, about the first sentence, about the second sentence. The post is here and I would appreciate it if you would read it and comment (even if you have to do their 3 minute sign up to have a “screen name”). I would consider it a personal favor if you could please comment; you could for instance take issue with the third and fourth sentence. But also because I can’t tell if my writing, or me have just turned so harsh that people are thrown back when hitting some sort of “Bile Forcefield.” I wrote the editor to let him know that I was late (which I did not know until posting because one of things most affected is how much time has passed), and while he has always replied before, this time…nothing. So, it is a bit like trying to find out if you have bad breath, and go around breathing into your hand; I don’t know if I have lost touch with most of humanity, or as well lost touch and connection with those who have disabilities too?

Everyone has issues, has problems they struggle with, and I want to say again to anyone who reads this that I am grateful that you spend time out of your day: a day filled with everything from family crisis to work, of trying to keep all the plates in life spinning, that you come and read here. And again, as a thank you, I am sending out postcards. A postcard to anyone who sends me an email with the title ‘POSTCARD’ to mpshiel at hotmail.com. Send the email, get the postcard, it is that easy! REAL mail! I’ll come back to this in a minute.

See, I think that I am screwing up at dying. However it is that I am doing it, I am convinced I am doing it wrong. I feel, I seem to be a pinball bouncing everywhere and yet what do I accomplish? A few bonus lights before I slip between the flippers (oh, dirty talk!). Today, I had very low reserves and passed out three or four time (more?). I was stupid for much of today, which still comes and goes. Stupid like: sitting in front of my computer, not knowing how to operate it, not knowing how to check my emails. Knowing I SHOULD know to check emails, but not knowing. So I go to sleep and wake up knowing how to use the computer but have lost the memory of most of this morning. Perfect. I spend a lot of time trying to avoid being a human lump in the corner going, “What?” Care workers enter and come into the room and look at me, and I look at them, and both of us are hoping the other knows what we are supposed to do.

I don’t know why this happening to me. And yeah, it is frustrating. And I guess that shows up in my blog posts. I can’t seem to be plucky and write about having a good time frequently doing X or Y because I am scared; I am dismayed. Is this how you want to be wheeled into your college reunion? Want everyone to get a good look?

I think in life (in the time where I had things like memory and enough oxygen), I was not a half full or half empty sort of person but a “Gimme a pint of beer”, and I do it my way person. And that’s what I want to be, to the end, but this fear, this pain, this terror, this pouting gets in my way. Yesterday was a lot worse than it first seemed, and with the amount of arm turning purple and screaming and shaking and crap, it seemed pretty bad. So I don’t know when the full “me” will be back. But the sort of dazed, shaky and scared me is filling in for her.

Okay, enough about my issues right now except to say that to add to my insecurity, anyone who sent me a Hello Kitty email card…..I never got it. At least one person sent one because they told me but I never got them. Hello Kitty has rejected me. Talk about making a person feel alone, when a cat who goes around saying “I like apples” won’t talk to you….

Okay, next part is about Neil’s blog as well as the postcards. I think it would nice to drop in on Neil because he has been having some sort of horrid experience with changing a kitchen faucet. I admit it goes deep into men’s technical talk about plumbing but apparently it was like seeing an ant, killing it and putting your foot through the floor into the anthill which has taken over your house. So a bad thing combined with starting with his first week blogging so I am sure he could use a boost.

Postcards! Now, in my life of having little control the one thing I do have control over is sending postcards. I have ordered stickers from Japan, I have recieved postcards and stickers ordered from three continents. I have postcards from all over, including some from Japan, more Anime ones and I am trying very hard to give everyone who gets a postcard added value. That means, 1) A cool card, 2) some actual writing from me 3) Some sort of combo of stickers or other art attached to the postcard to increase the “cool” factor so you can show it around and have people envy you. Which is why I encourage again if you know someone who would be cheered by a postcard, or a couple postcards over the summer to email me (mpshiel at hotmail.com) – I will email you back to let you know I got your email and you can prepare for the postcard.

I intend, before departing into the great unknown to send 997 postcards. I really wanted to send 1000, but that was such a round number that 997 seemed cooler somehow. I have already sent about 130 postcards so I need a few more names and a bit more dedication (like obsession?). I spend a couple days a week procuring post cards and post card supplies and try to make each post card individual to each person. For instance today, between passing out time number 2 and number 3 I visited a store where I got a bag of supplies including these stickers of Black Widow Spiders.


Normally I don’t show any of the things I am going to put on the postcards, or the cards themselves so that whatever you get is a surprise, and then when you get another card, that is just as much a surprise. Becuase there just isn’t enough wonder and surprise in life, and I am trying to stuff it all into postcards. It is another windmill: the 'bring back the wonder' windmill to charge.

Don't worry, only the serious Goth or spider lovers (let me know if you are) will get a spider sticker, but now you see that I am serious about the postcard diversity. This is serious project for me. And I know that this is probably some compensation, some way of feeling that I am escaping thinking about myself and my fucked up life for an hour a day. And that instead I get to I plot with glee the best card and best stickers and other delights that Person A and Person B and Person C will enjoy. And it forces me outside almost every day, to get down to that post office to send off those cards, to get them out there where they can do some good. And maybe they do no good, and I am fooling myself, but as they say, “it is a lovely dream” and if the postcards make a difference then, I guess it was/is a collective lovely dream.

That’s it. There is no great lesson. I am sure there will be one tomorrow. Just letting you know that I am not a superhero, I’m a scared female who had a lot of plans, a lot of dreams taken away; and who sees herself losing function EVERY WEEK. So I obsess about postcards. And I guess, for someone who doesn’t know what else to do, there are worse things I could be doing.

30 comments:

Defying gravity said...

HI Beth

Just read your Ouch blog. I don't have any kind of problem with it. It makes sense, and you put your finger very clearly and powerfully on something that does happen, even if it's often subconscious. Maybe try not to focus on the first comment, but on the second one that agreed with you?!! And the PWD/DP thing is mainly a transatlantic difference.

I saw in the blog that you would reply to postcard emails so we know you got it: I did send you an email, but didn't get a reply. Do I need to send another one?

Take care

Elizabeth McClung said...

I checked and it seems I posted replies to all postcard requests since I asked for them, so um, maybe it is in the junk - as hotmail accounts are often used for "You have won the IRISH lottery!" - so if you want to send it again, I will send a reply again, and would appreciate that, unless you have already recieved a postcard (since some of the people who send addresses should have cards coming toward them as we speak).

shiva said...

a) I just put up a blog post with some photos for you :)

b) I just commented on your Ouch! post (it got a bit more academic in tone than i intended, but i think i got my point across).

I know Chris from the Ouch! messageboard - he's a sound guy and an uncompromising disability rights advocate, but he has a tendency to get hung up on points of language, and to have a slightly-too-absolutist version of the Social Model. I think it was a terminological misunderstanding rather than an attempt to be nasty...

SharonMV said...

Dear Beth,

You don't have to be "plucky Beth" for us to love you & to want to read your blog. I know you are on a hard road, and sometimes it's scary. You are doing good. You are good. You have helped me. Sometimes we go to that bitter, even deranged place. You are not just edgy - you live on the edge every day. Not what the day's going to be like, how you're going to feel, what you'll be able to do, how bad the pain will be - it's hard.

I read your BBC piece earlier today & thought it was great. I was kind of taken aback that you got a negative comment, but that's going to happen sometimes on a public site - they're are always people who want to complain. I'll try to sign up & leave a comment - either tonight or tomorrow.

I think we ask about your doctors & question what they're doing because we care about you & are upset that you're not getting better care. I don't expect you to have answers.

Now, I think (and I know I'm not alone here) that the postcard project is wonderful. To be selfish again, I've already benefited by receiving 3 fantastic post cards. But it's much more than this - once again you are creating a community, drawing people together & by sharing your life & this project giving someone like me a sense of belonging. Just today enduring yet another bad day myself, I spent a little time putting together some postcard supplies for you. a few little things to help embellish your postcards. And that was the most fun I had all day. I'm going to see if Dennis can mail my little package tomorrow.

I've had dreams taken away, but now as I told you once before, I'm taking some of them back & if I can't have those dreams, I'll make new ones. That is another way you have helped me. You will not be forgotten.

Sharon

Miss Fairy Sparkle said...

Brain jumps in any form naturally make people feel a bit wobbly, a bit all over the place - and without trying to put down the seriousness of the changing nature of your disability - your writing has not shown deterioration of intelligence, warmth, wit, self deprectiation and questioning, arguing for the truth, or care for others in any of your posts. Be vulnerable - it's what makes what you say feel very authentic.

JaneB said...

Hi Beth, hugs - thanks for your honesty, I hope it helps you to put what you feel out there, and it is good to read that honesty - even if your readers feel kind of helpless about not being able to fix things, at least we feel we know you need thoughts and prayers. That doesn't make so much sense. Oh well, I probably don't as I'm rather short on sleep today and that makes me go all finger-tied. There are much worse things to do than reach out with postcards!

Looking for something suitably 'Beth-appealing' to send back when mine arrives (& I have your address) is giving me a much-needed distraction from work - what a great excuse to go into the Minster bookshop this weekend and look at all the cool gargoyle cards and the like... so that's a small help for someone else achieved.

Heather said...

You said: "I can’t seem to be plucky and write about having a good time frequently doing X or Y because I am scared; I am dismayed."

Scared, dismayed, pouting, frightened, deranged, frustrated, bitter, insecure: all acceptable versions of Elizabeth. You're not Hello Kitty after all. And you are doing something difficult: living as well and as much as you can despite the seizures and the losses.

Enough cheery bossiness: here's a giant spider for you courtesy of the National Gallery's webcam.

Neil said...

Those fucking inner voices have bee n taunting you again, haven't they?

When my immune system attacked my kidneys, I had about 48 hours of the terror you must have every day. It's hard on you, and you're welcome to vent. That's what I'm here for.

You're still a very valued person, dear, and that's why I put something small in the mail for YOU last night.

And thank you for promoting my blog! That's very sweet of you.

I'm almost late for work, so I'll read your Ouch! piece tonight.

Love and Zen hugs!
Neil

Carapace said...

I don't know if it helps, but holy moley, I know EXACTLY what you're talking about. Have you perhaps gone back in time a couple years and possessed my body? Because, if so, I fear you have chosen poorly in your time-warping possession plan.

How I wish you lived close enough to visit. It would be great! We could hang out in states of semiconsciousness, mutually forget conversations, share fun medical side effects and everything!

I like the Ouch! blog. You've artculated something that I've never quite been able to put my finger on-- that treatment of disabled time as invisible, melting fog between bright lights of ability. I find it doubly perplexing because my worst times *are* like that-- when I have a bad month, that means I don't remember the month. I can't talk about it, or point things out, and I keep coming across stuff I did or said in a time I don't have access to, like there's some alternate universe me popping in. So these people whose time disappears, and they are fine with it? Confuse me much more than if they griped and wallowed some.

And on that note, it looks like it's time for you to gripe and rant. It's healthy, like cleaning out a fridge. Consider this your permission to go for it. But do not feel rejected by the Kitty! Remember that she IS an intergalactic ambassador, and even now may be saving us from invasion

Lene Andersen said...

Nothing wrong with the OUCH post. Will try to comment later, but am trying to keep my elbows from going boom (both, this time - I'm being an overachiever!).

Feeling scared is normal. Your life being taken over by something you can't control is damn scary, especially when it tries to kill you all the time. Fear is a normal reaction. Write about it all - it's the ABs who wants us to be plucky all the time, the rest of us can take it.

yanub said...

Elizabeth, I can't figure out what the editors weren't happy with. There are a couple of typos, but they could have fixed those (they are editors, after all). You posted mostly the same thing on this blog, and I thought then, as now, that your insight was absolutely correct. You know, they don't make movies for us. They make movies for them. It's all about miracles and overcoming and not about the reality of adapting, adapting, adapting some more. The adapting is OK. It's the people who aren't adapting who are in real trouble. They will adapt sooner or later, but they'd be better off not having those silly notions of "fighting" and "praying for a miracle" in their heads to start with. You have to live your life as it is. I'm said for that Dr. Taylor. She has lost 8 years of her life, because she doesn't value them.

If it counts toward your postcard goal, you can send me another one. And I have no phobias that can be captured in a postcard or sticker.

KateJ said...

I just received, in the post today, one of your beautiful postcards, of ballet dancers, a lovely Degas painting, with a hello kitty sticker and lovely message from you. Thank you, thank you so much. I feel very honoured to have received it, I mean that. The ballet picture is so appropriate, as my mother and I watched so many ballets together.
I'm somewhat ashamed that I myself have stopped blogging... I mean, what excuse do I have? On the other hand, I really have nothing profound to say (or at least that I'm prepared to post out there on the net, not at the moment anyway) and you most certainly do.
I'm off to check out the Ouch blog right now this minute.

rachelcreative said...

Oh b@ll@cks.

I wrote an enormous comment and the authentication failed and I lost it.

Well less reading for you Beth.

Basically - your ouch post is great, you're great, hello kitty is techy-glitch kitty.

Oh yer - and maybe you should blog less? Stop your brain from frying? I'd be happy with less posting and less comment replying. I don't need a reply. As long as you remind you're reading every now and again.

Anyway. I was slightly more eloquent the first time. Getting fogged as I try to remember what I wrote and know i can't. Ah well.

cheryl g said...

Hey Sis

I tried to send you a second Hello Kitty postcard to see if it would work this time. Is hotmail dumping them into the junkmail file?

You say you are screwing up at dying. I really don't think there's a right way or wrong way to do it. It's OK to be the dazed, shaky, scared you.

Hugs Sis

Dawn Allenbach said...

We all have obsessions, and I think yours is wonderful. It truly does bring joy to others, and it gives you an excuse to get out for a bit.

By the way -- those black widow stickers are BRILLIANT!!!

Judith said...

Hi Beth,
today I got your postcard and it is lovely. And I showed it to my sons and they are appropriately jealous - particularly Geo who is fairly entranced with Japan. You would get on with him I think because he loves the anime too! I am going to write back but I will have to make a card as I can find nothing as amazing as postcards made out of laminate wood! It found me on a tough day and made it good. Thank you so much.
Now, it seems you are definately having a tough day - I'll go comment on OUCH in a bit. I found your blog through them in the first place so I'll play nice! I thought your post was good - some terms differ between UK and Canada so no big deal. I did some equality and diversity training recently and I wanted to cry by the end of the first half and maim most of my colleagues by the end of the second! It makes no difference if you know all the 'right' words to use if you don't actually get that people are just people. We live. Sometimes it's good, sometimes it's painful, mostly it's a bit same-old, same-old. And we die. So that's a honest thing to admit. And, if you have a fairly major disability then chances are your life will be shortened - if not by the disability then by the stuff that happens because of the disability. You are an honest person Beth. You talk about your fears and your issues but mainly you talk about you and your life. I like that you don't attempt to speak for other people - it's your blog and your writing and it's about you. This is cool. Please don't worry and feel insecure.
Also - how could Hello Kitty be hating you? This is just not possible! My middle son (the one with the baby) has a Hello Kitty guitar! Hello Kitty does not do the hating....
JX

Gaina said...

That was a good blog! I have commented :).

As for dying and doing it wrong? Well if you think about it, 'dying and doing it wrong' is also called 'living'. We start dying the day we pop out, and we'll all get a ride on the ejector seat eventually, it's just that you and many others are in the unnerving position of having a time span laid out in front of you.

Seriously though, death is a part of life - a transformation - and nobody can tell you a 'right' way to make that transformation, they can just support you in finding your own way to make that journey.

Hello Kitty is a fickle slut. I say you dump her and start a new relationship with Pingu before you get your heart broken.

...and go easy on the Black Widow stickers for the arachnophobic amongst us ;-)

saraarts said...

Just so you know, as I was attempting to read this post, our cat Sam, who has been on Paxil for a few weeks because of territorial anxiety issues that have already cost us our couch and the big comfy chair in my studio, and who has mostly been acting as though he's been feeling much less anxious and has thus not felt it necessary to spray anything in at least a week, came into my studio, sniffed around a bit, clawed the carpet, and then hauled off and sprayed my pale pink Hello Kitty backpack.

Revenge on your behalf? Sympathy for your plight? Nothing to do with you whatsoever but merely traces of previous sprayings still detectable? Or perhaps he felt threatened by seeing Hello Kitty in his territory?

Who knows? But I thought perhaps it might make you feel better.

(The backpack is in the washing machine now.)

The Girl said...

Got your postcard today. It's the most exciting thing that's happened to me all year (just ask lilwatchergirl. She's been here). But it is bad and wrong that I don't have a return address for you so that I can send you something. Don't know what yet, although it won't be spiders because I can only get close enough to them to squash them with a tennis racquet.
In any case, makes my need to go to Japan even greater. I can't wait to try the trains out there with the wheelchair. The Japanese will be going, "Oh God. Not another one."

Sharon

P.S 997 postcards? By my calculation, that means you will be done in about 10 weeks. Are you not sticking around for Christmas, then? Because, seriously, I would aim for 997,000 myself. Now there's a challenge worthy of Elizabeth Fucking McClung!

Veralidaine said...

Hello Kitty doesn't hate you. She's just intimidated by the amount of awesome that is Elizabeth Fucking McClung! She's like a shy fangirl hanging back afraid to send those e-cards because, like, OMG, it's Elizabeth McClung!

Lene Andersen said...

Every time I pop by to check the comments and scroll past those spiders, I shudder.

Me? Phobic? Why on earth do you ask?? ;)

Elizabeth McClung said...

First off all, I am phobic of spiders, if I see a spider and Linda can't kill it, then I don't use that room. But I will buy spiders for readers postcard. PLEASE don't send me spider related things (except corsets!).

Defying Gravity: I have decided since Ouch! a "disability" site can't seem to handle talking about when you have to sit in your own shit (they ***** it out), I will be sticking to the old fashioned "Yo Cripples!" - well except that the humorless might assume I was serious.

I hope you got a reply for todays email - thank you.

Shiva: I will defintatly come take a look at the post when I wake up from my sleep. I thought your post on Ouch was just the right academic touch actually, seemed very balanced. I don't know much about Chris except......can anyone find a post on a blog essay where he is enthusiastic and cheerful?

SharonMV: I did not write a good post today; I wrote a vulnerable post but it was bad writing, it did not transport those who have not been there to where I was.

In The Human Animal, it is noticed that the difference between everyone and sociopaths is that people go through levels of violence, they yell, they guesture, they get into each other's body space, they push each other all before anything even remote dangerous occurs - it is the code between humans. Sociopaths just walk up and garrote you. Pain is a sociopath; my body is a sociopath that stops me midsentence and then without concern, permantent destroys part of my brain while I am on the floor screaming the pain of feeling it.

That is what I should have written.

I do appreciate the concern on doctors and I just found out today that getting Rhumitologist will be difficult becuase there is...wait for it...one in Victoria. I wish this was a movie or some sort of Finnish or Danish dark humor thing.

I am glad that you had fun with the supplies, it is nice to escape the self isn't it, sometimes, and thank you for thinking of me. I want you to understand that I know what "bad day" means, and that you MORE than hung on, that you altered it to your will is a great achievement. That your will was to do something for me is an honor that I am not sure what to do with because it humbles me.

Miss Fairy Sparkle: As I think someone famous almost said: I am but because to be authentic; I will be vulnerable on the beaches, on the shores, in the streets and hills.

Jane B: Well, I suppose welcome to the club becuase having my OWN body and being helpless is pretty much a suck festival so I can see how sharing THAT joy isn't really so much of a treat.

I can't say, but please no spiders. I wanted to join roller derby today because of something going in one of the clubs, an assistant coach making the players say out loud how not good they are. Give me two minutes on skates and that woman will be on the floor so many times. I do not like bullies, and if you disrespect the efforts of others becuase they aren't hitting hard enough, then prepare for what someone who is willing to go farther than her will do. Sorry, that was a BIG aside, I just miss not being to run over rude doctors with my wheelchair and then "accidentally back up" - oh dear, so sorry. But I just don't have the "nasty" in me unless it is sports, or bullies, and bullies to other than me.

Heather: well, I can't say that is the MOST appealing list of persona's I want to display. What happened to cute or darling? Hello Kitty is pretty subversive, I am not. I tend to clothesline people verbally. This was me being subtle. I'll avoid that in the future.

Well Neil: you did want to do such a nice thing (fix the faucet) and then you ended up speaking sort of plumbers Klingon, which I take it is a bad thing, flanges and such.

Thank you, I am always up for goodies!

So, what did you bring home on the bike this week?

Carapace: Wow, that's so cool, that we are sisters of extreme pain and permanent brain damage. Did you sound proof your place? Cause that's what I am thinking of doing? I just don't want the neighbors thinking I am too much into S&M because of the seizures/strokes.

We could hang out but I would need Linda to translate becuase part of my face tries to leave the building by sliding away, and with my tongue stuck on one side of my mouth it makes talking..um...interesting and painful (like my tongue is today, ow!).

Thanks for reading the Ouch piece, I think the western world is trying to tell a story, that good things happen to good people and you can be health if YOU do the right things and all this is in your control and like someone in deep deep denial, anything that doesn't fit that isn't heard, well until you do fit in again, like becoming able bodied or looking like it close enough and then, woo hoo, we can hear you.

Lene: Fear is normal; fear harnessed with good writing would be better - this wasn't good writing, it was adequate. BLAH. I have decided to make the earth tremble, let us hope I remember how when I wake up!

Yanub: Talk to Linda about the typo's that's her thing - I was just dismayed to find out that my telling Ouch readers that "Shit happens" has been "bleeped" out - golly, that's a message we don't want getting out - how about that they might end up ALL FUCKED UP and in pain. Hmmmm, no, that probably wouldn't have made it through either.

Yes, She doesn't value those 8 years, and her readers and those who bought the "bestselling book" don't value those who live or exist inside of the condition of those eight years. That is what angers me, she is a person who HAD a stroke and is a spokeperson for HIDING people with strokes. Joy!

KateJ: I am glad the Degas arrived; I think blogging like poetry can be something you do when you need to - I wrote poetry when I needed to write it. When you need to blog again, I am sure you will

RachelCreative: Thanks, yes, Hello Kitty dissed me. Linda sent one to me, no go; I send one to linda, it arrive, we send one to her home account, no go - it seems that she is a cute kitty but her paws make her very techno illiterate?

Actually, I think the brain is on slow boil whether I blog or not, at least this gives me a reason to fight to get UP and not stay in bed, or be sent to bed.

Dawn: you are way too a bio major - okay you get a spider sticker! Thanks, yeah, as hobbies go, this is better than knocking over mailboxes! (For both me and the people with mailboxes)

Judith: I am glad you got the postcard, and getting mail envy is an added bonus. Well I do regular postcards too as the "amazing" postcards are sort of disappearing and I have to wait for another trip to collect those kind again. I am glad it arrived in time, the right time.

Your comments were very helpful to me to articulate the fear, the aversion, even on the comments, to the "D" word; that yes, almost everything is going to shorten your life; Diabetes, bipolar, parapalygic, etc - And it is not like disabilies come single file, one usually brings a friend to be a pain in your ass (or kidney, or bladder) and that wearing and stress will lower the average lifespan. And that includes nice stable disabilities.

Ironically I got an email this afternoon telling me that did not make the job (or I guess the shortlist) for a part time equity and equality officer. Hahaha!

Gaina: so true, I forgot that what we call, "not immediately dying" is living and what we call, "Kind of seeing where you are about to go splat" is called dying - but they are just terms.

Saraarts: it did make me feel better, though I don't know how anyone would feel threatened by Hello kitty, more that she has removed her radiance from my presence leaving a grey void. Haha. Spin Hello Kitty Spin!

The Girl: I am glad you got the card, which means you are home? And I can provide an address if you wish, and please no spiders for me, I let linda kill them all.

Yes, go to Japan, frustrate JR all over again!

It took me 2.5 months to do the 130 post cards, so I don' know how that makes it 10 weeks until I finish, I did 41 cards in 8-9 days this last week and that was like, spending two Sundays on "postcard duty"

Joan K said...

Hi Beth,

I just posted a comment on your Ouch blog. I think what you wrote was very well said and I said so. Dealing with illness and pain is difficult enough without being reduced to a couragous caricature, as people in general are wont to do. Thank goodness for online communities of fellow-sufferers.

I received a postcard from you today, with a picture of Mount Fuji. It is beautiful. I like the Hello Kitty sticker also. Thank you so much. I really appreciate it.

Take care,

Joan
(bvfrenchknitter)

Tammy said...

I read the ouch blog and loved it. I commented. I don't see anything about it that could warrent any "shunning" from editors. I thought it was extremely well written.
I sent you a Hello Kitty email...you're right. That catty bitch must have something against you.:)
I got the Swcheppes postcard in the mail today. Thank you so much. I LOVE IT! I love artwork from that era too. It's perfect. She tripped my 14 year old sons trigger too. lol I can't thank you enough. I so love getting them and the personal messages from you. My hubby hasn't noticed her yet, and it's hanging on my dresser mirror. He's oblivious most of the time.

cheryl g said...

I just have to say the spider stickers creep me out more every time I see them. Does Hello Kitty have something against hotmail or does hotmail have something against Hello Kitty?

A. J. Luxton said...

Well, I somehow don't think anyone's going to come around and say they did the dying thing better than you. :-)

Sorry, your morbid humor is contagious, I actually laughed out loud at "1812 Overture for Seizures"...

Hey, I have an mp3 track I want to send you -- a cracked-out Thomas Dolby rarity that I'm listening to at the moment (and did a drag show to once, at one of my MFA residence) and somehow think you would like. Let me know if I can send that along to the Hotmail account; I don't want to mess up your file limit.

Oh, and most likely Hotmail has something against Hello Kitty. They have this anti-spam filter that blocks any domain name that doesn't send Microsoft extortion money. Little-known but true!

sarah said...

elizabeth
i just read the ouch post and it's great. the comments are too. there is such a difference between seeing people with disabilities as "inspirational" and glossing over the difficult stuff AND on the other hand, recognizing how much it can blow your mind/change your life to know someone wiht a disability when you yourself do not have one-- like the ways in which i see the world that i would not do if i did not know D. hope that made sense. anywya, thanks for the ouch column.

and hey, i would LOVE my own postcard, even though i have a brilliant yaoi (? gay boys) card on my desk that you sent Donimo and it ROCKS.

i dont need a particular kind of card but i do love those stickers.

you have our address.

Elizabeth McClung said...

Joan K: thank so much for commenting and also for letting me know about the postcard arriving and it being okay. Yes, I spread my little bit of Hello Kitty around like a crack dealer giving out free samples. Who knows what addiction could spring up!

I agree, if not for the online community, I would feel so alone that I would have cracked up (and not in a good way) - just the fact that the local paper has a "your health" section which tells you every day that if you do X or Q or Z that you will live and be healthy as long as you want makes me so angry I can't read the paper at all - the inspid message from everyone that your health is all up to (and down to) you - which makes me a VERY BAD person, I guess becuase I did have enough bran or do enough morning stretching or whatever - when the truth is (which OUCH saw the need to edit): SHIT HAPPENS.

Tammy: yes, Hello kitty doesn't love me or hotmail and why is it the ones we love the most are the ones whose post gets lost!

Thank you for commenting and I am really glad you got the postcard, that one just seemed to have your name written on it (invisably...well until I then DID write your name on it).

Cheryl: Yeah, okay, no spider stickers to you - and you were the person FREAKING me out with the whole, "of course around here is the HOBO spider that will kill you in five minutes..."

A.J. Luxton: I dunno, I have a feeling my relatives might, they might come and say how X did a much better job of dying and how it was much more interesting for them to watch.

Oh good, I am glad someone besides me liked that joke, as they do the 1812 in the harbor every year here with real cannons so that influenced my metaphor.

Anything you did a drag show to, I want to hear!

Thanks for explaining how it doesn't even make it to my junk account - it blocked entirely!

Sarah: Thanks for reading the post and comments. I do find that the collective helps, too bad it is AFTER I have finished the piece because people say things so much more succintly and clearly that I was sort of doing a wack-a-mole attempt at hitting that I want to steal it and rewrite the piece.

Okay, I will be sending out a Sarah Postcard with one of the 4 stickers left from the Dai Bokken, we REALLY need to get down to Japan Town in San Fran where they have a photo booth and take some more!

A. J. Luxton said...

I dunno, I have a feeling my relatives might, they might come and say how X did a much better job of dying and how it was much more interesting for them to watch.

Ah, but they haven't died, so they're just critics. You can tell them they have to die first and until then, sod off.

Dawn Allenbach said...

you are way too a bio major - okay you get a spider sticker!

HOORAY!!!