Thursday, January 31, 2008
This week every day there has been calls to make, and appointments and calls from the medical mafia. I was unable to get prescriptions and give info to my doctor earlier this week because the clinic was closed due excessive construction noise, and this is a clinic for homeless.
Twice I picked up the phone and was simply told a time and day and where to appear, usually within two days. Yesterday afternoon I was told that there would be a meeting in MY apartment with the VIHA nurse and the care giver manager to “determine the future of my care” and that “according to my responses would dictate what care I would receive.” No, she couldn’t say anything on the phone about the specifics of the meeting except it was the result of a group meeting of all interested parties. It was? I wasn’t there? I was told my doctor was. Well, one advantage of Cool Aid is that when you call with this particular tone in your voice and say, “I NEED to talk to my doctor”, two minutes later, you are. No, he wasn’t at the meeting, he had sent my diagnosis but this was a session cooked up at VIHA. So now, the female manager of the care giving organization who called me a liar when I complained of a home worker making fun of my speech, is coming to a meeting VIHA has called at my apartment, and if I don’t host it, my care is threatened. Can you feel the love, I can?
Yesterday, I was flagging, slur-wise, which is when I ended up spending three hours on the phone until no one, even Linda could understand what I was saying. After sleeping and a few more hours staring into space, I put the gun of the BBC to my head: I had made a promise and I WOULD make that final rewrite and edit. Writing is the last thing I have where I can make a focused and crafted effort. I was, on Tuesday for example, except for the TWO appointments, sat every minute in front of the computer, writing and rewriting. And for what? In the last three days, I have had limited to no use of my right hand on two days and couldn’t speak intelligibly on one.
Wednesday, finished my piece, posted at BBC and then just stared into space.
Today, Thursday was my “nerve conduction” test which, I kid you not, is a little taser device, they put sensors on the end of your nerves and then shock you with an ever increasing voltage. I am not sure if they want to see how much of your leg, arm, body spasms, but that is part of it. Of course, at the beginning, starting on my dead(ish) foot, I asked when they were going to begin. They already had. We’ll turn it up, she said, as she applied the taser to the bone of my ankle. Yup, they just kept turning it up. The last volt might not have twitched my foot much but had me screaming. Literally. Guess applying a taser to your ankle bone hurts. Then we moved up the leg, and then up again, and then she jammed up right under the knee. “Often people find the pressure I apply to be more painful than the voltage” is what the tech said BEFORE the test. I assume this is how she likes to calm people down. The top voltage on that one hurt so bad I was actually laughing, “Do it again!” I said, as Linda tried to hold down my shoulders because I was laughing so hard. Linda explained to the tech, “She laughs when she is in extreme pain.” I am not sure how much conduction made it down to my feet but golly, volts of electricity jammed to the under-bone of my knee cap still hurts. Should I be happy?
Then we went on to the hand, was this when I screamed again? I can’t remember. I just remember she kept saying, “We don’t have to continue.” Which was very creepy as that is the phrase torturers use. I just didn’t know what I was to confess. But, I’ve been tortured by better than her. “No,” I said, “Bring it on.” My palms were sweaty. That one thing they never tell you about torture, it is, at least for me, a sweaty business. Like, in full body torture, they have to towel you down in they want to keep their grip. My torso didn’t sweat today, but then…it doesn’t.
Anyway we finished the other leg, and Linda helped me dress. The scientist part of me was hoping they were going to use this as a baseline and repeat it since how could they know how much conductivity I had before? See, all humans have variants, even between limbs, like the way two trees grow different branches in two different ways even next to each other. The non scientist part of me wanted nothing more to do with this creepy residential house perched literally on the edge of a giant cemetery where the bottom floor had been converted to conduction tests, 20 odd miles away from town (and a hospital?)
I had time to get home, gear up and head off to Triumph, for my 2:00 meeting. Anytime a meeting starts with M, my case manager saying we needed the Triumph manager in to “clarify things” I knew that wasn’t going to be fun. This is because I noticed that on meeting two or three I was given a page which said all my information I gave at Triumph was confidential and would not be passed on to government agencies. Then I noticed, in the small top print of the 14 pages of “homework” where you put down all your medical and personal info including hobbies and interests and who knows all else, it said, “All information will be forwarded to MEIA” (the Ministry of Employment and Income Assistance). I pointed out that these two statements seemed at odds in one of my first meeting with M. Today the manager came to “clarify”: that when my time with Triumph ends, my entire file, INCLUDING that homework, ALL goes to MEIA, which is subcontracting Triumph. “Ah!” I said.
“But if we don’t take notes and find out your specific needs medically and personally we can’t assist you.”
Then there was that I was looking for a government job AS WELL as working as a writer, which meant that maybe I should be kicked to some different type of Case Manager (like Job Facilitation Case Manager?), who would help me on the grant side. What? Another case manager? I pointed out I had once held five jobs WHILE I was doing my Ph.D, so doing writing and applying for a part time writing or researching job in the government didn’t seem that ODD to me. Yes, but usually they try to stop clients from pushing forward too hard and ending up putting things further back, disability wise. Me? Push too hard?
Then we get to Dragon 9. You know the whole software where I speak and it types, which considering two days with only one hand control seems useful. The problem, the tech support is a different ministry (actually paid by the secondary school system – don’t ask, it is just one of those things which happens over the years, students with disabilities go to college then the only people with tech knowledge is this sub group of the BC secondary school system), and they won’t give the software or integrate it into my machine. They WILL give me a NEW computer BUT it is a shell with MS office, Dragon and…that’s it. And I have to sign a form saying I will NOT put any other programs on this computer (and they won’t give the Dragon disc, only install it, if it crashes, I have to courier the computer to Vancouver for them to reinstall, every time). I explain that a) Any desktop is going to be my home AND work computer and have high spec requirements and programs on it for my work (like photoshop, two other photo editing programs, video editing programs, etc). B) If I can’t install dragon into my wireless laptop connected to my home router, then what use it is? When I am in a hospital bed I can speak but then I can’t do any work (no disc for dragon 9... no work)? And c) I don’t put anything on my computer (except some freeware) that I don’t have a disc of, when my computer crashes, I need it up, reinstalled and running in one day (and I pay geeks to do so).
So, they are thinking of getting Dragon Profession for me another way (as professional has all the medical speak I need for disability writing). The problem: the “official quote” they got for Dragon Professional is $1600. I was like, “What are you smoking, it is $759 on Amazon US, and with our dollar at par….?” I told them that was why I have a US PO box. Anyway, that’s as far as we got except the manager, who moved from Ontario, when I was describing some of my writing pieces and the software I use she said I reminded her of DAVE HINDSBURGER.
Talk about a freak out time, “I know Dave, he’s coming here soon.” It was small world time. What did I think of Dave, she wanted to know? I said that since he wrote recently that a piece I wrote was one of the best pieces I had ever done and my novel was a favorite of his, um, I kind liked him! She said she could see why. (hey, I’m vain, I never denied it)
Okay, you are long overdue thinking, “hey you put up, “In my Time of Dying” as a title and you are gossiping about Dave from the blog Chewing the Fat? Well, what I failed to notice when signing in was that I had very little hand control, I couldn’t sign my name in fact. Indeed, I had almost no hand control at all on either hand. Well, with the three people in one office room and my autonomic system taxed from the taser fun an hour or so before, I wheeled out, and got to the front and was going to book next appointment when my head flopped backward. Not back, but like, looking down at the pavement tipped so far backward, along with my torso and while I thought, “I probably should do something” my arms followed, tipping my chair over backward. I didn’t move my head at all, just thought as I hit, “Oh….I can close my eyes at last.”
Of course it is never that simple as that. People are shouting your name and I heard someone say, “We have to call 911!” Okay, that got my eyes open. Only I had no vocal or hand function and my frantic freaky moaning sounds sort of caused the opposite effect, they couldn’t wait to get on the phone to 911. Crap.
At this point some off duty military officer came in and took over and was the only one who recognized my gesture of putting two fingers toward the nose. “She wants oxygen.” He found my tank and got me on oxygen and got a bunch of people to put me upright so by the time ambulance arrived I was upright and able to make a cross with my two arms and a hissing sound. Well long story short: after extended time, I got some distorted speech back (enough to make the EMT’s think Triumph was a “speech therapy center” – ha!). I authorized Triumph to give the EMT’s my doctor’s summery. And they gave me cold packs and I cooled my core, which helped the blood to my brain, so I could speak. However, they keep trying to open my packs and really resisted the way I do it (I grip sides with non-functioning hands and use my teeth to pull the zipper). Anyway, I said, I am sorry, about 40 times. My God, would you want to go thinking, “I’ll get some work to get off depression” and see the entire lobby of Triumph filled up with EMT’s, gurneys and a woman slurring and drooling on herself? No, thought not!
Of course my heart felt like it was trying to implode or explode, and to every question from the EMT’s I would smile (the side of my face that did) and go, “O…KAY!” in slur speak. Like they ask, “You sure are clutching those cold packs tight, does your chest hurt?” “O…kay!” Like I am going to say my chest hurts to an EMT. I kept offering them cold packs from my chest and they kept saying, “Uh….no, I’m married.”
I got out of there and military guy walked me home (he didn’t push, I did I myself). And I pulled myself into the hospital bed and slept and slept and peed and slept and then I woke up and couldn’t move my right side again. Linda had to help me out of bed and move. My diastolic was back up at 110 (oh great, another problem) and thanks to the electricity today my resting heart rate has been 108-110. Which I think is high, but the EMT’s didn’t. 110? RESTING heart rate? Am I doing cocaine?
But the fact is I am propped up in front of the computer and it is just TOO MANY days in a row of losing speech function and hand function and body function and my vitals and to hell and gone and I am fucking exhausted. Even though I slept many, many hours as Linda says, “Well any time the EMT’s come means it is going to be a day you crash.” But didn’t I crash yesterday too? And don’t I have two MORE meetings tomorrow?
So this is what having a fairly probable terminal diagnosis is like: there are days and hours and if you are lucky weeks when you are like, “Oh, the doctors are wrong, I’m going to last for years.” And then there are days and weeks when you feel the pain and it is kinda stable and there is like one emergency a week and you think, “I could hang on a few years this way.” But in the back of your head you are thinking, “Maybe I don’t have the terminal bit and they will find a pill and this is really as bad as it will get.”
But then there are the times your system crashes not once but two or more times a day. And yeah, you use the chair and you can’t grip normal utensils but also you use more oxygen in two days than you did in two weeks and every day it is just worse and worse and you lose more and more function. You are spending more and more time in the bed and are becoming too weak to get out or in it yourself. And when you overhear the EMT’s talking about they saw a case like this on TV last week and how tragic it is, and they look at you and you try to pretend you didn’t eavesdrop and smile (only half of your face doesn’t go up). Then they get the freaky misty eyed, “plucky little trooper’ look. And at home your partner tells you than she has been so burned out from seeing how bad you are and doing care-giving this week and how she told someone she really doesn’t like at work how I was terminal just because he was standing there. And you can’t sit upright, and you just got up from many, many hours of sleep but are SO tired. That is when you feel it in your bones. I’m dying.
Tuesday, January 29, 2008
So, yeah, the first few months, remember: you are diagnosed but it doesn’t have to stop you right? So you do “a bit of gardening” which ends up with you dropping the TV remote 10 times that night and waking, your hands in painful claws asking, “What the hell happened to me!”
What do I mean by ‘Limits?’ Let us be clear, this isn’t able bodied (AB) world anymore: you will be in pain, restricted in movements, activities, fatigued, weakened and other indignities. That has nothing to do with “pushing your limits” or anything like that, in Chronic and Neuro world that is called: “Normal Life.” What I am talking about it are the invisible and individual limits; like a parolee wearing an ankle tag but one in which the penalty is often so strong, it isn’t worth trying to push the limits, only to try to safely find and stay within them. AB thinking goes “If I do a 5K jog, yes I will hurt TODAY but once I have done it 10 times, then it will actually FEEL GOOD.”
Chronic and Neuro world is where if you try to do something equivalent to a 5K jog, you will not only feel crap today, and tomorrow, but for some time. And if you keep doing it, while your body may show you new tricks where you end up in ER, you will never ‘FEEL GOOD.’ Indeed, by the time you have done it five or six times, you’ll swear you will kill anyone who tries to makes you do the equivalent to a 5K jog and you will mean it.
Because Chronic and Neuro World living is about self-preservation, and the preservation of the quality of your life. You focus on what you CAN do, and what you know to be the most you can do, or about the most possible, with the least pain or loss of body function, and still be able to do it again tomorrow. Only, you know that you will sometimes HAVE to push that boundary a bit (It’s your birthday!), and yes, you will pay for it. But what life in C & N World means is that you know these boundaries and limits will change, and can change, without notice. And because of that, you are always on the lookout.
The first time I really went out and at it was six weeks into my wheelchair. I had fun wheeling along the waterfront 5K trail and back until I was exhausted. I felt sore, I felt tired, I had loss of function but essentially I felt ABLE BODIED – wow, what a good workout! Well, until the muscle and limb spasms started, and then my temperature fluctuated up and down and my entire bowels emptied in three hours of one crap after another while I was so weak I could barely sit upright. Then the pain hit, so painful it blew past any pills I had and it didn’t go away but stayed for two days, leaving me a rag doll which couldn’t move for a few more. Yeah, what a GREAT work-out!
So, then after a few more trips PAST my limits (“Limits, how can I have limits, I am Elizabeth Freaking McClung?”), I spent a summer playing a little tennis. I had no problems. It was only in the last time out for the summer when I was starting to win. I didn’t want to quit at 45 minutes, so we played an extra two games. Three hours later, the spasms started, “No! No!” I’m crying, “It was only two games!”
Linda is saying, “I think we will have to cut back on tennis from now on.”
“IT was only TWO GAMES!”
This is because I know that later that evening I will be on the toilet. I might be tied there to stay upright and my arms will be spasming and twiching and I will be in agony so bad I will actually scream a few times, and after the 12th straight dump Linda will creep to the door and ask, “Anything I can do sweetie”
And I will grate out, “Do……we…..have…..a…..gun?” And after another hour or so, when I have stuffed myself with chalky substances I will reach a point where I take as many pain pills as I can and am carried to bed because I can’t care anymore if I shit myself, it is just that bad. For two extra games of tennis.
So yeah, you tend to get a good idea of where your limits are, and how badly you don’t want to break that envelope. And each person and each condition and maybe each person with each condition gets to know their personal invisible bean counter and the beasts wait to inflict punishments. Do the doctors? No. Not unless they are very good at listening, and I haven’t found many who are as good at listening as they are at deciding. Do the Occupational Therapist, or the Recreational Therapist or the Case Manager or so many of the people who come able bodied and try to understand what only you know from personal and painful experience? No. What they might try to do is understand if you are lucky. But more often, if you are unlucky, they already have a space to plug you into and a hammer to try and make you fit (in case your experience isn’t what fits that space).
Of course, if you are like me and the idiot ‘in charge’ person has decided that you are a bit of a whiner and you just need to “suck it up” (a real phrase told to me when I tried to explain my specific limitation), I don’t need to get revenge, my body does it for me. Nothing like 30 minutes in an non air conditioned vehicle where I am quickly too weak to reach oxygen and I soon turn a funny green colour, pee myself and then flop over. That DOES get them to pay attention. But then a week after you get back from the ER you get the letter banning you because obviously YOU, the one they KNEW had a disability and the one who suffered is the problem, NOT the person who didn’t listen to you. The phrase, “This program obviously doesn’t seem suitable to someone of your special needs” pops up a lot.
Limits dictate and dominate our lives, we watch them, we know them, and we anticipate them. We realize that if WE, the ones who have ended up taking responsibility for our life and health not because we are mature or wanted to but because we cannot afford the alternatives, miss any little something it is US who will pay the price. We know that in our case, physics is wrong, that for certain actions there is not an EQUAL reaction but a wildly disproportionate one.
And yet, even amidst all of this, you will get blindsided, like this morning when I was woken with all of my upper body muscles fully contracted and my fingers and fingernails clawing into themselves. “What did I do!” was what ran through my mind while I was too weak and couldn’t unclench my muscles to bang or signal and ended up calling weakly, “Help! Help!”
My night care worker heard me and came.
“I’m all locked up!” I said, “It hurts and I’m tired.”
She took in the rigor of my body and said, “I’m not surprised.” (This is why I like her, no running around screaming, just, deadpan jokes). She carried me to the walker, put me on the seat and pushed me to the bathroom. Then she helped me pee, helped me relax some of my muscles, gave me a pain pill and a sedative and got my earplug out of my hand where my fingers had locked, rigor mortis style over it. So I slept and woke up feeling, yeah, a bit like one of the garbage trucks had backed over me. What did I do? I reviewed the day, was it not enough rest, too much talking, you know the mental drill of review, review, make your best guess or in the end chalk it up to “the condition” and just hope to hell it isn’t a new and regular part of your life.
Of my mother’s line, out of 14 people; five people died of a very narrow band of motor neuron disease; one had a motor Neuron disease but died of an accident, I have a MND, at least three people are hereditary carriers of at least one motor neuron disease and wait for it, my grandfather died of multiple system atrophy (all in the 14 people of my mother's father's family). I found this out yesterday.
Seems kind of odd for a 1 or 2 in 100,000 disease to show up in both my mother’s father AND her daughter? Anyway, I have been telling the doctors “Nope, no history of anything in my family” because that was what I knew until yesterday. Needless to say, to find out we have such a tight cluster of rare conditions, all which happen to be interconnected, sort of set me back. Since everyone has been sort of “Wow, this is so unbelievable for you to get this rare disease.” Well, until my grandfather’s brother heard I had Multiple System Atrophy last week; he lost half of his children to motor neuron disease called Spinal Muscular Atrophy. Then we started playing connect the dots and I find that hey, I have a far greater chance of getting these couple motor neuro degenerative diseases than breast cancer or any other type of cancer combined.
I mean I am not sure if I should be upset at the year of doctor doubts and confusion and fighting and the “oh crap it is autonomic failure” moment or whether I would rather have lived my life knowing that I had a pretty decent chance of a couple different MND’s. Too later either way, here we are, I am passing on the info to my doctor, tracing the specialist who diagnosed my grandfather (hey, grandfather and granddaughter get same rare disease….I smell a conference paper!) and I see maybe a geneticist and a muscle biopsy in my future. Gosh I hope those don’t hurt, because using a needle to take a chunk of muscle actually sounds pretty painless to me, NOT!
My head is in a pretty hefty spin, because, hey, why didn’t someone mention something before this weekend, but also, what do I do now? I think this is a case of hurry up and give the info and then wait….and wait…and wait.
One of the last things my grandfather said to me is that I reminded him of his sister. Now it may turn out that we all have or will die of the same disease. Actually, last few days I’d been having the terrors, the whole, “I don’t want to die this way” feelings that sweep over you. And this kind of calms me out.
My grandfather was a very special and important person to me; a person who accepted me as I was; yeah a little odd but that was me. He accepted the things I was passionate about I accepted things he was passionate about. I remember how he couldn’t figure out how anyone could be afraid of a few wood bugs as I would turn over the cut wood in the wood pile with a VERY outstretched arm. “But they don’t bite, they’re just wood bugs!” he would say in this sort of soft wonderment than such a poor harmless bug could cause such LOUD verbal distress from someone (like me).
“But they’re BUGS!!!” I would say before running away and coming back when he told me there were all gone. “Back into the woodpile I bet” I’d grumble with my bottom lip out.
“They are WOOD bugs.” Then as a treat I’d get to drive his mini hauling tractor to haul the wood up to the house.
I guess what I am saying is knowing that my Grandfather lived this, felt this, that when I last saw him, talked to him and he talked to me, that it was already a part of him, it makes me feel less alone. Something odd about that I think that I feel comforted knowing that he did not lose himself, that it was bearable (admittedly he probably wasn’t trying to do boxing and badminton and stuff like that). And I think he had morphine.
Still, it makes it more bearable for me.
Sunday, January 27, 2008
Seriously, sometimes when I am bored I come up with what I call “The New White Paper” (which was Canada's theoretical defense plan for the invasion of the US). I come up with time frames and ways for different powers or groups to successfully wage war against the US (I’m sorry, I mean successfully liberate the US against the oppression. For instance where less than a majority of the population turns out to vote, which must be because of living in a terror state which needs liberation. Or maybe the way Afghanistan was sold as invading for the rights of women, they will invade for the rights of LGBT people). The most fascinating thing about the US is that right now it is much like Japan in WWII; a military mindset but with huge supply lines and without high end production (no current capacity to turn into basic war time manufacturing due to outsourcing, Just In Time delivery and problems like….credit). For example, instead of engaging the US on land, why not target every single oil tanker and start blowing every exposed pipeline (I can point a few (psst-Alaska?)). Does the US really have the navy needed to protect EVERY oil tanker? Then of course, we have already seen how easy it is to isolate US airspace (they shut it down themselves). I mean, the Monroe doctrine was created for a reason; the US cannot maintain supply lines they currently need without near GLOBAL air and sea coverage. Okay, I think I will stop there since I am now deeply on the FBI, CIA, Homeland security and NIC bot lists. I hope the blog checker enjoys the panty shots.
See, this is why I don’t comment on politics; it is not like I WANT the US invaded…well this weekend. It is just I know there are so many people employed to figure out ways to wage war on China and places like that, so who is left to make a simple 12 point plan for isolating, depleting and THEN engaging the US? (one last thing, if any CIA types are reading this, what exactly did you give France to drop that communications deal with China? And did you anticipate their reaction in working toward being the largest ship manufacturer in the world? I mean, they don’t have a high tech communication system and they shot down a satellite – what does that tell you about their tracking abilities? I would like to point out that some of the most effective early resistance against US troops in Iraq was organized by SEMAPHORE!)
Sorry, that got off track, I just loved the idea of that; US has satellites and planes flying higher than anti-aircraft can shoot and navel missiles guided in a mile away with joysticks and high-tech communications and jamming and they are fighting guys who are sending each other instructions using flags. Just seemed somewhat ironic.
Sorry, I used to be a big military geek, well, not actually a military geek so much as collecting data of how successful different types of geurrilla warfare was against different types of military. I don’t collect that anymore; too time consuming. I should think of nicer things, it is just, as far as chess goes, going up against the US and winning is, well, there are lots of possibilities. My last great idea was actually created by a russian scientist before being pulled in “trade negotiations” which was a jammer for guided anything. Each guided missile costs $1,000,0000 – I think the jammer was $500. I was also a big fan of just making the air space completely unusable if I could only find a way to fill it with weightless ball bearings (really bad things to suck into jet engines). I was also a big fan of making an entire airspace combustible. Like I said, I get bored – see now why I should get a job that challenges me.
Gosh, I really have nattered on about very odd things indeed. I should point out that I actually am a US citizen which in previous years would mean that, hey, I may be critical and a little worried about defense, but hey, still a citizen. I think these days it mean I will soon disappear because I have indicated thoughts that are a threat to freedom (read the economist, the world is a fucking soap opera!).
Anyone here see Sicko? I just have to wonder how Michael Moore and so many other people missed the irony of “first class health care” in a facility at Gitmo where even the president has admitted that torture or whatever name they call it this week happens. Hey, why wouldn’t you have top notch health care when even trying to commit suicide at Gitmo is considered an act of “asymmetrical warfare.”
In a completely related thought, I WANT the backwards naming job – you know how when something horrible happens but it is called something else. I want that job. So like, being thrown down the stairs by police due to your religion or race is called, “Prisoner Health & Safety Checks” or how when a plant leaks bleach into your drinking water it is, “Project Environmental Education and Development.” That has got to be the greatest job in the world due to the amount of drugs you get for free.
Oh god, it is time to post the blog. And this blog is supposed to be what I think and live with; well actually, I don’t have any arms or books on making bombs or junk like this, but I do tend to actually think about for example, how many people would starve to death if a 8.0 earthquake hit the LA area (since most stores have to restock food from trucks every 8-12 hours and almost every freeway is sitting on a fault line). I’m a disaster freak, I admit it.
I was in Hungarian embassy when suddenly the guards turned guns on those in line and started to close the doors of the embassy and I had a ticket to Prague. I was with the crowd which was climbing the walls while the soldiers inside starting building machine gun nests. I decided to ask (half way up the wall), “What is going on?”
“Civil War has started…in Prague.”
Ahhh. God, now I REALLY wanted to get on that train but in the end, no stamp, no get on train. Is this the thinking of a sane person. I actually stood UNDER a tornado laughing hysterically until I was tackled and dragged to safety. Same reaction in my 5.1 earthquake; spontaneous laughter. I was in the doorway and things were flying off the shelves and I was having a blast, I even shouted, “Um, I wouldn’t stand in that GLASS doorway.” Sorry; I’ve been in a hurricane at sea and two on land; one I just rolled over and looked outside and said, “Wake me if it upgrades” and went back to sleep.
There, try to find THAT in the DSM IV.
Saturday, January 26, 2008
The problem is that I have been watching my vitals, sleeping or on oxygen since my last post so…what to talk about? I think right now my feeling is the one I had after I drove a four wheeler off a cliff road and into a tree when several hundred miles into the B.C. backwoods: ‘It doesn’t look like I’m going to die….but this is probably going to really hurt for while.’
So let me talk about what a chronic or autonomic failure is like for me. I would have thought that it would be intensely boring; I mean, I hardly move at all, I am not likely to in the near future. I don’t even have a view of trees or birds or anything. Boring right?
Well, I recommend you get one of those grey coffin-like metal roof rack holders for a bunch of snowboards, then take it in your car and go to your ski slope. Take the metal rack holder up on the ski lift, all the way up to the top where the black diamond ski slopes are. Now have a buddy lock you into the metal holder. You are just lying there, staring at the grey metal a few inches away from your nose; can’t see much, can’t move much. Now have your buddy shove you off the top. See, you still can’t do much, or see much, or really know what exactly is going on, but you aren’t bored anymore. No, those feelings you are getting in your body from the slope and the noises and the hints of what might be going on have your complete attention. That’s pretty much is happening to me, including when the rack holder slams into a tree and you feel like you might not breath again and you don’t know why you feel so crap but the metal case is already whizzing off another direction. You are inside and hearing and feeling more things so, in pain, but no, not bored, and still no exact idea of when or where this will end.
As for Fran, Linda got yelled at yesterday because now a stairwell is closed for construction and she used it. They only need to limit one more access and I can call the fire department. Just to let you know, you CAN hear a nail gun two floors down enough to wake you up. I am not sure when that information might come in handy, probably some future war when everyone has run out of bullets, but now you have it. As for those who like interpreting dreams, how about one where my mother is chasing me up the stairs, and she is buck naked while my father is standing at the bottom of the stairs saying, “Do we really have time for this now?” Needless to say, I interpreted this as a nightmare and woke up with a strong shudder. If I ever needed a proof I have lived a depraved life it is that my imagination can construct in explicit detail what my naked mother looks like (meaning, yeah, saw her vagina as she chased me up the stairs). Is there a name like those Eureka or Oedipal complexes where instead of wanting to kill your mother and have sex with your father, you have a dream where your mother and father are having sex and want to kill yourself?
All I can say is “Thank God” that the fashion of taking birth movies wasn’t in when I was born. It was for a period when I was in California. Because quite honestly, I can’t think of a more romantic way to introduce your significant other to the family than to get an extended film of your mother’s vagina with her screaming as you crown. Sounds like a blast! Sorry if some people have a misty moment about that but I’ve had dumps where I look down and go, “Geez, how did that get out!” So, no, not wanting a movie of it.
I have to admit to being handed a two week old baby and after all the admiration and the ‘yes aren’t the fingers so tiny’ I have carefully noted the size of the GIANT headed baby, kept a sort of two handed measurement. Then later, in the privacy of my own room, held that two handed diameter up to my vagina. Heck, I’ve even held up the measurement to Linda’s vagina once during sex (don’t tell her), and both times a little shudder and a idea of why your body releases all these material feelings cause……BIG HEAD! Don’t get me wrong, the miracle of birth, the miracle of growing inside and feeling it as it moves and kicks but……..BIG HEAD!
I guess I am on a biological kick today, sorry if you got the gags. I would like to take this time to mention that after years of disappointment, and while I am still losing weight, I think I gained a half breast size. And no, not down, like out – I am perky and proud. With my luck I should get a breast exam because it is probably a tumor but no, I’m enjoying the moments AND going out sometimes without any bra at all, cause I can now; nope, don’t need that push-up or padding. Okay, admittedly, usually no bra because I am wearing a corset but hey, actually almost proud I can call it “boobage” instead of, “a left over from the mumps.” Well, I actually used to lean over and call them “torpedo heads” since they had a strange triangular look. In a recent show on the art of Venice they talked about an artist of sculptures who made these “unearthly in perfection” statues (All nudes of course) and suddenly, there is a woman with my boobs, torpedo shape and all. “Look, look” I near shouted pointing to the screen, “I’m not ‘itty bitty’, I’m “unearthly perfection!” And now my “unearthly perfection” just got bigger.
Just in case you are wondering, yes I am on oxygen but no, not on pain pills, not doped up, just had enough moaning, screaming, drooling, turning funny colours that I guess I lost most of my inhibitions. Hmmm, is this a good time to mention that I am WAY too tired for most maintenance (besides brush teeth, hair, etc). This means I am looking for a tame foot fetishist out there who wants to paint my nails. I can’t really be bothered to dominate but I have some old shoes you can lick if you really want (I’m not using them).
Actually, now that I look over this blog, I am really wondering if I AM getting enough oxygen to my brain. Oh well, at least I am not worrying about my heart and the pain in my chest for now, I am more worried about certain relatives and perhaps future employers reading this. That would work great at the “Writer’s Grant” when I point out how respected my blog is and picked up by different agencies and they google it and turn back and say, “You imagine your mother’s vagina and you are willing to let people lick your old shoes?” Actually now that I think about it, here in BC, that would probably be a lock in actually GETTING a grant. They would probably want me to do a stage production too.
I’m going to stop now. Linda will thank me for that. Actually thinking about Linda and something she REALLY would kill me if I told, back when we first moved in together.....(Ow! Linda, it really hurts when you bend my fingers backwards like that!)
Friday, January 25, 2008
It hurts. It really hurts. I regret nothing. Stupid heart. Trying to stay very, very still and hoping it will forget about me. Autonomic hide and seek. Not a brilliant plan….but best I have left.
Thursday, January 24, 2008
I do think your energy would be better spent going to vote blogger Dave Hindsburger, whose daily blogs on disabilities made a loud and needed prod to people, as Best Blogsphere Citizen here (vote from as many computers as you can!).
You may be wondering why I was nominated for Blog of the Year, in a system which required people to VOTE for me, and I told no one? You may wonder why I never list any of the awards which I have been given or won in blog world? Is it that I am really that crap at HTML? Well, only partially: the truth is that I would rather write better than work toward awards. I spend, on average, 1/3 of my day writing, usually on my blog piece so yeah, that’s between 2-4 hours writing one piece. And I try to make sure to answer everyone who comes and comments, because I want every person to know that their words are important to me.
I don’t know if there is a category for what I am trying to do. I don’t comment on current events, not often, just this little bubble, one woman’s fall down a very long cliff, and the way she bounces off the rocks, hangs on this one, or hits that one with a crack or a sharp “snap” before tumbling on, and on, downward (hands up those who think I might be having a hard day today!).
A while ago (turns out a little longer than I remembered), Shiva at Biodiverse Resistance tagged me for the Roar for Powerful Words award, which required that I list some things that I consider important in good writing and some people to pass the award on to. I never did the award because I had strong emotional issues, as a writer, picking out people to pass judgement on in terms of writing, and in the end, as much as I appreciate the gift in someone saying that my words make a difference, I simply cannot accept it.
Some of my blog posts, like “fight or resist” took almost four hours just to write down, regardless the hours I spent working on them in my head. That one I did yesterday took some time. It doesn’t seem to have the right chord, though I thought I might have done it this time. So I just have to try again.
The one award I was happy to get was the Book of the Year one for Zed, because it meant that I wasn’t delusional in my insanity and that the work I spent on it was worth it: the rest like marketing and such was out of my hands. That was all I needed, that external nod saying, ‘yeah, you can write well. Now go and do better.’ Sure, I would like to spruce up my blog a bit but I try, I hope, to produce a certain quality of writing, as high as I can with the “one a day” restriction. And if you find that it speaks to you, or worms into you, or makes you want to steal it then I have done my job. Please do steal it. I choose the font and size and white on black to make it easy to read the words. That’s the only connection I offer to you, the words.
For me, this blog has become a microcosm of the experience of writing and rewriting Zed, that if I only make the writing better; cleaner, harder, and stronger. If I can do that, then people will come and stay, whether I am writing about naughty lesbian anime books or my circle of self identity within Lynch’s film The Elephant Man.
If it is not physical and emotionally painful to write for me when writing about topics then I probably am just cracking jokes in the darkness. Writing is a profession and all professions have costs. For me, if I don’t have nightmares then I’m not working hard enough. I don’t know if I am willing to go the length of de Sade and write with my own shit once they have taken away pens and paper. Am I writing for you? For me? For both of us? I’m really not sure anymore. That the problem with being a writer.
I was asked recently on “How to be a writer.” And I told them that there were three types of writing and writers. For the first it is a hobby, one that is enjoyed but also one in which the costs like revision and working on a single piece for weeks is often avoided. And that is fine. The second is a professional writer, one who must give up a significant percentage of their time to market themselves. These will become, in many ways, as or more proficient at HOW to sell writing and HOW to write what they know will sell than to chase the drive which compels the writer on. But out of these, out of the newspaper and even best-selling writers, the use and daily playing with words can sometimes elevate them, if the motivation is strong enough, to something amazing.
Then there is the third type of writer, who is half driven and half disciplined to continue, to push themselves ever onward in order to find and articulate that piece of them and viewpoint which is completely unique. See, each one of us, has this unique viewpoint, a unique voice; but it takes years to bring it out. And sometimes like Michelango’s unfinished marbles, it never fully emerges, but can be heart breaking beautiful all the same. Oddly it is this type of writer who is romanticized but whom themselves often regret being a writer, while simultaneously they would never give it up.
Do not be fooled, I am vain, lustful, greedy, selfish, self-absorbed and desperate; but most of all greedy. I have chosen a type of sex trade where I will try to seduce and sell you my eyes and all they see, even when, looking closely at myself, it hurts. I will make love to you and leave you, the call of the next piece to write making me abandon you; but always with the promise that if you come, catch up to me, I will love you anew, sell myself for you all over again. And that is exactly why I would enjoy being printed in the New York Times or in an anthology book; not because of the name, or the money (God, I’ve turned down money), but to have access to more brains and readers to make love to. I pulled my first book from production. That was 11 years ago. It was an act of entire selfishness: the book was crap (thankfully realized in time) and the publisher had been resold into one of those “sell through magazine insert” pimping organs.
So no, not the money, the trade I lust for is you; I want to make you feel the physical pain I do, I want to get so deep into your mind that I will live there whether you want me to or not. Writer, parasite or poor driven fool, all one and the same isn’t it?
So steal from me, print me in some high school paper, print me out and stick me on the fridge: that is why I do what I do and how I’ll live on. Not because I win some award saying that I am the queerest internet voice in the land.
Wednesday, January 23, 2008
While doing my Ph.D. the guy below me was studying the 17-18th century idea of “Terror” and the attraction of ‘freaks’. He had read Pepy’s own handwriting of his journey to London to see ‘freaks’ and what he had physically felt. That was the obsession then, that it was believed that certain things: like seeing a human who was all twisty or didn’t look “human” (meaning like regular Able Bodied) produced an INVOLUNTARY reaction – goose-bumps, heart increase, sweat, nausea, etc. And to this day, I think many people believe that the reaction upon seeing someone physically different, the NEED to gawk, to stare, to turn the person into a spectacle, is one which is involuntary. That when the people, having seen behind the veil of Merrick hounded and chased him, desperate to see while simultaneously nauseated were acting out of “instinct.” That they were not to blame, they were only acting as anyone would.
And truth be told, if you go to a restaurant where a person with severe physical disabilities or disfigurements is there eating, the actions of the patrons and the raised level of conversation buzz from “Look over there” to opinions is not that different really than the crowd in The Elephant Man.
After I grew up, I saw myself in the film as the Anthony Hopkins figure, the “sensitive” one who could recognize that yes, there really was a human, and maybe an interesting human underneath. I could challenge myself to look BEYOND just the scientific curiosity of it. This of course made me the hero, the soul who WOULD go and be around Helen Keller or WOULD try to talk to those other poor unfortunates who admittedly were not like ME, were not ever going to be like ME, but like many people on earth, like the woman who mutters constantly at the supermarket, should be treated with the kindly tolerance and trying to reach out. I did not know yet mine was an elitist privileged view.
You could say that I am viewing my late teen and 20’s in an overly harsh view, as I was an ASL translator (though I left, because of the politics but also because as a translator I never had a voice of my own). You could equally say that I am being overly kind. For people at that age often view themselves as special and more sensitive or brilliant or open and take a weird sort of pride in that, indeed a possessive pride in thier 'special tolerance.' I am sure I displayed all the subtle arrogance of that.
But living in LA, one was trained not to stare, since in my work I served movie studios, Leonard Nimoy, Vidal Sassoon (yeah, he was a real guy), Ray Bradbury and some of the exiled nobles from the WWII period, Baronesses and Dukes. So not staring was something I was trained in. But as someone in retail my greatest desire regarding a wheelchair user, or something with a speech difficulty or a physical impairment was that they go away. I knew how to take care of the thousands of people I interacted with from neurotic studio types, to arrogant rich bitches who would drive their Jag up onto the sidewalk before waiting for us to come and open their door. I did not know how to deal with these customers, those with disabilities, and not knowing what they would want or how I could appropriately assist them made my skin itch, and so I wished they would go away. Go away and leave me with our normal customers who carried around porta potties for their child to take a poo in front of the register: “Training during this time period is crucial!”
Only now in my 30's, world traveled, my aura of accomplishments and experiences around me, I was a person of significance. Until 10 months ago, that is. As the Freak Show Barker in The Elephant Man states to his audience before the unveiling, “Life is full of surprises.”
First went not just the life of the elite able bodied, but the expectations of those around me. That I would want to leave the apartment seemed to amaze people. That I should try and continue a type of life I was used to: training, writing, and interacting. This determination seemed not only absurd (and offensive) but many tried to explain to the incredibly dense person I had become the unwritten laws regarding attempting to pass as AB, or do AB activities as a non-AB. To get the permission to do boxing took weeks of planning and meetings, doctor’s notes, as well as the individual approval of at least four different people (three of which I have still never met). Even today, though I regularly drop into the Y, people who don’t recognize me by sight faces blanch when they pull up my card screen which has explicit warnings that I am not to be allowed to do any activity in the building without specific written permission.
Second went my identity, which, despite corsets and mini-skirts, degrees or life experience, was reduced to the box inside the head of 99% of the population: wheelchair bound, disabled. Disabled is a word which has no past, no future, only a continuous state of being. I was to forever be whatever the person I was interacting with thought was ‘disabled.’ The idea that I had held a job amazed them (much less over 15 and owned two business). The idea I traveled amazed them. The idea I traveled while IN a wheelchair offended them, that I must be breaking some international regulation.
So, my physical passions, my love of sports was reduced at best to “accommodation” (which anticipated only a hollow shadow of the sport I was attempting, if my attempts were not simply allowing some form of pathetic denial), to spectacle. But I was far too obsessed with proving to myself that I was capable physically of SOMETHING, to worry too much or get hurt for more than a few days or weeks over another comment or obstacle put in my way. I knew I could not be AB, yet, I did not want to become what everyone expected of me. So in 10 months I did: disabled indoor rock climbing, wheelchair rock climbing (yes, up rock inclines), wheelchair jogging, a 5K, boxing, tennis, sailing, wheelchair gym workouts, badminton, and was stopped for liability reasons from kayaking. I was also taken to the hospital from more than a few of the above sports.
The boxing, which I continue to do, is in decline, doing 1/3 the time, weaker and having slower neural response times. It looks like the window on an exhibition bout is closing. The fact that I WANT to demonstrate the sport against an AB person has had virtually everyone I have physically talked to respond in a violently negative fashion. That I am turning it into a spectacle (and myself into one as well), no different than women doing cat-fights in hot pants. I will say that I don’t give a flying fuck, but that is not true. Do you think this is the way I want to be seen, perhaps for the final public time, as an athlete? No. But I must accept that every time I roll into class, and every time I am rolled out to cool down or get oxygen, the eyes follow me with pity and maybe concern. But no one there is thinking, “That could be me.” No, now I am the one who draws eyes as my body starts to spasm and shake without control.
When I went to badminton, even on the second week, when I had proved I could play and 11-12 people where there, filling all three courts, I could not get anyone to play with me. I asked, they made excuses. After 40 minutes where every person in the room knew where I was, yet none would play with me, the Y director of the badminton just went over, pulled two people out of two doubles games and said, “You’re playing us.” That video from the monday was of my first badminton match. If not for the empathy and determination, not of me, but of the director, I would still likely not have played. It turns out that our team winning while the other able-bodied people watched the match allowed me into a second match, and a third (with comments of “I watched you, you’re pretty good!”). I had proved, but only with the determined help from others, that I was to be allowed on the court.
As time progresses, my ability to find sports within my limitations will be difficult. And to go out head held high, month after month, with the watching eyes, knowing inside that I am now a weak imitation of even my disabled self of months ago...that will become increasingly difficult. People will and have already said and done things which make me feel that I am sullying the tennis court; that this sport or area should be left for the REAL athletes. Or just the people, who walking stop and stare, and stare, while I struggle after a tennis ball, or transfer onto a weight bench, or wheel into the gym. I am not a spinal cord injury; I will not be strong, or have endurance, I am, I like to say with a smile, “a degenerate”, a neuro degenerative.
Currently, I am pushed to boxing, I box for 25-30 minutes and I am pushed home, where I suffer, waking for pain pills and ice through the night, my heart erratic, and on pain pills for the next 24 hours. Some day that will become 15 minutes, or ten minutes. One day it will be fifteen minutes of badminton or one game of air hockey. I am an athlete, and the only standard I hold to is my own. And if I can only do ten minutes a week, then ten minutes a week I will do. Yes, how people look at me, how people act toward me makes a difference, but I must not let it stop me. So now in the movie of The Elephant Man, the person I see myself as is Merrick, who in final defiance yells, “I am a human being!” In less than a year, I am already so used to being shoved down or aside, and I am looking into a future which holds only more of the same. What veil can I use to hide my secret self from the gawking crowd, when my slurring twitching self is a spectacle in itself: even the trailer for The Elephant Man offered scant hope: “But if you come to know him, you will begin to see beyond the perversion of his form.”
Knowing who I was, and how I acted, do I deserve better? Yes.
Acting like an idiot at 20 doesn’t mean the world must continue forever as idiots. As a side note, Ian says that I bruised two if his ribs at our last bout (oops, sorry!), but he seemed proud of me for doing it. Ironically it is from other bloggers that I learn to not give up my identity, those who are chronic and often fatigued yet continue as artists, as photographers, as writers, as bakers, as workers in various crafts. It is from this that I will continue to be true to part of who I am: Athlete. No, not spectacle, not “plucky”, or “trying”, or “giving it a go.” Athlete.
I was thinking of maybe ping pong next. Ironically, I have been invited to join kick boxing (she says she’ll adapt it). I have a rapid neuro degenerative disease. I am STILL an Athlete. I will not give up to those doubting voices inside of me, or the voices and eyes from the world around.
To quote from Eliot:
We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
Tuesday, January 22, 2008
Second thing I learned today: Able bodied people are not very smart.
I went out today at 11:50 in my wheelchair to see how accessible the elevator was for my 2:30 taxi ride, but the hall was EMPTY, break time it seems. I did make it to the elevator but it was between floors and filled with garbage, with the door half open.
I waited and waited and eventually the assistant manager showed up. I told her that I AM getting a taxi ride at 2:30 to the dentist (since I was told that I would only have work outside my apartment for one day, and specifically asked the manager to notify me of all times of inaccessibility in order to make appointments.) She informed that the elevator was well and truly broken. Well, when would it be fixed because I am going to that 2:30 appointment?
“Can’t you just…….slide down the stairs on your bum?” (I live on the top floor, so including landings, 8 flights of stairs in all)
I said, “That is really quite difficult when one is trying to CARRY your wheelchair too.”
“Oh,” She looked at the wheelchair, “Well it can’t be THAT heavy.”
I stared pointedly at her. And she said she would GO back down and tell the Manager I had an appointment at 2:30. She came up to say that the elevator guys were working and the manager would call when there was news. I said I would be surprised. Why, because the manager has run away from me, turned her back on me, but not SPOKEN to me in the 11 months since I got into the wheelchair.
So I am here, amidst ripped up flooring (and nails everywhere) realizing, that forget the dental appointment, if there is a fire, I am, literally, toast! I go back out and get my camera and call Linda because now she will need to come home to carry the wheelchair down as I crawl down the stairs. I just find the thought that, “Hey, you can crawl down to the ground floor can’t you.” As the OBVIOUS solution to be one which mystifies me. Is this what the manager would find acceptable at a restaurant, “This way, please drag yourself with your arms to the table.” Or the doctors or bosses at work? Oh, need to get to your clinic, just spend your energy and 20 minutes pulling yourself up one stair at a time. Or is it because I AM the only wheelchair in the building and so everyone else just ‘takes the stairs’ leaving me to…
I head back out and they have ripped up more flooring but I do not have a picture of the broken elevator because they have managed to get the door all the way closed. However, the workers tell me that the elevator repair people have left! And if they “have time” they will “try and get back.” I say to him that I notice his crew of four people isn’t here today either (just the two still).
“Yup, shitty crew.” Is his philosphical answer.
“Will you be working on this floor tomorrow?” I asked (as I have a 10:30 a.m. medical appointment – and this was supposed to be just for MONDAY after all).
He shrugged, we finish when we finish, then we move to the next floor.
15 minutes later Linda calls from work (several miles away), the manager has just phoned HER (not me, who is….in the same building), to convince HER that it would be best for everyone to convince me to crawl down the stairs on my bum (how I am getting back up no one has thought of yet). Linda said, no, she is in a wheelchair for a reason and I will come home and bring her down the stairs IN THE WHEELCHAIR. The manager flipped and said, “You can’t do that!”
Linda said, “I can, and I will.”
“But you’re hurt your back. (and maybe we will be liable….)”
She then tells Linda that the elevator is not electric but on a pulley system so this sort of thing will happen again, and more often and that it would be “best for everyone” if, the next ground floor apartment opens up, I was moved into it. (Why not: “The elevator is down and we will have it fixed as soon as possible.” Instead of the whole ‘you are a nuisance and this will keep happening so you better move!’)
Well, no we are not moving, we searched high and low to find this EXACT floor plan because I am EXTREMELY noise sensitive. So the study is shielded by all the other rooms to make a sound proof cocoon I can write in, and on the TOP floor with carpet so there is no noise from above OR below. To move to the ground floor where I hear the cars come in and out all day, where I hear the laundry and the people above me all day and where I still only have one accessible door might do THE MANAGER a large favor. But no, I pay full rent, and I am entitled to the rights of the building which includes the accessibility which comes with it.
What irks me is how the Manager, is so openly anti disability. It is bad enough that she refuses to accept we are a couple (even though we are LEGALLY married), but it is like a couple where one is black and one is white, and the person ONLY speaks to the white member, even if it is the black person in the couple who complains. I am in the building, I am the one needing to get out, I am the person who requested to be notified immediately of access problems and when I find out that I cannot leave and complain she does not call me or come up and see me but calls miles away to my partner’s place of WORK? She is a bigot and her name is Fran.
Her implication and threat that these sorts of elevator problems will “continue” unless we move out or to the ground floor makes me like her not so much. Since I have found out it is ILLEGAL in Canada to discriminate on a basis of disability.
I called an advocate at the action committee of people with disabilities and they suggest that I a) call the local TV station right now as “woman stranded in apartment while manager threatens not to repair elevator” makes good news and b) I call the human right commission and go after the manager/building owner for sexual orientation and discrimination on the basis of disability (which was kind of odd because the person on the phone couldn’t say the word ‘lesbian’ or ‘sexual orientation’, they would just say, ‘well she discriminated against you on that……..that other thing.”)
I talked to Linda and we aren’t going to call the news, what we ARE going to do is write a letter to the owner telling him everything which occurred, our concerns, and that we called an advocate and this is what they recommended but that we want to hear what he has to say regarding our concerns first.
My care worker arrives late because, the workers won’t let her through, she is not impressed. She has been told the elevator will work at 2:00 and a sign is in place on the ground floor saying that. Well, 2:00 arrives and I prepare to leave. Linda is late because she is trapped in the stairwell where the workers have put the hydraulic pump. She tells them, “The girl in the wheelchair is coming DOWN this stairwell.” We come out, they have piled their trash and garbage bins in the corner. Linda is ‘excitable’ and says firmly, “I said, we were coming down.” The guy takes the garbage bin and instead of bringing it into the hall, takes it down to the landing, where it is just as impassable. Then his partner is bring up sheets of plywood in the elevator.
I tell Linda, let’s try the other elevator because the Taxi has already arrived. Linda goes ahead with the chair as I pull my legs, then go down a step and another, then pull my legs and straighten them out, again and again, and again, a landing and again, over and over until the bottom. I struggle into the wheelchair and Linda is there to push me, which is good because I am knackered (or ‘cream crackered’ for those who like Cockney).
Linda pushes me down the long hallway (as we had to use the far stairwell) and as she sees us coming Fran stands mid hallway, blocking our path. She points a finger at me and says, “You’ll have to move to the ground floor; this will happen again!” in a very declaratory, threatening way.
I go to the taxi where I can hear her sounding off about me to the workers; “Everything has to be HER way.” She says to the people repairing the elevator, “Everything at the last minute.” She continues telling them about me, and how bad a person I am because, apparently when I asked her to notify me if there wasn’t access to the elevator, and when she didn’t I wanted to know when the elevator would work was simply “too much.”
I am not moving because some woman feels that she is inconvenienced by having to call elevator repair people when her hired crew ripping up the carpets are already screwing things up. I am not moving because a woman who is supposed to be the landlord, violates safety rulings by not notifying me of when I am in hazard of evacuation. And I am not moving simply because this woman is a bigot who didn’t want to rent to us “Sisters” in the first place and for some reason HATES people in wheelchairs.
It wasn’t always like this, when I won the book of the year award, she was so proud to know me; when the national paper ran big reviews of my book, she lingered to talk to me. Only since I started using the wheelchair has she not spoken a single word to my face…until today, to threaten me, that unless I do what she wants, my ability to come and go from the building will be in jeopardy.
Well, the floor is NOT done, but I am for the day. I went to the dentist for my first crown and they kept saying “this is routine” and I kept saying, “Routine! I have Nightmares like this!” as they used these pliers to pull out the temporary crown that was put on while I was under sedation (Wasn’t there a torture scene like this in a few movies?). Can you tell I don’t like dentists?
We have a medical appointment at 10:30 a.m. tomorrow morning and are leaving at 10:00. Linda went to ask the manager, “Will we be able to leave? Will there be access?” The manager could not make any promises.
I was forced to CRAWL, Linda had to take time off work to carry my “it doesn’t look that heavy” chair down…I guess I want to know why.
Monday, January 21, 2008
Today, I interacted eight times with five different agencies, including a 90 minute nursing assessment to determine if my care workers can put a cold pack, wrapped in towels, on my body. This is the second to last step of almost a seventh month process of trying to have this added to my care sheet – an important issue for someone who passes out due to heat intolerance. I made the argument that, I know that care workers are not ‘medically trained’ but they must have SOME medical understanding, for instance they wouldn’t go into a client with MS and turn on all the heaters. The community nurse said, “Actually, the probably would....there are quite a few workers who don’t do that well with English.” Okay, when the person assessing you is MORE cynical about the system than you are, what does that mean? Anyway, I was busy ALL DAY pushing boulders up hillsides to watch them roll down again.
I wanted to illustrate (and how it is creeping in on my life) a bit of what is known as “corporate culture” in the branches of government in British Columbia. "Corporate culture" used to be referred to as “Boy’s Club” or “Discrimination” and many other names. Essentially, in a closed environment, a type of attitude is taken toward things because of the way that those higher up view and talk about things, and this spreads to middle management (often because they are hired by the people with these views) until you have this “culture.” Which is why you can work in one department of a government or university and it will have a running club and charity auctions and emphasis on work/life balance. But go to another one and there will be people who are dispirited and the rule of the day is “cover your ass”, “It wasn’t my fault” and “No one will really care anyway.”
British Columbia in Canada, several years ago made some very important laws regarding disability. They actually didn’t think they were making disability policy or “culture” they thought they were ‘proactively turning the red on the government books to black' (from deficit to surplus). The first thing they did was tuck the registration of being a Person of Disability into a subsection of the Welfare department (in BC called MIEA). The idea was that if the people on disability assistance were put under the same regulations and assessments (and compulsory pushes toward job seeking) then a smaller percentage would still BE on “welfare”, thus red turns to black (see, this is the first change, that disability assistance was now, actually, welfare, not a recognition that those with disabilities might individually or as a group have special or specific medical issues which would need to be met by the public sector, but that they and people who were receiving "welfare" were, in essence, the same).
So, not disability assistance anymore but a subsection of welfare: and if you have no need for welfare, or no proof you haven’t applied for employment insurance, then there is no way to apply to be a person with a disability. So, if you are a person with a disability in BC and you live with a partner or have income which is below the poverty line but above the qualification for welfare, you do not show up anywhere as a person with disability to the government of B.C. (off the radar!)
The second change was to “Shake out those cheaters and welfare scammers” (US, the disabled) by ELIMINATING legally, that someone could be permanently disabled. So, yes, if Mr. Reeve (if he was still alive) or another other high para lives in BC, they need to show up every three years to be assessed because they are NOT permanently disabled. Indeed, legally, no one of a permanent disability lives in BC at all (or visits, so sorry Rick Hansen; Vancouver is hosting the paralympic games in 2010: 10,000 athletes from around the world and not one, according to the province hosting the games is permanently disabled.)
Now you might think that is just because B.C. is very optimistic and that hey, ALS isn’t a permanent disability because a cure is around the corner, as it is for SCI’s, etc. But the problem is that governments make decisions based on the statistics gathered from government branches (particularly in a government based system like Canada). So, the problem is that the recreation needs, the representation needs, the technology assistance needs, and all the legislation regarding people with disabilities is taken from MEIA. But MEIA’s system is one where many, perhaps even a majority of people with serious physical impairments and yes, permanent disabilities are invisible, unable to be counted because they simply don’t show up ANYWHERE on government stats. Which doesn’t stop legislation and other decisions being made which will impact them.
So, I live in a country with no disability act, in a province with no disability act, in a city with no accessibility code for buildings (which is the capital of the province of B.C.). And because of these laws, there is a culture that actually feels that those with disabilities can be treated as if they don’t exist. For example, the new hiring roll out of the Provincial Government which targets are now set to attract X% of students, X% of new immigrants, and to encourage immigrants to sponsor other immigrants with promises of jobs, as well as targets for ethnic groups. Linda asked, “Do you have any plans to set a target or attempt to hire more people with disabilities?” Answer: No. Amended to, no as our percentages are not that far off the public sector. Wait a minute, the government of BC is DESPERATE for workers (they will pay your entire student loan AND give you a FULL salary if you work for JUST three years for the B.C. Govt., for example), so much they are trying to get people to sponsor people in other countries to come here and work for them but they feel ‘they already have enough disabled?’ Even if there are qualified applicants in town?
I was passed along a conversation which occured in a branch of government within BC regarding the efficient use of property. The questions were coming from a person who was leasing a property for the government branch and wanted to make more efficient use (let’s call them Ms. Q.). They were trying to run this by those people who exist to say, ‘No actually, that IS illegal to sublet a government facility to be used as a meth lab.” (let’s call them Mr. M.)
The first thing Ms. Q. wanted to know was, could she eliminate the disability parking spot all together. Or could she make so other vehicles could use it because she didn’t see the need for a disabled spot. As she said, “We don’t have anyone disabled working for us.” (And implied in that is, ‘and I don’t expect us to ever have someone disabled in the future either’). Mr. M tried to explain that maybe someone disabled would VISIT the building so they should probably keep it.
Then there were bathrooms, Did they HAVE to make a bathroom wheelchair accessible? That is what Ms. Q wanted to know. Mr. M. had to admit that NO, she legally did not but again, what if someone at that office fell and broke their leg or what if someone who was in a wheelchair visited?
I have not yet found out if Ms. Q got her way in the elimination of a wheelchair accessible bathroom in a branch of government leased area.
What I mean about culture is that, if for example, an small branch of say, engineering or forestry said, hey, we don’t have any women here, why do we need to have TWO bathrooms, let's turn the women's into an coffee room? Well, that would scream “Boy’s club” because then, how exactly would a woman get a job there, when the culture is such that they don’t even see the need or anticipate that a woman would WORK there much less visit there?
Only here we have a REAL example of someone, instead of saying, do we need one or two designated disabled parking spaces is asking, why should we have one at all, as a(REAL) person could park there? Why should we have a spot or a bathroom as we cannot imagine a time when someone would work or even visit us with a physical impairment? And this is from the PUBLIC section; the one who is supposed to be PROTECTING us (hollow laughter please). As Mr. M pointed out, which Ms. Q had not and could not imagine, what IF, in the FUTURE, the laws changed, and there WERE disability laws and standards for buildings and a disability act?
Will the fear of the HASSLE of having to make the crips a bathroom in some distant future convince Ms. Q to order it to be built (when that could be a very efficient office space instead)? I will have to wait to find out.
But you can see what I mean=, these are not the “All crips are worthless” crowd. Ms. Q is a real person who represents many other people who after years of being in a public sector where there is no representation of people with disabilities nor public awareness of the 1 in 7 aspect (that 1 in 7 people have some disability), cannot imagine a world where they would share the same workspace with a PWD.
That clueless, innocent aspect is perhaps what scares me the most, these decisions made behind closed doors by people who are told to be efficient, to report to supervisors and department heads (and who are doing it for YOU, the public and taxpayers, as RESPONSIBLE GOVERNMENT) and none of whom have ever thought or considered or been raised in a workplace (or city for that matter) in which disability rights are actually considered just that.....RIGHTS.
Your reporter, trapped in her apartment for another day, from the surreal world of British Columbia (motto: The BEST place on earth) – signing out.
Sunday, January 20, 2008
Well, that seems like a great introduction on why exactly I am putting up a picture of me in my leopard print panties (thong string!) I bought two weeks ago in Seattle. Actually it is because Zephyr (from Arthritic Young Thing) and I think Ms. Pet (from Sexability) asked me to. Linda did the framing and said (as the budding disability sexuality photojournalist) “sometimes less IS more. Err...okay, Linda. Panties by Victoria Secret, top from Lip Service and red skull lap blanket made by Linda.
Ha....I hope that was coffee for ya’ll, a Monday morning wake up!
I did go and do something constructive this weekend which was play badminton on Sunday (thank you opiates!). But before I get to that I need to give a thank you kiss (with tongue) to the editors at Arsenal Press (my publishers) who checked up on me after many, many, many months and found out that I was sick. So they sent me a Japanese card wishing a) for better health and b) that I send them another of my novels. They also sent me a book from Japan of Junko Mizuno’s manga/anime illustrations called Hell Babies which is the real updated First Edition: she joins cute manga/anime looks with twisted demented tenderness (so yeah, EXACTLY my kind of book).
Did I mention that there are also a lot of boobies in this book, maybe that is why it is printed by Pan Erotica? Linda immediately opens the book and asks, “Why has that anime girl got so many snakes coming out of her vagina?”
My first thought is, “How does Linda do this, every book and she finds the snakes coming out of the vagina pic?” My response is, “So that men may be very, very (and rightly) scared of us.” followed with, “Look at the caption, it is Miss Alice Cooper!” Anyway, I was trying to get her “enthused” so after a lot of flipping through, I said, “What about this picture, it is like us having a picnic: there you are with your DD’s and me with my A/B’s cups (and a scary butcher knife)”
Linda says in an ‘ick’ voice, “It is raining BLOOD.”
“Yeah, but a nice picnic besides that...and see, we have matching panties!” (Linda is giving me 'that look' your mother gives you while you explain why getting a piercing is a good idea).
I have not given up hope, I show her two pictures, “What do you think of this to represent me? I like this one: look, she has long hair, and I like long hair, and thong, which I like, and roses (and flames).”
“She’s cutting herself.” Linda says in this accusatory tone.
I give her my best puppy, ‘aw you can’t help but love me look’, “Yeah, that’s what makes it so ME.”
“No! I want the other picture, the one where she is playing tennis, that’s you!”
I look at the picture, “But Linda, she’s playing with a contact explosive device.”
Linda stands firm, “She’s cute and she has red hair.”
“I also think she has blood splatter on her cheek.”
“That’s the one that represents you! Cute, playing sports!” (She had already nixed one I liked with a girl covered in scars with an eyepatch and a butcher knife) So, that’s me, only in a wheelchair, all cute and innocent with red hair (and blood splatter).
Anyway it is a fun book and I think I should say (for my publisher's sake), if you have a LOT of money, please buy something from Ansenal, like my book Zed new (otherwise do what I tell everyone else and get it from the library or buy it used).
So, I was barely able to move today and my limbs were doing odd twitchy things so I took some pain pills and went up to play badminton. Since no one wanted to play with the girl in the wheelchair, the Y guy, Keith (red shirt...but he didn't die?) helped me on serves and other technique and then we took on these two guys in a doubles competition.
I have to say I like badminton, mostly because I seem eerily good at it. Like, people say I am already better than some of the regular players, and this is my second attempt (maybe that is because I don’t have to move?). Anyway, Keith was really good at running around and covering my back. I can’t do the smashes but with badminton, the farther the birdy falls, the slower it goes so I play a lot of strategy.
One of the things I like about myself as a competitor is that my opponents can never tell how I feel after I miss a shot (or have it go out), I am really good at hiding my body language (not!).
Actually this picture is also so people can see how much I am losing weight, and that I am getting thin; I mean, I look...like a non athlete; where are my bulked up man-shoulders and scary muscle definition? What scares me is that if I still have muscle and look like this, what happens if I get weaker?
Oh well, another topic for another day, this is a blog about doing fun stuff just because; so I made a music video (under two minutes) of highlights from our bout. Sorry about youtube, it is a little mushy but you can tell where the birdy is, and when I miss because a) I miss and b) I slump over or throw a little tantrum in my chair. You have to watch the video to see if our team won or lost.
Of course, after that I didn’t want to go home but played another doubles game. By this time I am out of Gatorade and Linda is saying, “We should go NOW” in this very unsubtle way. I however am high on playing and being on a TEAM where I get to talk to players, like in REAL TIME. I haven’t had this much human contact for a LONG TIME.
So when Linda turns away to pack up I slip into another doubles set with this guy who likes to smash a LOT. Unfortunately it seems 50/50% if he gets the smash or not so while I like getting the points it seemed like it was up to me to keep the ball in play until either he smashed into the net or for a point. After the 7th or 8th smash into the net I was a bit like, “How about something other than a smash?” But this is not something you say to a guy over 6 feet tall who is trying to impress his girlfriend (on the other team) and a little testosterone high. So we lost, 13-15, but I got a few aces and almost flipped over backward to get a hit. It was a good game and I am looking forward to next week. I was not however looking forward to Linda’s face as I rolled off the floor. I could tell where she was by this black cloud hoving in the air.
She wheeled me home because I had lost some speech and other function. At home, 20 minutes later, the pain pills wore off and I was literally huddled in a fetal position moaning and making little screams. Linda, comes over and says, “I hate to tell you so, but I TOLD YOU SO, maybe you will listen next time!” So I got a little lecture about limits (hey, if you can still speak and see a bit, you can keep playing right?), and then my pain pill. I know she is concerned about me and yes, it probably is very irritating to tell your partner “if we don’t go now, you are going to overdo it” and then they ignore you and an hour later and rocking helpless making animal moaning noises. But….but….people, people who wanted to play badminton with me, and talk to me and gave me high fives and “good shot” and all that sports stuff. That is addicting when compared to the rest of my week which is: “Yo, fill out these forms, yeah, I’m talking you: Disability Meat.” No one tells me how “amazing” I am then, I can tell you.
Tomorrow I am trapped indoors as they are ripping up the hallway carpet (and elevator access) on my floor. So tonight I look at naughty anime pics and the video again of what has been the best (albeit heavily medicated) 90 minutes of my week.
Find the joy and stick with it, and leave the pain seek you out and find you, because trust me, it will (my disability lesson of the week – I am the lesbian, kinky Mr. Rodgers).
Friday, January 18, 2008
Linda was leaning over me, as I was struggling to breath, “Two offers?”
I nodded, “Exxx!”
“Sex?” Linda asked in a “what the?” voice.
I grinned and nodded my head.
My care worker, H., who was currently holding my body so that I could take in air, said in a ‘I’m going to kill you later’ voice, “Only you!” before laughing. She had previously told me that she would get me breathing again and then, MAYBE, I would be allowed back in my chair and if I didn’t come to go to sleep when she told me, she would throw me over her shoulder and carry me off to bed. Sounded like a pretty darn exciting offer to me. So I was giving my, “What can you do to the cripple?” grin as H. (VERY heterosexual) was explaining this (with dagger looks at me) to Linda. Sex tends to be a common conversation in our late night sleepovers for some reason; her and her romances with tall broad shoulder men and me showing her the manga porn girls that my publisher had sent me as a “get well present” (more on that tomorrow).
Linda meanwhile told how coming back from boxing, she had a mix-up of words and offering to push me through our horrid hallway carpet we call “the quicksand” she looked back to me and ask, “Should I do you?”
I paused the half second for it to sink in and then started nodding eagerly. Linda was, “You know what I mean?”
“No I don’t,” I protested, “There haven’t been enough offers like that recently.”
Anyway, being thrown over my night care workers shoulder and carried off to bed competing with Linda wanting to “do me!” was sounding pretty darn good. If you can’t make sex jokes while unable to breathe, well, I guess you’re not me.
Lots of problems breathing last night and this morning I was woken by the phone ringing and ringing (you know those ones where after 20 rings you think maybe they ARE important). “Heeeeeello?”
There was a crisp voice on the other end, “This is the MRI department; do you have any shards of metal in your eyes.” God, this is why I struggled to get the phone? Why do medical departments call so early?
I was in slo-mo today, getting up late and by the time my home care worker came, I was still working on contacts, brushing hair, getting dressed etc. My regular wasn’t there and there was a woman from several months ago who excelled in what we in the medical home-care industry call: being lazy.
First she came into the bathroom to ask me, “Where is your dishwasher?” I rolled my eyes and prepared to laugh until I realized she was serious. “There is a tub under the sink.”
Well, once I got dressed and in the wheelchair it was, “You have some sort of party? What are ALL these dishes?” I also found out that she was there because my Home care agency is closing in Feb., so everyone is calling in sick, including my evening worker from yesterday (who called in sick, a replacement was assigned who never showed). When this worker, K. found that my regular overnight worker was there last night, she got really angry. “How come she be here so many hours and not do the dishes!”
I told her that my overnight worker, H.’s job last night was to keep me breathing, and that she couldn’t do that AND do dishes. “She should do them later!” K. stated.
“It was after 11:00 p.m., my partner was asleep.” I told her.
“Should have done them anyway. I would have.”
“Well, doing the cutlery at 11:30 p.m. next to someone sleeping, must be a delight.” I said. Sorry, but when the woman who has kept me from going to the hospital at LEAST six times gets slammed because keeping me breathing for two hours when I couldn’t do it on my own seemed more important than doing dishes, I get a bit stroppy.
The care worker couldn’t find anything for me to eat so I got my gatorade and then after being there 30 minutes (she is supposed to be there an hour), she started heating up her OWN lunch in our microwave, while telling me how much weight I had lost since she had seen me last. “Yes, I keep losing weight.” I said. And she told me to make sure not to lose any more, took her warmed up meal and then left. Okay. That was surreal.
I had to back to Triumph for my interview with M. my “employment case manager.” The first words I told her were, “I want to leave here with Dragonvoice 9” (where you speak and it types it for you, slurring or not). She had told me should/could get me DragonVoice the first day. That was all I was coming in for. Well, it turns out not to be that easy. She needs to call some government department, (EES?) and I have to be assigned a case manager there. We are hoping for Bruce, but I get Lynne, who it seems won’t do anything unless ALL the paperwork is done perfectly. Lynne talks to us but says she will call next week “once she has the paperwork” and then we will see. M. tells me I have to call Lynne every day. I tell there is usually a list of people I spend most of my day calling to try to move things along and Triumph is one of those places. She goes off to fax the paperwork and I notice there are pictures of M. with a baby, then a little girl. So when she returns I blurt out, “You progenitated?”
There is some nervous laughter about yes, I guess she did. I just think about how I am mucking about in this medical stuff and how Linda and I talked about it last year and here she was replicating herself. Before you classify me in the weird grouping, she looked at my birthday on the chart and laughed and said, “A typical Taurus.” Eh?
Anyway, after an hour my feeling is that like every OTHER group to do with government, I go to meetings, M. is paid to do the meetings but is paid nothing to do work for me in other capacities while I am away. So I am the one who leaves being told to “write a letter to the Rick Hanson Foundation for a grant” after being asked, “Why not write pamphlets for new Neuro wheelchair users?” So, I have another octopus: I have to do all this work while they get to assess if I have done enough. Crap on that. I HAVE a damn good resume and would have a $45,000 job if I decided to “settle” and just take something like clerking if I wasn’t, you know, disabled (and unable to work full time). And the corporation who is paid to help me get employed needs to understand that I don’t need help with a resume/CV (I gave them one of mine today). What I need is someone who can go out there and sell me in a marketplace and country which not only doesn’t seem to like part time employment but actively discriminates against disabled employees (legally!). That is the ‘accommodation’ I need because if I was NOT disabled, if I was strong enough to spend hours a day searching this, then I wouldn’t need them, I would HAVE a research or teaching job. I was infuriated that I had been sucked into at least four meetings on the promise of individual advocacy for my by a pro WHILE I was sleeping and getting medical tests so I could work when I was not. And instead I get told to go cap in hand myself.
By the way, the reason I told her I am not doing pamplets is that I have as much impact as I can hope or desire in the now with my blog but that in a short time, I will be gone, and the blog will wash away with the tide of internet time. I want a book so that the next person, so every person who cares can know what it is like emotionally and socially to be in a wheelchair and the medical system during the first year. The year you think “this isn’t me” and “Who am I now” and “Am I sort of pretending, I’m not a spinal cord injury and I’m not really THAT sick yet” and “I’m sure this next test will show what the problem is, and I won’t be using this, I’m not like those people who are ‘wheelchair users’” and “For gosh sakes, it has been over 100 tests so far, when are they going to find something, or when are the doctors going to start agreeing?”
So, it was all, “It is 3:00 on Friday, you need to try again Monday” because apparently being degenerative only occurs on weekdays for diseases? You may guess that I am not amused. I’m not: I was stopped from entering a disability advocacy office because I was told, “We’re closing.”
I looked at my watch. “At 3:30”
“We close at 4:00 but we like to leave early on Friday.”
“Of course you do.”
I really wanted to believe for once that you could go into a government or subcontract government building and walk out with a disc instead of TWO case managers, a prospective phone interview, and two more appointment times to meet with M. M, who has not asked for my writing portfolio or anything and I think has no real contacts with employers but like the people there who do 1 hour sessions on “Writing a Resume” at the end of the day it is all up to me. Well if so, why didn’t they say so up front and I could have been spending all that time…I dunno, FINDING a JOB instead of trusting that these people would make reasonable accommodation to help me in finding one. I have the energy to go out 2 to 3 times a week by myself in the wheelchair: this week 2 of those were to Triumph. Was that a good investment in mobility?
Well, that was one long whinge wasn’t it? I just don’t know what to do, I mean, besides having to be monitored by the freaking minute on breathing last night, I STILL made my deadline only to find out this morning that my editor is on vacation until next week. Just wondering, do disabilities get vacations, or only when you get a job? Sorry, it is just that I literally worked myself until another attack, then slept, then got up, explained to the person making $20 a hour that we don’t have a dishwasher. Then went to be told that I have to have another interview and more appointments and I have no disc, no software, no computer (much less leads on work or inquires on my behalf with local papers or magazines). It is just that I don’t know if I have enough endurance or energy to fulfill all the demands on being disabled until something finally happens.
I am so fucking tired of able bodied people putting me in disability time.
I think I really do need that sex. Pretty badly.