Thursday, December 17, 2009

Please avoid 'this' phrasae & the Xmas Craft Fair Sannich

Lately, I hear the phrase, “Any day above ground is a good day!” a LOT.

There are people who CAN use it, and people who can’t. Care workers who are irritated because you look and feel like crap cannot use it. They make this statement to basically say, “Shut up and appreciate what you have” which right now is being told to me a lot because it turns out that being ill, and thus moving slow and eating slow, does not fit schedules well. So when they come back to check 20 minutes later and find I am still a shade of grey, they tell me that little gem. I want to grab them, by my teeth if needed and hiss: "And any day you have MY disease, and I get your AB body, and I get to decide when and if you eat, or drink, or get up, or piss or shit, now that is an even BETTER day.” If only they wouldn't get offended when I said or hissed that.

But they WOULD be offended. Why? Because the last thing a person who is getting paid or has dedicated themselves to helping you wants to be reminded is that they themselves, despite the Xmas rush, despite the problems with the toaster, and despite the relatives coming next week are actually DAMN lucky to have a body which can not only take care of itself but others too. But they are. They really are.

But there are people who can use that phrase? They are the people who know that it is a joke, like when two chemo patients are both holding their hair away while vomiting, and one says, “Oh yeah, any day above ground is a GOOD day.” and the other laughs and then they vomit again. Because it is a joke, as there are minutes, hours and days when suffering life is because death choked on us, and spewed us out. It is the kind of sick, horrific joke that a torturer would have on his or her coffee mug and take sips from it between dripping acid on you or hitting you with volts of electricity.

I am not dead yet, but I've sure had some days where it would have been a hell of a lot better for ME to be below ground. But that just isn't how things get played, and I play the long game: the sweet and the slams.
Yet, by the two facts, a) every careworker I have wants to tell me this and b) no care worker wants to touch me, not in days, or weeks – I can tell that I really do look bad.

Oh well, back to my hour outside, at the craft faire on Sunday (supposed to be Saturday but too FUBAR on Saturday). First off, with the Emperor’s March from Star Wars (that music when Darth Vadar came onscreen), here is Eileen Stevens from Golden Maples Farm. I have met her at various fairs and don’t have any pictures of her or her products. Why? I do not show her because she has thrice threatened to sue me, the last time for almost begging her to take a picture of her diabetic jam. Yes, she HAS diabetic jam, but does not advertise it on her webpage, and doesn’t want anyone to know because that could BREAK copyright, so she claims. She sells 110 mg jars while Whimsical Preserves which many people around the Nation, including our household attest to as fine Jam sells 500 mg for the same $5 (Whimsical preserves gives you .25 back for the jar too! – email me and I will email you their contact info, they make to order for diabetic jams, preserves, etc – she has not figured out a way to make diabetic marmalade).

The reason I bother including Golden Maple Farms and Eileen Stevens is that if you look behind Linda in the picture below there is a word display in a stand. That display talks about how the money she makes goes to help ‘disabled children’ ride horses and how she is a member of the BC therapeutic riding Assoc. That last statement is true, however she is not an official fundraiser or fund representative for the BCTRA (or on the board) but uses children with disabilities the same way a pimp also uses human beings – to make money. And in a single conversation with her she threatened to sue me three times, and claimed she had a ‘team’ of lawyers, and that she had sued five people just this year, and that she is registered her trademark, the Pegasus, with the Library of congress for INTERNATIONAL trademark copyright! I said, “I guess you are a big fan of ‘fair usage’ then?” and she kind of went postal. Then she started talking in a tone which made it clear those 'poor cripple', you know, those little people who come and ride her horses like those with “Down’s, Cerebral Palsy, ADHD” and referred to double amputees as ‘so cute bouncing along....’ It became quite clear in talking that she has not a great deal of understanding of the difference between Down’s and Cerebral Palsy and sees both as being automatically extreme developmental impairments (neither is true – as the broadcaster with CP on BBC’s Ouch would tell you, or the professional comedian they interview, or the people with Down’s who work a block away at the Red Cross will explain to you). It didn't seem, after all the years she claimed to do theraputic riding that she knew much about disabilities at all. Indeed, it didn’t seem that those with Down’s were even allowed to ride the therapeutic riding but were ‘allowed’ to brush the horses instead. Nor, since she could not be bothered to slow down to listen to MY slight lisp and often cut me off or didn’t understand me, is it likely she gives dignity to those with CP, Down’s, Spina Bifida and other conditions, which require different movements, and speech. Another of Harriet McBryde (sic) hated 'crip camps' where you are only praised for looking and acting as 'normal' as possible and AB people make all the goals.

BUT, who wants to go to a craft faire, at a time when you WANT to buy a gift, and get the equivalent of a female Jerry Lewis threatening you that if you don’t buy her product that disabled children suffer but if you take a picture she sues you? Not I. So how about this fellow’s work, Claude Duperron, which is amazing pottery! What is Amazing is that it isn’t pottery, it is blown glass. The one on the right is called ‘Changes’, and his glass, called Rhythms Artglass (est. 1981) goes for big money, because it takes a lot of years of training and talent to make it. “Do you mind if I take a picture?” I asked him.

“No,” he said, then added, “But don’t run off home and make the same one!” and we both laughed because the skill to make anything like that has to be earned, over years and years. I still look of it and my mind goes, “Pottery” but it is blown glass. Click HERE for the webpage, I recommend Roots, Salmon River and Marine Gardens (or hit slideshow for them all). Since the smaller vase was $595, and I liked the larger one, I explained to him about the ‘ones’ column, the ‘tens’ column and the ‘hundreds’ column and how I LIKED it, but I was a column short, and it wasn’t the ones column.

Now Eileen honestly did think that she owned the image of the Pegasus even though, as Kenyon and Kenyon of Intellectual Property Law explain in a sort of how to on Fair Use and Trademark: First as a Canadian she has to register her trademark in Quebec, which only grants her 15 years, IF defended. Trademark, unlike copyright, is less enforced and can be take over by another. My picture of Linda with the Golden Maples Farm jam for example IS under copyright (explained here) but to ME. To make it simple, every time you sell on ebay, you take a picture of what you sell because while you are selling a trademarked product, you are not representing yourself AS the owner of the trademark, nor are you stealing the copyright of images they have produced as by taking a picture you have created your OWN copyright image. On this blog, as many people know, my pictures and text, while retaining copyright and pretty much free for single usage (a byline is preferred if possible), but I don’t get hinky! I do however try to buy or take ALL images that show up on the blog (which is why I spend my money for example buying from Japan, digital representation rights of a favorite artist). So, fear not, people will threaten you with lawsuit, such as the Times Colonist organizer did, but much like how Angelina Jolie walking her dog can be shot and reprinted without needing permission; so can my picture of the organizer of Victoria’s largest 10K which has a wheelchair division but no bathrooms at the staging area for people with disabilities.

Ack, enough law, back to fun things like all this TEA. The good and the bad part of all this nice tea was that though I knew that people in the UK, New Zealand, Australia, India and other places would probably LIKE some specialized tea, I did not know what kind to get them. So if you want to send me an email on the sly saying what kind you like, that would be…um…useful, and you might end up with a random gift, oh, say, a tea box sized wrapped gift.

Last faire I bought some gourmet dog and cat treats, and I hoped to find some this faire. I had posted out all of the treats I had bought but I wanted more (it turns out a lot of readers have cats, and dogs!). There was none to be found, but I did find some unique Salsa by Elizabeth Evans (email me for her email or phone number) who is in Chemainus, BC and makes not just Tomato but these other salsas. I tried the cranberry and it did have a good strong cranberry taste, but unless you get the medium or hot, I think it tends to drown out the salsa taste (would be great with turkey burritos though, maybe?). I got the Tomatillo, which are the small green tomatoes that are from mexico. My tongue won’t allow many foods as being too hot (for example Bar-B-Que chips are too ‘hot’ for me to eat now), but this was okay, in the mild, to be mixed in small quantities. And because it WAS hot, I could taste it, and it had a unique taste, both things I don’t get a lot of these days.

Kerry of the Kastawayz Art created these different copper and metal fish, and we used them to talk about the different types of fish and chips (the fish with two eyes up there is Halibut, which has the most mild flavour and is the ‘original’ but now very expensive fish and chips). We both liked Halibut and traded places we get the best. I found out that my favorite place gives out a free set piece of like 2 halibut and fries to any homeless or near homeless person who asks, but only once – so even the homeless or those who are just scraping by can have take out, at least once.

We had gone around to see the different dealers (like Bill Pollard’s hand tied flies for fly fishermen and women) and then bought the stuff at the end. I ended up getting a bit from The Fishery (you can see me here, doing a display model of their product). I really liked the Fishery because they were very friendly, and they were the real deal. We talked about some of the people I knew and who they knew who were on different boats. They have taken the gamble of the fishing life to the next step, as due to conservation, BC salmon fishing in particular has very, very short seasons, literally days, when you fish day and night and hope to catch something. They then, I think in a co-op established 1992, separate the types of salmon (red spring, white spring, sockeye, pink, chum), tuna, oyster, scallops, and had them smoked and unsmoked, in a read to roll tin and a price per can and per case.

Dana at The Fishery helped me a lot as I know that things like certain Tuna are prized by the Japanese at top to eat in sushi, along with different types of Salmon. I wanted to know what to get as presents and she helped me, and let me know what the Japanese really liked. Plus, since presentation is very important in a Japanese gift, she did a wrapping of net (as if these cans were ‘just caught’), as well as with a special bag, even it if was just one can. They are based on SaltSpring Island (another island I taught on – I used to have a thing for teaching on islands), and I recommend them for gifts or good fresh smoked and high quality salmon, Tuna and other sea food (webpage HERE).

So, after my big hour or two out it was back to fever-land. I am free of fever but weak as a kitten, or weaker, I think one of those kittens who get the feet tangled up and falls just knocked me over. I still have a lot of presents to send but I will send those out in the coming weeks when the post stops losing packages. Because a lot of what I am posting I can’t get again, it is unique, or afford to get again, so I want to make sure it gets to you. I will still be sending out postcards and cards and hoping for the best!

I am to sleep, after boxing. It took me three days to write this. Shit. Right now I would love some improvement instead of this five weeks of going down and down and down. I got to teach a student tonight a bit of boxing. Most of what I taught was just to extend the arm, or she will learn to always pull the punch and to actually PUNCH. I started by hitting my head. Then I showed her that no matter how hard she hit, she couldn't move my arms, which I use all the time to support my body. And though she told me she couldn't fight (Who is asking you to fight, I just want you to straighten your arm), and didn't really do this she started to relax. And then started to hit, one, two, three and POW. By the end, we were both smiling and she was hitting ten times harder than before (sorry, she'll be sore tonight). But she is going to take it again. When I teach I have a rule of three - which is 1 thing a week to concentrate one, three at most to mention. So when she straightened her arm, that was good, and I told her. A few other things to mention, but that was it, next week, it can be something else. Better to enjoy the sport and get things right as we go along than not at all. Ian said to Linda, as he left me with her for several rounds that there was nothing I was saying or showing that was wrong (Whew). I like people to enjoy a sport. That is the point of sports, right?

As for me, I am weeping dead white blood cells, a white puss that blocks my vision. I boxed by sound alone tonight, with the speedbag, I wasn't fast enough to hit what I saw so I tried to live in the sound, turn it into numbers and then one and left hand hit - bam of the bag on the back of the wall, right hand hit, bam, left hand, bam, right hand. Linda who knows too well how I think, guessed. Ian didn't.

Once the high wore off, it took me two hours to be able to type AFTER I had a nap. I had a seizure cycle. But I did sweat. And I did teach. The world changed a little. That made me happy.

Because I want a lot more of that. I want to live. Except that it looks like a won't. And it feels and looks like it might be days or weeks right now. And I have no control over that.
There is no 'I will overcome' bullshit. I need the headrest, I need all the assistive devices and more. And I still want to live. Not because 'EVERY day above ground is a good day' but because I want those days so that the world can change a little, and so can I.

I want to live.


wendryn said...

I want you to live, too. You are a person who makes a difference every day, with complete awareness.

The lady at Golden Maples Farm is one of those people I'd be quite happy to kick. I've met some people like those - we'll be out with one of our brothers and people will only talk to us, not him. Even if he responds, they never talk to him. It makes me furious.

The blown glass is stunning, and I really liked the metal fish! You do manage to cram a lot into a little time outside, don't you? :)


SharonMV said...

Dear Beth,
I'm glad the fever is gone & hope you will recover some strength. Thank you for writing about the craft fair & the pictures. And now you have a boxing student, a protege. One important thing per lesson is a good method.

I hate the downward slide, & the feeling that goes with it. I hope your's will level off. Even if it is not a good day above ground, it is still worth being here. You fight so hard to be here, I hope you do get to have some good days soon.

I hope you got my postcard. The package of stickers should be there now or soon. I have another shipment of stickers almost ready to go. I think I'll follow your example & wait until after Christmas to mail them.


yanub said...

That phrase is quite common at my workplace, and I use it, too. But we are using it to fill in for our rapidly diminishing enthusiasm. Perhaps your careworkers are also using it that way, and haven't realized that it is not appropriate given their clients.

The glasswork vases are stunning. So wonderful! And the canned fish is good to know about. I always have some guilt eating fish nowadays, so good to know a product is as sustainable as possible.

So, do you have a speed bad at home you can get to when you can't get out?

yanub said...

"Speed bad"? you ask. "What the heck is a 'speed bad'"?

Simple. It's what you get when your fingers have their own idea of what key to hit.

yanub said...

Oh, yeah, that is, it should have been "speed ball."

Raccoon said...

Eileen is an idiot. And a bigot. Even if she does make good jam.

Cranberry salsa? Oh, that sounds delicious! I grew up in what is now the hometown of Ocean Spray Cranberries, and used to munch on them raw. My sister still has a couple of bogs. Every once in a while she'll send me some.

Dana at the Fishery is cute!

I was always taught that, when you hit someone, try to hit through them. Apparently, most people aim for the surface. In other words, don't try to hit someone's chest, try to hit their back by going through the chest. Of course, that tends to cause a little more damage than most people want...

Aviatrix said...

When you say your careworkers don't want to touch you, that makes me want to hug you. I am studying the picture of you at the craft fair, looking for something that would make another human being not want to touch. I am honest, so I have to admit that your hair is a little thinner and you eyes more sunken than in month-ago pictures, but if you're not more huggable-looking than some of your so-called caregivers, then Linda is the most flattering portrait photographer in the world.

I wish you restful sleep, physical and emotional regeneration, and as many more days on this Earth as are required to complete your mission.

cheryl g said...

To have anyone use that phrase to you is extremely insensitive to put it mildly. To have careworkers who can’t leave their schedules behind and adjust to your needs and schedule is yet another sign of the poor caliber of worker Beacon sends you.

I am glad we did take the time to go to the craft faire. Most of it was enjoyable and there was some truly breath taking art there and lovely friendly vendors. I am not including the Golden Maple Farms woman in that group. She is a bully who likes to play up her own importance and tries to intimidate others. I certainly did not find her to be the kind of warm, caring personality I would want to entrust ANY child with.

I really liked the people from The Fishery. They were warm, friendly and willing to go the extra steps for the customer. They also had a very tasty product. It was nice to see the Whimsical Preserves stall and stock up a bit more for the rest of the winter. They do make fantastic jam. I had great fun talking to a lady who made fused and stained glass ornaments. Over all it was a really good faire.

You are a really good coach I have found. You sure gave me a lot of pointers with badminton. I think Ian is very smart having you do some coaching. You learn quickly and you are really good at clear explanations. I wish more teachers and coaches used your rule of three. It would be less discouraging.

I find that your actions regularly change the world a little for the better. You teach with your words and your example. I believe in your ability to continue changing the world. I am glad you want to live. The world is a better place with you in it.

Olivia said...

There is so much in this post to respond to. Three main things I want to say though,
1. I do know how lucky I am. I know I still take it for granted but
2. you have changed me and I think about the world differently now, and how things are for all the different levels of ability and disability that people experience.
3. I'm so glad you got to teach at boxing and that it was so satisfying.

Lene Andersen said...

I want you to live, too.

JaneB said...

That glass was amazing - I've travelled to Scandinavia a bit over the last few years and become quite interested in art glass, as one of the places I go is in the glaa making region. That guy is really doing something special and magical with glass - thanks for sharing the pictures. And for wanting to live. You teach by being, by writing - it's deeply in your nature.

It's hard that Christmas, a time of peace and hope, makes people so rushed and selfish and self-focused... I've never really understood how that happens. But I don't understand people very well! Hope this week involves some proper rest, and stabilisation, even if it is just a little more time on a ledge over the abyss.

Thank you for sharing your pictures and stories!

Kathz said...

I'm really glad to read about the times of happiness - the good bits at the draft fair and the excellent teaching. Thank you for sharing this.

Devi said...

Regarding not understanding the difference between Down's and Cerebral Palsy - when I was a kid, the epithets "mongo" (as in "mongoloid," as in the outdated, offensive word for a person with Down's syndrome) and "spastic" (as in the offensive word for a person with Cerebral Palsy) were used interchangably as schoolyard insults. I take no pleasure in retelling this.

Those who used those words were children and may not have known any better; adults, though, should know better!

Those glass objects that aren't pottery are beautiful to say the least.

Wishing you good Not Dead Yet days.

Elizabeth McClung said...

Wendryn: yeah, the lady at Golden Maples did not make me think of 'maternial' or 'gives hugs' - does she hug as quickly as she threatens to sue?

I am glad you like the metal fish. I should have talked with them longer.

Sharon: I just got your stickers, the post is a little slow, I haven't been able to open them yet. I will tonight, thanks.

I found out I still have anenemia and it is still progressing AND my free T4 indicate that I have active hypothyroidism, and thus a sucking up of energy, or inability to convert food to energy so that is probably not helping.

Yanub: I think a lot of people use it, to describe a bad situation and the whole, "Well at least I'm not dead or dying" is unsaid. However, to take care of the dying and use it is really crass.

Canada has been very strict about sustainable fish and will put a ban on for 10 years if they think the population needs to regrow or has been overfished or a natural disaster has thinned a natural migration. Salmon in particular are very regulated because of where they spawn. So I recommend the Canadian (regulated) salmon versus the Alaskian or Washington (unregulated and 'geee, why is the amount of salmon half what it was 5 years ago?) wild salmon - the reason US are moving toward farmed Genetically Modified Salmon - which most EU countries won't allow in - so getting wild salmon from US is rather difficult.

As for speed bags, I am too slow to see and punch the bag, plus it is too light to help me sweat, for me typing is the same as a speed bag. I might do a heavy bag though.

Aluwings said...

How about: Any day you can write is a good day?

You have a unique and gifted way of describing the world and your adventures in it. Challenging and inspiring reading.

FridaWrites said...

It took me three days to read!--difficult few days, have read a paragraph here and there as I can. I broke down and took an Enbrel shot, so you know I mean pain given my resistance/fear of effects.

The jam lady needs to chill a little. I like the tuna/salmon lady and all the blown glass. Glasswork is gorgeous.

Using that phrase against you isn't right; quite different from using it in camaraderie.

Glad you are boxing.

I want to live too--thus Enbrel.