Friday, March 30, 2007

Holy Week, Church gets mad at a chocolate Jesus while I have my Zombie Jesus film fest.

We are soon to enter what Organized Christianity refers to as Holy Week but what those of the Church of Beth refer to as Zombie week when Jesus, like my great aunt’s cat, fulfilled the qualifications for ascension to Zombie (namely returning from the dead). My great aunt’s cat did not perform any miracles, it just died and then came back, and I hung around with it while staying at my great aunt’s from 2am to 4am, which is when I was up. Being up from 2am to 4am was the reason a month later my great aunt told me that staying there “wasn’t working out” so you can see how Zombie week has a lot of memories for me about being misunderstood and alienated.

Another Canadian born artist has offended the Catholic Church by creating and exhibiting a life size sculpture of Jesus.....out of chocolate. What has irked the Catholic church beyond chocolate (theological reasons unclear on that one), is that Jesus is anatomically correct as he would have been hung on the cross. For a church that constantly uses the “male” aspect of God to validate keeping 51% of the world’s population out of significant church office, I would think they would be happy to see Jesus’ penis. But in the same way Christianity wants to say “Jesus was a human like all humans” and then starts to freak out when you ask what kind of nocturnal emissions Jesus got and what gave him hard-ons, the church is not quite ready to stand proudly behind Jesus’ penis, even a chocolate one. So, tortured and killed for our sins, yes. Peeing standing up – please let’s not mention it.

It also seems that they are upset because the sculptor suggested that people could “take a bite” of Jesus. Now that seems decidedly odd to get offended about; because first, it is a grand tradition of Zombie Jesus Week to talk about eating human flesh; Jesus went on and on about it; like in John 6:54 “Whoever eats My flesh and drinks My blood has eternal life” (and in case you think people thought he was being ‘metaphorical’ in John 6:52, the people around were arguing with each other going, "How can this Man give us His flesh to eat?"). So the Catholic Church, which currently believes in transmigration (meaning that the wafer they give is magically turned into the ACTUAL human flesh of Jesus in your stomach) is upset because people are invited to “take a bite”. Errr....okay.

The Catholic League has decided to boycott the Rodger Smith hotel who owns the display gallery where chocolate Jesus is shown in order to “punish them” because “this is an assault on Christians...for any child holding his mother's hand to see.” So remember, Jesus was a human just like all you girls and boys (Well not like you boys because apparently he didn’t have a PENIS!), and making a sculpture out of chocolate during “holy week” is “an assault” because Jesus wasn’t about fun or happiness, just suffering, and becoming a zombie (you may not find the stuff about ascending to zombie in the traditional catholic liturgy: but died, rose a few days later walking around – hello, zombie! Or vampire I guess: Vampire Jesus, he did talk a LOT about blood). I think this puts the Catholic league firmly in the “killjoys” camp.

In you were wondering what I am doing, well lesbian Jesus and I (looks butch with no penis, you figure it out) are having an action film marathon during “holy” zombie week. I do have a “personal” relationship with Jesus, which mostly involves her hanging around my house telling me I need to get a widescreen TV and better snacks. Last night we watched Unleashed which is written by Luc Besson (of the Professional) because it was about redemption. Apparently the road to redemption for Jet Li is paved with beating up a LOT of guys, sometimes about 20 at a time. But it also stars Morgan Freeman as a blind piano tuner who teaches Danny (Jet Li) that there is more to life that hitting people. I think Jesus and I give it two thumbs up. Tonight is the Dutch Film, Memory of a Killer (also about redemption - lesbian Jesus LOVES films with that theme) about an reformed assassin with Alzheimer’s killing the people who assassinated a 12 year old girl while he can still remember who she was. Jesus is bringing popcorn.

Just to finish off for all those who might think I am just a bit “too cheeky” about the Christ and God’s sacrifice. I know that sacrifice and I know very well that scream at the end too. But that, you have to understand, that is something between Christ and me; go get your own personal relationship and stop trying to tell us how to have ours. But first off, just say it: “Died for all the sins, failings and fallings of all people because Jesus loved them so much” and then say “A chocolate sculpture of Jesus is unforgivable!” Now who is being a bit absurd?

Wednesday, March 28, 2007

I seek kink fashion skirts, someone to tongue so I feel "normal" plus a bottle of valium

I’ve been reading the multiaward winning book Stoner and Spaz and decided that in a book with Ben with cerebral palsy who gets his stuff together and Colleen in ripped tights, a mini-skirt and who “is the type of girl who will do anything if she gets high enough,” who shakes up Ben’s world and struggles against her own self destruction. I was still keenly identifying with Colleen. My lesson as Ben gets his film school scholarship and she ends up in a back alley getting into some strange guy’s car is, I don’t have enough short skirts and off the shoulder revealing tops (Colleen and Ben meet when she promises to show him her tits if he does her Great Gatsby paper).

This probably isn’t the lesson I’m suppose to be picking up but from my point of view, I spent my time getting so many degrees I can’t get anymore and right now, I have been pushed out of normal, passed some sort of veil of “fitting in” and it is more than just the wheelchair. More than so much pain every day I take different pills because the ones that work give toxic tremors after 4 days. Then there is passing out in the chair and hitting my head, bleeding or trying to walk two nights ago three feet unassisted and falling and screwing up my leg and foot. Or yesterday, getting my hair dyed, having five people to shampoo my hair, two for rinsing the color, two to hold up my head and shoulder weight, one to keep the oxygen mask pressed to my face. That, for me, that’s normal. But I am guessing, when I see the fear in other’s eyes, that these things are not normal for them. They don’t fear me because I am tall and strong and independent, but because death rides in my sidecar and when I talk and joke they forget that and when my face turns green and they find my eyes rolled back in my head, and that this isn’t a movie, it is just my limp body and them. About then is when they realize what a fucking shallow mask all my jokes really are. So maybe I am wondering if I haven’t been wasting my years if I could have been transforming lives by showing a bit more cleavage or whether these days making out and sticking my tongue in someone’s mouth because they make me feel “normal” for 10 or 15 minutes is such a bad thing after all? Or maybe if I buy a pleated skirt and some high heel kink mary janes, I can at least pretend that I am taking people’s minds off of what I don’t want to think about, and yet can’t stop thinking about. Because a lot of time, it hurts when I breathe.

As I explained in one alternative store the sexy look I was going for with a tinge of fetish and tights and bows, “I want it to say ‘I’m crippled but perverted.”

“That,” the workers at the store say, their jaws dropped, “is the BEST line.”

I think I am on the right track. I’ve placed a few orders of items from the alternative/goth store Hot Topic. I’ve already got a demi corset in tulle and a mermaid skirt (think Morticia Addams); Linda is delighted, I never knew she fancied a femme fatal side to me. I am shopping from some purple buckled wedge heeled goth knee high boots. I decided my legs can make a statement too; I will be having mother’s pulling their small children behind them as I roll by or burn out my credit card trying.

Meanwhile goth musician Betty Curse, of zombie horror film fame 28 Days (who actually sleeps in a four poster coffin), has released a single “Do you Mind (if I cry?)”; she was bullied a lot at school in the UK and called “Goth” by the big kids (ironic how like gays and lesbians, they used the very words to describe you in order to hurt you). She wasn’t the only one, 15 year old Nicola Raphael were bullied at a school near Glasglow for her goth dressing until she committed suicide. You know, when you see the actions of those who police being “normal”, I wonder why so many people are confused at those who don’t even WANT to fit in anymore. And I wonder why I still do some days. Betty’s video is below, it is pretty good, and I would probably like it a lot usually, it is just I am in more of a “Do you Mind (if I burn down your town?)” mood for the last 24 hours (hey, Linda thinks the smell of smoke in my hair is sexy, isn’t that motivation enough?).

So, went to bed with a bottle of valium last night. I just like holding it. Because I know that simply trying to do a run down the town's breakwater gives me a three shot at dying (1 – run till heart rate goes so high I drop and we see if enough oxygen gets to the brain in time, or heart doesn’t rip apart, 2) Hypotension after I fall puts me in cardiac arrest or 3) the fall while running takes me off into the rocks and I get bleeding in the brain). Going around with an overdose of valium makes me feel so....traditional; almost secure.

Went downtown in the chair today; was propositioned, but not by anybody sober. Went to four stores; in two I had to strip down publicly, once, where I was trying on switchblade stiletto skirts, sitting in my Victoria Secret’s – the mood ruined by my groaning and grunting of quick clothing changes in a wheelchair in public (or did that heighten the mood? Not for ME). And two stores where the wheelchair changing rooms had to been cleaned out of accumulated crap first. At least at one store this 5 foot girl who was a size zero “got” what I wanted (putting me in the dilemma of my promise to maim that mystery size zero girl out there for whom all fashion is made once I managed to find her). She found me t-shirts with spider webs and skulls but I left with a strapless black cross-back top by Foxy, who make most of the super hot jeans I buy (hundreds of dollars now useless; women used to come up and ask me where I got my jeans; now to get any action, I have to wait until I hit a curb, am thrown from my chair, lying face down and then can yell, “doesn’t my ass look GREAT in these jeans!”). I am also on the hunt for a pair of black wings I can attach which don’t get impeded by the low back of my chair. And every time my inner voice of a female relative tells me that I’m too old or don’t have any dignity running around like a doped up 16 year old, I just take another hit of my oxygen and smile. Oh look, crip girl got fairy wings, wow, yeah, I'm sure that’s going to make the world grind to a horrified halt.

I guess you are figuring out I’ve in a “mood”, so if you want to score, now might be the time to make your move (Linda read the first part of this and was like, “So who exactly are these mouths your tongue is making play in?”). On the bright side, unlike every other rebel girl out there I am NOT getting my belly button pierced. Yesterday’s hair salon appointment had me in fine form, after telling several lesbian jokes, I found out the hair salonist’s was “that girl” – essentially we hated each other in high school – She was the one who was naturally perfect at all sports (including getting a basketball scholarship in 11th grade and high jumping higher than her own hieght) and LIKED those fitness tests (remember the “run till you puke test”), I on the other hand was the girl who asked the English teacher those in depth debating questions which no one else in the class understood as they went, “Oh, please, just give us home work and go, we are SO bored!” So I asked which Uni she took up the scholarship on. She replies, “Oh, I didn’t, I made a change and decided to go to a Christian college instead.” I could actually hear the inner needle on the record scratching off as we came into dead silence. Maybe it was because I had just previously found out she was married.

“To a guy or a girl?” I asked. A guy. “Was that working out,” I wanted to know, “because, you know, there are other options.” Yeah, Christian college. And she teaches the children’s bible class. I’m kinda glad I don’t have burnt out bleached bald spots on my head right now.

I get down, so I go shopping. Seems like a good solution to me. I’m still losing weight but other than that, and carrying around lethal amounts of valium, I really think I am dealing with stuff pretty well. Two nights ago, I had a nightmare and I woke up, the adrenaline pumping, you know how it goes. Then, still shaking a bit in fear, I realized in the nightmare I was running away from my attacker: running and running, being chased all over. And then I tried to get back into my nightmare. Because living in a nightmare where having a guy with a hook or something was after me but where I can run and fight and not fall down seemed preferable to being awake, stuck in this body, in this reality.

Those wacky late night thoughts, eh.

Today, as I was wheeling towards a starbucks, some guy I didn’t recognize but who obviously had been secretly stalking me blurted out, “Wow, what happened to you?”

“Life.” I said, and I gave another push, wheeling past him without slowing down.

Friday, March 23, 2007

Does BC Victoria Transit hate wheelchairs? Plus: my blood and strip shopping trip.

Wednesday was supposed to be the “good” outing day as I was off to Mayfair Mall in Victoria, B.C. to meet Linda for lunch. I am using very specific names on this blog today because I had very specific and humiliating experiences for one reason only: I was sitting in a wheelchair. And while I may blog about how being in a wheelchair is forcing me to redefine the image I have of myself or am trying to project to others please make no mistake, I am not a wheelchair: I am a person who uses a mobility aid.

Victoria BC Transit offers new wheelchair users a one to one mentor who helps you plan out trips and goes with you if you want. She and I had planned out the easiest way for me to get to Mayfair Mall and back again with one bus transfer. At the appointed time I was at the bus stop nearest my house. And then it started to rain. Rain really sucks when you are in a wheelchair because my rain jacket can’t cover my legs or the cushion or back rest so I am in my jacket, leaning over trying to keep my legs dry as I wait for the bus. It comes, and I get off outside Crystal Gardens instead of continuing to downtown. The reason I got off early is that it is near the start of the bus route I need (#30/31) and I won’t have to compete with all the different people trying to get on and off the buses at the downtown stops (all in accordance with the plan drawn up by my ‘transit mentor’). I sit in the shelter with the other 12 people. The shelter has no walls and with the wind, the rain is hitting us vertically anyway. After 10 minutes my bus, the number 30/31 shows up and I roll toward it. But the bus driver refuses to lower the ramp. “No room” he tells me as the 10 other passengers walk onto the bus. The bus pulls away and I am left sitting there in the rain. A #30/31 bus has three spaces for manual wheelchairs or 2 for electric, I thought I might have seen one electric in that bus, and there is nothing I can do now, so I roll back and watch it drive off. The rain keeps coming down. I am trying to figure out how two passengers with wheelchairs could get on a bus when it has only gone 5 blocks from the start of its run. Later I realize that with the rain, there are many, many strollers (which take up a lot of room). However, as the Victoria BC Transit Website states in the only bold letters on its webpage: Strollers MUST be collapsible. When the wheelchair positions are required by another customer using a wheelchair or scooter: the customer should fold the stroller, move to another available seat and store the stroller between the seats. If you cannot collapse the stroller, you should request a transfer and exit, and take the next bus”

Telling moms that they must fold up their stroller or wait for the next bus is a gigantic pain in the butt for both the driver and the people with strollers. Indeed, it creates a lot of negative feelings and makes the bus run behind schedule. Leaving someone in a wheelchair in the rain however causes none of these problems.

Previously in the week, my father, a Victoria Transit driver, knowing I was making this trip, told me in all his driving years he had only ever left one person in a wheelchair at a stop due to other passengers in wheelchairs being present, but only after notifying a supervisor and the passenger in a wheelchair so that alternative transport was sent or reserved for them. Right now, it is cold and I have another 10 minutes to wait in the rain for the next bus; I’m not happy but that’s life, right? The next #30/31 rolls up and I have closely scanned the inside; there is not a single wheelchair in the bus; it looks like there might be a stroller but no wheelchairs. Alright!

The driver does not even fully come to the curb but as I roll forward, he opens his door and holds out his hand in a “stop” sign. “No room” he says, as a passenger hops on, and before I can speak, he has closed the door and the bus is in motion, up the street, leaving me sitting by the curb in the rain. I am now stuck at this bus stop. My 'mentor' choose this stop because it is flat. But it is also at the bottom of a giant hill leading to downtown. With my heart condition, I cannot wheel up that hill. I also cannot catch the bus which brought me here to take me back home for another hour. I cannot wheel to another bus stop. It has been 20 minutes in the rain and now TWO buses have left only ONE person at this bus stop: the one in the wheelchair. I really want to go home now. Only now do I realize how incredibly helpless I am; only now does it sink in that I will get wet and tired because someone else can’t be bothered and that right now, I have no other options but to continue to wait on the “good will” (or rather when I bought my bus ticket what I assumed was "professional ethics") of the next driver.

Some of this must have shown on my face as a passenger comes to the stop and wants to find out where I am going and convinces me to take their bus, the #50 in five minutes instead of waiting 10 minutes for another #30/31. I do and the driver lets me on. He raises the ramp while I back into position (wheelchairs almost always face the rest of the bus, riding backwards) and I am almost there when the ramp at the front finishes loading back in and the driver, without a word, floors it, taking off up the hill. My wheelchair is not yet in position, nor do I have my locks on. As he speeds up I and the chair are thrown forward and I clamp my hands around the wheels to stop from having my face accelerated into a wall partition. I have to hang on to this grip until he reaches the top of the hill and stops for a light, when I can finally finish backing up and put on the wheelchair brakes (Drivers are supposed to ensure, at least verbally, that wheelchairs are locked before progressing).

I am not amused, indeed I am very, very angry. I am hoping that some mysterious figure in a cloak will appear before me and tell me to “Release your anger! Give in to the dark side and your training will be complete!” because, honestly, being able to pick up objects with my mind and ram them into people’s heads at high speeds (say certain bus driver’s) sounds like a REALLY good idea right now.

I get to Mayfair mall and have some time before Linda arrives so I go shopping. Or should I say I TRY to go shopping as all the clothing stores have added rolling “Sales” racks to so many parts to their store that I am reduced to rolling back and forth in front of a store trying to get the attention of an employee to come and actually move some damn stuff so I can actually shop there (which I assume is the purpose of clothing sell clothes to people). I am still on the lookout for some styling printed top which say something about me like “mournful but really good with knives” or “Girls are skary!” In one store I find four tops to try on and the sales woman takes me to the changing area: there are 10 changing rooms, one of which is specially built for wheelchair customers. When she opens the door, it turns out that the wheelchair changing room has been used for quite some time as the extra storage room and is full of clothing racks, signs and broken junk. She drags out enough stuff so I can get into about 1/3rd of the room (enough for my chair), I get in and ask, “Where is the mirror?”

“Oh, that room doesn’t have one. You’ll have to come out here to look in a mirror.” Okay, a women’s clothing chain with a changing room without a mirror, another first for me. I try on the tops and roll out and while the assistant comes and comments on the other people changing (“that looks really good”, “Do you want another size?”, “I think the blue would look great on you.”), I notice that whenever I emerge, she quickly retreats into the forest of clothing racks. I presume this is because she doesn’t know why I am in the chair and doesn’t want to offend me (“That really hides your hump”), but in the end, by treating me as a social leper, it makes the experience sour enough that by the time I get to the third top I have a “what am I doing here?” moment. I have had enough of this crap: I am changing clothes next to mannequin arms for goodness sakes. I try to leave but of course, have to wait for a sales person to help move some of the displays in order to actually escape the store.

I am so pissed I start rolling really hard, letting my arms do the talking, which isn't so bright as my thumb rolls right under a brake, ripping the skin right off and leaving blood trail. Luckily, I have a bandage. Does pain make me strong...or just feel stupid?

I meet Linda and we go to the one “alternative” t-shirt shop who, unlike the day before is not staffed by intelligent, alternative, wants-to-talk girl but rather surly, “oh my god, there is one of ‘those’ people in my store” girl. She will not help us, she will not answer questions on size. Still I find a couple shirts I like and ask to try them on. She leads us to the “change room” which is a small add on closet. Without looking AT me, she looks at the doorway and then at the wheels of my wheelchair (there is no way it can fit in there) and then, without a word, she turns, walks to the back of the store and disappears into the “employee only” section. Gone! Linda is a little freaked and we both just stare for a few seconds at the door where she disappeared. I look behind me and it is a shallow store with complete floor to ceiling glass; everyone in the mall walking by can see us. Linda wants to leave but then, Linda has not had my day or is still damp from outdoor bus experiences.

“If that’s the way they want it, that’s the way they will get it.” I say and start to strip off my clothes, right there, on the sales floor, nothing visually between me and the people walking by in the mall outside (I do have my back to them). Linda freaks a bit more. “I came here to buy t-shirts,” I say to her, “and I need to try them on.” Do I like that I am forced to strip down in public, on a shop floor while people in the mall are watching me? No. It is humiliating. I do not like being left by the staff with the only choices being that either “maybe someone (something?) like me shouldn’t be shopping there” or that I don’t deserve the same right to body privacy as others. But is it going to stop me? Damn no! I find a shirt I like. I put my clothes back on. It burns to have to PAY the girl who now has magically reappeared to take our money. Where are those “dark side” mental powers when I need them? However I really did like the shirt, and post it up here for your approval (and if you know what is good for you, and don’t want my dark powers making your coffee mug fly into your head, you WILL like it too).

We continue on to a mall stand which sells alternative jewelry but whose owner is giving me what I call the “pet treatment.” I ask her a question like; “Where is a good place to find some alternative clothes?” She turns to Linda and says, “Downtown in Chinatown there is a good place.” Everytime I ask a question, or want to see something, she either gives the answer to Linda (who is standing, so at her eye level) or looks to Linda for APPROVAL for me to see something. Hello! Once again, I have mobility issues: not a slave, not a pet, not being “taken for a walk.”

After trying to go into one more store whose aisles have had so much added on to them that I am unable to even turn around and must back out after an aborted attempt to enter simply the first quarter of the store, I decide to go home. I have had it. In my shopping there was not ONE CLOTHING STORE in Mayfair Mall that I tried to enter in which I could, as an individual, shop or try on clothes in an equal manner as others, much less those stores where even entering and viewing what was on sale was impossible. What really angers me is that this is a form of discrimination which, because it is physical instead of verbal or posted, in so commonplace as to be accepted. If any one of these store had posted a “No Black or Asian customers welcome in this store” sign; there would be a huge article in the paper the next day with letter writing for weeks to come. Yet, by their physical placement policy and the attitudes of staff that this was normal and to expect otherwise was the odd thing (or a store where I might be able to shop on my own without needing assistance) clearly states, “No wheelchair customers welcome here.” (or in the more physical restricted stores: “No wheelchair customers allowed”).

I’d like to say that this was an issue that has bothered me for some time but the truth is, when I was an able bodied duty manager at a retail outlet the first thought I would mentally have when seeing a person with a wheelchair enter the store was “Oh no!” Because I KNEW that the head office had repositioned the aisles to “just” be compliant and THEN piled things in front of the aisles, hung things from the aisles, added bins and sales displays and that this person in a wheelchair was just going to get frustrated and pissed and probably yell at me (hey, I was just following orders, like any good drone; now keep in line as you enter the gas chambers!). I wanted the person in the wheelchair to leave because their very presence in the shop facing such obstacles WE put up showed how little we cared about them. Yes, I was a hypocrite and now, I am telling you, so that you can learn it before, like me, you have to see “Oh geez, here comes a problem” written on the faces of sales managers and staff every time YOU roll towards a store in later life.

Going home on the #30/31 bus was again quite an experience. Though the transit guide said that all buses on that route were wheelchair accessible, the first one to arrive was NOT. Cue everyone getting on and leaving me behind AGAIN. The second one did have space but the driver put down the ramp so close to a brick wall that it was physically impossible for me to make the turn to get on the ramp (also, you begin to notice that some drivers are too lazy to take the time to lower the hydraulics on their bus which makes your ramp the equivalent of rolling up a mini Everest). After three tries and almost crying in frustration, a couple passengers stepped forward and actually lifted me onto the ramp – so all is not lost with humanity. I just wish I did not have to rely on the “kindness of strangers” because that day, it seemed a bit of a hit and miss thing. Of course there was a woman sitting across from me who after staring simply said, “So when where you in a car accident?” (Linda suggested I counter with “So when did you change your underwear”)

I will say that on my transfer bus back home the #3, I was treated like visiting royalty. No driver ever made me feel more welcome or glad that I was on HIS bus. I don’t know if this is what guys mean when they talk about chivalry, but lesbian or not, I could learn to live and appreciate that (particularly on public transit).

The transit story however does not end there as I called Transit customer service and detailed my sitting in the rain while drivers drove off that morning IN DETAIL. However I had reached the “our corporation doesn’t make mistakes” customer service guy who told me things like, “people aren’t required to move from wheelchair seats so a wheelchair can sit there if they don’t want to.” Or “Drivers don’t have to try to make room for a wheelchair if they need to make up time.” His response to being left in the rain: “Drivers need to keep to their schedules.” He told me that a driver can CHOOSE to assess if they have enough room for a wheelchair (but they don’t have to; thus not letting you on), and that if they think there is enough space, the decision of whether to ask people to move and make space for a wheelchair is again up to them (so if they don’t FEEL like it, then they don't have to let you on) and only if everyone wants and chooses to move does the transit driver then let you on. He also had answers (lazy answers) for what I already knew from my father was the proper procedure. Me: Could the driver radio to find out for a passenger in a wheelchair if there is no room how much room the next bus would have? Him: They wouldn’t have that information (from the Victoria Transit page: “If a bus that arrives is not accessible and the schedule indicated a low floor bus, or if the wheelchair and scooter positions are full, the driver will advise you of the next accessible bus.”). Me: Could they notify a supervisor that a passenger in a wheelchair was left behind. Him: No, that would serve no real purpose.

I explained how I was now very reluctant to travel Victoria transit as it seemed that particularly on rainy days, if drivers didn’t want to confront people with strollers that I could be stuck by the road for ANY length of time, up to an hour or more, and that it was “pot luck” whether I got a ride or not. The official representative of Victoria BC Transit Authority on the phone with me agreed. There was no apology, I was not offered or allowed to make a complaint but when I reported the times and numbers of the buses involved, I was told it “would be noted” (I did also make him write down the exemplary service I had received on bus #3 from the driver)

That’s odd because on their web page it says: “Accessible seating on the bus is prioritized to best meet the needs of all transit customers…The priorities are as follows:
1. Customers who use wheelchairs, scooters, or other mobility aids.”

My father was not amused. I think he is talking to HIS manager today, fathers get touchy when their daughters are left out in the rain. On a side note, one time, due to the passengers failure to comply, he emptied an entire bus, loaded the passengers in wheelchairs, then allowed the other passengers to board. He really takes those priorities seriously.

I immediately called the Transit administrative offices and asked to speak with the person who would be in charge of the official wheelchair policy since what was on their web page and what I had been officially “told” was in complete opposition. They patched me through to the Training and Safety Managers voice mail. I have waited over a day to hear back; with no response as yet (I’m not holding my breath).

So that was my shopping day. I got a cool shirt, I got a real education on discrimination and crappy service (hello people, if North America is suppose to be a ‘service economy’, could you try a little harder when someone is actually WANTING to buy stuff from you?) and I got so angry I woke up with three zits. My training mentor is so appalled she is writing a report for her supervisor but I do not expect much. Only now am I being to understand the question: Is the person with mobility issues disabled or is the society itself disabled because they are incapable of integrating a person with mobility issues?

Thursday, March 22, 2007

Getting the FUBAR life guide; I go Betty Paige until I find a plan

In the non-existent guide book they give you called: “FUBAR: your life has hit the fan” while there may be a 200 page section on “Why...why me!?” which doesn’t hold a single answer, I haven’t yet found the section for “falling apart.” Something bad has/is happening to you and/or someone you love. You put on a brave face, they put on a brave face, things still continue to get fucked up and people find different ways to “hang on.” As for me, I make plans, I try in my circumstances to find some idea, some objective or dream so unbelievable that no one in their right mind would think of it. And sometimes, life, society or other factors can come in and smash that beautiful little dream right in front of you. Monday night, that happened to me and I cried and I curled up in a ball and I said things that made Linda mad at me and then made her hug me: falling apart.

But then, cause I am Elizabeth (effing) McClung, I get UP Tuesday Morn, and I get my little backpack and my oxygen on my wheelchair and I catch the bus into town. Because I am in search of a new dream, a new plan and maybe, maybe some clothes and fashion accessories to go with it. So I stop off at the big book store to buy this month’s issue of Gothic Beauty. Sold out, they tell me, they have more people who want it than copies. But as I am wheeling away the saleswoman runs after me, turns out it has been repositioned in the “Women’s Section” right next to the mag Firm Gluts and hair styling mags. I try not to think too much about how, according to the local bookstore, a magazine with red buckled vinyl bra & corsets on tattooed girls along with articles on adding a hearse sidecar to your motorcycle (or taking a goth bellydancing class) is now just one step away from Cosmo. I frown and wheel on, in search of new alternative t-shirts to wear because as I tell several of the shops, “I now have limited advertising space” (going from 6’3” to 4’10” does that).

I am getting rejection right, left and centre but actually having a fairly good time because these are bored, educated, “alternative” people and we talk about Edward Gorey and how The Darkness is going to Eurovision for the UK, and I stop by a tattoo place who has the typical REALLY big burly guy and ask him about this “three year” tattoo I was told about by another woman at Nationals. “That same old bullshit sweetheart, it is the three year AND the lifelong tattoo.” I thanked him for the info and his time. “Get the fucking door for her!” he yelled at this guy coming in a sort of sweet, biker style way. I stop by a comic/manga shop to look at t-shirts and find a guy VERY depressed aboiut Yaoi (boy love) manga working there. To him, things have just gone downhill since Akira and Trigun and Cowboy Bebop (basically when MEN did things like kill men and blow up stuff instead of, you know, talking about their feelings and kissing each other).

Finally back at the Downtown Mall I met paydirt with this tiny story selling Tim Burton shirts, temp tattoos, body piercing art, and all sorts of interesting stuff. It was run by this amusing and humorously bitter butch who talked with me about growing up in rural BC (her friend killed himself in high school because people at school “thought” he might be gay, so they hit him in the head with a steel pipe). And about a girl friend she had with cerebral palsy who used her voice computer at 15 with all sorts of swear words (hey, you have CP, you are 15, you live in hicksville, and people talk to whoever is with you as if you are a pet, why not have a “screw you” come out of your voicebox?). I picked up some temporary tattoos there (still not into the whole commitment thing with the tattoo, I love em, but then I love changing them too!).

They were selling alternative hairbands, headbands and hairclips there, with skulls and stuff. I don’t like only having a ponytail but have found when wheeling with the wind at my back, I am soon sucking my own hair. So I tried on this skull and stars head/hairband and asked the butch, “Do I look evil in this?”

"Uhhh...cute and evil, you know, in a sort of Betty Paige way." she replied. I tried not to let it show but I was totally buying that hairband, I mean, that was the first time anyone had EVER compared me to Betty Paige; and if she thought I looked “cute” and “evil” and “like Betty Paige” then that was definitely the impression I wanted to give people around town as I wheeled around. Yes, this is a look I can live with: I am a sex goddess, and I have this cuteness but I may run over your foot “accidentally” because of my exploited innocence.

"Oh good, people used to think Betty Paige was evil." I tell her trying to cover how pleased I am.

"But they don't now," the butch interjected, "Now everyone loves Betty Paige."

Damn, I don’t care how much that costs, now I have to have it. She starts ringing it up. Of course this is the time I have a heart “problem” and whip out the oxygen. She’s cool and when I can see again, and am hooked up she tells me to “take my time” so I give her the thumbs up and when I can talk again tell her nothing clears 10 feet like on oxygen. We look around: people are walking away and looking back. After I have recovered, the store is invaded by a group of visiting Japanese tourists attracted by anything Gothish in this little town. (I bag it and roll – and immediately take a pic of it once I get home, so you can decide for yourself – I like the hairband but not quite seeing the Betty Paige thing yet; maybe I’ll grow into it?)

I went further into the mall to a store call Garage looking, again, for v-neck print t-shirt. I couldn’t find or reach everything so I rolled up to the counter where two female workers were talking. I had eye contact with the one on the left, about 19-20, who looked at me, looked at the wheelchair and then simply turned away without a word and walked to the back of the store. O…..kay! Luckily the second 20 year old female was willing to talk to me, but we didn’t find anything right then and I asked if they knew another store. There was one called Stitches by the escalators. I thought I knew the store and asked, “fake fur jackets?” By this time another woman working there had joined us and I was trying really hard to figure out another way of saying what I thought of that store. I gave in and said, “I used to know a store by the escalators but the clothes style was....uh.....trailer trash?”

They both burst out laughing, “That’s it, that’s the place!” One of those moments where you finally say what everyone is thinking. They did, however sometimes have cute print shirts it seems (Hmmm, since I had the “cute” on the headband I was hoping more for “evil” on the shirt).

Down at Stitches I was looking at low end product nightmare. The rows were so packed it would have been difficult for two people standing to pass or walk down them, and except for the giant centre aisle there was no where I could actually GET to the women’s clothing side of the store. At the back of the store the manager walked toward me, her manager’s key around her suited arm. She looked at me, her eyes flicked to her (very illegal and non-wheelchair compliant) aisles and sections of women’s clothing and then stared straight ahead and I leaned forward to ask her to help me. Eyes ahead she passed me and continued on to the front of the store. After some difficulty I turned around (so I didn’t have to wheel out backwards), and simply left, she was at the front folding t-shirts in a display. I knew the type, employees always have to be busy, always have to be meeting head office display standards. She muttered a “good day” as I passed, which sounded a lot like “Good bye!”

Of course, once I had decided to go home, it wasn’t actually that easy. I had to catch a bus and I had to sit outside in the cold wind a long while to do so. Best I thought, to go to the bathroom first. I follow the wheelchair bathroom signs and find myself atop the steepest ramp in the building (so far). How I am going to get back up this I do not know. Down at the bathroom, I have to buzz for someone to come and let me in. It seems wheelchair peeing is a lot like being in prison; you have to ask permission. There were of course, no towels so by the time I grunted back UP the ramp, I was in a mood. Of course, I still had to use the elevators to get up a level. A guy in a motorized wheelchair and headrest was already waiting and while I watched, people got on the elevator in front of him, blocking him and closed the door. We both lamented how lame this building was and when the elevators came together decided to race each other up to the next floor. I beat him and as I wheeled past him coming out of the elevator, I said, “see you at the buses!”

I eventually caught a bus but found when you are downtown, female and stuck in a wheelchair, that you are literally sitting prey for every male wack job, weirdo, half boozed and annoying guy around. One guy eyeballed me, saying, “You seem in fine condition” (was I beef?), continued, “Having a good day?” before stepping in the middle of the street directly into traffic WITHOUT looking; that was my second hint he was a bit “off”.

On the bus back I was on one side of the wheelchair section and on the other in one of the seats was a mentally challenged woman who was in assisted living and going to her workplace. She talked about what cookies she liked and her boyfriend who only sleeps except when he is cranky but mostly about work. However, some well meaning couple tried to have a conversation with “the disabled” and talked to both of us using the exact same placating tone and banal questions. I could tell the woman going to the Red Cross was getting pissed because they kept avoiding giving her direct responses (on they assumption she wouldn’t understand.. “poor thing”). We got on fine, since she worked at the Red Cross and I had some medical equipment from the Red Cross (“See,” she said to them pointing to me, “She knows what I mean working at the Red Cross”). I am trying to remain amused and calm at this couple and not pissed because they can’t seem, in their style and tone of speech, to tell us apart; that I can understand what you mean by, “Do you hope it is a nice day…..tomorrow?” (with the “does she understand time” hesitation) because we are both in the “disabled” section. They seem to have missed that I have a mobility issue, you know, as some might from seeing me in a WHEELCHAIR: a device which negates neither my doctorate nor my understanding of the word, “tomorrow.”

A mixed and rather unsatisfactory bag; no new plan, a bit of accessorizing but no new fashion reinvention and a mix of people I want to meet again, and those I don’t. I determined to go to the mall near Linda’s work on the morrow (today). That turned out to be a whole different experience, a very different experience which included some blood and taking off my clothes in public. But I’ll blog all about that tomorrow.

Sunday, March 18, 2007

Blog has down time due to human excess, please send borg parts

This blog has been delayed due to human excess (unfortunately that’s the “human” aspect of sick and ick rather than 24 hour clubbing and shooters). For me Thursday was but a few waking hours ago as I became ill Thursday night. “Ill” or “flu” or whatever is rather wimpy for the experience I went though, much in the same way you wouldn’t tell a guy whose car got run over by a train that it was “scratched.” Or maybe you would.

The quicky highlights of the last three days in order:

*Extreme chest pain and a rapid heart rate that would not go down for 20 hours; chest pain so bad I was screaming
*Wondering much longer I/my heart could last before it went “pop”
*Nausea for 8 hours so strong it would create lockjaw for periods
*Spontaneous muscle tremors showing up all over my body, including part of my face producing the “oh shit, will my smile still go up on both sides tomorrow?” question.
*A paralytic state on oxygen for an hour where I communicated by blinking
*Too scared to call 911 because I believed (due to needle phobia) the terror of getting a needle would put my weakened heart into arrest
*Wake up feeling like I have a 103 degree fever but actually my temperature fluctuates between 99 degrees, 97 degrees and 101 degrees within a 20 minute period.
*We call the health line, they say with my heart issues to call 911
*We call 911
*911 comes and acts like jerks; one EMT tells me the secret to controlling your heart rate is “with your mind” and while refusing to listen to my medical history or last night appears to think I have called him over because I am worried about coronary disease (like cholesterol). They leave, after making clear that while I can go to the hospital there is no need, as this can be dealt with by my mind. Linda is not amused.
*Within 2 hours I am “out of my mind” as my fever has spiked, I am hallucinating for the next 7 hours and have lost control of my body from the ribs down including complete muscle tremors on all of my muscles from the waist down. My fever is likely 105 (since that is usually when I start seeing things) but since we are convinced that calling 911 is useless we don’t bother checking and are using backwoods tech: hope I sleep and somehow recover. Linda manages to individually stop the spasms and tremors all along the lower half of my body while coaching me on how to breath while I still believe that I have been condemned by the devil to walk the many paths of hell which is why he has taken control of my legs.
*I sleep until noon, the fever has broken, however, I can only stay up for 45-55 minutes before needing to sleep another 2-3 hours. I am upright less than 4 hours that day.
*I've lost 7 lbs!
*I’ve been up 80 minutes so far today; so hopefully will be able to sit up long enough to blog about something important like the Eurovision contest or how Mexico City has legalized same sex unions.

I will try to resume programming shortly.

Thursday, March 15, 2007

Manual or power wheelchair; my choice and why I made it.

“My face is gray, it’s actually green/gray!” I gasped.

“I know,” Linda snapped, “Now can you make to the (wheel)chair?”

“You guys always said my face turned a greenish but..arrhrhh...”

This was followed by Linda pushing me into the bedroom, dragging my body onto the bed, setting up the oxygen and staying with me the 40 minutes until I no longer felt that invisible men were systematically stomping on my chest. I can tell you it is quite a different thing being told that you have a “greenish” face and actually looking at your fact and seeing that it has a colour different to the rest of your body, one that resembles a bad school cafeteria stew. Last night’s experience summed up the nature of my illness; at times almost cartoonish; except it hurts too much to laugh, certainly horrific, except it hurts too much to scream: random, uncontrollable, debilitating, dangerous, painful, unknown.

That is my lead into why I am getting a manual wheelchair and why anyone else in my situation probably should not (any why I hope that the person at our insurance evaluating my claim doesn’t read this). Okay, you be the physiotherapist: You have a patient who has gone from an elite athlete endurance level to falling down and losing consciousness after even minimal exertion (like walking two blocks). The condition worsens during the course of the day until even walking from room to room can create a fall and prolonged unresponsive state. She evidences extreme fatigue over simple daily tasks to the point of fatigue paralysis. She sleeps at least 11 hours to 16 hours a day and requires oxygen to supplement either a heart or other deficiency in providing oxygen to her body and brain. It is unknown whether it is one or more conditions. It is unknown whether she will continue the accelerated decline. While different observational tests have show various heart abnormalities as symptoms, the cause is unknown, even the origin be it heart, neurology, or elsewhere is yet unknown. It will likely take at least a year to complete the testing. She gets to put in one claim every five years: how does she get around? As Linda said, “I would get a power wheelchair.” And I replied, “And I would want you to.”

Every expert including two different hospitals say a manual wheelchair is not the “best” solution (or even a good solution); if I wheel on flats my heart rate is 110 bpm, on minor slopes with stops it is 120-130 bpm (this is compared to 130+ bpm for just standing for 2 minutes). An expert on wheelchair efficiency told me that wheelchairs use a smaller muscle group and can be less efficient, also that if I am fainting and need to carry oxygen, and considering the long term a motorized wheelchair is safer, less risky and more long term solution.

Yesterday in discussion with my occupational therapist, she suggested that I try meditation as a coping skill to help me “accept where I am.” Actually, I told her, I am a person that feels better by DOING something. “Often,” she responded, “the secret of life is in BEING not doing.” We glared at each other and moved on.

Even Janet, my physiotherapist said while a power wheelchair at twice the price would get approved right away but she has tried some creative writing since any adjuster should look at “heart” and “manual wheelchair” and go, “Huh?” So I should be able to come up with some clear and precise reasons why I “need” a manual wheelchair, reasons anyone can understand. I’ve been thinking about it for weeks so let’s give it a shot.

I don’t do things because they are easy, I do them because I feel that the outcome and even the process itself is worth doing. We don’t have a car, and part of the reason I used to walk places was not only to get there but to have the experience of walking itself.

When I started epee, like the many physical (and failed projects) before it; from training to run a 90+ mile ultramarathon in Africa to attempting to qualify for the marathon for the Commonwealth Games. I put in the hours, I pushed myself every single time to the limit NOT because I thought I had a realistic chance of being the best. I did it because I believed that TRYING to be the best was better than not trying at all. And because I just don’t seem smart enough to aim for “middle of the pack” or “acceptable levels.” I have to say that this is not a particularly new trait (when I was 12, after learning to use a chainsaw, I decided to spend the rest of the day chopping down the next tree with an axe), if something has a 90% failure rate, that tends to make me MORE interested not less. And in many ways my life consists of heaps of failures. And in other way, my life consists of the meaning I get that struggling for a dream, an improbability gives me and through that I have achieved more in various fields by trying and failing than most have by sticking close to the edge of metaphorical pool (still working on that universal prime number generator, yes, yes, I know it's impossible, call back again next year).

So obstacles aren’t a threat to me since overcoming them is pretty much a way of life. When I moved to Canada, an interruption in my therapy about my sexual abuse, physical and other threats due to homophobia in the UK as well as a toxic boss who turned abusive had manifested themselves into a fear of men, as well as a form of agorapobia which meant that at best I couldn’t go more than six blocks from our apartment without being accompanied. Of course, just because I was in such a state did not mean such a state was acceptable to me. So I started to try and walk around. Unfortunately I had several very negative encounters with some local lowlifes and a few stalker guys which didn’t help. But I was determined to try and go outside every day. Now that meant knowing every route to every destination, which streets were the quietest, at what times of day where there would be the fewest people, etc. So I usually had 3-4 different possible routes for each destination depending on how I felt that day. And still some days I was not able to go outside. And sometimes I cried in frustration because I could not go outside. But I tried again the next day. And I started seeing a new therapist to attack it from that end. Ironically toward winter, things started getting better and better, I finally got to the point where I could leave my six block radius, I did not feel fear when a guy approaches to talk to me, I am a-okay! Well, until my body started to self destruct. (still don’t fear guys, but now back to a 3-4 block radius)

Now, if I had a power wheelchair, I could motor anywhere I wanted (as long as the battery lasted) right? From my point of view though, would “I” be going, or would I be the sack o potatoes sitting on the chair. Or rather, why walk when it is easier to take a car? But, Beth, this is your health we are talking about. Ah, well, screw my health. All anyone can tell me about my health is either what I can’t do, or what they don’t know. Can they stop the pain? No. Can they ensure I will have adequate oxygen for the next five minutes? No. Can they slow my heart down to normal? Can they make it so just sitting and breathing doesn’t exhaust me? Can they tell me if this is temporary or life long? Can they tell me when they know what is causing this? Can they tell me if it can be fixed? Can they tell me when I am going to feel good or bad? No. No. No. They can’t. Even sitting in a wheelchair or being in pool doesn’t stop me passing out or needing oxygen. So, for them, a power wheelchair is the safest option (cause the word “safe” is something think of when they think of me?).

There is a problem. I don’t have a life, I don’t have a goal. I don’t have a job, I don’t have a hobby, I don’t have socialization, I don’t even have control of when I wake up and if I can brush my teeth standing or sitting. So while I am waiting, with only medical appointments on my calendar, what is my life? I don’t know. So how do I know? By making it: by finding out all over again, what are my exact limitations and how much can those be altered or changed? A friend with AIDS talked about “living with the monster in the house”, and I’ve soon found out that you kick the monster, it kicks back, and HARD. If I try and work longer and don’t get my 11-12 hours sleep, I lose a day. If I push myself physically for several hours instead of one, I lose two days. But, then, like everything in life, there is a bit of wiggle room. How far can I wheel before I need to take a break? What happens if I hook up the oxygen AS I start some exertion, does that help?

So when I figure out how to wheel down to the local video store, and take the bus back to home. That is something I have accomplished, something I can do, something I am confidant, evaluating my condition that day, that I can achieve (yes there are a lot of “I”s in that sentence but I haven’t noticed a lot of “team” in “breathing”). And each time, I can play a little more, getting a little faster on the downhill, shooting past people on sidewalks as I use my biking gloved hands as friction steering. Figuring out how to get more power and less energy. And sitting at the bus stop looking up the hill that I cannot, AS YET, wheel up, I can go through my mind all the possibilities, ‘what if I took this side street?’, ‘what if I stopped here?’. I am rewriting the limitations of my body into my body.

When we did the hours and hours of testing and ordering for the wheelchair I turned down “frog legs” (front wheel casters with built in super shock absorbers that absorb any bump), because I wanted to know what surface I was riding on without looking, I wanted the vibrations of the frame of the wheelchair to become an extension of my nerve endings. And I wanted a reason to get up in the morning, a new challenge: the sport of “What can Beth do?” and “Where can Beth go?” and to build new muscles and to get sore and to have toned arms and to turn getting to where I want to go into the challenge and sport that I no longer have in my life.

So I have ordered an ultra-lightweight titanium rigid wheelchair from ti-lite. They would ask, “Do you want a titanium axel casing?” and I would say, “Yes, those ounces might mean another month if I deteriorate.” “Do you want arm rests?” – “No,” I’d say, “that could be two months if I deteriorate.”

Linda pulled me aside, “Stop saying things like that, you are freaking them out and they will MAKE you get a power wheelchair.”

“Just being realistic,” I said, but apparently athletes/outdoor survivalist brain and physiotherapist brain have different thinking patterns.

In a body out of my control, going round the block in the sunshine is my victory, I can feel in the ache of my forearms (and the heart rate that stays under 120-130). I am planning trips combining wheeling and buses with the intensity I used to give to my training schedule. I have things on my calendar most days that have nothing to do with medical exams or doctor’s appointments. I have new places to go, I have new journeys to try. I have the excitement of finding out what is possible and what is not (while carrying a cell phone with 911 preprogrammed) and then trying to figure out how to make the impossible possible. I am watching videos of wheelchair basketball and Wheelchair Tango and thinking, “Okay, what if I wear the oxygen while playing? No, they will crash into that, that won’t work.” I am creating a new pattern in my life, one which might be quickly accomplished with a power wheelchair, but I’m greedy; I want all the glory, I want all the joy of making it up the hill, not thanks to a battery driving me up it, but because I managed to find a way that combined my limitations and figured out how to make it work, for me, on my terms. (is anyone out there thinking “driven type” personality?)

I am getting a manual wheelchair because for me, for someone like me, there is a great difference between living, being alive and WANTING to be alive. Because of the nature of my illness/disability it means that while mornings are not so bad, by the time night comes it is usually very bad; continuous pain and dark thoughts (apparently during the fatigue paralysis at night on Saturday, I told Linda that in the morning she needed to take me in the chair to the end of the breakwater so I could throw myself into the rocks and water below while I still might have the strength to do so. I didn’t remember saying that, so she reminded me when the NEXT night, lying in too much pain to sleep, I made the exact same request). So you see, at midnight, I really need something to hold onto, something left that is mine, something to keep me look forward. And honestly, “Tomorrow I’ll push my thumb forward till I reach the store” doesn’t quite do it for me.

Yes, a manual chair is harder, it has a learning curve, I curse it, it makes me sore in places I wasn’t sure you could get sore, it makes me sweat in places that aren’t supposed to get sweaty (with girls), it challenges me, it frustrates me, it makes me long for going for a run or walk (except that heart rate so fast I’d die thing), I get scared I’ll fall out, I get scared I’ll get too tired to get home. It is a pain, an irritation. But tomorrow I will be going to take a two bus transfer to go out to a mall and meet Linda for lunch. I have a tomorrow. I am going shopping. I am going socializing. I am going wheeling. I hope you get it, because if you don’t I don’t think there is any other way I can explain it. Except that it would have been a lot easier for Terry Fox to drive or have a motorized wheelchair in his run across Canada instead of running on a blistering stump with a prosthetic, it probably would have been better for his health too. But it is the pain of the struggle that gives meaning to the accomplishment. If you don’t get that then...I really don’t recommend childbirth.

Tuesday, March 13, 2007

Hello Kitty Guitars, FIFA gay action and gothic oblivion

Today’s posts are about fantasies, desires and three different ways those play out. How am I going to combine: the FIFA football, Hello Kitty, Gothic oblivion, guys making out with each other and guitar goddesses? Wait and see...

If you want to know how far girl power has gone, stop looking at the lingerie made for 8-10 year olds (who though THAT was a good idea?), and start looking at guitars. Girl bands are nothing new, neither are girls playing guitars. But 10 years ago when they did the stats, they found that 96% of guitars were purchased by men. Shortly after that, retailers figured out that the one group which had the largest untapped buying power was.....girls. Tish Ciravolo’s baby daughter drew a daisy, Tish added a neck and leafy headstock to the picture and took it to her husband, President of Schecter Guitars and Daisy Rock was born. Personally, I’m a favorite of the “Pixie” series. Last year Daisy Rock Guitars made sales of $2.4 million with guitars that girls, even little girls WANTED to be seen with (this ain’t your brother’s old guitar anymore).

Now Gibson has put out their Les Paul Vixen and Goddess lines.
Fender has put out an entire range of Hello Kitty Guitars (which I sorta want just to freak people out: babe in wheelchair with her rotating skull wheels, her goth shirt and her....Hello Kitty Guitar! The guitars are also custom made to be lighter with necks a bit more slender to fit girls. So, it is an idea late in coming but now there is actually a choice (and if you’re a little boy who just HAS to have the Power Puff guitar, then rock on!), and hey, choice is a good thing when it comes to dreams.

And with the FIFA junior world cup along with other football/soccer action, what better way to celebrate it than with a video of intimate male to male moments. This video is about male SLASH (the creating of a romance between two favorite male characters) out on the FIFA football field. Only watching this video, one is not quite convinced that these guys are just “excited”, or rather, they are very excited, so excited in front of 50,000 people they grab their best friends butt, give him a deep kiss on the mouth, leap atop of him and..... Talking about football and this video one guy tried to explain this “male” phenomenon, that yes there an erotic charge from the sport itself “they love each other, there is erotic excitement between”, but it is from the height of the moment and excitement of a goal they have all worked hard for....but they’re not gay. Okay, excited, check; erotic excited, check; they ‘love’ each other; check; overcome by emotion; check. But not gay......yeah, I guess there are some things us women will never quite understand about male bonding. Anyway, watch the vid, it is sensual, romantic AND sporty!

Okay, now we get to the gothic darkness. Most guys like to see action films or trailers for films like Aliens or Predator and watch horror films going “Yeah, get em, yeah!” But you show them the trailer YOU like, for instance one about the deep darkness within the series Elfen Lied, and how your breathing gets quicker as you watch the girl walk naked toward the police, her mental powers ripping out their hearts as she approaches, their bodies thrown aside, and you are getting a little sexually excited huskily whispering; “Darker, make it darker!” And these same guys just turn and look at you with this really freaked out expression and say things like, “I am NEVER falling asleep while around you.” Anyway, if you have ever felt that it would be nice to see the entire city burn even if you were in it, then this is the trailer for you. Or if you want to find out WHY God never once answered my daily prayers for the power to move things with my mind, watch this video. And have a nice day……nice.

Sunday, March 11, 2007

an author interview plus lesbian bikini lines and my attempts at "wheelchair slut"

I found out recently that Changing Hands Bookstore in Tempe, Arizona really like my book Zed. It looks like such a cool bookshop (over 100,000 titles) that I wish it was near me; for example they have a “Graphic Novel Bookgroup” – now you are talking! They just did an interview of me for their website Page 23, a site to encourage people in their 20’s and 30’s to read more books. The interview is here and honestly, has a lot of information about my life view that I’d rather people didn’t know, so please don’t read the following extract:

How long, I wondered, did people want to spend in one building? Not that long. So I trimmed the book into a sort of "book cocaine" (278 pages) so that people could read it in one sitting. Then hopefully go into the bathroom, look at their face in the mirror and smash their head forward, shattering the glass: a possessive reading experience (leaving claw marks around their eyes is good, too-- whichever!)
Changing topics somewhat (but still about me, me me!), Yesterday Linda and I went for the first time to integrated swimming, which is a time set apart for people with disabilities. From my questions and the stares from the staff, I seemed to be the first person in a wheelchair that had ever shown up (in my brand new wheelchair loaner, which I call “Tank-lite”). As in all things in my life, there was the practical side, and the erotic side. The erotic side was all that time before we went to go swimming when we shaved body hair like mad, with special attention given to each other’s bikini lines. Then came the post shave lesbian bikini line pubic hair check on each other under the scented candles. Tenderness and tweezers were key and and it was pretty much identical (but with less people watching) to this one minute extract from the anime High School Girls (I’m the one with glasses who does the moaning).

Of course, the first practical side is that if you spend a long time using up your energy on getting ready to look femme fatal before going swimming, and you have a heart condition, you may be pretty exhausted by the time you actually GO swimming. But I guess lying like a beached dolphin gave people more time to admire my amazingly smooth body (damn, I've just been notified by email that my feminist creds are suspended...again!). Too bad I was too tired to try and come up with some excuse to do the splits (Hey, I do all that work down there, someone better appreciate it)

The good news is that I sink like a stone. Buns of steel – I got em, let me tell you; with all this nausea and superfast heartrates means I have less fat than before. Even with two floatation devices while doing laps, I was challenged to say above the water line (which most people who like breathing say is important). The second thing I learned was that I can experience syncope in the water too (syncope is fainting or losing body control). It was pretty much the classic hypotension stuff; I swim two laps, I stop to rest, wait 30-60 seconds and “gee, why did it get dark?”

I had assumed that the Life Guards at a swim for people with disabilities would be a little more aware. Like when a swimmer who has TOLD them she has a heart condition which causes her to pass out (and told them her oxygen location) is floating face down on float board in the water.....maybe, maybe, you should ask her partner who is trying to hold her head out of the water if she needs some help. Just a tip. The irony was that the other half of the pool was full of staff training OTHER lifeguards how to help someone out of the water and into the recovery position.

Anyway, while the staff are okay to have me back anytime, Linda’s Law says that Beth is forbidden from swimming during the week until she finds a (female) swimming buddy. She is persecuting me just because I have a fabulous body that sinks FASTER than a rock, and also I lack the good sense to call for help before floating to the bottom. Honestly, I’m just really polite and don’t want to be a bother, is that so bad?

In the changing room afterward, I was overcome by a 'sexual attraction anxiety attack' that had been building all week and was somehow set off by the women streaming past in bikini’s (or less). So, in front of the mirrors, I was trying to get the top tighter, the cleavage displayed lower, the hair bigger – basically I was going for a “wheelchair slut” look which tried to say, “Come on you (insert gender and legal age or above here), can’t you see I’m hot and have a full canister of oxygen....I don’t care if you look at my breasts. I WANT you to look at my breasts, just stop looking at my damn wheels.” It did not work on any level I could detect. What our cabby on the ride home did want from me, him being a Santa Anita racehorse betting junkie was that I give him some idea of who was going to win in the 6th (seriously!). Besides his erratic driving habits of writing and pulling out folders with racing percentages on them while the car was in motion, he also said things like, “See, that’s what makes me different from other gamblers, I really limit myself to only $5000.” So, wasn’t looking at my boosted boobs or skimpy top but did tell me that racing horse, Angel Cup’s trainer had a 13% winning percentage on maiden horse races, “which is not so bad, right?”

The day ended by being smitten by God. By the time I went to bed, I was having uncontrollable spasms under both shoulders as well as extreme fatigue. Maybe those last four laps doing the butterfly were too much? Three hours after going to bed, Linda woke me from a nightmare which continued after I have regained some consciousness (meaning I see both Linda but also the nightmare replaying), and we find out....I can’t move. I can raise my head a few inches, and have a little strength in the elbow of one arm down, but that is it. I’ve been exhausted before, but to not be able to move? Linda has to haul me back into bed, then lift me up, so I could drink and then she puts me on oxygen until I could feel tingles in my legs and move my toes again. But even then, it would be about an hour until I had enough strength/movement to roll over. Scary to have to lie there, thinking about complete and total dependence on someone else, even to have a drink. I am sure I had deep and profound thoughts about the nature of mortality instead of “damn, my nose itches” and “damn, Linda’s already fallen back to sleep.”

Luckily by morning, I was a weak and shaky but a fairly mobile version of myself, so I put the rethinking of the argument on the power wheelchair back in the “that’s not me” box. And everything else about that experience went in the huge box I keep in the mental basement called, “total denial” (It is big, black, metal and makes weird groaning and moaning noises....too much jammed in there I think). On the plus side, all that exhaustion has made me even slimmer, so I am bikini line smooth, with a taut, toned and Barbie-like body (in that, she is unable to move without assistance). I’m going to figure out how to make that work for me.

Thursday, March 08, 2007

Lesbian goth, gothic self harmers, cutters & a love story

Okay, you are a lesbian goth, which means like me, you know all too well that implosive balance between destruction and self destructive. There is something inside that makes your whole body ache from the emotions that rip through you like a human conduit. And yet, they don’t leave a mark. And yet, no one can hear you screaming. Sound familiar? I don’t put on mascara tears because I’m really smiling on the inside.

I’ve been watching the rare goth lesbian beauty in the video Overload (Created by two Germans; the country that invented modern Goth). Let’s say her (ex)boyfriend didn’t take her announcement so well, let’s say that with her cream white skin, black hair and red lips she rips the hell out of her room wearing her all black pumps, stockings, pvc slip and gloves. I am torn by my desire to BE her, or just be there stroking her raven’s hair: “lost and alone, but I still keep proceeding on…times running out, feel like I’m walking upon a wire, headed to the edge…I’m getting ready, I’m getting ready to explode”

Lesbian goth right? Hmmm, let me take a stab here......self harm? Cutting? Oh it’s not just experience talking, when even straight goth girls are cutting four times more than their pop crowd counterparts. So you throw studies showing the lesbian/bisexual self harm stats in and they might as well just start including Polysporin anti-infection cream with your mandatory guidance counseling sessions. Cutting and me? Let’s say incident with a carving knife at the age of five made my parents really nervous to have me around knives. My baby-goth tendencies came out a few years later when I became a “biter”; of those kids who when pushed over the edge tends to bite. I, however, only ever tried to bite one place; the jugular. Many was the time my older brother, having teased and tormented me just one too many times would have his mocking laughter turn to screams for my parents as he held my arcing body back while I twisted and strained closer and closer to his neck. My parents always reached us in time. They tried to get me a stuffed animal to rip the throat out instead. “It’s not the same.” I told them after a few bites.

In the UK, “self harmers”, or cutters are turned out of medical centers, “It’s just a cry for help.” This really is the reasoning to not take it seriously (in that it’s not a “real” suicide attempt)? That makes as much sense as the Coast Guard saying they are going to ignore all S.O.S.’s because, “they are just a cry for help.” – I mean, duh! We are not going to help because it is a cry for help? Anyway, one time I went to my clinic for a chest pain and the doctor wanted me to take off my top. I forgot that two days before I had carved “Mea Culpa” across my lower ribs (Mea Culpa is latin for “My fault” or the confession of one’s innate sinful state). The doctor listened with the scope thing, did some taps and ignored the cut words entirely.

There would be, you would think, no representation of romantic lesbian self harm cutting couples. Not so. Maybe not in North America but in Japan the anime/manga series, Loveless has a couple, Yamato and Kouya; who, finding each other, both believe they were the only ones to feel they way they did. In Loveless, couples battle with a form of word magic, where one does the battle and the other is the “sacrifice” (Yamato). Kouya cuts herself so that she and Yamato share the same pain; as each battles feelings that they are weighing the other one down (gee, trust issues, isolation, feelings of low self esteem…imagine that?). I’ve been watching this AMV cut of their relationship a lot recently. In a classic line that should be the self cutter’s motto, bleeding while falling into the Kouya's arms, Yamato says, “this isn’t pain.” Yeah. It’s only on the outside.

Linda, my partner, stayed with me through the worst of my cutting days. She hated it. She loved me. She knew I could only resist so much. Until eventually I began to scare even myself. For each cut to count it had to be a “bleeder” which meant blood must visibly flow from the wound. It got to the point where five bleeders weren’t enough, then twenty, then sixty. One time, in a obsessed fury of self hate I cut myself 211 times, all bleeders, on every part of my body I could reach. Linda got a plastic drop cloth, hid the knives and then took a picture of me shivering naked on this plastic dripping blood. I assume that was to show a doctor, but with Linda and her pictures you can never tell. I asked for professional help, and was put on a 18 month waiting list. I found people to help me anyway and started trying publically, with support, to live every day without cutting. That was three years ago. I’ve had a few stumbles and one big fall, but I was getting on with getting on. I dunno why for some the cutting ends when they turn 21 while for others it goes on and on. Dumping some of my historical baggage helped. I offered to high schools to come in and drop my clothes as a warning to what happens (like to your body once those scars don’t disappear anymore) if you don’t seek a bit of outside help. I think it was the lesbian going to classrooms and taking off her clothes which got the administrative thumbs down on the project.

Of course now, what with my life at the whim of a dodgy heart; a life which seems out of my control and one is which I now really AM dragging Linda down, the thoughts of cutting have been coming back stronger. My recent counselor, Dr. W, asked me why I cut. I told him that I cut to write my hidden story where everyone could see it. The skin was my canvas, and because my struggles and pain were invisible, they were ignored, so I wrote them in a way so everyone could share. “The scars” I told him, “tell the other side of the story of my life.”

He was silent for a moment and then said, “So, you don’t really fall into typical classifications then.”

I wear what I want and maybe I am wearing it (and those hair colours) to force you to look at me. Or maybe I just like a little skulls and fairy fashion now and then. And if I get those knife holding leather arm gauntlets, then sweet! You really will have to watch how you treat people in wheelchairs. But goth lesbian cutters, ex-cutters, and battling self harmers do fall in love, do stay in love, do find a life, do value what dealing with pain taught them.

Just one regret, that I didn’t get a final chance at my brother’s neck (I really should have snuck in while he was sleeping!)

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Tuesday, March 06, 2007

A stop at the Pee Shop and an argument over power wheelchairs

Today’s third stop in my eight hour medical appointments marathon was the Pee Shop. Here in Canada things like bloodwork, urine samples and such are done in separate “medical lab offices.” My doctor had given me “one more” urine test to try and find a biological cause for my heart problems, so I rolled into a packed lab waiting room with Linda holding the door.

“Take a number” the red haired female tech in her thirties told us.

“How long will it be?” Linda wanted to know. Twenty minutes. Linda asked me, “You want to wait?”

“Not to pee in a cup!”

“Oh,” the tech looked up, “Urine sample, just a minute.” Linda handed her the form.

After finishing writing the tech woman looked at the form, “This isn’t for a urine sample, this test requires you collect all your urine during a 24 hour period.”

“What?!” A look of horrific disbelief is stuck on my face, “That can’t be a real test.” I told her, “You’re just collecting this stuff and selling it on Ebay to Japanese men aren’t you?”

“Oh it’s real,” chimed another female tech who was staying to watch, “Just be glad it isn’t the 72 hour stool collection.”

After a few blinks over that image, I continued. “All of it?” I asked the red head in disbelief? “And I just bring it to you?”

“We give you a four liter jug.”

“A jug!” I mimic holding a jug and look down between my legs, “How am I going to get that in the bowl?”

“We give you......” She looks at the mass of people behind me, some as few as two feet away and said, “I’m going to collect the kit and then I’ll explain everything.”

While she’s away, I ask the other female tech, “That 72 hour stool sample thing isn’t real is it?”

A woman’s voice from the people waiting to be called behind says emphatically, “Oh yes it is!”

I tell Linda, “I know two good reasons I am not becoming a medical tech.”

That’s it, you want to know how it is collected, you take the test. And if you see someone on ebay selling “lesbian urine,” you let me know.

I also had a two and a half hour seating clinic today with Janet, who seems in a permanent slightly manic bipolar state. She got my story, and is working with me to get the right wheelchair with the right body fit. She referred to me as “an acquired taste” before later making fun of me while I was sucking oxygen laying down. She had been trying to convince me that maybe, with my growing mobility issues, a scooter (look of horror on my face), she changed that to......or a motorized wheelchair might be better. I was so animated that every time she started to say the words, “power wheelchai…”, I would cut her off with ANOTHER reason why power wheelchairs were not ME. So animated that I ran out of oxygen and keeled over in my chair. They had to move me and get a doctor. When I could see again I was looking past the doctor to try and continue the argument and scrub the words "power wheelchair" from Janet's mind. Except the doctor kept leaning over me saying, “Shut up, deep breaths” I would try to say, “No.....power wh..” The doctor would put her finger over my lips, “Shut up and breathe!”

After several minutes, “I used to have a little OCD.” I whispered around the oxygen.

“You! OCD! Gee, I never would have guessed;" Janet said over me with glee, "obsessive athlete mentally, I know about that, and I’ve got two kids with OCD, so you think?”

Janet is “force of nature” who coaches the Paralympic swimming team (and is off to Nationals in a few days) besides her two kids and helping people like me get mobility. She promised to find me a volunteer from a special program who will go with me to the pool so I can do swim fitness with oxygen as well as help me in the change room. She had actually seen me out on the Oceanside Park on Sunday and told me should couldn't help fixating on my bad fitting loaner chair and kept saying to herself, “Don’t stare at her bad fitting chair, don’t stare at her chair.” (Okay, now I REALLY want a new chair). After trying one of the titanium ultralites, she was telling me, “Oh, we gotta get you hooked up with wheelchair basketball, the guys are going to love you.” I am thinking, “Aren’t I in a wheelchair to LOWER my heartrate? Wheelchair basketball?”

“Can I wear my oxygen while I play?” I asked.

“Hmmmmm.....we’ll work on that, some of the older guys would freak a little.” She said, “the younger people would be fine, but you know, the older guys.....”

Then later she gives me a lecture (while somehow looking at Linda instead of me) on “moderation” and “taking breaks” and how when someone from transit comes to do the one to one instruction on riding the bus I couldn’t do “any tricks?”

“You mean wheelies?”

“I mean passing out.”


Before leaving she gave me tips on how to use my wheelchair and disability to milk people to get my own way. But then this from a woman who on her first day on the job told “Blinky” (jokes blind people tell about each other) jokes to her aghast coworkers to a totally silent break room. “But they got used to me,” she said, then thought again, “Well most of them.” (yah, and she thinks I’m an “acquired taste”) But we got on really well and I’m glad she the one doing my wheelchair fitting, as long as she does it by Tuesday (her being away at Nationals will delay things a couple weeks she isn’t done by then), “Oh, and I thought you cared about me?” She teased me, “But no, you’re just praying my plane doesn’t crash so you get your wheelchair.”

I also have a new sports doctor as of today. She doesn’t talk much but when I said, “Are you interested in the case” she said, “Yes.” With a look like, “Who wouldn’t be interested in such a bizarre case?” I told her that if she wanted to see the rapid pulse progression I would be happy to do a stress test (you run on a treadmill which gets ever faster) until I passed out. She declined.

“Yes, but you could see it first hand.”

She appreciated the offer but stated that while possible it “might not be the safest course.”

Geez, I’m just trying to be helpful.

Monday, March 05, 2007

lesbian commitment rings, wheelchair wheelies & Jesus coming to kill me

It is hard to figure Linda out sometimes. She came in Friday night with the newspaper; “I wanted to let you know that two athletes died suddenly this week.”

“Thank you.” I said, “Uh....both from heart failure?”

“Mmmmm. Acutally three, but one was shot in the head in the back of a stretch hummer.”

“I don’t think that applies to me.” Linda nods. “And the others were heart related?”

She nods, “One was 26 and fell down dead the next morning, the other was in his 30’s and fell dead during a game.”

“And you came in here just to tell me this?”

She nods and then walks out. Mmmmm.........okay, thanks Linda.

Saturday was our first major wheelchair outing; we were going so I could build muscles, we would see if I kept fainting, what my heartrate was like (if using a manual wheelchair was going to work) and find out what problems might occur and help me if I couldn’t wheel back by myself. The whole trip took over three hours and was a mixed bag. I learned a lot about pavement. For instance, almost all pavement slants either slightly to the left or the right depending on the street (unless you are in someplace really flat like....Kansas?). When you are pushing the Bethmobile forward, the slant will also cause you to drift one direction or another. Then throw in tree roots throwing up sidewalk, potholes and a slight uphill and Beth begins to realize the sidewalks she walked over for a year thinking of them as “flat” was a pedestrians point of view. Now I have the point of view of a self propelled ball bearing. Also have to say planting trees right in the MIDDLE of the sidewalk might be great on some “green space” planning board but when you are going downhill using friction on your wheels to avoid these faceplant wheelchair traps, a PS2 obstacle course game seems tame.

We went to the library, where I sucked oxygen (and learned to “take breaks”), then to Hills Native Art, the Mall, up to Subways for lunch, to the bike store and home again. That is 40 blocks of rolling in all and about 2.5 hours longer than I could have lasted standing up, without one episode of passing out and only one use of oxygen. So, wheelchair seems to be a success.

Over the years Linda has sometimes complained that we never got matching rings to show our years of commitment to each other (thirteen!). So with a few weeks planning, I took her to Hills Native Art, which is THE place in North America to get genuine native artwork from living legends and multigenerational native artist families. I had put some rings on hold previously but we looked some more and in the end found rings that suited each of us. Linda was totally surprised, because I had used my final stash of squirreled away money (on the basis that medical costs are going to consume our lives for the next while, so spend it now!).

Linda got a ring from the same artist who did her bronze and silver bracelet I got her for her birthday. He is Don Lancaster, now in Alert Bay and a member of the Kwaguilth Nation. Her ring has the symbol of the wolf which is known strength, intelligence and devotion and is the family oriented symbol of West Coast culture. That seemed a pretty good match.

My ring which is tapered and slightly thicker is from the famous Haida artist Alvin Adkins (the Haida are probably the most famous of the native artist nations and traditionally only use black and red outside of metalwork) from the Queen Charlotte Islands (Islands far out to sea just south of Alaska; we visited them 8 years ago together). Now I like my ring, but it shows the hummingbird. “This isn’t by any chance a goth hummingbird that sucks nectar from people’s eyes while asleep?” I asked. No, I was firmly told. The hummingbird is a symbol of joy. Hmmmm, that didn’t fit. But wait, it is also seen as a companion of difficulty. Yes, I think we have a winner! (Maybe it was a “companion through difficulty”, whatever, Linda says, “a difficult companion”). Anyway, we now have hand-made one of a kind rings to show our commitment to each other. Linda is happy, I am happy. Then I almost face planted right outside the store.

See, a loaner wheelchair like mine has foot casters which you rest your feet on. Only, the street Hill’s is on, Government Street, has been redone in brick with long and deep sloped gutters for the rain. So when Beth rolls forward at speed to catch the streetlight, the chair rolls down, the footcasters hit the bottom of the gutter, the momentum of the chair continues forward lifting the chair (and me) entirely off the ground in a nice arc which gets pretty exciting for both those IN and outside the chair. Am I supposed to be looking STRAIGHT down at my feet?

Most streets have these “token” wheelchair inclines of which many are great if you want to spend a lot of time flying through the air (see, when there is a two inch gap from the street to the “ramp” you get to fly going down it and trying to come up on the other side of the street), the solution to this is a “wheelie” where, as your weight is over your wheels, you lean back as you give a hard push, lifting your whole foot assembly up in the air as you move forward over the bump or down gutter and then progress on. Doing wheelies has a steep learning curve, particularly as you tend to have cars behind you waiting as you try to get over the damn curb. I tended to do about 70% success rate but never actually got thrown from the chair on my failures. That 70% is at a stop, still working on doing one while in motion.

One thing I learned a lot about from my day was people. Some are cool and many are self absorbed jerks who have convinced me to convert my wheelchair to have pointy and spiked bits ala Ben Hur. Holding a door open for someone in a manual wheelchair is cool (particularly when the mall we visited doesn’t have a wheelchair door) Moving while walking so the wheelchair person has a smooth sidewalk which doesn’t involve hitting a bench, plant, telephone exchange box or the many other things cluttering a sidewalk is cool. The guy who asked me how tall I was, that was cool, if confusing (I am about 4’8” in the chair). Talking to me in a normal tone is cool. Talking to me at all, cool.

Okay, uncool: When I push the wheelchair door to the library and six people all walk in it and then stream around me as I have to wait for them to finish using the door I opened, which then closes on me. Staring at me for long periods of time with expressions that clearly show you are trying to figure out exactly why I am in a wheelchair is uncool. Hey you teenage boys, cutting directly across me while I am rolling to get where you want to go so I grab my wheels and slide to a stop.....uncool. People crossing the street who brush past me then step right in front of me while I am trying to wheel across in order to get ahead of everyone else are uncool. And for VERY uncool – the EIGHT elevators I had to wait for because people who didn’t want to walk to use the escalators at either end ran around me and jumped on the elevator before I could wheel forward; that includes the elevator that opened, said, guy said “No room” and hit the “close door button” (I was stuck on the third floor for about 8-9 minutes). Also, when I did finally get on an elevator, only one other woman would get on with me (about 5 more could have gotten on). “Do they think I am going to start flailing around?” I asked her. She looked away. That was pretty common. You want to get a 10-15 foot radius without people, just put a wheelchair along a wall and start sucking on some oxygen. People can’t wait to get away from you. My father drives transit in a wheelchair accessible bus and he says he has to hold out his hand to stop people as they crowd onto the bus, swarming past the person waiting in a wheelchair and then he tells them, “You have to back up, the wheelchair passenger has priority.” They blink and look confused and eventually, with some grumbles, back up to let the wheelchair passenger on.

So it was an education. I remember back in the UK, I worked in a cinema multiplex and we had some regular wheelchair patrons. Most of the other workers didn’t want to go near them, so I, after asking the first time if they wanted help (No was the universal answer) would walk beside them talking about films and what they had seen. I remember being proud of myself because I had pushed my comfort zone and talked to people in wheelchairs, and did so like they were normal human beings. I’m feeling pretty shitty about those feelings now, and of course the irony of being one of “those people” is not lost on me. As I said to Linda, “Why can’t they (people) at least be a bit courteous, I mean, I’ve been staring at their butts all day and I can still be courteous?” We stopped at Subway for lunch which had a severe angled ramp inside to comply with wheelchair regs, but no way to open the door while on it. Classic.

I didn’t see anyone else out in a manual wheelchair, but I can tell you, I am already dreaming about my new rigid one I will be fitted for on Tuesday. There are so many things I want to change about the one I have (make it lighter, lighter!). We stopped at a bike shop and had the tires filled to full pressure for the pavement (someone decided throwing a bunch of pebbles in all the pavement would make it “artistic” – also bumpy). I really am trying to be positive (you should have heard Linda who came home with a headache from the stress of seeing so many people leap in front of me to save themselves .05 of a second). It is just that before, what people saw was big ole me, and now I am defined first by the chair (like the people who talked to me in an 8 year old vocabulary).

We just have to redefine that perception somehow, like today, when we went to the Oceanside park where people go on weekends to walk their dogs. The dogs loved to come sniff the wheelchair and the owners loved to talk to me about their dogs so we met a lot of people.

But one thing is I am building a whole new muscle group, a whole new incredibly painful muscle group (last night on pain pills I was still hallucinating from the pain and believed that Jesus was trying to kill me. At 4 am, our neighbor started moving stuff in the room next to my bed and I started clawing Linda almost screaming, “He’s coming, He’s coming to kill me and you know he can walk through walls!” – it was a long night). During the outings my heart rate topped at 150-160, and after taking more breaks was a standard 130 bpm or less. This means I am now mobile, and will not faint, and will not go into oxygen deprivation and will not die (so a plus from the walking which now has those small side effects). I do however have to kick one annoying habit. When the chair, due to the tilt of the pavement, slides one way or another, I tense my legs, or thrash them from side to side. This is the wheelchair equivalent of the first two years after I got my driver’s license when I would drive and my mother would be in the passenger's seat beside me. Her feet never stopped moving and I could audibly hear her foot slamming the invisible “brake petal” against the floor. She also used to hold onto the side of the door with both hands. Anyway, I need to learn to relax the legs, and let the upper body and arms do the talking, no matter how much I tense my legs, I still won’t stop sliding toward traffic if I don’t manipulate the wheels with my hands and arms.

So this week I am going to try and go out every day; learn how to get on and off buses, build up those muscles in my arms and wheel smarter, not harder (like take a bus to the mall, wheel on nice flat floors, then take bus home). It is a new perspective and life, and not one I would have imagined four weeks ago; and hopefully they will find what is wrong soon and solve it and I will walk and run again and this will a part of my life that gives me an insight and empathy with the 1 in 200 North American’s in a wheelchair. But until that happens, this chair rocks (and sometimes feels filled with rocks....heavy rocks), today I wheeled myself to have lunch with Linda at a restaurant that I couldn’t walk to unaided even a couple weeks ago. So that’s a better life right now, one where I have choices. Please don’t take away my Goth card again but really, I do LIKE getting outside once in a while.