Saturday, April 28, 2007

Wheelchair Crip Goth goes visiting friends..in the cemetery

You really can’t call yourself a Goth, much less a lesbian crip goth if you don’t hang around cemeteries; even if Victorian/Edwardian cemeteries are not very wheelchair accessible. So today I made sure to stop at Victoria, BC’s Old Burying Ground, the fort/city’s second cemetery which was only open from 1855 to 1873. After that people went to the Ross Bay Cemetery (or depending on ethnicity the Jewish Cemetery or the Chinese Cemetery; that early distinction pretty much sums up why I first left here). Of course Victoria’s cemetery doesn’t really compare to the cemeteries of London I used to visit, one of favorites being the Brompton Cemetery, one of the “ring of seven” great cemeteries opened at the start of the Victoria Period around London. In a delightfully macabre yet thoroughly British style, Beatrix Potter of the children’s book fame, took many of her character’s names from the tombstones (good enough for her, good enough for me). Indeed, the famous Mr. McGregor, arch nemesis of Peter Rabbit was not only “raised from the dead” as it were ala name stolen from tombstone but his infamous garden is based on part of cemetery itself. Something you might want to mention when reading it to children at bedtime.

I chose the oldest part of the cemetery and did a wheelie to get myself situated amongst friends; rotted mulchy friends but friends nonetheless. Of course, I got about two feet before I fell over backward in the chair. Not many people can get grass stains on a hairband; at least not without some sort of sex involved. I wearing my NEW corset (oh...so many corsets, so little time). It is the Victorian style Christabel Corset with brocade, lace at the neck and velvet black ribbon lace ups along the sides. Skull earrings, skull headband, red skull converse; it is a trend I think will last, at least as long as people keep dying. Just think of me as that skull cup in the painting, your little reminder of mortality except I also happen to have that squashed breasts pressing upward in a sexy way thing too. Plus the “living on an island full of hills” giant wheelchair arms and muscles.

Little did I know that less than an hour later men would be assisting me OUT of my corset (sounds like a classic gothic story to me!). Little tip for people with multiple heart conditions: Don’t do a lot of stuff for six straight hours and THEN decide to climb two hills to go to the library. Not if you don’t want to have some/several heart “episodes.” have to be put on the floor of the library in the recovery position and start shaking uncontrollably like a super-excited greyhound (only in humans they call it “going into shock”). There was an argument about being a slave to fashion or improving my circulation/breathing and because I couldn’t actually talk at the time (or move my limbs, or have a steady heartbeat), I lost. Sigh. Corset removed, covered in blanket; I was lying down....but it wasn’t sexy (or satisfying). Good news was; I got to meet the Head Librarian. I know that because I read his tag when he bent over to put the oxygen mask on my face. First thing I said when I could: “Please don’t ban me!” They said, “No problem” but then checked out my books while I was still lying down. So I guess they didn’t want me browsing some more after the 35 minutes on the floor? Seems like a mixed message, no?

I haven’t blogged awhile because I was on vacation and the internet computer was up a double grand staircase. Not exactly wheelchair accessible. And being on vacation I, of course, went and did everything I could (zodiac rides into the wilderness, boat rides across ocean channels as the tides make scores of whirlpools, spa treatments, getting down stairs into the bar, going to a sauna, seeing the local wildlife (I mean the people in a remote fishing town – skary!)). I was like a six year old at a birthday party, I was having so much fun, I kept getting sick (like when you ate the ENTIRE icing on the cake), but then as soon as I'd recover I run off and have more fun until the next incident. So, by the second day and third day of my “vacation” the resort kinda had this EMT guy who kept an eye on me most of the time. Still, when I wasn’t slumped over or laid out on some dock getting revived, I was plotting or starting some new adventure. Hey, I pass out lots of place, but here I could pass out in NEW places, while doing new and exciting things. Having to have oxygen and recover from a 50 mph zodiac boat trip where I watched young eagles learning to fly is WAY cooler than having to recover and have oxygen because I stood up to put the groceries in the fridge. Of course, I was in such bad shape once I got back home I had a sort of “medical vacation” to recover from my vacation (see, today was supposed to be my “all better” day). I’d like to say I’ve learned my lesson, and I have: “never give up, never surrender!” I have already booked a wheel along the beach tomorrow; as long as the sun shines and I have mobility in at least 50% of my limbs…that’s good enough for me (and remember; a new day, a new corset!).

Tuesday, April 24, 2007

I find my place in nature, and some nice EMT stories.

Don't spend long times talking to paramedics, and in particular don't get them talking about "What fills your time" when you have decided to go to one of smaller islands around Vancouver Island to get away. Unless you like hearing about people falling from trees and having branches go right through their leg ("With a full impalment we just leave it in"), or the many, many ways people can put fishing hooks (or bunches of hooks) into various parts of their body. Don't bother watching the film SAW or HELLRAISER, just come to an island with a lot of fishing and talk to the paramedics.

Also, when the dock of the island you are on spontanously catches fire and erupts into flame as the ferry is approaching; that's a bad sign, right? Particularly as the ferry decides there is no way they are coming to THAT dock and sails away. I really wish I was making this up. Linda has already checked for the 666 hidden in my hair, no such luck.

Also, don't talk too much to the "lone gunman" style zodiac driver Mr. Sharkey (that's actually his last name) who seems to have endless stories of death and destruction at sea. His favorite around me was the two killer whales who in a combined attack turned a sea lion into a quad (his term) in seconds by ripping off all of its fins. Then they let the baby killer whale play with it for a while (my sitting there in a wheelchair didn't put him off at all - at the end I said to Linda, "So, we now know were I fit into the "natural world"; killer whale chum). Apparently, last week a pod of killer whales was travelling by where we are and were using their fins and tails to club a seal to death, mostly by battering it and keeping it under the water to drown. A tourist family saw the killer whales slapping the tails on the water and were pointing this out to the children going, "look, the whales are playing for you." The locals are all like, "Uh...yeah....playing."

Saturday, April 21, 2007

Downtown Victoria: The DVBA vs. the angels who protect me

Over the last few two weeks, roaming in my rented rigid wheelchair, I have noticed a consistency of human behavior. Most people are just too busy and too scared to deal with girl in wheelchair (no matter how sexy her goth style). I include myself among them; while I might have searched my attitudes and confronted internalized racism, struggled with my fundamentalist taught homophobia, learned about the LGBTQI spectrum, studied up on different cultures and learned some aspect of all the major religions to try and show respect to what others held important. I never really got around to disabled issues though. Oh well, only so much time and after all, it isn't polite to pry anyway? When I was in fourth grade, I was asked to tutor a boy whose face had been burned off. Not burned but burned off: no eyebrows, a lump of a nose, a sort of pink and red cotton candy head that had been pulled a bit too long. I tutored him in math for six months. In that time, I never learned what he liked or didn’t, never got to see him as the lonely person beneath the skin, just as "the face"; I was too scared and too busy “protecting myself” – like of the two of us, I was one who needed protecting? At least I learned to look him in the eyes, and to not look away.

However, A group of people have emerged in the last few weeks, protectors who go out of their way to look after me; I speak of the homeless and panhandlers. In my city, which thrives on tourism and is the warmest city in Canada, the “problem” of panhandlers and homeless is a long standing one. The city has banned sleeping in parks and banned sitting down on the sidewalk downtown. A new initiative by the two year old Downtown Victoria Business Association has downtown business owners putting up hundreds of signs stating “Private Property” and warning people (read homeless/panhandlers) not to loiter, camp, cycle, skateboard or deposit "chattel goods." In the Victoria Times Colonist, a picture displayed of lower Fort Street, one of the areas where businesses are tired of stepping over sleeping bodies to open shops and cleaning up “urine, feces and needles.” As the Downtown Business Association said in their editorial in the Victoria Times Colonist, “The thoughtless acts of a relatively few create perception problems for downtown Victoria. This tarnishes our image....Downtown businesses have demonstrated a generous spirit in providing contributions to assist the marginalized,...We have little patience, however, for those who abuse our goodwill and contravene municipal laws.” So, pilgrim, you is uglifying the landscape, an image problem and if you don’t move along, we will be “forced” to prosecute you to the full extent of the laws we just passed. (Please note that the DVBA in their defense stated they hire homeless/panhandlers once a year to help put up Christmas decorations – they do care…annually)

Ironically these signs are also in the atrium of the central library, where dozens of government and other downtown workers loiter through lunch hours, breaks, online meetings and phone calls. But, no transients please, there is an image to think of. As to the sleeping, stopping, peeing and defecating, I think this is likely the rare instance passed off as standard practice (not a lot of people I know will take a dump...where they sleep). Nevertheless I can tell you quite clearly the reason. It is because sanitation, as much as we have come to expect it as a right to ourselves is actually a privilege reflecting social and financial values. In other words, they piss there because they have NO WHERE ELSE TO GO. I know this because before I leave my house, I always go to the bathroom, simply because I have about 1/3 or less accesses to bathrooms now that I am in a wheelchair than I did as an able body. I, like most, can remember some time when I just HAD to go and convinced some store clerk to let me use the store bathroom. Not an option now for me. And I am guessing not an option for the transients with backpacks or dogs or shopping carts of life goods. And when I am home at night with my sanitation, their options become more limited, particularly as Victoria openly acknowledges that there are far more people on the streets than funded spaces at shelters even during the winter. This is why the “church of the street” St John the Divine opened a temporary shelter in their basement during the winter. The Downtown Victoria Business Association proudly list as example number one in caring, their $5,000 donation toward it; though the fact that the church is several blocks from the downtown and moved the unsheltered homeless into a non-downtown location had nothing to do with it. Of course, the non-downtown neighborhood, immediately created their OWN association and successfully petitioned the shelter to be closed down as soon as spring arrived (to get the homeless out of THEIR area). So that shelter is now gone, the homeless/panhandlers are back downtown and the DVBA is putting up hundreds of signs and threatening to lock people up.

Of course, these signs interest me because I often have heart incidents, I am often required to “loiter” sucking down on portable oxygen; sometimes I “camp” in an area to recover; and to get the oxygen off the back of my chair quickly I often will “deposit chattel” all over the place. I have done this frequently in the library atrium. But, some will say, I have a legitimate need. And I guess people without a home to go to do not? Regardless, I do not go to the “downtown” particularly lower Fort Street unaccompanied. This is not because of an image problem and it is not because of the panhandlers, it is because of the businesses. Lower Fort is the worst rolling pavement in all of downtown Victoria, some businesses are “wheelchair accessible” in name only (rolling up a 25% incline while opening 2 heavy doors TOWARDS me is "accessible?"), while many businesses are not at all. Russell Books, besides cluttering the sidewalk I need to wheel on with “chattel” including stands, book spinners and display tables is also completely wheelchair inaccessible beyond the first three feet (not including the bulk of their business up a narrow staircase). The justification for the elimination of loitering is that these people are stopping customers from doing business. In my case it is the opposite (I have often tried to buy things in downtown locations but given up because of the difficulty involved; does crip money not spend as good?). Today, I had to go to lower Fort Street, it was horrid. However, the one panhandler on the street was also the one and only person who smiled at me on the way down and who, twice, asked distinctly, “Am I okay, do I want some help?” as I struggled to push my chair up the cracked and pitted Tar Pit that passes for sidewalk coming back. I can't say she was the only one to notice; but she was the only one to act.

This is not uncommon, indeed, over 60 year old men panhandling outside stores will force themselves upright, and hobble over to get the door for me when I head toward building they are panhandling outside. And they continue to do it when all I can give them is a smile and a thank you. Why these despised members, who society want to pretend are not part of it, are they ones looking out for me, protecting and ensuring my safety and treating me more as a human and individual than the rest of busy, able bodied and financially secure people walking by me I cannot say. But I am thankful. If I had to guess, it would be because they are on the only ones who actually look and watch the people who pass by, the only ones who notice who is struggling and who is not. In Hebrews 13:2 (see, all the Christian stuff not gone yet) it tells Christians to not neglect showing hospitality, kindness and taking care of strangers; for in doing so some have hosted angels, unaware. If I had to pick the angels, they are the ones sitting on the street, for they watch over me. Why then, do both the Downtown Victoria Business Association and everyone else walk on by?

Wednesday, April 18, 2007

Moving on from hating kittens, disability book reads and my panties

Okay, lets move on from that last blog; I’m not saying it wasn’t a slice of real life (my life), it is just that once you decide that life sucks but maybe you DON’T want to cause yourself excess pain, it is usually too late. It is like when you get dumped and you destroy everything that reminds you of your ex and then the next week you say; “Geee, I really could of used that blender now.....” So yeah, I stood up until I had to lie down with oxygen, I got a fever, the next morning I was delirious but, you know, still had to take Transit to the hospitals for more tests (kinda like the two I have for tomorrow). Feeling crap while doing that wasn’t as empowering as I imagined, maybe because I wasn’t all psycho anymore and muttering things “I hate kittens and butterflies.” So, still funked, but moving on.

I will do some quick reviews here of those who might be interested in disability/wheelchair/identity young adult literature (hey, I didn’t think three months ago I would interested in it either....so keep this bookmarked!). I like Young Adult literature because it basically asks “Who am I?” in every book which is something you ask yourself a lot when you have a disability, along with, “Why are so many people ignorant as they insult/act stupid towards me and then go away feeling good about themselves for talking to ‘that poor girl’?” I just had a Victoria transit driver have his wheelchair safety hook get stuck; he gabs my multi-thousand dollar rigid wheelchair wheels and yanks them back through the metal restrains to pull the hook clear (instead of say....clearing the caught cloth in the safety hook mechanism). Guy has totally wacked my right wheel, looks at me with a grunt of “there ya go honey,” and goes back to his seat, job done, to leave me to wheel off and try and find time to have my wheelchair realigned. THANKS BUDDY!

Okay, back to the YA fiction (most adult books are retrospective: I did this and that after being disabled stories, not, “Oh shit, my life is screwed, now what?”):

My Life as a Body by Norma Klein: Odd because I have bits of every character in the book: tall 6 foot high school girl, Augie, who is self conscious, her best friend who is a lesbian and she is forced to deal with guy fresh to wheelchair. In a very New York/Virginia Woolf writing style Augie falls for Sam and has issues about love and independence and awaking the body sexually for a young intellectual. The author isn’t disabled and as the story progresses this becomes more obvious both characters spend more time dealing with Sam returning to the rich, independent sexually active person than Sam actually in the chair, and the understandings/frustrations being dependant gives him. Well written and engaging but not challenging.

Accidents of Nature by Harriet McBryde Johnson: If I had to recommend one book for everyone to read in order to see the assumptions most disabled people live under, this is it. It is narrated by Jean who has cerebral palsy (CP) and her CP cabin mate Sara at “crip camp” (Camp Courage). Sara is an teen activist who is tired of the crap that AB (able bodies) dump on the disabled; and soon she has the cabin set up very unpolitically correct, but where people are actually happy (for example the OCD/asperger girl gets to do all the cleaning; though the AB’s think she should “equally participate”; but in truth she LIKES cleaning while much of the other stuff she hates). Those who have hidden disorders are the “walkie-talkies” as they can still walk and talk....most of the time. Jean becomes aware how much of her energy and life consists of acting, talking and aligning herself with this idea of “normal” which has no application for her, nor is it a true reflection of who she is (for example when she gets excited, Jean can’t control her limbs and she makes noises; the AB counselors try to get her to control this, Sara tries to get her to be okay with it). Written by woman who attended schools and camps for children with disabilities, she is a lawyer and also holds the record for fifteen years of uninterrupted protesting of the Jerry Lewis Telethon (she has a memoir: To Late to Die Young, referring to how Jerry Lewis always gave her the impression she would die as a sweet child). This teen book took 12 years to get published and is a scathing but very important view at the difference between the forces of acceptance and assimilation in society.

Stoner and Spaz by Ron Koertge: A light read fantastically written about Ben, a kid with CP who has no life except what he watches on the movies and Colleen, the stoner who does drugs, has too much sex which she can’t remember the next day and how they come together (she promises to flash her tits if he does her English paper). She awakens something in Ben, a desire to do movies himself; to reach out and stop waiting for life to reach out to him. Top pick and winner of some awards, I pretty much own this book (I think the library has given up on getting it back). Written by an insider of sorts as his wife works with physically disabled – well portrayed.

Because She’s my Friend by Harriet Sirof: Novel about two teen girls from different backgrounds; Teri a candy stripper in a hospital from a poor extended Italian family and Valerie, with a paralyzed leg who comes from a rich but aloof and divorced family. This book is about the way sudden disabilities throw different people into our lives and friends disappear and suddenly people who weren’t friends before can become very important. Also examines the mental issues around dealing (or sometimes not) with a sudden physical disability. Written by a woman who went through what Valerie did, well told and covering the social aspect of sudden disability, something not often covered.

Boy Proof by Cecil Castellucci: Okay, not actually about a girl with a disability, but rather a girl with a shaved head, several piercing and coloured eye brows who talks to no one and wears clothes including a cloak based on a post-apocalyptic science fiction film. Her name is Victoria but she answers to Egg. She is smart but so alone and odd she is boy proof. When Max arrives in her class, someone as smart as her, and someone who “gets” her, she starts to wonder if maybe if might be worth to try joining the human race. But humans are fraught with emotional risks. While depicting essentially the angst of a rich girl with more opportunities than anyone I have ever known (she has hobby of photography but never pays for her film or developing; her part time job is as a movie extra) – Egg (or Victoria) is still an compelling narrative of the life question: “So what do I do now?” Which in many ways is a sudden-disability question too.

Okay, that’s it. I have to go back into the medical system. As I said yesterday when the tech called my name from the hall while holding holding a big bottle; “This isn’t good sign when I don’t know your name yet but you already have the lube out.” Fifteen minutes later he had his sonogram equipment INSIDE my panties. That sounds erotic...but it isn’t. No, don’t google “Sonogram Panties”; instead go pull up your on-line public library and start reserving some books – or if not that, start recommending some more for me.

Monday, April 16, 2007

Beth's healthy plan: the eve of destruction

I am not a passive person. But many weeks I have been perplexed by one thought; how does a person with body control issues handle a body over which they have little to no control? Perhaps, being ordered to the hospital for another test tomorrow for which the only outcomes are immediate admittance or a negative result made me question who was in control of my limited waking life. Or maybe it was the other tests "urgently" ordered. What was the outcome: was it hope? As sure as night follows days, I can say that as of this minute, I have no hope. What forces me to the hospital is social pressure. I go because I do not know how not to go. And that’s when it came to me. I do not have control over my body, I do not have control over the medical system. Taking a page from society around us, I may no longer be capable of resisting the effects of my own heart; but I can always take control of the path to my own self destruction.

What the medical profession doesn’t like to advertise is that highly focused depressed people, particularly people who can pop in and out of disassociative states of mind, can willing endure far more pain than the average person (when inflicting it on themselves or enduring it for destructive ends). This includes even someone with as low a pain threshold as me. And with the body I have right now, I cannot control feeling good, but just by standing upright and staying conscious for four minutes, I can feel very very bad indeed. Now, try to stay with me; self destruction is a very human thing after all. I recommend listening to Tom Waits’ Come on up to the House a few times to get in the mood. That song happened to be the last song I ever played in a Christian Church; it seemed a good Christian hymn at the time: “Does life seem nasty, brutish and short /Come on up to the house..there's nothin in the world that you can do /you gotta come on up to the house /and you been whipped by the forces that are inside you”


Maybe I was having a few issues with the church about them going to throw me out at the time, hard to say. Anyway I thought it might be good to start testing the limits of this new body state; see what it takes to make it break. Of course, even if I go unconscious, I may not provoke a cardiac collapse. I do seem to be able to absorb a lot of punishment. But a dedicated program should steadily weaken the system. Earnest Becker says that much of what we derive anxiety from is our flight or denial of death. Indeed, collectively, when we put our immortality into a system which we believe will last forever, meeting another who has a different system in which they believe so strongly produces a clash. The hundreds of millions killed in the last century in order to oppose “evil” or fight for God, or fight for “right” shows a natural inclination in humans toward destruction. I am sure there is some connection between me and collective culture. Can't quite pin it down now but I always liked Barry McGuire’s Eve of Destruction (though not the white codpiece look) back in the days when protestors had faces like bricks and sang until the cords on their necks bulged: “hate your next door neighbor but don’t forget to say grace.”


Of course, this little blog piece may be hard to follow. You could say there seems to be a few logical leaps missing (or some freaking logic at all other than: humans destructive; you self destructive). DUH! Did you think self destructive depression makes people brilliant thinkers, nope, just makes them very FOCUSED thinkers.

I always wondered how I was dealing with the stress of all the crap sailing downstream these last few months. I mean, no minimum dose anti-depressant is THAT good. Sure I had my sobbing bits and my crying bits and my laughing bits and my buying weird stuff bits but it never really seemed like I had never really absorbed what was going on. I still don’t think I have. Last night I read two papers and both had at least 2-4 articles about sort of will-to-power, health-to-power and I realized that there won’t ever be an article in the paper about people like me; I have seen two articles in the paper about people with disabilities: one was about a man who willed himself from a spinal cord injury back to walking and running again through will power and determination and the other about a woman in a wheelchair who through will power and determination is getting better and better times as a wheelchair racer. There might be an article about someone in a wheelchair making lots of money too one day. Money, will power and success: the values of our society. Well, I can’t will-to-power getting better. But I can do it in order to get worse. Does that make me a success? Anyway, in keeping with that idea, how about Mad World from Donnie Darko (Don’t have a freaky rabbit telling me what to do yet, but I’ll keep an eye out).
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Anyway, in control or not, I will be in and out of hospital for the next few days.

Sunday, April 15, 2007

Four year anniversary; ongoing tragedy.

I am going to break a general rule about not blogging directly about American Politics even though I am a US citizen in exile (this has less with my last US policy politics blog which got me emails calling me “a nazi” than the general rule that once you told a friend to stop playing Russian Roulette the first 10 times, it seems a bit pointless after that – we all know the outcome). Yet, it is the fourth anniversary of the great adventure into freedom. Haven’t a clue what I am talking about.....neither does Iraq; four years ago we invaded it for its own good.

The BBC compiled the opinions of the press across the Middle East; for me the Pan-Arab AL-QUDS AL-ARABI summed it best: “Today, on the fourth anniversary of the fall of Baghdad, Iraq is experiencing the worst conditions it has ever seen. There is no water, electricity or security, no schools, universities or hospitals. The only things readily available are graves and mortuaries. Iraq today is a republic of real fear, whose people are escaping in hundreds and thousands. It is living through the worst kind of torture and death.”

Of course, a few days ago, the Defence Department announced that tours of duty for those in Iraq had been extended from 12 to 15 months. Along with this was that the DoD was looking for a general to oversee the war operations, a “war tsar” – apparently this is seen as a poisoned chalice as the three generals approached have all turned it down. So, not a lot of happy US troops there either.

To get a sense of places where the troops and the civilian population meet and what passes for logic in Iraq, the ACLU, through the freedom of information act, got 496 claims to the military for compensation: the majority for Iraq from 2003 to 2006. Relatives killed by Coalition soldiers can submit compensation claims. There are two types of pay outs – those admitting negligence and those of “compassion” which is capped at $2,500. The logic is odd and somewhat surreal as the BBC accounts: “ Another, dating from February 2006, describes how a fisherman in Tikrit was shot as he reached down to switch off the engine of his boat. He had been shouting "fish, fish" and pointing to his catch. The US Army refused to compensate his family for his death, ruling that it was the result of combat activity, but paid $3,500 for the loss of his boat - which drifted off - net and mobile phone.”

If you want to test how high your irony/Catch 22 meter can go, I recommend reading the short summary of each claim here. There is the claim denied because the person submitting did not use a new form, claim denied due to bad grammar, indicating a “false claim”, claim denied marked both “submitted on time” and denied for “not submitted in a timely manner”, man killed sleeping on roof (denied: combat exception), family killed in car at checkpoint, evidence later that neither cones nor signs were out to indicate it was a checkpoint (denied: combat exception), munitions blown up without checking the area killing a man tending his sheep nearby (denied: the disposal of munitions is part of combat), a US tank went into the oncoming lane of traffic and ran over a car, crushing the driver inside (Denied: no evidence it was a US tank.....I’m sorry, how could a claimant falsify getting a car driven over by a TANK? Who else has TANKS?); driver of car shot dead by contractors guarding convoy (Denied: contracted personnel are not US military). Man driving KIA minibus was pushed from behind by a US convoy into opposing lane where he was struck by an oncoming US convoy, flipping the minibus and later killing him ($2,500 compensation for the mini-bus). Child going to school held up a school bag and was shot by sniper at military base (Denied: Military exception, sniper thought it was “dangerous object”), Taxi driver and his wife hit in their taxi by a HumVee; US soldiers stopped, took photos and apologized (Claim denied: lack of evidence) – this letter denying the claim finishes with “I wish you well in a Free Iraq.”

Only 15% of the claims admit any negligence, the majority are rejected. It is good to see that government assistance forms are sort of universal; massive denial by a gigantic organization that leaves you feeling helpless and frustrated because no one seems capable of caring. “I wish you well in a Free Iraq”: I have a feeling a sign with that on it, being set on fire as the last of the Coalition Personnel flee Iraq ala the Vietnam helicopter scenes in somewhere in the future. The whole situation now is a house reconstruction project gone bad – can’t leave, can’t figure out how to succeed and so it goes and on and on. Wish I had some super duper advice other than, “Don’t invade another country to try and prove something to your father.” But a bit late for that now, I guess. Still, since the US remembers the tragedies like 9/11, I thought it fitting to remember another ongoing tragedy, one which will kill more US citizens than 9/11, leave tens of thousands of US citizens disabled, and for Iraqi citizens, those not killed accidentally for “Free Iraq” in a worse state now than under a dictatorship. Not really a good advert, I guess. But up there with denying a squished car with giant tread marks wasn’t actually run over by a tank.

Friday, April 13, 2007

A wheelchair accident: or how TubThumping lost me my virginity

Yesterday, I lost my wheelchair virginity, only yards from the front door of my apartment too. No, I wasn’t having sex in a public place again. I mean I got thrown from my chair. Actually spectacularly thrown out of my chair by the laws of physics (I think your “first accident” in a wheelchair only counts if you are “in control” instead of the two times this week I have nearly been run over by cars leaving parking lots – “hello, look down here you stupid SUV!”).

I blame the entire episode on the song, TubThumping by Chumbawamba. That and everyone’s concern that I wouldn’t do something stupid while Linda was in Vancouver for three days (Just because I wheeled up this gigantic hill on Tuesday and was having a problem breathing later doesn’t mean I do that EVERY day – I was too weak to do it again on Wednesday for example). See, everyone including myself was a little worried that I would pass out, or do something stupid or have a heart attack so I carried this phone with me everywhere. But by Thursday that got boring and I kept listening to the song, TubThumping, “I get knocked down but I get up again, you ain’t never going to keep me down.” And was like, “Yeah, that’s me!” (I ignore all that stuff about drinking) Knock me down, I get up again. So I started thinking about that time I went to library over the big hill 12 days ago and afterward I was tired I had big neurological problems and thought: “I wonder if it easier in my new rigid crappy R2 wheelchair” So you can guess what happened next. (here’s the TubThumping video which is full of drag kings and drag queens – never noticed that as a kid)


So there is break of sunshine and I am rolling toward the curb cuts on our intersection to start up the big two block hill leading up to the library. With my newish rented rigid, the footplate is higher so a lot of the curb cuts I would hit before I roll right over now. I thought the one on the other side of the road was one of those. So I fly over the first curb cut, just getting out of the apartment, full of energy and pumping like crazy gathering energy for this hill and I hit the curb cut on the opposite side of the road. Chair stops dead. I however go flying, and somehow land in a perfect “doggie” position on my gloved hands and knees. The wheelchair, now relieved of my weight and with lots of potential energy, flips up from the back and flies upside down through the air. I have just landed and am saying something that sounds a lot like “Shit!” when a half second later, the chair arrives, landing on top of me, and we both crash sideways.

I must have lost a little bit of time because by the time I am “with it” there are three people there, one who apparently had time to park their car and come over. They have put my chair upright, and put the bum cushion back on (who know where that went) and I am saying, “I still have limited mobility” – meaning, I can move my legs generally, when I am not in shock so please don’t beat me up if you see them moving. Well, actually I am a little too shocky to get back up in the chair; I just can’t make those last five inches up after a few tries two of the people help me in. In a odd tradition of being in pain, I break into spontaneous laughter (really, the more pain, the more I laugh). I thank everyone, I am mortified and full of adrenaline and thus pump to the top of the hill with one short break. Because apparently one stupid thing needs to be followed by another.

I forget that the next block that looks level is somewhat uphill too and I am struggling along that as this mother is actually grabbing her child's hand and RUNNING away from me. I know my rigid makes as much noise as a bad grocery cart on those pebbly pavements but come on – I’m not a monster? Anyway, by the time I get to the library, I am so tired I can't use my fingers properly and have to lift books with both mitts. (Later when I tell Linda on the phone she says, that she would have used the disability pass credits to get a taxi home – I tell her that makes sense, I don’t tell her that the thought never even entered my mind.) I have to go up another block and a half to go back home, and I somehow make it and getting back I stop and talk to one of the women in the building who actually asks what has happened to me. She actually “gets it” and want to know what counseling I am getting to deal with this life change. Haha, none. So I pop a wheelie to show her my new skills and control – only instead of holding the wheelie, I start falling over backwards – just like I told my physiotherapist I would never do when I rejected the “training bar” on the back to stop you from going over backwards. Luckily the woman catches the back of my head just before it was going to slam into the ground. I think maybe she is not quite so impressed with my skills.

By the time I call Linda in a hour my entire neural system seems to be in a puddle on the floor since it takes me a long time to type her a note telling her my “adventure” because I can’t hit the right keys and then on the phone, I am slurring so badly she can’t understand what I am saying. And she’s like, “Do you want to hang up?” and I’m going, “Naaaaaaaa, Haaaaaaaarrrr uuuuuuuuuuu” Which is how, “No! So how are you?” comes out. Actually after about five minutes she picks up what I am saying pretty well except for “I love you” which she thinks is “I gotta go” Sigh! I expected her to yell at me....a lot. But she just sort of laughed at me and wasn’t worried at all. I think that if I didn’t do something incredibly stupid to “prove” whatever a couple times a week she would get worried and think I was depressed or something. Anyway, it is not often you leave in a wheelchair and come back with scuff marks on your knees.

Am I in pain today.....oh yeah! As one of the people putting me back in the chair said, “doesn’t this have a seat belt?” Hmmm, well not sure if I wanted to do a fast face plant with a seatbelt or the slow sailing through the air. I have to say, having the wheelchair land on me AFTER I thought I had finally made touchdown was a bit of insult to injury. So, not really moving a lot today.

As for tomorrow, well I keep hearing something in my head, how does it go? “I get knocked down, but I get up again, you ain’t never going to keep me down!”

Wednesday, April 11, 2007

Which state punishes gender varient children, adults and made gay flirting illegal: Ohio

If you display gender variance as a child the state will, through its actions, sanction the use of emotional, verbal and up to physical abuse. Is this Iran? No, it is the US; it is OHIO. For some reason, if you are a gay, transgendered or transsexual child in Ohio who shows gender variance from traditional male expectations; it is not the community which attacks you but the very state organizations set up to protect you like the courts and the social services; in some cases making you defacto a “non-human” or mentally ill.

Judge Waite in Ohio ruled
two weeks ago in the custody case of Smith v. Smith. The mother, V.S. and the father, K.S. married and had two boys starting in 1994 before divorcing in 2001 when the oldest child was between 6-7. The mother, V.S., states the oldest child was already displaying gender variant behavior while in the 2007 case the father says he doesn’t remember any. The mother had custody of the two children and except for a few visits the father dropped out of the children’s lives. Meanwhile the older child continued in the desire to dress as a female and be called by a female name and the mother, after some research decided the child was a transsexual. Over time, the child used the name and was called Christine by the mother and others and in 2004, the mother prepared to move so that Christine could register in new school as a female. Nothing particularly shocking in Christine’s behaviour, which seemed to be a sincere desire, for at least part of the time, so be seen and treated as female. However, when the father found out that his SON was going to be registered in a school under the name Christine, he sued for custody of the children on the basis that the mother’s acceptance of her son as “Christine” was harming the child.

The one thing I will say about the mother is this: the internet is not the same as getting a specialist consult. The mother never took her son/Christine to a gender identity specialist. If she had, the case would have gone nowhere, but because she hadn’t, it was reopened. The problem was that Ohio has very little law on transsexuality or gender identity or custody (and none of it good), so the judge, on the strange presumption that unlike every other child on earth, a transsexual child cannot know their own gender until after puberty (that whole gender/sexuality mix-up thing), the judge asked for experts to examine the child and put an interim order for the mother NOT to allow the child to be feminine. The father put the mother under survelliance until he caught them going to a swim party in a girl’s swimsuit and introduced as Christine. The father, by the evidence shown, is a class one jerk whose only concern seems not for the welfare or development of the children (where was he all those years?) but rather that his BOY not act “girly”; which apparently is worth any cost to him (time with the kids....no way; money to stop his child wanting to be called Christine; that’s why they made credit cards!).

The experts opinions came back conflicting (the father’s was
challenged because some of his “evidence” were bible verses and religious overtones) so the judge ordered a “neutral” court expert. Then, in his ruling the Judge went against the recommendation of his expert (who had said that expression of Christine was normal and should be allowed to develop), and decided, because the mother could not be trusted to completely squash all feminine aspects of her child, to give full and sole custody to the father (on the basis that child not reaching puberty must be “taught” appropriate gender expression). So the 11 and now 12 year old child is placed in the hands of a man whose sole purpose for the last three years has been to get his hands on him in order to make sure he acts in a way the father has decided his BOY should act. So whether he is gay, transvestite, transgender, transsexual – he is complete and totally screwed – since the implication that the child can and should be forcibly stopped goes with this change of custody. This Judge’s decision, with its precident in decisions of custody of children and their mental health either states or implies that gender variant behavior should not be allowed until after puberty.

This demonstrates that in seven years, nothing much has changed in Ohio from 2000 with the
case of Zachary Lipscomb. Back in 2000, with a united family, both parents agreed it would be best to sent their child to school under her preferred name, Aurora, and contacted the school to help them do so. The school contacted social services; and social services, hearing that two parents were trying to enroll their BOY child as Aurora determined that was not “proper care” and removed custody of the child to the state (where Aurora was sent to gender “reidentification” training). In this case, two parents, who saw their child from the age of two going around telling everyone she was a girl and tried to help her, lost their child to a state that saw their treatment as evidence of unfit parenting (after several appeals, the Liscombs lost custody permanently, and later divorced).

By now, many Ohio residents may be saying, that’s not fair, we aren’t as bigoted as all that. Well, maybe that’s true, maybe many other states use the judicial system and social services to put non-gender conforming children deliberately in emotionally, verbally and likely physically abuse situations. Situations in which, knowing the statistics of suicides and suicide attempts of gay or perceived gay or gender variant behavior children in schools is sort of the state saying; “Hey, we’ll force you to ACT like “boys should” now even though we know that you have about a 50% chance of killing or becoming homeless by 18. But remember, this is for your own good!”

Of course, it might be hard to argue that for Ohio when last
week, a off duty firefighter in a wig and bikini, who says he was going to a gay bar for a female imitator contest was picked up by the police because of 911 calls (“There is a non-gender conforming male, please come immediately!”); he was drunk. Was the main charge about his driving drunk? It was not. The main charge was being dressed as a female in a public park. The Ohio judge has ordered him BANNED from all parks in the two nearest townships AND a mandatory mental evaluation (Drag Queens, Drag Kings, anyone a little effeminate or butch might really want to take note of this state, and AVOID it!) because I guess putting on a wig and trying to look like Madonna is just “plumb crazy.”

Clark County Ohio is also the
only place in the US where marriage applicant must swear they are not a transsexual in order to get a marriage license. Why? Because the previous Clark County Probate Judge, David Mattas, thought it should be written in after reading a ruling from 20 years ago by Stark County Judge which denied a transsexual the right to marry a non-transsexual since he decided chromosomes not genitalia, legally changed birth certificates or any thing else was the deciding faction (he had obviously never heard of intersex conditions; 47 states currently allow transsexuals to change their birth certificates, Ohio does not). Ironically, in Stark county where the decision was made, you do not have to swear you are not a transsexual in order to marry, but the Judge in Clark county thought it such a great idea, he decided you did in his county. If the people of Ohio think that this makes their legal system sound like a bunch of old transphobic and homophobic men who know more about the book of Leviticus than 20th or 21st century medicine, I would say you are absolutely right! But then, maybe you should of thought about that before introducing Ohio house bill 515 last year to try and prohibit LGBT people from adopting or even fostering children. By the way Ohio, out of 50 states was ranked 50th in the HRC state ranking last year (and as little as 4-5 years ago it was ILLEGAL in Ohio to even flirt with someone of the same sex – nope, not illegal to have gay sex, illegal to FLIRT).

As one law blogger
noted, even when Judges try to do the right thing (in Ohio) the ignorance, particularly regarding non-traditional gender behavior is so severe that no one seems to be providing the court or social worker system with information; nor do they seem to really want it (still got the bible to rely on I guess).

Anyway, there is not a happy ending for Christine, as there wasn’t for Aurora. I think the message is, if you are male, gay, a child and don’t fit gender norms or if you are gender variant in ANY way (including going to a public park on your way to a female imitator contest), then get the hell out of Ohio!

Sunday, April 08, 2007

Crip Lesbian Lolita Gothic: or "How my clothes control people."

There is a miracle recipe called Crip Gothic; start with your regular goth, add in two tablespoons of taboo lesbian goth, a pinch of lolita goth, with a bit of slut goth thrown in for taste: and your Crip Goth is ready to serve. I believe that not being able to stand does not impede your avenue to a fashion victory but rather can create it. Ever fantasized about a skirt that looks great but is too tight to walk in, or rides up as you sit down; with Crip wheelchair gothic, this problem is solved (all the legs gotta do is just sit there and look GOOD).

Yesterday, I was repeatedly stopped and asked about my shoes. That’s right, I, the person in the wheelchair people usually cross the road to avoid, or where people, if they notice me at all stare at the CHAIR were coming up to me and saying; “Great shoes, I guess you can’t buy them in Victoria.” This happened about five times in one afternoon. I had bought them a couple hours before and I have to say, any shoe that makes people think, “Gee, I really hope that girl in the wheelchair doesn’t spit, flail or drool on me, but I NEED to know where she got those shoes” bad enough to actually come up and talk to me is a fashion victory. Basically, I have dramatically changed my look in order to control people’s minds; so when I make people stop staring at the damn chair and walking away, but instead become drawn toward me into my cool fashion vortex: mission accomplished.

We had actually bought the shoes by accident since we were looking for a dance shop downtown in a little shopping arcade to pick up some ballet slippers (I’ll explain some other time). Shop was closed but this shoe store called Baggin’s was open and selling a lot of alternative shoes from Converse and Puma. Linda looks at a shoe, it is about $160. I do the “let blow” eye roll at her when she picks up these black and red skull converse high tops and says, “these look good.” Well, at that second this kinda butchy cute looking woman (who I am hoping is lesbian) asks if she can help. She has a tattoo of a tree on the inside of her arm. Cute and tattoo. “Yes,” I suddenly say to her, “Do you have these in a size 12?”

She goes and gets women’s size 12. They are a little tight, so she gets women’s size 13 and laces me into them. I am trying to impress her verbally, probably some athletic conversation because I remember at some point saying, “You probably have a great body for ballet.” So yes, I am flirting, making the moves like mad. That probably would have gone smoother if I wasn’t having a neurological meltdown at the time. I was stuttering and slurring so much she probably needed a splash guard. But on the other hand, since my hands were trembling so much I got to have her fit the shoes to my feet and lace me up (which can be a very erotic experience). They were having a sale on; 20-50% off, but these shoes weren’t on sale so she offered me 15% off. Wow, and they were like only $64 Canadian to begin with (that’s about $45 US or 30 pounds UK). So I slurred yes and we agreed they made me so cool, I would wear them out of the store, and she boxed my puma’s and I kept making the verbal moves; I am persistent if nothing else. Hard to score or even get a date when MY PARTNER was pushing the chair since I was too weak now to move it, and I had a little head tic going, while I am trying to smile and say something witty without a stutter.

We leave the shop, I need the oxygen for about 15 minutes and for some reason Linda doesn’t use this time to “accidentally” bounce my head off the wall next to me. Anyway, alas girl with the cool tree tattoo, our affair was never to be. She did however tell us that the store specialized in hard to find Converse so if you want people flocking to admire your footwear, you can order the same shoes from their webpage.

You see, when faced with adversity, I lie awake at night, I research and I come up with solutions. But because of those early years being raised by wolves along with the number of times I suffered concussions while doing the demolition derby circuit as “Liz the Debilitator!” sometime the ideas I come up with are...different (brainy, yes but...different). Problem: I am in a wheelchair and people are ignoring me and I feel not so good about myself. Solution: Throw out the rulebook and make you and those around you re-envision you by a dramatic fashion change. So instead of hip hugging jeans and tight fitting t-shirts that both adhere to the lesbian code (Clothing rule number 4: Functional, functional, functional!) and make others see my muscles move as I walk on by; I now have Wheelchair athlete look. I have the wicking top for runners, the tall junior athletic bottoms (you know, the jogging pants for those who simply want to look good in jogging pants and never actually run: hey, now I qualify!), and the Cannondale special gloves I like to call “my brakes.” That’s my training outfit (training for what? That’s a secret).

Janet, my physiotherapist who fitted me for my wheelchair told me she had fitted a goth girl. Goth! Yes, I have always been goth, but never really needed to look the part (I’ve told Linda to sell my body to the university for $600 when I die, so I am pretty sure my goth creds are intact). But now…now I need to look the part! I start searching the net. I start ordering in skirts and shoes, boots and corsets, and stuff from Hot Topic, the alternative store from the US. I call up Janet, first because my insurance is backed up and I need to dump the “Tank-lite” in the pic for a rigid chair till my new chair gets approved. She is going to look in “the bone yard.” I also ask her about her Goth chair fitting and if the goth girl had stomper boots, or what type of gothic wear she had, like how much crinoline do those clothing guards really stop from being sucked into the wheels. Also, how have her other female clients worn high heels with the footplate?

“None!” She shouts down the phone at me (Janet can be very excitable). Then after she calms down, “How high a heel are we talking about, because I might be able to temporarily lower the back of the footplate.”

“Um.....I was kinda getting a 5 inch Polyurethane shiny stomper club boot….”

“Five inches!” She screams into the phone.

“It’s knee high and has buckles all up the side. Besides, two of those inches are platformed....”

There is silence on the other end of the phone. She sometimes holds the phone away from here so I won’t hear her laughing at me.

“Send me a picture of the boots,” she says and gives me her email (I haven’t heard back), “My clients don’t wear high heels because they don’t wear dresses, it is hard for transfer (transferring to and from the chair)”.

“Oh, I wasn’t going to wear a dress,” I tell her, “That rides up too much when wheeling, I was thinking of a PVC skirt with a cincher.....”

There is silence as she hold the phone away.

“....or corsets” I finish.

Eventually she says, “You always make me laugh.” So I explain my new sexy look and tell her how I have already been propositioned on Douglas Street while waiting for the bus, just not by anyone sober yet.

“It's good to know you have standards; holding out for sobriety and money," she is killing herself laughing, I am not sure if she thinks I am joking or knows I am not, "I am sure your parents are proud."

Anyway, while most of the corsets and PVC skirts and stuff are still a few weeks away by mail order, two boxes have come in from Hot Topic – mostly accessories like hairbands, earrings, arm warmers, some Trick Fairies shirts and stockings....with bows! With our few local purchases and new accessories Linda and I figured we had enough to try for a few Crip Goth outfits. The first is your basic “lady of night” look with a bit of class and maybe a lingering “vulnerability combined with substance abuse” aura. The fishnet arm-warmers and the scarlet bustier are the subtle signs that either say; “Give me money” or “Talk to me, I’ve done/seen interesting things and don’t give a damn what people think of me.” By the way, I am sitting on my temporary rigid (can’t fold it up) wheelchair I call RC1 (for CRAP rigid chair 1 – it is an A4 which got a grand 2.4 out of 5 rating from users and therapists – an “ultralight” but weights 28 pounds)

Okay, now we have our actual Crip Goth look, from the skull headband and black angel wing earrings to the “wet look” PVC gauntlets, black choker and a bit of Lolita goth thrown in with my stocking and bows, a bit of very pale skin and a short skirt saying; yes, I am a poor innocent girl lost in these woods....can you show me the way to grandma’s? While the tattoo should tell you, uh, maybe not quite as innocent as she looks. I also like the gauntlets as they give it a touch of lesbian Goth with weird images of the other adventures of Xena: the Kinky Lesbian Princess Warrior. Will Linda let me leave the house this way? Who do you think is taking the picture? Sadly, on our trip around town yesterday, we checked in at the only gay/lesbian club/bar in town and found....20 steps leading straight down. So much for getting hot lesbians rubbing up against my chair to dance with me. Nearby there is an “alternative clothing” store, with some interesting short skirts. I ask the girl there with these luminous “take her home and give her a kitty-cat bed in the corner” eyes if they sell Lip Service clothing.

“Oh!” she says with a sort of shocked sexual surprise, “No, WE don’t, there was a store that sold some but it...uh....went out of business, there really aren’t enough.....uh....people in this city to buy....uh.....THOSE clothes.” (I have a...uh....LOT of Lip Service clothes coming by mail order – the girl later tells me she actually DID buy a Lip Service PVC nurses outfit).

I figured since she actually knew the brand she was a clubber so asked her, “So, in this town, how many clubs are wheelchair accessable?” Since downtown each block has about two club entrances.

I can see her mind going through the clubs also as she goes, “Oh....Oh!” then as she thinks of more clubs, “Oh! OH!” (I am starting to feel we are having an intimate moment). “I never thought!” She finally says, “there’s only Evolution!”

Great, so much for plan number 2: moving from the lesbian/gay hangouts to getting the straights all hot and bothered. Somehow spending two hours dressing up to go and get some fries at Denny’s in my Crip Goth/kink wear doesn’t seem so fun. Anyway, another problem; I will simply have to find another solution.

Meanwhile I have my day look; an average wheeling around town crip goth look here with my skull arm-warmers from Tripp NYC, Trick Fairy hoodie, matching violet skull headband, and of course, the red skull and black converse (which I also will be able to wear with the Victorian red and black corset coming in I think – a nice fusion of new and old styles). Luckily they also match my hair. Which is getting a lot of comments, especially from guys; so never say guys don’t notice anything because when you dye your head a red that doesn’t really appear in nature, they DO notice. Or maybe it is because my hair is the same colour as popular lacquers which is what guys are noticing: “Gee, that would be the perfect colour for my deck coating.”

That’s it so far. Sadly since yesterday coming home it has rained pretty steady and wearing all tantalizing Lolita crip goth stuff in the rain just makes you look sad and miserable. And since I am actually not a teenager anymore, I don’t need to look like that because I can stay home and drink red wine and even feel sad or miserable without being either dripping wet or having really slouched shoulders or both.

Of course now that my pale skin has been shown in a SKIRT and thigh high’s with BOWS – the lesbian conclave has decided that I no longer fall under the femme category (too much mascara?). Basically, I have failed the functional clothes test, and apparently there isn't a lolita femme catagory (well, until I made it I guess). But I don’t care, I am having fun. You know that groove, watching people older than you try to shield the children’s eyes, watching the people younger than you smile or shake their heads, see your contemporaries take two steps back, that kind of fun. Oh yeah, got into your head for a second didn’t I? Oh wow, I love that feeling.


(Linda says I needed to add this extra bit which explains that I can use the world "Crip" because I am disabled and in a wheelchair so it is like an ironic self reference: "Look at me, the plucky crip girl" while if able bodied people used the word to talk about me it would be offensive; kinda like how lesbians use the word "dyke" a lot but I don't know any lesbian who doesn't find someone yelling "Dyke!" at them from a car offensive. Please note that I only refer to myself; A disscussion on the usage of the term at Crip College.)

Wednesday, April 04, 2007

Patient from hell? Insecure and confused doctors? Or yes to both?

Doctors, doctors, doctors; in life you can’t avoid them, but if they are incompetent or just hung over they can kill you. This was why I switched doctors. My previous doctor, Dr. W, delayed over a month after I started passing out to do a basic blood test. Then I found out that he had previously almost killed two other patients. One of those patients was my father. See, with Dr. W. a lot of people like him because you say, “gee, I’d like a bit of valium to help me sleep” and he gives you a prescription for 100 (a kind of “please don’t come too often” message). I was sort of appalled the day after I asked him NOT to give me a large prescription he gave me a prescription for 100 extra strong painkillers AND 90 valium (this to a person he knows has tried to kill herself twice with pills – of course in the UK, I would get like a dozen pills, so trying to overdose took way too much planning and became kinda pathetic with 12 valium, 8 painkillers, some vitamin E, some children's cold syrup, etc, so as yet, not successful. But with 190 pills? Bingo! P.S. - much better now.)

The problem with Dr. W. is that he would say stuff like, “You should really get a test for xxxxxx” but then he would never order it, or the next time, or the next time; he just kept plum forgetting, no matter how jovial and jokey he was. And his jovial demeanor fell off the day he got the blood tests back and asked me “What did you do when you first passed out.”

“I came to you.” I told him.

“And the next time?”

“I also came to you, and then again and then four weeks later YOU decided it was time to get some blood taken.”

He turned with a bit of snarl, “I am getting real sick of your attitude.”

My father, a couple years previously, had kept coming to him the same way saying, “I have pain in my side.” Now, my father has very high pain threshold; even as an adult trying to give him a back massage was pointless as I would be almost stabbing him with my fingers and he would say, “Are you going to start?” So for my father to admit he felt pain at all was unusual. I was in the UK and become very concerned as time went on and on and nothing was done, I asked/begged him to go in and REALLY explain that he was in pain (still driving transit buses eight hours a day). Dr. W. gave him some pain killers I think which worked not so great. One of the times he went in to say, “I really am in pain!” a locum (temporary doctor) was there instead of Dr. W. The locum ordered a series of tests. When the test came back, my father, who was driving, was contacted by his supervisor by the doctor's office to proceed, with his bus, to the hospital where an emergency team was standing by because an internal organ (I believe his gall bladder) was rupturing as it had been infected for months. The emergency team took him right into surgery. They were surprised as he stopped the bus told his passengers another driver would arrive and walked over to them (in their experience someone in his condition would be in so much pain being able to move at all should be nearly impossible).

So as Beth slides into rapidly declining heart and life functions (with a structurally sound heart), was this the man I trusted my life with? No.

I found a sports doctor who was interested, Dr. M. Only she didn’t talk a lot (like a few dozen words a 15 minute visit). But she got me an appointment (in two months) with an internal medicine internist. Then she seemed to just stop. I would ask for certain tests; she would write it down, nothing would happen. Then in the visits she would say things that were a little disconcerting like looking at the test results and picking up the Holter Monitor result and saying, “Oh, well, I can’t understand these result sheets.” (and I’m thinking, “Well, pass it over and I’ll go over it with you.”). After a conversation with her Monday and this morning she is firmly determined to NOT collect any more tests or data on the heart or thyroid on the basis that “the specialists will do that” even though, I do not, as yet, have an appointment even months away with a heart specialist. Plus, when I give her information, she has stated things like, “You can’t know that.” when I told her my heart aches at the end of the day if I don’t get enough rest (like a sore muscle). “Okay,” I said, “Something right here hurts at night when I go to bed and hurts more during arrhythmias and in the morning I don’t feel it aching.” So, not collecting “hard” data through scientific tests, nor is she collecting data from the subject.

What is she doing? She is focused on “other issues” specifically whether I could have malaria or if I am suffering from heavy metal poisoning. She seems convinced that I take pills in secret and often asks me every time I come what pills I take (I have and only ever take daily: 1 Echinacea to ward off colds, 1 Acidophilus to aid digestion, 1 birth control pill for hormone regularity and a ½ of the minimum dose of the NRI antidepressant Reboxetine which I have been on for 4 years or so from the UK). She has decided that Reboxetine must be poisoning me. This seems an odd choice. I have no job. I have no money. I have no mobility. I fall down multiple times a day. I pass out a few times too. Because of that I cannot drive, I cannot go places or exercise in a pool unaccompanied. I have no prognoses, I am slowly continuing to degenerate. I am in a wheelchair. This has all occurred in a matter of 10 weeks or so. Normally, would this be the time a doctor would be PRESCRIBING anti-anxiety and anti-depressants or the time to TAKE THEM AWAY?

Additionally she has taken away the valium which I use once or twice a week if I wake up and can’t sleep (since if I don’t sleep 8-9 hours overnight, I can’t get out of bed for more than an hour or so) and replaced them with an anti-anxiety medication and an anti-depressant sleep medication. Both of these have as their most common symptoms: dizziness, nausea, excessive sleep, fatigue, muscle tremors. These are my symptoms without pills (or on pills that have NO side effects). So, if I take the pills and I am dizzy a lot, does that mean I am getting worse medically or “just a side effect” or rather – why would anyone prescribe multiple pills which have common side effects which mask or replicate the problem you are trying to detect (which is why I have touched neither pills)? She did offer an anti-depressant which is contraindicated for anyone with a heart condition specifically arrhythmias. This drug (Maprotiline) in control groups, 74% of patients have side effects (my drug 4%) of which the main ones are: Dizziness, drowsiness, fatigue, Hypotension, tachycardia, other arrhythmias. Does that sound familiar to you, because it does to me. Forget the heavy metal toxicity theory and someone find out if anyone has been slipping me Maprotiline because that covers at least 80% of my problems (and is yet the only thing I found which creates the “mystery three heart problems” I have, Hypotension (you pass out because your pressure drops), Tachycardia (your heart races too fast) and other arrhythmias (SVT’s and SVE’s please raise your hand!).

So tremendous stress, removal of the “safe” anti-depressant and Linda is leaving next week to fly off to do training for the government leaving me to crawl around in the house as best I can. Now, I have to ask, does that set up sound like the doctor’s creed of “Do no harm” or rather what I will ask next time I see Dr. M. (while Linda is away); “What is going through your head? What is your plan....is there a plan?”

To put it bluntly, if I wanted to be in human medical experiments I would have signed up so I could have been paid. But, I guess you get what you pay for (up here, nothing). What I don’t understand is why there isn’t a doctor rating system like there is the professor rating system so we could check our GP and see how competent/incompetent are they? What percentage of their patients do they kill? And special markers if they “don’t believe” in things like people having medication for mental health (who considering someone still kills themselves every few minutes in the US, and I see those as preventable deaths, I place those views heavily in the “idiot not doctor” category). Don’t get me wrong, I went to a doctor who tried to give me Prozac for everything, including one time when I had a cold and a cough – prescription: prozac (“probably came on due to stress”). But when I was in my early 20’s I was diagnosed with bipolar disorder, OCD, anxiety, anorexia and psychotic breaks. Currently I take ½ of the minimum dose of a single NRI anti-depressant. Do I sound like a person who is “addicted to being mentally ill” or a person who has strived for a balance in which there are ups and downs but a minimal guardrail to prevent thing like say: multiple weeks of reoccurring suicidal thoughts?

Sorry to dump my garbage on you but I have to wonder if I am the only one, to find, in times of great distress, when not dealing with the common cold or bad PMS, to find the GP, the person we expect to either know something, know someone who knows something or has the ability to research something (they did go to a school for many years learning this right?), completely out to lunch? Or worse, finding that the worse you get, the more perplexing you get, the more hostile they get. My therapist (yup, got one of those too, that’s how I keep my meds so low), says that first, I tend to be “very intense” which can be threatening and second, that my condition, in its complexity, threatens the very self-image of doctors: that they know what is going on. So the more complex and difficult the progression of my illness/illnesses, the more they may want to dump this on someone else’s lap, and if they can’t dump it on another doctor’s it is “wait for the specialist, they will deal with it, goodbye, please don’t call back again soon.” I know I may seem very critical and part of that is the frustration of constant pain and being on oxygen and crap like that but come on......malaria!?

Anyway, I don’t expect to be blogging any more about what is going on with me and the medical system because......nothing will be happening for several months (though my doctor did say this morning I should go to emergency if there was a problem. “And have them transfer the data to you?” I asked. “No no!” she said quickly, “The ER doctors will look and make the decisions”). So onward and upward to the next blogs about fashion and fencing and feminism and I’ve run out of f-words, oh there’s one, and fumbling-towards-ecstasy (I’m trying to cut down on swearing), and maybe some fun (but also likely fear and some feeling funky).

Monday, April 02, 2007

Monday PVC kinky corsets? Welcome to "screwed up girl town!"

Oh darn, Monday again, eh? Normally this is where I would show you lots of scantily clad goth/kink girls along with a few nudie pic of girls posing with bats and gothic castles. That is because it allows me to talk about all the great clothes I am buying (think corsets, think kinky, think weird knee high boots, think "wet look" pvc, think plaid skirts!) and it gets you in a lot of trouble at work when your boss walks by and think you are surfing porn and you have to convince her/him that I am supposedly a respected writer.

Alas, the problem is that I spend most of Sunday on Oxygen playing the Yes/No “go to the hospital game” and Monday and Tuesday I am deep in medical territory (where the only person who has to be on time is me it seems). I am getting some test results back Monday but I can say right now that the results are bad. Why? If there was some meds to help me, they would have prescribed them as soon as they found out. That leaves “We’ve found nothing, on to the next test to see if you THIS rare condition” or “We found something; I hope you haven’t locked into a 1 year car contract recently.” Fun, eh?

Instead I will leave you with a few videos to amuse you until I can return to tear up some more sacred texts/world opinions/proper grammar. The first is from Air, which is listed as the “saddest anime ever made.” But strangely is put to an “uplifting” song. I have watched this video about 400 times this last six weeks. This does not mean I am about to rent “Pollyanna” or start talking about “positive thoughts making smiles.” Get a grip! Plot is puppeteer guy comes to town which should be named “Screwed up girl town” since it is inhabited with MANY screwed up girls. There is the blue haired girl who has a ribbon on her wrist which she believes if she keeps it on will grant her magic; actually her mother put it on her to stop her self harming (That bandage on my arm this week put there by Linda…don’t know what you are talking about). There is quiet girl with dead sister (don’t go there), and then the girl with blonde hair who is slowly wasting away and lives life alone because anyone who gets close to her starts to suffer the physical pain she does (Gee…this anime really speaks to me somehow). Her mother and the guy try to get close and suffer consequences. Linda watched the last few episodes and said she could relate to mother trying to be calm and dealing with pain and situations and flipping out as soon as she leaves the room. She related to the pain of watching someone you love suffer (blonde hair girl is transferred to a wheelchair toward the end of the series). Oh and did I mention it has a GIRL WITH WINGS. Sorry, that’s just one of my “things”. Anyway, I hope you can find some solace in it as I did/do – though maybe more in a normal and not so screwed up “Oh, I’ve done that too” sort of way (ask me about my wings sometime).


Okay, then there is the video I watch to “perk me up,” like when I need to have fantasies about getting back into my epee uniform and wheeling down to the Y and challenging everyone there, regardless of the fact that I can’t back up or advance (just MORE of a challenge, no?). Or to get me through a tough series of heart “attacks” (sharp double or erratic beats at very high speeds that last a few seconds but can come in a series which makes your body shake back and forth with some amount of screams of pain). So I watch “Listen to your Heart” – they took my favorite one off but this has version has a lot of good elements (watch it now before YouTube strikes again!). Girls kissing girls: check; naked girls kissing girls; double check: girls with eye patches and guns; check: cool lesbians on motorcycles: check, girls screaming in pain; check; girls “on a mission” diving off buildings to almost certain death: check; and girls with SWORDS; triple check. All the elements are there – plus lots of lesbian love and a great techno beat that makes me go: “I’m cured, hand me my epee, I am going to climb a mountain” and then the song ends and my body goes “Oh no you’re not!” Still fun for 3.5 minutes, right?


When I get back I will tell you all about how my physiotherapist sort of yelled at me about how, “her clients don’t WEAR high heels with their wheelchairs” (I was working up to the 5.5 inch heel kink boots), and strange moments of silence when she had to hold the phone away so I couldn’t hear her laughing. I think that was went I assured her with a laugh that, no, I wasn’t going to be wearing a dress....I was going to be wearing a PVC skirt with cincher and corset. I am tired of waiting for certain aspects/people in society to be nice to me; from now on, they either will lust for me or fear me. More on that later....