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.