Posted By Sandra Alland

So today, after giving more blood than I thought possible, then getting some ultrasounds and two chest Xrays (they screwed up the first one, thanks for the extra radiation folks!), it seems pretty darn likely I have not only fibromyalgia, but also rheumatoid arthritis! I also have something called... I forget. It's like "floppy joints." lol. Seriously. But I already knew I was superflexible and doublejointed, and that it could cause pain (as well as pleasure...), I just didn't know it was a syndrome. Such fun.xox


 
Posted By Sandra Alland

Hi there,

So the rain has been the worst I've seen it since moving here two years ago, which has meant a lot of pain -- especially in my feet. I've been having a hard time walking, so the lovely Y bought me my first walking stick (thanks babe!).

Oh, what a fascinating wolrd we live in. I now get stared at A LOT, which is strange and annoying. But I also get treated super-nice, like bus drivers actually stop the bus for me, and cars wave me across the road, and bus drivers also wait until I sit down before roaring off from the curb. If only such courtesy was just naturally provided...

The cane itself is actually pretty sexy, though I'm not quite sure I've mastered my technique (or that sexy is a good thing to look for in a cane lol). My foot is hurting less, but now I'm developing some worse-than-usual hip pain. Argh. We shall see if the good overpowers the bad here... in the meantime, it's at least a great (if somewhat depressing) study of human beings...

xo


 
Posted By Sandra Alland

Hi,

I remember a huge debate in beginner-level Spanish during my Popular Culture class at the University of Guadalajara, Mexico -- about a blind photographer who was exhibiting there at the time (uh... around 1999). Could a blind person "take credit" for photos they couldn't see? Since photography is a "visual" art, blind people should naturally be excluded. Etc. Bla bla bla.

I also remember: a) realizing that we were never presented with information about artists with disabilities back at school in Canada (thanks Javier the Mexican Supertutor!) and; b) trying to think of the Spanish word for Shut up you able-ist Canadian wankers...

Anyway, Rosita McKenzie is a blind photographer who worked with six other visually impaired people to create Revealed, currently showing at North Edinburgh Arts Centre. I didn't love that the show was really difficult to get to and super-difficult to find, even for someone who can see perfectly well. I also didn't love that they had closed 3 hours early and started cleaning the floors with superbleach because they assumed no one would come on a sunny Friday. I *did* love that they let us in (even though the superbleach almost made me pass out).

It's odd with blindness... seeing folk are suspicious. How come you're looking at me if you're blind? Why does it seem like you can see where you're going? Well, that's because "blind" doesn't always mean completely blind, in fact many legally blind people have times of day, or certain ways, of seeing things. I've heard stories about blind folk being questioned about taking their canes into Edinburgh museums because security guards decided they were "faking"! (and their canes could be used as weapons to attack the displays?)

Anyway, this group is made up of people with various kinds of blindness, and various ways of seeing (or visually imagining) the world around them. My favourite photos were by Andreas Gartner, for me they were the most poetic.

I also liked the recordings by Rachel O'Connor and Jules Rawlinson, though they were a bit hard to hear and only one speaker had a seat next to it and you have to run from one speaker to the other (at opposite ends of the room, which is a bit hard on a fibro-gal). Perhaps most interesting of all were Camilla Adams's tactile interpretations of the photos. Adams worked closely with each artist to create touch-interpretations of the photos. It's a whole new way of  "looking" at art, one I'm curious to feel more of.

Anyway, this show is well worth the trip past Telford College into the boarded-up buildings of Pilton.

xo

S


 
Posted By Sandra Alland

 

poster

 

In other news, I am in love. With my TENS machine. It's a funny wee machine that looks like a walkman and has electrodes you stick to your (and your friends') body parts, and they give little jolts that produce endorphins and confuse your body out of pain. And you can wear it anywhere! Except in the shower. And leave it on as long as you want. No cure so far, but it's pretty darn swell... my deepest gratitude to the nurse who gave it to me.

In less happy news, it is the Year of Homecoming, which is the year when Scotland supposedly welcomes back all its people who've been spread across the globe. That's not the bad part. The bad part is that today, like many other days in the past two years, I was told to go back to my country. A woman almost ran me over with her car, and then of course was angry at *me* and then heard my accent and well... welcome home, Sandra, welcome home...

But I can't end on a note like that. So. I will say this instead -- thanks to The Street and Trendy Wendy for sponsoring our CD launch. The Street truly rocks. Go there.


 
Posted By Sandra Alland

Pride Scotia, my first one. Hmmmm. Well, I'm glad it exists, and it's nice to be able to join the parade without having to make an official group and fill out a thousand forms.... But sheesh. What is it with Pride organisers and their wacked priorities? Last year Boris and the army led the parade in London, and this year here in Edinburgh the police were given the space of honour at the front. Well, we joined the 5 people at the butt-end of the parade with the lovely, handmade Bisexual Pride banner.

bipride

It rained. The parade was rerouted because of construction, so most of the march was in an unpopulated area. ("We're here, we're queer, and no one's gonna notice...") Also, most sadly, there was no music. No music at Pride. I heard later that some drummers failed to show up...

rainypride

wizard pride

even dorothy looked a bit sad...

Despite all this we had a grand time. Edinburgh is small enough that you bump into every queer you know, which for the most part is swell. The Street was grand as usual, and Blue Moon, and we visited the lovely E and ended up at some crazy film festival party where we knew no one but our three friends. But at one point I bumped into my friend N, which was also swell. The first thing she said was, "How did you get in here?" which was hilarious because I *had* walked packed security without a ticket...

maricones

Later we really wanted to dance with our friend L, and unfortunately she was at GHQ. That place has always rubbed me the wrong way... perhaps the 7 pound cover charge, or the fact that they reportedly have a rule against working class people gaining entry, or the fact that hardly any gay people seem to go there. Ick. But we got in without paying, so I decided to give it a try. Only 3 minutes in, and some drunk assholes were pushing us around, and we received no support from the straight male bouncer. We left, and shall never return.

So ouch. The fibromyalgia is not my friend. Walking in a parade and dancing meant that I couldn't walk for two days. Not fun. In the end, though, I think it was worth it.

xo


 
Posted By Sandra Alland

Well, it's still touch and go as to whether there will be a summer in Edinburgh this year... last night was freezing again, but today seems promising...

In other news, I must whinge a bit more about the shoddiness of the National Health Service, particularly the Department of Rheumatology at the Western Hospital -- who booked me for an appointment in May (after a 3-month wait) and then sent me a letter saying I had missed an appointment in April (that I never had) and therefore was kicked off the waiting list and had to be referred all over again. When I phoned they admitted their mistake, but refused to give me another appointment and insisted I must go back to my doctor and start again anyway. Sometimes I really wonder about Scotland... especially this strange business of communicating only by letters (which almost always contain incorrect data). The phone was invented quite a while ago friends...

In continuing NHS rage, one of my many shoddy doctors (avoid the Toll Cross Health Clinic) recently told me he is qualified to give acupuncture under the NHS. How cool is that? (I thought.) But when I arrived he informed me the acupuncture had to take place in 5 minutes (impossible) and then proceeded to just shove needles into "where it hurts the most." My ankles were bleeding, and remained swollen and bruised for three days. Plus, the guy was supposed to write me a prescription during my visit, but had me leave the room and come back so he could double-bill for two visits! Sneaky. And freaky.

In better news, I saw a lovely show that's on into June at The Owl and Lion Gallery in Grassmarket. It's called Story Motel, and features over 50 hand-made artists' books. There is some stellar stuff there, and most of it you can read on the spot if you want. Though there are plenty you'll want to buy!

Also caught the cracking Raise Your Hem at the fabulous Itsy Kabarett on Friday at Voodoo Rooms. Despite one homophobic comic (I started to heckle him but he was bombing so well on his own I just let it happen...), it was a lovely night, with loads of steamy burlesque. The Itsy folk just keep doing it better and better.

What more? Oh yes, Y and I got treated to L'empreinte de l'ange (The Mark of an Angel) at The Filmhouse yesterday. Safy Nebbou's film about the true story of a woman who becomes convinced someone else's daughter is her dead child is surprisingly good (I say this because at the beginning it seems like a stereotypical psycho flick). Catherine Frot is stellar as the lead, and kudos to Nebbou for creating a taut thriller without falling into tired old traps.

In still other news, Zorras have finished recording our first CD, thanks to the lovely and talented Andy Duncan! More on that soon. Today we are off with the dashing and talented E, to take some foppish pics.

xoxoxo


 
Posted By Sandra Alland

I forgot to update you on my oh-so-hopeful trip to the NHS to do something about my ever-worsening chronic pain. If you recall, the doctor told me she was going to do some research and get back to me. I almost danced home, thinking: Well at the very least I'll get a referral somewhere! Hope, sweet hope.

But her "research" arrived in the post, and well... it appears she searched "fibromyalgia" on google and photocopied the results! What brilliant investigative work my friends. I've only had it for 6 years, thanks for telling me the symptoms! Argh. Ah, Britain and the 3-minute-per-patient limit. Ah, modern medicine...

Speaking of fibromyalgia, Mattilda Bernstein Sycamore has written a stunning new novel, So Many Ways to Sleep Badly, that contains the first accurate descriptions I've read of what fibro feels like (and what it's like to have pigeons in your ceiling). Honestly, that's enough to recommend the book alone. But it's also a brilliantly-written account of life in San Francisco during the invasion of /war on/occupation of Iraq, and of a writer trying to flourish and love among anonymous hook-ups, sex work, messed-up friends, the hope of a boyfriend, incest flashbacks, and various infestations in her apartment. It's written in a strange journal-like stream-of-consciousness, with no real plot to speak of, but I was turning the pages faster than in any thriller. Sycamore is funny, smart, has kick-ass gay shame and anti-fascist politics, and can even pluck your little heartstrings with descriptions of fuzzy sea lions without making you puke. Not for the faint of heart, but then if you were faint of heart, why would you be on my blog? Now go buy the book! It's a balm in these bad times, and a relief from the bad writing that clogs up bookshops.

Lucky me is hosting the Toronto launch, and reading with Lady Mattilda November 3rd. Get tickets at This Ain't the Rosedale Library for free before November, they're $5 at the door. The door is The Boat, on Augusta in Kensington Market. Also reading are the wonderful Tara-Michelle Ziniuk, Stacey May Fowles and Hal Niedzviecki. 

xoxo

SA


 

 

 
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