Okay, maybe the title has told you. But seeing is believing. h.naoto, the goth loli designer, of Angry & Hangry, of japanese gothic, goth loli, nois and punk has sold ONE customer out of Japan the 2008 h.naoto japanese translated Feather Rucksack, which I call the batwing backpack. And here it is: 
It has some sort of soft leather for the shoulders which should wear well for the wheelchair, bringing me my gothic punk street cred. Under the wings it has the same carrying space as the Punk 2008 rucksack which can take a laptop with ease and the accessories in the pockets, or can take my medical and fetish supplies (odd how those two go together!) and carry them with cool elan’. Shall we try it on the wheelchair, I think so…
Looks pretty good so after Linda had it set up I put most of my essentials in it and took off today, meeting all with a smile including the local panhandler from in front of the video store. We had a discussion about low income people are green friendly due to using alternative funding sources (trading, taking stuff people throw away, making money off of recycling) and how making a high density, high income core is actually forcing the people who make it green friendly away.
I got to the store and they had already noticed the backpack, as well as several customers in the store who had seen it driving past me. 
Here is a great picture of me showing my boobies....I mean the backpack (see Soot-san from the Ghibli Museum around my neck!). I tell you, not like I like to name drop (oh well too late!) but h.naoto GETS noticed. Wait till I take my Hello Kitty H.naoto Gothic bag in. And this is a “good” get noticed, not like, “Tommy, move away from the woman in the wheelchair, it looks like her meds aren’t quite balanced!” Which is what I usually get.
I also got today a request on the street today for a postcard, so the postcard project lives on. Here are a couple of the postcards I posted 10 days ago, I waited for the postcards to arrived until I showed them here, so they would be a surprise to the person getting them, but now everyone can enjoy the fronts. I do, “pretty, my precious, so pretty!” (click on the picture to make it full screen)
And here are the more, um, specially requested cards, like Yaoi and Yuri and yes, (avert your EYES!) even hetero pairings.
So if you want a postcard, goth, or loli, or friends having fun, whatever you want let me know. Or you want a “special” post card of “good friends” because you like to see two nice girls together having fun, or two good male friends having fun (or want to figure out what will happen next to the Uke in your mind), then please let me know with an email (mpshiel at hotmail.com). Or like today, if you live in town, just ask me. The postcard project has slowed down due to health but I still did over 25 postcards and mailed them on the weekend! Slowed down isn’t DEAD. So please, ask away, and what you see on the front is NOTHING compared to the backs – trust me. I am a very naughty person (or clean and wholesome, I send out LOTS of cards to kids, children, nieces and nephews), so clean and friendly, or naughty and cheeky....when you want me to be (and I WANT to BE!). So have relative or friend who needs a card, let me know!
Before I finish this post I wanted to ask a favor regarding the BBC. The head of the disability section of the BCC is getting rid of all bloggers and replacing them with a few selected columnists. I have written 25 essays for the BBC. Of these one was used for part of a BBC 4 Radio broadcast, two or maybe three were finalists for writing awards, one is currently being taught as part of disability rights course in a university and one or two are being used as examples of a “voice of the client” in training of care givers in agencies. Plus there were magazine and other reproductions of seme of my other essays. Of my 25 essays, maybe five or six were great, 10-12 were good, and well, the rest we will kindly overlook. The thing is, writing for the BBC brings up my game, but also, I can write the same essay here and it won’t end up in a teaching setting because this is just “some woman’s blog.” While saying, “Here is some material from the BBC….” That’s how it goes. Which is also why I have done it all, on a two week and then a monthly schedule with the BBC complely free. No payment whatsoever. I also did it because I believe that the voice of people with chronic pain, of the newly disabled, of those with chronic illnesses and those with degenerative disabilities are not heard or represented.
The BBC has selected a host of new columnists and perhaps only the three new male columnists have shown up and the new female ones will show up later. But so far, none of the columnists to replace the bloggers has an auto-immune disease, or a degenerative disease (though the one recent post about degeneration and rehab, did get the highest responses of all). There are no chronic pain disease, or chronic illnesses and I am concerned that the voice of many people with disabilities: from EDS to fibro, CFS, neurological pain diseases, MS and even SMA along with so many other people with disabilities are being eliminated (much less the voice of the caregivers). I wrote an essay yesterday, which, depending on when they revoke my access codes, may be my last post, called Toilets, farts, hair and what ‘must be done’.
I would appreciate it, and I can’t repay you except with thanks and comments, if you could click on the link and put a comment as you think it appropriate. Some of the topic we have covered here on this blog, but surely, you must have SOMETHING to say about disabled toilets. I would like the BBC to understand, that while they want to turn Ouch into something covering the politics and public face of the stable, employed disabled individuals, that isn’t what the minutes and often nights of disability are about. I can’t write posts like the other columnists about my sunny vacation, or my wonderful experience with the medical profession. And, from the comments, I don’t find a lot of people talking about that either (depression, frustration, doing what you need to in order to survive, yes, that I hear). I would like, maybe not me, but a group representing both those with disabilities and the caregivers who stayed with them. I think the diversity of those people who comment on here would be a great addition to the BBC site and the REALITY of the diversity of disabilities. Even in MS, or Lupus, we have one disease but hundreds if not thousands of individual variations of presentation. I am NOT ashamed that my disease presented in an atypical way (it isn't my fault and I'm not going to play that it is; I'm atypical, get over it!).
Yes, I have anger that a main disability site (BBC’s OUCH) wants to create an image that “This is the simple and joyous world of disability!” Hey, sometimes it is fun, sometimes it is funny, sometimes you somehow end up with a cool backpack for your wheelchair, but no, every day for many people there is a day which is NOT good, and every day, many, many people are fighting the system and paperwork somewhere (including me today - apparently it takes paperwork and processing to get "a callback within 48 days from a supervisor," she corrected herself, "I mean 48 business hours starting tomorrow."
I said, "After dealing with government, neither would surprise me"
Sorry, I feel very passionately because to me, this is like Mr. Anon coming on and trying to silence me. That a place I contributed to is trying to silence and put a mask over a whole aspect of disability (and a largely female aspect at that!). One thing I will not do is live a lie. So, if you want to speak, please do so for me (or yourself), at the BBC post link.
Thanks (and don’t forget to email me about getting yourself or a friend a postcard).
I would love to say that everything in my life is all peaches now. Instead last night I got my own ‘accidental angel of mercy’, which turned out to be a woman who could tell neither time nor speak English that well. So “Only give the night pills every four hours” and “Give me these pills at 5:30 a.m.” Got turned into “Give me these at 4:00 a.m.!” in her head even though she SAW me take the opiates at 1:30. Plus Linda and I had both talked about how she absolutely could not give them early because after the pain specialist I might be on morphine. So when she started feeding me pills lose on the table at 5:30 a.m. I asked, “When did you give me my night pills?”
“4:00?”
I had her wake Linda and we talked about whether the dosage was high enough to go to hospital. Luckily I hadn’t taken the extra I normally take. So while there was no charcoal and dialysis for me that night, there was not a lot of sleep for us either. The next day and over two hours in getting her dropped, they seemed not at all interested in her giving pills early, ignoring instruction and only checking on me once in 2.5 hours (we instructed every 20 minutes). I was told quite sternly, “Our workers are not supposed to be required to think (at work)!” Which made me wonder, if that is true, why not bring in 8 or 10 year olds, break that child labor law (like so many others Beacon is breaking) and truly have a workforce who won’t challenge them by thinking on the job. Linda has been also told that, “Workers are not to use common sense!” Well, mission accomplished I guess.
This leaves us tired and with no night workers as we found of our three back up night workers, one is back in school and two have been put on day shifts and if they are willing to work an overnight for us, will still be required to show up at their day shift the next morning. Also workers are currently able to refuse to take me at all due to my “complexity” (which sounds an awful lot like AIDS discrimination, doesn’t it?). Except I also verified from two sources that workers can refuse to go to a client due to objection of their sexual orientation ("Me no like gay people!"). So guess being young, lesbian and dying makes me the very person no one wants to go to. Haha, I wish they had that written down in a hand-book so I could get a copy to give to the papers. But I’ll bet it is a verbal policy.
Ironically, I cannot refuse chain smokers, despite having lung problems on my health form. Workers can refuse smokers! Now do you see why I applied to be a worker at Beacon? I don’t have to lift anything, I can choose who I want to go to, there is NO WAY I will be fired for anything, including double dosing opiates or not thinking at all (I might get a bonus for that). Sweet!
Okay, let’s start thinking of nice things. Which means I have to dig around a bit. We had a bit of fresh tomatoes this week.
Linda bought them at the Farmer’s market. She smelled them to see if they had that dirt and fresh from the vine smell. Linda loves her fresh tomatoes.
As for me, my joy was this card. 
I am not (in case anyone wants to start sending my tones of them) a butterfly person. Well I like those walk through butterfly places but generally I think of butterflies and think of young kids and older women. But this card, this card said something different. I don’t know what it was but the butterflies were amazing covering the back. 
On the front as well there was a host of ‘not your average’ butterfly and not your average colouring.
Inside, I found a gorgeous dark gothic dream. 
A girl with wings (check!) and ribbons (double check) and things of corsets and bows, and hair and the colors. It was something between the dark fairie and the gothic otherworld and I just sighed. Beauty. It was a visual dream. Someone totally got me, the got me the perfect card. Which of course upped the anty and now I had to find a perfect one for them back.
Here are a couple of the backs we stamped from last week, hopefully most of the people have received their cards by now so I won’t spoil anything. These are just starting into stage 2 (wood and rubber stamps, not yet dried). I have this new pre-raphealite stamp I love, particularly under the old oak tree, it just seems so very William Morris don’t you think. 
The scroll of stars and sky is freshly pressed and the black ink is drying on the slicker Japanese paper – we dry the cards for 4-8 hours.
This one has some similar elements but again nothing beats a bloody fingerprint and a microscope.
Perhaps this means I am longing for Bones Season 3, which won’t be out for what Cheryl and Linda tell me is a LONG, LONG time. ARG!
Anyway, I am off to try and start something going with postcards, get something happening, start a list, make one and get something concrete going in my hands, if my hands will cooperate this time of night. Too much anxiety and phone tag for today, I want to make a card and send it off. Envisioning a task, preparing for it and completing it. That’s what I need. Speaking of which, I hope we can all think of Collette, who comments here, as she will be doing the 60K walk for Cancer in Toronto starting tomorrow I believe. She’s the one who got me inspired to do the Terry Fox Run/Walk/Roll on Sept 17. Thank you Collette and I wish I could be there cheering you on in person.
Summer is closing off (hooray, I can leave the apartment!), so I guess if we want to finish off our projects, we better get to it! I think that many a male, or female will be in the garage or shed or with some tools somewhere this weekend, getting that stuff done. Fall comes, and we want to be tucked indoors drinking mulled wine – well except me, I will be out finally getting outdoors getting frostbite as we find out tragically that my body is now COLD intolerant too (oh please, I hope that is a joke!).
Cheers!
Gift giving: maybe because I have never kept Xmas or really had a birthday I like giving gifts and I like getting gifts whenever. Gift giving is fun, and so is getting them: nothing better than seeing something and thinking, “Oh I bet X would love that!”
Anyway, I did give one gift over the weekend, but not as many gifts as I would have liked. I was sort of sat upon by my ill health (sometimes when your heart doesn’t beat right, it is like a giant coming and sitting on you – ug!). So that kept me down, but I will make up for it this week!
But I did give MYSELF a few presents (oh was the task to give to others, oops!). Seriously, most of these I got over a month ago and have just been waiting to arrive. For example a sort of friend and person who picks up things for me in Japan offered (as he was sending me two books I bought; a Ghibli card collection – I said yes!) 
As you can see, the artwork is stunning and now I am wishing I got twice as much, but that’s the old problem of the pocket versus the eye (my eye is GOOD at finding things to get, my pocket not so brilliant in finding the money to get them.).
As it happened several people this weekend gave me gifts including a woman who had the stall next to the yarn knitter (last blog post) who was lusting after the Ashford (why is it EVERYONE including Neil knows this and I can’t remember it?). this woman sold goods out of recycled products, in fact everything she sells is recycled, but you would never know it. Anyway, after we chatted for a while she said she wanted to give me a card, because she said it embodied me. 
So here it is, and I guess in a way it is how I operate (I just tend to use more swear words!). Linda had some nicer way of saying it (like, "this is so you!"), I just said thanks and wheeled off in a daze.
I was kind of in shock (actually I medically WAS in shock but for now I mean emotionally) that someone at a farmers faire would just GIVE me stuff. I figured it meant either I exude some special essence, or I look REALLY bad, or maybe they had a similar mission we did, to give something that weekend. Which might be true because I was then given another gift, one which is just as much about who I am, the embodiment of me. It is this necklace which the person actually had commissioned for me (how humbling and cool is that). 
So yes, that’s right, I now have a pendant of Hello Kitty in her Goth boots, with a bloody knife in one hand and a severed heart in the other. SWEET! How incredibly kind and cuddly is that? And she even looks like me!
Plus by post I received from a land I will not name, these stickers, which when I received them, immediately made me lust for more, because I want to put them on people’s postcards. 
But I only have these six. ARG! Oh well, how do I decide though who gets the “Kangaroos Next 25 km” warning?
Actually a few people sent in gifts this weekend to help with the Postcard Project, which is becoming sort of a collective project as the postcards and the stickers are coming from literally all over the globe. Admittedly I end up doing some of the hand work, but I think this is great, how so many postcards sent out now have 3-6 people’s assistance in the creation of them (one person sends a card, another a sticker, another gives a stamp, I assemble and write the message - that's four right there!). So here is one person whose gift arrived this weekend, they sent me some postcards to send, along with a rubber stamp. 
I, being me, immediately put one of the postcards and that stamp to work (hey, we have people who LIKE spiders on the list!). As well as this person/s who send some cards to add to the collection. 
I have to say I have a few candidates in mind for that woman in blue, as well as the seagulls.
So, if you get one of these postcards, I hope you won’t feel it is less of a surprise but more of the joy in receiving a group effort, that your card has ALREADY traveled and been cared about by people before I started on it, just in order to get to you! Thanks to those who sent in cards. As for me, I sent out 32 today (a weeks work) but still, that’s 64 in two weeks so yeah, I do spend hours finding, ordering and buying postcards every week.
In another gift to myself, a person we contacted in Japan went to a limited Exhibit of Oga’s art work, another artist who does some work for Ghibli Studios. I have seen his work in the Museum in oil paintings. 
To give you an idea, here are four of the postcards, just “simple” reproductions of his art. I only have one set, and since the Exhibit is going off, I can’t get any more, so I am afraid this IS a gift for me (sigh!), and you will only be able to appreciate them on here (or when you visit me in person).
I was also given ANOTHER necklace this weekend. An Opal necklace, which the person said that opal as a necklace is supposedly bad luck……but what else could happen to me? I really wished they hadn’t phrased it THAT way. 
I prefer to think of it as since my disease makes everything topsy-turvy, that bad luck opal will be good luck for my heath – and that’s is why I am going to wear it (when not wearing the heart cutting out Hello Kitty!).
Also, a gift I had been waiting on for a LONG time – I don’t know how long, so let’s say 6 weeks, a long, long time (two months?), finally came. And that is my Gothic Lolita Hello Kitty Mug designed by h.naoto 
(he is Japanese fashion designer – if you are somehow overflowing with cash he has tops for $200 or so, but I want a red spider backpack he makes which would be perfect for a wheelchair and is only (just say it fast so that word sounds believable) $88 or so – if it helps I have a $10 off gift certificate?). Anyway the mug was considerably less but is the touch of COOL, Hello Kitty is subversive, Hello Kitty is not just pretty and pink (except when covered in blood). She's cool, and though I can’t wear goth loli (would probably die of heat just putting all those layers on), I can enjoy my Gothic Lolic Mug. Ahhhhhhhh……it is true, some of the best things are worth waiting for (like a new kidney?).
I think that is most of the pile of loot that I gave myself and got (notice I didn’t mention what I gave because I am kind of secretive about things like that – to me gift giving is like a form of communication. Unfortunately I think that means either, I really like myself or I really like Japan, or I really like Hello Kitty, or all three). I hope you had as much fun as I did with giving and maybe you will show me the gifts you gifted yourself with or received?
Also, for every postcard and card and gift I have received, thank you for thinking about me. I try to write you to let you know but with the swiss cheese brain I have now, I miss people out. That isn’t intentional. And the same with postcards, sometimes I find I have forgotten someone so I write one right away! It was fun showing you all the stuff, I liked it (I was like “Here, here, look at this! Look at this!”), so I hope you liked looking? I hope you received or gave some good stuff too!
Here is a great picture of me showing my boobies....I mean the backpack (see Soot-san from the Ghibli Museum around my neck!). I tell you, not like I like to name drop (oh well too late!) but h.naoto GETS noticed. Wait till I take my Hello Kitty H.naoto Gothic bag in. And this is a “good” get noticed, not like, “Tommy, move away from the woman in the wheelchair, it looks like her meds aren’t quite balanced!” Which is what I usually get.
