Monday, December 31, 2007

Hey New Year, wish you didn't look like the Old one.

I couldn’t talk for part of today. I thought I was clear enough but no one, not even Linda could understand me. My home care worker told me that I was “pretending” and started to make fun me and my talking, and saying how convenient it must be for me to “pretend” I can’t talk when I don’t want to. Linda told her that, no, this was a part of my condition. But the worker laughed that off because she had seen me a couple weeks ago and I could talk okay then. “You pretend” she tell me. Since I couldn’t make myself understood any other way, I had an overwhelming desire to strangle her.

Yesterday’s hours of erratic heartbeats had caught up with me last night when I was “out of it” though Linda said I was in considerable pain but only able to moan instead of talk. I had already recorded and demonstrated the weakening of the right side of my tongue as well as my vocal cords before Xmas but neither the GP or I knew what we should do about it. Over the break, there had been two instances of the gag and swallow reflux failing as well as waking up choking because saliva had collected in my lungs and stopped enough air for me to wake up gasping and choking. I didn’t know that could happen.

Later, after several hours of rest, when I was understandable, I called the manager of the home care whose response to the home care staff telling me I was a liar and a faker to my face before making fun of my speech disability was 1) “That seems odd.” 2) “I am sure she didn’t mean it” and 3) “I am sure it didn’t happen that way” at which point I handed the phone over to Linda who confirmed that it did happen that way. The manager never said that the action was inappropriate, but that the person would be spoken to. After dealing with this particular manager that if a case worker had told a black client with Parkinson’s not to feel bad about having a brain fog because black people are by nature less intelligent and they complained, I am positive she would say, “I’m sure they didn’t mean that.” What I find so dehumanizing is that assumption that after being verbally abused and mocked about your disability by the person paid $19.59 an hour to assist you; that I, the person who slurs and is a ‘client’ must be wrong until Linda gets on the phone and says, “No, it actually happened.” Why are the disabled automatically to be disbelieved? Not only did this manager NOT ever apologize for the care worker’s behavior (Instead of “statements like that are unacceptable!” I got, “Well you do have a LOT of different conditions” – that justifies human right violations and verbal abuse now?) but also said that they were technologically incapable of reducing that care giver’s number of days; so until a replacement is found, they will be returning. In fact, they will be the next home care giver I get (oh the laughs we will have!).

In somewhat unrelated news, after four weeks of attempting to go to the office of the Income Assistance for British Columbia to apply for Person with Disability Status, I was told on the phone that I had to complete a 10 minute on-line process and then await a call, maybe on Wednesday. Then, if I passed the phone interview, I would have a 90 minute meeting to determine if I qualified for “Welfare.” The person on the phone was adamant; “You can only become a person with disability and apply for that once you are eligible for Welfare.” The on-line session was completely about my requirements for job searching and how I would be required to provide proof of job searching for three weeks before I would be eligible to even apply to receive Welfare. What did this have to do with being a PWD and getting a subsidized bus pass again? It ended with a two page list of things I must bring to the meeting not limited to: “Proof of application to Employment Insurance”, “A current Resume”, “Proof of job Search” and that I could be rejected without sufficient examples of cold calls, applications to advertised jobs and similar evidence of attempts at employment.

I returned to the BC government webpage on the Fact Sheet on Persons with Disability where the application for asssistance states clearly that forms are available to individuals eligible for disability OR income assistance. I called the Ministry back and was put on hold for over 30 minutes to be told that, “I don’t have to go into that now, someone will contact you on Wednesday.” When on Wednesday, as I may be ill, incapable of picking up the phone or in the hospital. This seemed to throw the person on the other end of the line in a panic. “Do you have shelter?” they asked. (Dude, you just made me take a 10 minute on line test to determine if I am looking for work enough and NOW you ask me if I have shelter? Do you have a lot of homeless with laptops and wireless access?) Yes, but I have a severe medical condition. No, no, they couldn’t talk about it, but I HAD to pick up when they called. It was very strange as, according to the Ministry, only if I qualify for welfare, act as an able bodied person and bring a resume do I then get past the gatekeeper to apply to be a person with disability. And if I have a house, or stocks, or anything that can be sold for cash; I can’t be disabled, at least not officially, in the province of BC in Canada.

Why is the agency in charge of people with disabilities, when they have a person on the line asking them what day it is today (me, because I didn’t know) does not check what is the person’s disability. They never asked, because unless I qualify to go on welfare, it didn’t matter to them. Regardless if my disability impairs me from understanding the demands and tasks to be done at very specific times and days. That does seem a puzzler, no?

The point of this New Years post is that though I am ready to try and get a jump on my condition, set up a stable environment and push myself in social, physical, cultural and activist goals, activities, dreams and hopes, there is no point listing them. Why? Because today I was told from my home care company that the only person who could authorize care workers assisting me in taking a bench shower is the same case manager I, my GP and my previous GP have been trying to contact since October so care workers can help apply my oxygen mask. Or to put it bluntly; since I am currently dependant on others to enable basic functions or advance my medical and social stability it looks like this year is going to be a continuation of last. And last year was a time when the time and personnel wasted ensuring that I KNEW that as a disabled person I was not equal to or should try to dream, desire or imitate the life of “normal” people versus any sort of empowerment was at least 15:1 if not 50:1.

The only people who on a regular basis who are telling me that they believe in me, that they are rooting for me, that I DO make a difference in the world and I can continue to do so are the people who read this blog. That is the positive difference in my life. That is what I am thankful for in this New Year. I wrote on my intro in Ouch that “blogging makes a difference” – well, the people who are there, who read you and respond and let you know that my thoughts (while completely and totally wrong) are going to be taken as seriously as the next persons. Right now, that is of tremendous importance to me. People take what they want from what I write and I write so can they do that. But I have to thank all of those, especially those who have disagreed, corrected, dissented, argued against or rebutted my ideas that you NEVER dismissed me because I slur, or because I am in a wheelchair or because I am in some way different. Right now, that isn’t how I am generally treated. And if it wasn’t for the people who comment or email me, I don’t think the self image of myself as YES, being just as equal, just as important, just as worthy a voice would have survived. No one deserves to feel they are a ‘lesser human.’

Anyway, Happy New Year? I hope to amaze and astound you with my latest trick: Hang gliding (hey, they have tandem rigs, so what if I am scared of hieghts!)

Saturday, December 29, 2007

Neurological and Chronic Conditions: Fear

One of the side effects of a neurological and chronic condition is fear. And there are so many different ways and things to fear that it is hard to know where to start.

First is the “This wasn’t the way it is supposed to go!” fear. This one is a repeater and seems to have a few variations but basically it is that you had a pretty clear idea of what life was ‘going to be like’ and then you start to notice that things are quite the way they are supposed to be. And you go to the doctor and instead of telling you that everything is okay and yes you will go back to ‘normal’ he tells you that you have (insert condition here) and that no, things will never be “better.” Or if you are particularly unlucky and/or female your doctor will tell you it is depression or in your mind and this cycle of you noticing things aren’t quite what they should be and going to the doctor and (let us assume HIM) the doc sending you off again, usually with an antidepressant. But eventually you have a name for all those ‘things’ and a wave of fear hits you because you don’t really know what that name means, not really. I mean you might have heard of a school friend who had it but what does that mean?

Well, life moves on and you find that yes, life has changed but it still goes on and so do you. And that yeah; you’ve got a chronic condition/neurological/degenerative condition but hey, it is sunny out and you aren’t going to die/be bedridden/be debilitated TODAY. Only by now you are in a support group or seeing a GP who knows of your condition and someone mentions a particular effect/condition that ‘some’ people get and you think, “Christ, don’t let that be me.” But in the end you have your own particular bag of collected symptoms and limitations and a bunch of people have already told you, “Gee, I couldn’t live like that.” Because that is the Able Bodied world equivalent of saying something useful (along with “Have you tried…..”).

But then some day, you’ll be doing something, some part of your new routine, and you’ll just stop and think, “Is this it? Is this as good as it is ever going to get?” You’ll remember your life before diagnosis and all the medical things you didn’t think about which now consume your life. And while you know that these conditions just happen, that it isn’t your fault, that there wasn’t something you did, you have to wonder why it happened? And you look ahead, and you can see the future you had planned before diagnosis and the new future your GP told you about and they don’t line up very well. And a fear takes hold of you; that you will lose even more. And the thought of losing more is almost too much to bear. But then, what would your able bodied self say to you if they sat next to you on a bus now? This fear is about the future and now and wanting to go back and being that person who never worried about medical issues and how once touched by the hand of random and destructive chance, we don’t want to feel it again.

There are, of course, the immediate fears, which the longer you have a condition, the fewer they become. The first time you can do X. The first time you are too fatigued to lift a limb, or call for help. That realization and fear that you might have to wait for someone to find you. The first few brain fogs; the times you have said enough wrong words that you have to admit that this can’t be a coincidence. The fear then that you, the very essence you have trusted your whole life, may not be perfectly trustworthy anymore. The first major seizure, or incredibly painful muscle spasm, or incredible pain which stops you from sleeping and the thought that ‘this could be what it is like…every day.” Or heart erratic or falling down or having enough energy to get somewhere and then not have enough to get back. That first fear because “Shit! What is happening to me!” But then, whether it is needing oxygen, or cold packs, or an PA to come and prop you up and turn on the TV, the first incident becomes the second time until it becomes the 100th and while OTHER people freak out, you are getting kind of bored. Well, until a NEW thing happens and it is the first time for THAT particular new symptom (and you get that jolt of fear – and maybe a trip to the hospital – all over again).

There are the people fears; first that your partner and friends will leave you, will forget you. And as that starts to happen, as groups you were part of stop including you, you wonder how alone you will become. Not a pleasant feeling. But after a few months, those who are going have usually left and you have met a few new people and the fear recedes. But then all these PEOPLE, people you know nothing about are entering your life and are in charge of your home care, or whether you get disability rights or whether you get medical or assistive equipment. There seems to be no limit to these people, as well as the people you have to go through to get to these people and some of them, to be honest, you aren’t really sure up to the job. And as time goes by you realize that the days of being treated like a consumer are gone. That these people may screw up and if you get mad and write a letter or express your displeasure, then instead of like writing Tesco or Safeway, you don’t get a super apology; instead you are sent back to the SAME person, who now processes your paperwork even slower. You get a handidart driver whom keeps talking about “You cripples are dragging down the whole system.” But you DON’T call in a complaint because you did last time and nothing happened and for all you know, this is the SAME driver you will get in two days for your next pick-up. And you realize that there are now many, many people who can abuse you from slight to direct ways and there is very little you can do. That by simply never returning your calls, you can be delayed treatment and no one will care. And you realize that people, that society doesn’t see you the same way anymore, and THAT scares you. But you do get over it, and cope one way or another. Until you meet ANOTHER person who has power over you and hope inside that THEY at least will be competent at their job.

There is also the fear and frustration of helplessness over every law or legislation or paperwork that stands between you and your decision to make a stable life. There are times, when looking at the deadlines and layers of paperwork you wonder if this isn’t some sadistic survival of the fittest toward people with disabilities. I mean, when you don’t know what day it is and this has to be filled out, signed and submitted within two weeks of application at a particular office on Wednesday between 12:30-2:30, well, is this designed for people with neuro and chronic conditions? I am still waiting for a form to be filled out by my GP from 2006. Seriously. Oh yeah, and what about those “assessments” you MUST attend at time X or ‘you may lose benefits.’ Nothing like going to a room where someone will decide in ten minutes whether your life is going to be put through the wringer or not. Nope, no fear there. Personally I think if every 8th or 10th person going in just took a board and WACK, hit the assessor on the head, then THEY might fear the assessments as much as we do. Oops, did I say that out loud.

But maybe these fears fade as you get years into your condition. I hope so. My final fear is what I call “The Big Picture” as, unless your condition stabilizes, or every time it does, you start doing the math, and start projecting what your life might be like in, say, six months, or a year or two years or five years. This only happens when I have a run of bad; and I try to think what life is like at this rate in a year. Probably because when I get a few decent days I try to forget that I have a chonic condition. Except there are always those reminders that you aren’t the person you used to be and you never will be again.

As for me, I am terrified of my own body. Because you learn the new rules, the limits you have to keep within, and the drinks and food and rests you need to take to be optimal. If you had this kind of discipline before when AB you could have stayed on any diet program you wanted. But now, the cost is too high to push the edges anymore. Only sometimes, you do everything right and your condition fucks with you anyway. And just when you NEEDED it to be strong, you were doing everything right for three days so you go out tonight; but you can’t, you can’t get out of bed. No matter what you do, you can’t control it all the time; and no matter how much you want to go with the flow, there are some times when you wish so bad you COULD control it. You cry because what you had been planning for two weeks you won’t be able to do.

Why am I terrified of my body? Because there are too many things that go wrong. Right now the left hand I am typing with is a beet red and my right hand is yellow, the same color as baked dumplings. That isn’t something you get used to easily. Some days I look in the mirror and smile and only half of the face moves. I wasn’t very mirror obsessed as a teen but STILL I am pretty sure the smile goes on BOTH sides of mouth. I have heart erratics every day, for at least an hour. Even my doctor, doing a three-minute blood pressure test heard and saw the erratics shake my body. At least once a week I feel so bad that I would call 911 if I could reach a phone but I can’t.

As for me, the doctors are treating at least six months behind my symptoms. Normally that wouldn’t matter; with most conditions you will notice a problem, have time to talk about it for a few months and then take action. My progression in three to five months seems to be about 10 years of most other conditions. Unless something changes soon, it is a matter of weeks to maybe a couple of months before I start spending the majority of my time bedridden. The morning, which was the time I felt strongest, isn’t enough some days to enable me to shower using the bench. What used to take 18 minutes able bodied and 90 minutes seven months ago and 150 minutes three months ago now takes me up to 210 minutes: to shower, to dress, to groom myself, to take my morning pills and to have some form of sustenance. My speech, which used to have problems only when I exerted myself all day is now distorted on a daily basis. There is nothing I can do to stop or slow it. My doctors are still debating about tests they decided to do a couple months ago to determine that I have orthostatic hypotension: something which has only been determined five times so far.

Linda has said that being here, seeing me this week has helped her understand that I am not the same as a couple months ago when she was last at home for an extended time. She gets scared when I am too weak to move, and she has to move me, not knowing what damage she might be doing to my body so I can breath for now. She thanks the hospital bed, that it gives me what she calls "a chance" at breathing. And this is one of my better weeks.

She says she thinks of how much I have declined, how much more fatigued I am, how weak, when she is planning the trip to Japan. She says, "And we don't even know what you will be like in April." That makes me start crying. Because it is true. We don't know, but I want to try because even if I can only go outside for two hours a day, I will see 14 two hour snapshots of Japan. But somehow it is harder to hear your fears spoken out loud, and by someone you love and who loves you.

The fear comes and goes. Sometimes it hurts to look ahead. Sometimes it hurts to look back. You have a find a balance in the now, I think.

Fear doesn't define you; your condition doesn't define you. But that doesn't mean both aren't still there.

Friday, December 28, 2007

The post that starts X-rated and ends with wholesomeness

I should start off by warning you that this is an X-rated post, maybe NC-17.

What do you do when you're screwed up and you don’t know what else TO do? I just do one thing at a time and I try to think “What would ‘good Beth’ do?” So yesterday afternoon/evening, the wind and rain storm notwithstanding we went up to the Y and did an aerobic workout on the hydraulic weight machines. Those specific machines mean, I have an easy wheelchair transfer and weight is added or removed by a push of your thumb (or in my case, a shove of the elbow when the thumb don’t work). There are lots of ways to pull and push and do a high rep upper body workout. On a few machines I was having hand problems and used my forearms to push instead. Then we had SEX right THERE on the floor of the Y. No, we didn’t but you are probably wondering why this is an NC-17 post.

Well first it is the NEW link to my blog which was added TODAY from Cameraphone movies which is a blog about where to get explicit hardcore porn for free. And I guess this is about how, even when you try to do things like go and do weights and spend time with Linda watching Oklahoma (which appears to have been MADE for a gay male choir – since in the ‘burlesque’ dance routine, it screamed ‘DRAG!” Maybe because I had actually seen two of the dresses in the set on the Halloween pics of gay guys from a LGBT forum I go to) bad stuff still happens. As I woke up this morning to an assault for about 3 hours from various directions of “Why aren’t you doing what I want you to do.” With an extra bit of guilt or obligation or pity thrown in but it all still ended up being: “I want you to do/act/speak this way for me and you not doing it right now makes you bad.” So when I found out I was getting hits from a page filled with pictures and films of people getting cocks from behind, above, below, underwater, etc. I just had to laugh. It turns out that I am the number two google search for “voyeur masturbation” which linked to my post about the day I taught a underage child the word “masturbation” by accident and then passed out while doing disabled sailing (not a HARDCORE sex post).

It was not in the section: Hardcore Fucking or in Hardporn, but a new blogging section and it even had a full paragraph from the post about me starting to lose consciousness at sea. Above the post were 9 films of “Hardcore Fucking” and below the paragraph were three to four pictures of a woman taking a cock in her mouth.

I said to Linda. “Look, someone added a link to me.” And she said, “Oh my!" Then I showed her the pictures below my paragraph, “OH MY!” If you want to see the link and where my work ends up, it is here – but I did warn you. In an unrelated fact, for reasons I am still unclear on, there are MANY links to my blog over the course of this year from a site called Penislinks.

Aside from the fact I was sort of hoping for the New York Times rather than sex phone camera movies, I actually DO blog about sex; there is Swimming with the Dolphins, my rather detailed guide to a vibrator for fatigue disabled females (With PICTURES!). There are explicit posts on Vibrator shopping for lesbians (namely…US), my musing on a decision to go into sex work, a post on female sexual fantasies, including some of mine as well as my male GP’s instruction on how I SHOULD be masturbating. I’ve written about incest and about one of my own sexual abuse ‘experiences’ (which freed me finally from years of nightmares). There are posts of ‘real conversations’ about vibrators from a lesbian household (again US), I’ve written about the effects of incest as well as my favorite; last Xmas’ post: Female Masturbation and why it is a GOOD thing.

I like to think I am as sex positive as I can be (not blogging about sex with other people because I am in a long term monogamous relationship). I just have to wonder why THAT post, about disabled sailing ends up between the penis up the butt and the penis in the mouth pictures?

See, by this time, you are getting the NC-17 aspect of the post, yeah? So, okay, still trying to do the ‘right’ things, pretending to be upbeat but not really happening. There were however two things in the darkness that have made a difference. The first is the link from THIS POST from Gaina over at The Mouth On Wheels which features one of my favorite characters with his exuberance over his…um….hobby. And Linda sitting there beside me, watching with a puzzled expression, and NOT GETTING it made me laugh so hard I had problems breathing. Linda now claims that she did ‘get it’ part way through but that she didn’t feel it was the ‘right way’ for the character to act. I think that kind of naïve ‘well, I’m not going to laugh at THAT’ is even funnier because on the same day she brought back an entire backpack of explicit Yaoi (male/male love) and Yuri (female/female love) manga for me (true love!). Watch it and see.

The second thing to make me laugh was someone whose life must be even MORE screwed up than mine because I got a search hit from an official government computer. And not just an official government computer but from It really boggles my mind that my blog is still rated as ‘work safe’ by the US government. Anyway, the search they made was “revealing secrets questioning under sedation” which got them my post titled: Very unexpected side effects of oral sedation. This post was the one about my oral surgery and being put out and how as soon as I was high as a kite and my consciousness, my inhibition and my higher brain function all said “bye-bye” and I start telling everyone about my brother and how he “sexually abused me when I was a prepubescent.” Later I rambled on for 15 minutes about some wacky theory that had popped into my head. Obviously, this was NOT was the searcher wanted to read because he read the entire post twice. And I had to laugh (just a little) because whatever problems I have, anyone who is at N.A.S.A. and is doing searches for “revealing secrets questioning under sedation” is not getting good sleep at night. So yeah, probably having a worse day than me….just by reading my blog. I have an image of a very tense guy, with some very bad secret reading my post and just saying over and over again, “Oh My God! I am a dead man…..okay, next search ‘How far to Cuba?’”

To end the day, I thought you might want a taste of that wholesomeness which is Linda; that gosh darn true innocence which comes from clannish country living. I was city girl, she was farm. She thought nude statues in museums were “pornography.” Now she takes me in my wheelchair to see the Rodin exhibit of the very statues that she REFUSED to have, “in my living room….where anyone could see” when we first moved in together (I love that about you Linda! You knew how you felt, and were willing to try, just a little…for me). Here is a film she made this summer from a Mennonite Heritage Museum Festival near her ‘farm home’ about the way things were done in ‘Ye Olden Days’ – it is a short music video and though it REEKS of wholesomeness, it is a very entertaining watch (and none of THESE people are probably worrying about what they might reveal to the government under sedation).

Thursday, December 27, 2007


I must be getting a bit mystical because I asked for a dream last night. In Hebrews 11 it talks about all the rather horrid ways people have had to live and even more horrid ways they died; searching for the country they believed it but never saw with their own eyes. I never even believed. So I wanted a dream: a dream to tell me the meaning of specific horrific icky things that are happening to me. And I got a dream.

I woke up at 5:45 a.m. from a dream about some nebulous time between high school and my second or third university degree. And all the people who had looked down on me and bullied me in school were there. There was an opera and dance performance prep and they had recruited some people to help from the school. It was a simple move based on fencing that the “background dancers” (me) were supposed to do. But no matter how many times I did it, I was wrong. And the director said “We’ll work on it later” in that tone which means I wouldn’t be working on it later but I would be seeing the stage director later. And the stage director would be telling me that it just wasn’t working out and that I could be just as valuable working behind the stage. Only no matter what I tried behind the stage, that just didn’t work right either. And people were getting tired of waiting for me to get it right, which I never did.

I guess some of that could have come from the fact I had a strong case of the dropsy’s and hand tremors yesterday. But I interpreted the dream simply as: Failure. That my life has been one in which I have failed: mostly in meeting the expectations of others. I failed to get straight A’s, always a B somewhere. I failed to go to the wife molding religious college that had already reserved a place for me (without even submitting an application). I have held dozens of jobs but failed to begin a significant career. I’ve lived in the woods for long periods of time while working or going to university because I didn’t have money for tuition and rent. I’ve also squatted in unheated buildings; in places without bathrooms, where McDonalds and bladder control got me through the nights. I took up fencing to help me with mental control regarding PTSD; until I had sold all that I could to keep paying for what is/was a very expensive sport/hobby. I was, with a single exception, disliked at my club. I even threw a fencing club party to which no one came. Actually, I’ve thrown several parties but when people found out I was holding them in where I was living, in unfurnished and unheated, concrete floored sections of unfinished basements; in the end, no one would come. I have done many things, some adequately, but never fulfilled the expectations of those around me; because in the end, I would move on, looking for the next thing rather than dedicating my life to the double bass, or the newspaper, the art journal, the mathematics, the marathon, asylum seekers, Christian Religious Theory, or the great outdoors.

And the irony is that now, I suffer and will eventually die because my body and my autonomic system is failing. I will die, due to failure. This is the time when I ask myself: Have I been a good partner? A good daughter? A good friend? A good person? I guess that for most of those questions, my life circumstances would answer “no.” There isn’t a single person from high school through the 14 years at university that still speaks to me (indeed, after ‘coming out’ the day AFTER I passed my Viva, my references rescinded). Nor this week, with the exception of Linda, has a single immediate or extended family member spoken to me. Most of that is because I said things, things that people didn’t like to hear. And because I guess they thought they had a relationship with one person and it turns out it was with someone else. I don’t think that living and yes, having sex, with Linda is wrong. A lot of people do. Even non-religious people would say, that “it is their generation” or “not something I am comfortable with.” I spoke about sexual abuse I received from people who went to my church. And even more, I spoke about how the church itself was set up so that sexual, emotional, physical and other abuses were carried out with regularity and when the reply from the “Elders” was that this was a “test from God” instead of “call the police.” When I talked about the abuse in my family I did not realizing it would mean my parents choosing between their grandchild and me. As for my extended family; they didn’t approve of my parents’ religious choice so I simply had no contact with them except a few times as an adult. Though most of them living very near here, I don’t think any of them know that I am sick, and since I am “living in sin” I doubt they would care. I mean, they never cared about their own sister trying to escape from a physically abusive husband (she lived for a while in the woods too).

A good daughter; no I am not. I have never lived up to my mother’s expectations; even the emotions I have are wrong (or so I am regularly told). But since she spent her life trying to live up to her mother’s expectations, I am simply glad I don’t have a daughter (stop that cycle). I don’t think my Grandmother ever said she loved me….or to her own daughter. The one thing I know from my mother is that I am going about my illness all wrong: I wear the wrong clothes, care about the wrong things, feel the wrong emotions, and so when I am not verbally overruled, I am simply avoided. My mother has a good relationship with Linda. When she wants to tell me something, she relays it through Linda. So in that regard, I guess more of a monster than a failure; monsters are things you avoid because of fear or disgust. Yet I think we are so close in many ways that I would die happy if we fell down Reichenbach Falls, I don’t know if I would even strangle her, just lead her to her death by her desire to strangle me (Sherlock Holmes and Moriarty fell to their death strangling each other over Reichenbach Falls) .

But is that all I am? Failure. Probably not, but some days, I really do have to wonder. I rarely have ever drunk alcohol and only once in excess and I have never done drugs. I have however, run until I bled. I’ve cut myself thousands if not tens of thousands of times. I’ve attempted suicide from starvation, dehydration, alcohol poisoning, pills, walking in front of traffic, lying down in snow, and many other ways I can’t remember. The starvation took the longest, and probably came the closest to succeeding; months of wanting to die every single day. And in the end I was a failure in that too. Yesterday someone asked me what a person feels that makes them want to cut themselves. Sometimes it is just because you feel so much of nothing that having any feeling, even pain would be a relief. Sometimes, you want to strike out against your anger, your frustration, your helplessness but don’t want anyone to be hurt, or damaged; only yourself. Sometimes it is just the fear that the risk in hoping or trying is so terrifying that you need to remember who you are: An object; something to be used and discarded. I wonder why people think I would hurt someone else when I would do almost anything to myself from the fear of even disappointing them. I’ve punched myself in the face, left welts.

So that’s it, that is the great vision, that I’m a failure; that I die a failure from a body system failure? I was sort of hoping for something I didn’t already know. I’m not convinced I was sent the right dream. Linda says that if each trouble in my life were a pebble, my bucket would overflow. Linda always has these farm analogies that confuse me. I think that either means I have had a “tough row to hoe” or I am really good at failure (Linda read this and say that because “you have been stuck in so many fires, you are such a strong person” – did I mention her analogies confuse me). Linda is still worth all of them (the immediate and extended family). I just wish that either I could have been who they wanted me to be; or that they could want the person I am. My mother told me this year that she wished everyone could experience the pain of knowing someone like me.

Tuesday, December 25, 2007

My tribute to Boxing Day (and Coach Ian!): Girl Fight Bout Part II

I know by doing this I am probably ruining the nature of “Boxing Day” forever and next year....I won’t be allowed to keep Xmas (hooray!......I mean, shucks!). But I thought since it was Boxing Day I would give you a video of my coach Ian and I over the course of several weeks as he trains and boxes with me. So there is a music video which mostly just shows me hitting Ian....a lot. And then there are the times he stops and trains me something and the times I work the bag and the times practicing what he has taught me. Then I go out and try on him again. I am wearing a SKULL headband that Linda bought me for training. Now that is love. Coach Ian was a bit...disturbed at first, but then he knows that I

As you can see by the look on my face, I am having a good time and I think Ian is too. By the way I am supposed to be practicing breathing out each time I hit to speed up the hit, so I look like I am saying something which is just “hah! Hah!” or sometimes “Fa! Fa!” whichever. I worked a lot on the video so I hope you like it. The song which fit the timing best was “God is a Girl” a particular DJ version which gets spirit up (no, not actually announcing my deification, just a good song – turn it up!). Have a happy time off, or shopping. I have to wait another two weeks to go boxing. (Boo!). Also I do have a full screen crystal clear version of the video but is 300 megs in size so if anyone wants it AND knows how I can get it to them, let me know.

Men's balls, innocence and why I try and horror for the holidays.

Last year my Christmas advice was to masturbate and again I heartily and with heartfelt emotion recommend it. Face you, you need to relax!

After my little episodes with Devotees, I thought I should do a piece about men and how they aren’t all that bad and how I might not know a lot of them but I am sure they are good people. But then the more I worked on the blog piece the more I realized it sounded like “Men are from somewhere that game consoles are made and Women are from where you learn how to insult each other by saying something that sounds nice to everyone else.” So I’m not going down that alley, I just want to echo Linda who saw a guy in a nice business suit adjust his balls while walking down the main street, “What’s up with that?” Anyway guys, I don’t hate you, and I will try to see and talk to the individual if you agree to do the same with me: deal?

So instead I am going to write about innocence; or why I pursue it. You see people often think “innocence” is a state of unknowing; being ignorant or naïve. Or it is just being foolish or a little dim. Innocence is a state of mind or being in which one is ingenuous (honest to the point of transparency) combined with a openness which opens a person to terrible emotional wounds but without which, the wonder of action and thought which humans can aspire to are overlooked, ignored or scorned. The more a person knows of humans and the experience that life etches into us, the more we guard ourselves, cutting ourselves off from the greatest gifts of humanity: hope, belief, love. Bet you are freaking out now; where is the swearing? What I am saying is that the swearing, the screaming, the crying, the na-da-na’s in your face: all of it is my attempt to remain true to my goal being ingenuous, completely open about who I am. I am ever seeking the possibility of innocence: to face the world afresh not just once but in every encounter. And I almost always fail.

As a child my father explained to me about the Christian idea of Sin and Christ and how no one could lead a perfect life. “Do you mean it is IMPOSSIBLE to lead a perfect life?” I asked, “Or is it just that no one has yet succeed?” As you can see, from an early age, the idea of testing the odds of several billion to 1 appealed to me. It is indeed the reason I am a follower of Christ (though probably not recognized as a “Christian” in the organized sense): because here was a being who knew the absolute worst of humanity, not just in deed but thought, and EVERY DAY, went out there, facing it, opening himself to be hurt, continuing to do and act for the sole reason that it is right. I decided then that if he could do that, then I should attempt it too. I realize that this is probably strange for readers and a little uncomfortable and sappy but that is why I do what I do. Not because I believe in heaven or hell (I don’t), and not because I want to live forever or often even be alive (most of my life: not so much, I started cutting at age five – what does that tell you?). But each person is a god and in every choice they reclaim the best or the worst of what we as a species can be.

Every day, I strive for innocence, to fully face all the things I have done which shame me, and all the things done to me and still TRY again. I happen to disagree with Yoda; Trying is everything. If all we are willing to accept is what we know is possible then yes, we live a life defended from disappointment. And no, choosing to try, always, regardless of odds or consequence is not likely to be a life of peace and free from pain, but I have known for a long time that I am not the type who sees someone fall and is only afraid. I am the type who sees someone fall and is terrified, and tries anyway.

So I guess the conclusion for this post is this: There will ALWAYS be a time when I fail, when I fall, when I lie in a heap. And there will ALWAYS be a time when I challenge myself to try. Like this evening when I tried to convince my Video Store to put a particularly horrific French film in their Xmas section (Hey, it happens on Dec. 24th, sure there is cannibalism and demonic possession but still…..XMAS!), or recommended The Bridge to a couple because, “Yes, I know a documentary on suicide isn’t what you might want to watch but is all about family!” The sad aspect is that I actually thought those were good choices, I mean I am going to stay up and watch the UK horror film Wilderness. Nothing reminds me of family more than a pack of dogs hunting down the weak. Oops there goes that innocence thing. Oh well, I can try again tomorrow!

Monday, December 24, 2007

Santa may not come tonight, but this guy might!

Here is the number one reason why you shouldn’t leave out cookies and milk tonight: because there are nature’s burglars and I’m ROOTING for them.

This is my Dec. 24th smile of the day – watch the one minute video below (not mine but it make Linda and I watch it over and over again – is he REALLY going to take it? Wait and see).

Have a happy time with your families, and for those like me, try not to do anything TOO self destructive while you brood and drink…..ALONE. (Seriously, watch the video; it is less than a minute!)

Saturday, December 22, 2007

Devotees and me (closing Screw Bronze); the cage of stereotype plus a suicide!

First a message to our German speaking visitors: Männer, wer kommen, Rollstuhlmädchen zu sehen. Gehen Sie bitte weg und kommen Sie nie zurück (ja, sind Sie ein Pervert, sich geben bitte bis zur Polizei)

I think any 24 hour period where 1) I decide to close the blog Screw Bronze and in an unrelated episode 2) I decide to end my life (completely successful by the way: I’m writing from heaven, but wow! It is REALLY hot here) and 3) I have slept so much that I’ve only been up a couple hours by 9:00 pm counts as a “bad day.”

I just think the idea that Hell is hot but has great internet connections and lets you still blog is really funny (see, God put all of Heaven on Microsoft Vista and now has permanent blue screen, which God says is ‘pretty’).

Why close the blog? Because Screw Bronze (specifically the month of December) had been directly linked to a main German language devotee site and now 1/3rd of all people coming to my blog were coming from this registration locked site (which in the one open link section has “Top Ten Free Links” to places like “Crippled Women Pictures”, “Casted Beauties” and “Wheelgirls”), the BraceForum. Having a couple hundred guys coming to my blog, about one every minute, going through my pictures and blowing them up to full screen (and right-clicking to save them) made me feel more than on exhibition, it made me feel ashamed.

I know that I am “out there” as a blogger and part of that is my firm belief that I am not my wheelchair. Society may keep trying to tell me directly or by individuals actions that I am not a full female, I am sexless, I am useless. This is this social idea that girls in wheelchairs aren’t rebels (or dangerous) and I was proud that a portion of my blog was a big finger in the air to that idea. Oh, you mean able bodied people didn’t think that neruo and fatigue women might want some sex toy reviews? Or that we might shave our vagina for thongs and lap dancing and having loving pictures taken of us and our lesbian partner going off to a party (that picture was a devo favorite by the way)? That I, as I can, play air hockey and feed squirrel and do boxing; that I am more than just some tragic Little Nell figure but a real person with real feelings, fears, dreams, disappointments and joy.

But then, looking back over those pictures; looking at the pictures the devotees liked the best I realized that I was NOT this person to this stream of men (indeed not really a PERSON at all, more like a sexbot), and that there would always be some website or people who visited my blog to whom the chair and I together make up a sexual object. And that the pictures I was most proud of were also the ones which might be collected, mentally pawed over, and saved to be pulled up in a session with the hand and the tissue paper. That already, in closed Yahoo groups, my blog pictures may already been thrown into the heap (these sites often boast big numbers like: “over 1500 pictures of wheelchair ladies!”) to stay locked away. So now my year of medico’s, challenges and the need to be daring, to be recognized as something MORE than the wheelchair was part of a jumble of (Crippled Women) pictures to be thrown into a 250 pic pack available for download, swapping, sharing…all for a minimal fee. I know from the five to six male “Wheelchair users” who contacted me in the day or two after I posted the movie about me feeding the squirrels that yeah, those guys are out there (these “wheelchair guys” whose ID showed no personal picture and they only subscribed to wheelchair women and devotee youtube films - yeah, some wheelchair USER).

I thought I could keep distance, I didn’t think they would be able to get to me, to strip me into a commodity. And there I was, ashamed, thinking about those people out there, who WANT and NEED women like me to be in wheelchairs. Devotees and Wannabes don’t want a medical OR a social model solution; they like all the meaning and the stigma and the social context that the west has piled onto wheelchairs (and amputations). Because if we are socially integrated or we find ANOTHER mobility device (try to remember, that in the end a wheelchair is ONLY a mobility device) then what will these groups and people do? But I just didn’t want it anymore; I didn’t want to see the world and to see me through the eyes of these people anymore. I didn’t want to look at a picture of Linda and me dressed up for the party and instead of just being happy or a proud feeling that it was in any way sordid or enabling of the dehumanizing of me, or us.

My feelings toward that whole devotee/wannabe spectrum are pretty defined at this moment. While all of us have “types” we are attracted to, we don’t let that dictate our lives. I myself love the look of red headed women with pale skin but I am married to a dirty blonde who was tanned when I met her. She was the right person; because she was a person, not a type, not a fetish. And when the fetish gets to the point that the person is no longer important except in terms of aesthetic value, then not only are you (often) reinforcing stereotype but in the case of women with disabilities, trying to lock them forever in a personal and societal cage. May I quote from a magazine reviewers review of the zine “Humping Stumps”: “I became torn between feeling sad for how consumed he was with his obsession and being digusted by the how far he would go for the promise of pleasure….He tells a story of someone else from a 3rd party perspective, except that he is IN the story. It gives me such an uncomfortable feeling that my skin crawls. It’s some real Jeffrey Dahmer John Wayne Gacy style storytelling.”

This appeal to the sexual fetish of women in wheelchairs (and amputees) and stereotype caging extends to my disgust of the wheelchair maker Colours in Motion. They “assembled” a “First Ever” dance troupe made up of two female models (and ex-cheerleaders: who could have guessed!) who even though radically different in height have adjusted chairs so they are the same same height in their chairs. They also have the same length long hair (the movement of the long hair is even part of their ‘dance’ routine). Colours had advertised itself as the wheelchair company for people who wanted to break the mold; but apparently there is a “beautiful and able bodied looking” bar that needs to be passed first. Because that is what the public face of Colours is; their image isn’t about disability or diversity, it is “We are just as hot and sexy as we used to be….we’re just sitting down!”
And so my message to Colours in Motion is that you are a devotee site that makes wheelchairs (or more succinctly “Fuck You!”) and I will continue to see you as such until you start showing us some of the genuine diversity of people who use your chairs. Using hot skaters and hot looking girls to make a cool dance club works and I guess Colours in Motion thinks it will work for them too (by the way Colours, think! You just put up Victor Konovalov, as your 'new member' of “Team Motion” who is a body builder and talks about the time he was in a wheelchair and NOT looking like a body builder as “I was ashamed of myself and what had become of me….I could see the pain in my parents eyes” and then goes on to talk about how because he was in a wheelchair women looked the other way SO, he made himself BUFF, and now they love him (or maybe gay guys do…he is really buff!)). This is the picture Colours in Motion have on the “groups for people with disabilities we are teamed with” webpage. Hey people with disabilities, this is what you are supposed to look like: Colours in Motion seems to be creating a NEW stereotype; that there are cool disabled people (and also then the ugly, disgusting, disturbing, etc people with disabilities); and picking out those worth knowing or talking to (According to Colours in Motion) is the exact same method used by devotees. You just take a look: Beautiful, or looking AB or Buff then "cool" group; not looking beautiful or perfect, then 'the other group' aka 'Short Bus.' By the by, I did try have a Colours chair shipped in to try when buying my wheelchair but it just wasn’t up to the task, the frame and components didn’t have the rigidity and precision I needed when high pounds per inch were applied (like cornering, fast accelerations, etc).

So guys, want to get to know me, then stop pretending you are in a wheelchair, and stop emailing me questions about catheters and crap like that; tell me about yourself, I’ll tell you about myself – that’s how it is done you fixated fetish freaks. So no, after a day I decided not to pull the plug because yes, at times (like weekends) there are more literal “wack jobs” devotees that may come to Screw Bronze than people who want to learn about vibrators, or fatigue, or MSA or wheelchair boxing or Shy-Dragers. But they don’t run my life and they don’t tell me what to do or write and once they do, then the cage they want me inside of has slammed shut. (insert pictures of me giving the various rude finger gestures of the world)

Regarding my suicidal actions. I tried a new “pain pill” last night which was supposed to reduce my pain without getting me addicted which is what Morphine does (so they say). It is called Apo-Amitriptyline and if there was a side effect in the “If you get this call your doctor immediately” column, I got it. My sleep to waking ratio today is 13-14 hours sleep to 5 hours awake. And I am taking coke (the one you drink, not the one that goes up the nose) just to stay awake. This morning my blood pressure was so low (for over an hour) that I don’t know how I was still sitting upright AND I had erratic heartbeats. I was too weak to move unassisted and later too weak to even move the blankets on my bed off my chest. I was dizzy and falling over; I fell twice due to passing out due to hypotension. I had a “black mood” similar to when my GP two GP's ago decided to take me off all my anti-depressant and anti-bipolar medication “just to see what happens.” (Gee, what do you THINK might happen doc?) Only this black mood was even more intense and severe and I stopped talking almost immediately, and then I stopped noticing other people, and then I started going the wrong way down the car lane accelerating my wheelchair into the path of the car swerving to avoid me. Then I stripped to my bra outside in the dusk, with near zero temperature and wind and played Russian Roulette with the chair (push down an incline, put your hands in lap and wait to see if I hit something at speed and get thrown on my head). Linda ended up restraining me in a hold until I kinda passed out (Darn you Linda and your able bodied strength). Then she got me home and in bed somehow (I wasn’t ‘there’ so I don’t know how). Turns out that part of the warning for this drug was REMOVED, and that if you go to the US Library of Medicine Amitriptyline has this BIG RED WARNING at the top which says that in studies, it found that young adults who take anti-depressants may become suicidal. It states “even if you are an adult over age 24. You may become suicidal, especially at the beginning of your treatment”. Because it seems we are TRYING to create an imbalance in the brain chemistry, an imbalance which blocks some types of pain for some people.

Right now I am like, Hmmmm, I think I want morphine because, addiction be damned, I am pretty sure morphine won’t make me sleep 75% of the time and then make me push my wheelchair in front of cars the few hours I am up. Just a thought. Because I was under the impression that the pain killer was to clear my head and enable me to live a better life. Staring into space, attempting suicide, crying and the rest of the time sleeping doesn’t SEEM like a “better life” to me; what do you think?

So that was Friday and Saturday. Right now I am drinking liquids like a mad woman to try and flush this evil, evil drug out of my system. I mean, yes, being dead is, in a way, a “pain killer” but really, there must be better solutions. Hey, (unrelated shout) I WANT my time back!

So that’s it, here I am back at ground Zero, at the bottom of the hole. And while they say “at least it is all up from here” why is it I am only equipped with a shovel?

Thursday, December 20, 2007

Boxing as a sport, an adaptive sport; and MORE than just a masculine sport

I am a female boxer. I don’t box ‘like a girl’; I am a girl that boxes. I also box from my wheelchair. Now many view the sport of Boxing as Joyce Carol Oates called it, “Boxing is a celebration of the lost religion of masculinity.” That Boxing is a sport of men, reduced to pure skin, muscle and malice. If boxing is nothing but pitting testosterone thinking brains backed with muscles and training until one of two combatant are crushed, then yes, I am not a boxer but also boxing is not a sport. A sport is an activity which requires skill and has a level of competition. But sports also have an affinity to art. From Parkour to gymnastics the sport is itself art in motion.

If there is one word to describe my former sport, epee and fencing and how females approach it: the word is Dancing.

And if I had to give one word to describe my current sport of female style wheelchair boxing: that word is Storytelling.

Boxing requires skill far beyond just hitting a heavy or a speed bag. Sure there are jabs, crosses, hooks and uppercuts but there are also shoulder blocks, elbow blocks, double hits, feints, hitting low and high, rapid fire combinations, bob and weave and evasion. There is always something else to learn how to do and how to do it better, from throwing punches and keeping up defense to accuracy, speed and thinking ahead.

When I am in a bout, my body, my defense and the punches I throw are a story I am trying to tell: a story that is a complete lie. And the better the boxer, the better they are at reading ahead in the story, seeing the holes (lies) in it and adding bits to their story. For example, I am in a wheelchair, I have a long reach. My coach Ian is teaching me how to box “short” where I hit several inches shorter than I can for 20-30 seconds until my opponent believes me and moves their position based on my “story.” Then. WHAM, I extend to get a body blow and the opponent realizes the story has changed. Every punch I throw and every feint I make is to tell my opponent something, and much of it is what I ‘want’ them to believe (a lie). I know that my opponent is going to block my punch, but first I don’t want her thinking too much about why I am so easy to block and I want to see how she is going to block my punches.

I notice in throwing punches at Coach Ian that he sometimes blocks my body shot with the wrong elbow (If I throw a right, he should block with a left), which leaves an opening. I throw a few more punches to the head (my story: Oh, golly, I wish I could hit you in the head Mr. Ian, but I just can’t seem to get through!), then one to the body with my right, he blocks with his right elbow, taking his hand away from guarding his face. My left hook is already on its way and lands! Now, the problem is, the more tired I get, the less convincing my story, and the more a person can bob and weave, the more they can ignore the story I am telling.

Ian has very short stories like, “Watch out I’m going to hook you. Oh I changed my mind and I am going to hit your stomach.” I believe what his body and gloves tell me, I react and he hooks to my head. Or he just waits until I am so busy and tired that I have forgotten the foundation (defence!) and just wakes me up with POW to the face. Important lesson, don’t get so caught up in the story that you forget the basis of the story: I don’t get hit, you do!

I have no interest in smashing up someone or hurting him or her. Boxing is very much like the card game Magic or other card based gaming where you come in with a skill set and you try to use your skills to block the skills and attacks of your opponent. But also through planning, combinations and thinking ahead, you slip through attacks and at the end of the time, you have more points than your opponent. This is where boxing is very similar to epee fencing, I need the person to act, to react; and I need to find out what skills they have and how they plan to use them. The joy for me is in reading the mind of the person who is bouting with me and taking that information, then using it to create a plan and executing the plan, all in seconds. Of course, running into a mind that goes, “Oh no, she will hit my stomach!” and they drops their hands while I hook a punch to their head is interesting the first time. If they are still doing it eight times later; I’m kind of bored! Coach Ian has a VERY devious mind. Before taking up teaching he came out of retirement to box in a championship which required boxers fight 4 bouts in two days (he won!). He has this irritating habit of being SO good that he makes me look like I am beating up this “poor weak defenseless guy” (that’s his lie). So he will drop his hands and do a little dance on his feet as he reads me and I throw my punch, but where is Ian? He is making me look like an idiot as I have punched air. Then he does it to me all over again.

On Monday he had a new trick, which I only figured out 90 seconds later: come in close and go “turtle” – head down and hands and arms in defense. I am batting the sides of him but I can’t get him to come out, plus he is so close I can’t use my range on him and have a hard time thowing punches. THEN he has the audacity to say, “Okay, watch out for the hook.” And two seconds later he hooks the side of my head. He goes back to turtle and then again.... “Okay, watch out for the hook.” Another hook to my head. OOOH I am SO going to get him. My story is out the window and Ian has me right where he wants me; focused on him and what he does.

During the bouts he will stop and teach me things I am working on, like feint with the shoulder, hit to the head and rat-a-tat-tat of the machine gun to keep the opponent confused while you set up the next combo. He tells me, “Stop looking for the Big Punch”; which is true, I need to be thinking in the now with my hands keeping the opponent busy and thinking ahead to where I am leading them. I will drop my hands, and Ian reminds me this is a bad habit by hitting me in the face. I am laughing. I haven’t been this mentally challenged in a long time. I do the double hit, one in the stomach and follow through on the uppercut. I laugh because I finally got you Ian (Do not do this in a real bout - and wear a mouth guard)!

I need to stay focused, to breathe out as I punch my target and retreat back for defense. But I keep my arm out there an extra second, hoping to find a target. I drop my hands. Ian teaches me to keep sharp but he also teaches me to be humble as he will once in a while do another bob and weave to let me know that I may be getting better, but he is a far better liar when it comes to his boxing story.

Ian seems pretty masculine and yet he has no need to slug it out, to make it a bash-fest. “Tap-tap-tap” he tells me, “The practice bouts where you get hit on the head over and over; tap-tap-tap; that is your brain cells dying.” Since Coach Ian has a successful consulting business I think he was pretty good and avoiding the tap-tap-tap.

So no, this isn’t the boxing to 10,000 cheering people wanting a knock out, this is a game, a story, three minutes of chess we play with our advantages and disadvantages. While I’m in a wheelchair I have a long reach; and people go for my head so often I am great on defence, only Ian can hit me there by now. But I can hit most people in class in the body (even Ian). They are confused because my body doesn’t move like other boxers, not to mention my gloves tend to tremble a bit when they are up in the defense position (just neuro stuff). My opponent can get out of my reach, they can bob and weave, they can come in low, or use their legs to step into a punch to give it power. But I can time my punch so they step into it, making them give me their power. It is a sport; a competition, and perhaps someday, with a little more grace and skill I will be able to add a dash of art.

I am a female boxer. I am in a wheelchair. This is how I box.

Wednesday, December 19, 2007

Linda turns psychic and I muse about her as caregiver and lover.

Here’s a freaky: when your partner can sit across the room, not even looking at you and KNOW what you are thinking. I was at a friend’s place and I kept passing out every 10 minutes or so and with Xmas coming they asked me, “What would like most all?”

Linda said she heard the silence of me not answering and told me later, “I knew you were thinking, ‘It would be nice to pass out this time and never wake up.’” Yeah. Well, it was one of those emotional days and people asking me what kind of food I like special for Xmas when I have nausea 24/7 and half of the little food prepared is thrown away is embarrassing and frustrating. I remember that I USED to like chocolate and ice cream and other foods but I just can’t seem to find the energy or interest to eat them. I mean, if you came off of a roller coaster and someone gave you a piece of chocolate cake, how much would that interest you?

Plus the one thing I do which makes me feel alive is when I hit someone in the head (at boxing). It means that my energy is up and my arms are working and I have outthought them. So when I land a head touch, the farthest point away for me, it makes me feel pretty good. Except if they accidentally drop their hands and then walk into hook – that just makes me feel guilty.
But back to Linda, because today, like many days I thought about just a fraction of the things Linda does for me. From morning to night, in the little and big ways she cares for me. Deep down I want to be a person worthy of that kind of love, but I don’t think I ever will.

For me, love and sacrifice go together; that aspect of judging actions and deciding not only if they will hurt your partner but also if they are ones that will bring you closer together or just ones that you might WANT to do. We each have our own time and our own activities and we both work toward being together, because it takes work. We work to find ways to connect, to think about the other and what might please them, and what will give them delight. I have watched and bought more 80’s hetero romances than I thought possible. I watched Pretty Woman with Linda for goodness sake, if that isn’t a declaration of love, I don’t know what is.

But that pales in comparison to what Linda does for me on a daily basis. She is my carer, she is my caregiver, my safety net, my lover. Which is it who counts my pills and makes sure I have taken them (and only once)? Who talks to me or strokes me when I am paralyzed, or in spasms.

Today I lost sight in both eyes after and during a series of seizures on my arms, which left them non-responsible and made my speech all but undecipherable moaning noises. She got me into the car. She told me what she was doing before she did it; as she buckled me in, hooked up oxygen. She held my hand and kept talking to me, though I drifted in and out. She got me home, she got me in bed; put chapstick on my lips. She was there. That wasn't a carer, that was the act of a lover. Without her, I would be stuck tonight in the hospital being tested for something for which there is no quick fix.

I blog because Linda made a nest where it is possible; she got the body supporting chair, she set up the den, she got the equipment.

I don’t know how to repay this unequal partnership; I feel bad when I can’t eat a meal she made for me because it was a “favorite.” I would give my life for you Linda but instead it is you who daily give up parts of your life for me. I would give you the world when it is you who pushes me to places I cannot reach on my own. Thank you Linda. I did not know how empty was my heart until you filled it.

All that being said, let me just clarify; I know what you believe Linda, but it is not me who snores, it’s you!

Tuesday, December 18, 2007

Why I box, why I blog, and why I don't give a fuck if you think I am "useful"

Yesterday after my limited boxing class my coach Ian and I had a conversation on why exactly I want to do an exhibition fight. He wanted to know how old I was (ohhhh, dude, you don’t date much do you?) and told me that doing this wouldn’t bring my youth back (‘bring my youth back’ – seriously, have you EVER dated?) and “prove” something about myself. I kind of wanted to wack him on the side with a “get over that male thinking.” Except Ian can easily avoid any wack on the head I try to give him (He has skary boxing skills; I don’t care how good you are, Ian can hit/tap you in any part of your body he wants in three seconds). I tried to explain to Ian that trainers and articles talk about people with disabilities and people in wheelchairs turning boxing into a joke. They say that women sully the sport and the disabled shouldn’t be allowed. If Boxing is a real sport, and I believe that it is, then it can be changed, it can be adapted so that almost anyone can participate and benefit from it. That’s why I want a two-minute exhibition bout: because boxing has made me an equally respected athlete in a training gym within a city where people don’t treat me as an equal outside that gym.

Ian said that he had a book that had 29 values to live by. So I asked him, “Does it have 'sacrifice'?” He paused a minute, “No it doesn’t. But what I was going to say is I have a 30th value; which I use sometimes called ‘fuck em!’” I told him I knew that value well.

I’ve been told by more than one person this week that if I have the energy to ‘keep a blog’ that I can turn my energy to “useful” things; things which might make a difference in the world, or things like advocacy work. These people are to use the vernacular, “knuckleheads.” For example, they don't bother to ask first how much advocacy I do on a daily basis; nor do they realize the amount of effort it requires to write and send a letter (Canada requires you to go and post it). They don’t realize that the tenet of advocacy; consistency is the very thing which is stolen away first by a chronic condition. Or as Linda puts it, "Why are the people who are disabled or SICK the people who should be doing the advocacy? Why not them?"

There is also some misunderstanding that because I write about doing stuff, I am full of energy and spend most of my time jaunting here and there. Or that because I go places or do things, it implies that I feel good or heathly; or feel good enough for a long enough period that I decide like able bodied people to "use up" some time. No. I go places BECAUSE I feel crap. My heart was erratic for hours yesterday, I was dizzy for several hours, I couldn’t sit up in the evening, and was having an emotional meltdown. So by 7:50 p.m., I felt like one of those animals in a Disney movie that drags itself off into the woods before they send the 12 year old to go and blow out it’s brains “for mercy.” (Or "To make a man of you son." WTF?)

I knew yesterday that if I did not get pushed up to the gym, and did not try at least to hit the heavy bags then I would get weaker the next day, the following day, and the following week. So I went, and I hit the bag, I tried to hit Ian. Then I came home and wrote a blog because I have determined, for me, that this keyboard is my beacon, my lighthouse, my telegraph wire. So every night I write out different subjects and essays to post which all have the same subtitle: “Here I am, I’m alive; I’m alive and I haven’t been silenced yet.”

This is a 'Hey!' for all you mothers, you dads, you people with Chronic conditions, you friends and family and lovers of those with health issues; you know that often there are not good choices. We don’t get to choose between ice cream and radiation treatment. There is only going on, and facing what has to be faced until it cannot be faced anymore and trying not let the inane and the medicos and the rest of the shit hanging overhead drive you insane. At least that is what I try to do and part of that is making what choices I can. So I may not have control over my heart or digestive system, the right side of body, but when my clock hits midnight, I will have posted. Yesterday, I was on codine AND tramadol and my fingers still hurt, but when midnight came, I won. I’m a lucky person; not many of us can go to bed at night secure in our knowledge of victory.

Tonight one of my care workers wanted to know why, “You have SO MANY skulls.” I told her they were cool. She told me that they weren’t, that they were “unhealthy.” I don’t know how to explain the irony to someone who lives a life on her side of the veil. That right now I have more in common with a particular 16 year old girl than with her. This is a girl who got childhood leukemia; wasn’t expected to live but did. Her body will likely never completely recover. She used/uses a wheelchair. She doesn’t get her classmates who read fashion mags and who seem just a bit shallow (a little?). Her parent is worried; she is friends with the ‘wild crowd.’ Really? Go figure. She lay in bed at night and realized that she would never have a boyfriend/girlfriend; wouldn’t have sex; wouldn’t ride on a motorcycle; all those night thoughts. And now she is back in alien territory where girls talk about mascara color and which purse is to ‘die for!’ And my home care worker can't see why I have skulls on everything I own? Like Jimmy Cricket said, “When you are afraid, get your friend to whistle.....and if he isn’t ripped apart accompanied by snarling noises, you will feel a LOT better!”

I am watching the documentary The Bridge, which was going to be about a year in the life of the San Francisco Golden Gate Bridge. Only the film captured SO many suicides they decided to interview the people who saw the suicides, the family, friends, in order to get a picture of these people who routinely kill themselves jumping off the Golden Gate Bridge. I can’t say it is a “cheery” film but fascinating. At one point I turned it off because there was a bit too much of “hi mom!” going on – and decided I didn’t want to spend too much time ruminating on which family members might be happier if I topped myself. Linda by the by, is NOT excited about me watching this ("Watch something cheery, like that crime show you like about rapes...." - That's Law and Order Special Victim's Unit - see, there are always sexual abuse, incset and rape (nothing unusual) but on the show the people are CAUGHT and PUT IN PRISON - every 45 minutes they catch another one and put them in prison - I LOVE that show). Only the fact that Victoria has no decent bridges I think lets her allow my viewing The Bridge. I'm glad, there just aren’t really a lot of good documentaries on suicide (a few good books about them me!).

Well, I’m out of time, and that seems like just the right cheery Xmas note to end this post on. No, seriously, I understand wanting and needing to be anything than ‘here’ – but hey, just think the narcisstic thoughts I do to keep myself going: “Wait a minute, I’m the star of this film...I mean world, and if I go, then the film ends. And what will all these little minor characters do? It will all be over! No, no......for all the little people.....the show must go on.” (I'm ready for my close-up now, Mr. DeMille!)

Monday, December 17, 2007

Xmas bitterness, those "crafty" people and yuri/lesbian anime

Well, the Xmas wasteland is upon us. Either that or I am a crap writer since my comments went from 16 a day to three. My guess is that everyone is busy doing whatever it is that people who keep Xmas do – which from the way people seem to be moaning this week, can’t be all that fun. It honestly sounds like the annual “bad sex with the ex while drunk.” Which I guess makes me question why so many people do it year after year if you aren’t having fun. I mean I know there are those who have FUN at Xmas – they are the ones who start decorating in October and have Santa’s Elves fighting the Pirates of the Caribbean on their rooftop. Then there are the people who manage to do craft things, which is why I refer to these as “crafty” people; not just for their ability to make something but to make something which takes a fair wack of time without us noticing.

My least favorite crafty person is someone I know who does cross-stitch. Let me tell you, cross-stitch is a bitch; I decided to do a cross-stitch on a train trip across Canada: five full days. I think out of the entire fruit basket shown in the pictures, I finished a grape. So when THIS particular person pulls out a framed cross stitch the size of my flatscreen monitor with a hideous bible scripture on it (all that effort for ONE scripture and she has to pick II Kings 2:23 where children are eaten by bears for calling a prophet ‘baldy’?). Then says, “Oh, this is just something you might like to hang in the bathroom or kitchen, I have so MANY of them already” with the implication that it took her two days instead of five freaking months. If you can do a cross stitch the size of my flatscreen in two days then I say there be demons in you and we must CAST THEM OUT!

See, normally I would worry, acting all batshit like that over a simple craft turned bible verse (isn’t EVERY craft eventually turned to bible verses?) except see, we are a week from Xmas so, hell no one is reading this anyway.

I would say I haven’t had a good day but I’ve said that so often it loses impact. How about, this morning, I had NO commitments for this week and NOW, I still have a couple hours of work to do, I have to do work all day tomorrow and the rest of the week. PLUS for some reason I can’t quite understand a woman who visited me today thinks I am making her husband the Xmas present SHE is planning on giving him (have I mentioned I am NOT ‘crafty’). Which would be great except , a) She hadn’t told me what I am making him exactly b) she hasn’t given me the materials and c) Just because I’m housebound doesn’t actually mean I have LOTS of energy, rather the opposite in fact. All I know is that if I don’t deliver….whatever it is I might sometime soon find out that I am supposed to make, I, Elizabeth McClung, will have ruined Xmas….and I don’t even KEEP Xmas. So yeah, no pressure here.

Ironically, as chaotic and nonsensical the preceding paragraphs are; that actually represents today and what is going on in my life. How fucked up is that. Or how about this; I have decided to stage an orgy in the non-wheelchair accessible zone on my street as a protest. I need to find some people who like to “org” at near freezing temperatures first I guess. Actually that was just a lie because the only people who are visiting my blog this week are sex driven loners, if the google searches are any indication.

On that note, I feel there is nothing better to drive out my Xmas demons and bring in the spirit of the season but lots and lots and lots of lesbian kisses, lesbians kissing, naked lesbians, whatever. So here is a nice Yuri Video about what all of us (meaning me) want for Christmas; a) life like it is in the anime world where I transform as either an assassin or with magical girl powers which involve clothes and ribbons that defy gravity b) big breasts and c) lots of girl on girl kissing.

Sunday, December 16, 2007

Does Victoria Works Dept. hate wheelchairs and why my right breast hurts

Much like Sputnik all things that go up (at least in my life) are followed with a descent, usually one which leaves a long burning crater somewhere in the outback. So after going out for such a nice dinner, last night trying to sleep was unpleasant; the same type of ‘unpleasant’ as having your body disappear and your organs show up in various back room auctions would be an “unpleasant” end to your holiday in Columbia.

But this is what separates us humans from other mammals; that instead of hibernating with Hagan Daaz I choose to go play air hockey. Truthfully, I am starting to wonder how much relationship I have with the human species. Other humans don’t get to watch the veins collapse as they type a blog post as both hands start looking like a mix between eggplant and jellyfish; other humans have hearts that beat on a fairly regular basis. Most people with hypothyroidism and who spend 95% of their time motionless end up gaining weight, not losing large amounts of it. Well, that was off track. Which reminds me of my trip to Ye Olde Video Arcade because for the last week Victoria’s works department has decided to level off our sidewalk (and the sidewalk of the next block) by first digging it up and then leaving it somewhat done. I sure I would delighted if they did not manage to wipe out the only way I can enter or leave my building. When, oh when will the people realize that the jet pack wheelchair from Austin Powers films was a JOKE.

Anyway, the city DID put down a board so that people who stepped over the two foot hedge to walk around the sidewalk construction wouldn’t fall and hurt themselves. Jumping my wheelchair over a two foot hedge isn’t a trick I have mastered yet so I have to go though the one space left to me, which is a patch of grass (going the opposite direction). Linda and I had a conversation about why this blog seems to write so much about disability and we concluded it is because having mobility and other disabilities becomes this huge veil, this barrier that has to be overcome before ANYTHING else can be done.

So, the fact that I have no pavement connecting my apartment building to the rest of paved society is only half of the annoying part. Because the city is so efficient that they have ripped up parts of city blocks all over this area. So many parts that there isn’t any actual pavement for me to wheel my wheelchair on; and the other side of the road is under construction as well.

So how exactly do I get to the library, or go to go to the Y for boxing or today to go play air hockey? It turns out that I have to go on the road. Now this wouldn’t be so bad except that a) our street is parked up on both sides so though it is supposed to be two way, it only has enough room for 1.5 cars (not that we have ever seen a full car passing a .5 car). b) This street has the longest stretch on this side of town without any traffic lights so taxis and other cars do very high speeds (above 40 mph) down this stretch to make up time and avoid traffic. c) It gets dark at 4:00 and my boxing class is at 7:45 p.m. and I have to go almost two entire blocks in the dark on a street where cars can’t see me until they crest the hill at speed.

It just seems a sort of bizarre cruelty as I am out there pushing uphill in the street around parked cars while the pedestrians who are ON the sidewalk and step over or around the re-paved sections just sort of stare at me in the street. Kind of the same irony that makes 2/3rds of all the games in the arcade require functional feet which are the eight different types of car racing games (none of which have ADAPTIVE acceleration and braking), and the six or seven shooting games all which have a footpad you tap to reload your gun. And the dance machines? Or the motorcycle racers? Anyway, I try to focus on what I CAN do which is Air Hockey……and pinball.

Linda finally admitted that I won our last game, which made this one the tiebreaker. The one thing I can count on with Linda is that she gives me no mercy; at least not in Air Hockey or tickle fights. I quickly made a slight advantage with 3-2 and she had a very peeved look on her face as she fought her way to a 6-5 lead. The fact that I gloat and do a little upper body dance (with song) in the wheelchair when I get a point I am sure is no incentive for her to beat me. So, final point, I had the puck and was trying to hammer past her tenacious defense when….the time ran out. So 2 games to 1 for Linda….not that I am counting or anything.

From there we did our hydroplane boat game because it is the only “driving” game that has hand controls and then played the Pirates of the Caribbean pinball. Linda is a VERY serious player who stands far back from the machine, studying the motion of the ball, the angles. In fact she even asks me what ramp she should shoot next and how to get the multiball (like I know?).

I on the other hand play the “chaos theory” of pinball in that anytime something happens, I cheer and anytime my ball disappears I get glum and stare down the hole it vanished (or I shout “No! No! No!” right before it disappears). If my ball hits a ramp and things happen and there is binging noises and lights, I am happy, though I am also clueless on what exactly is going on. Often Linda will say things like, “The Ball is Locked” or “Hit the Treasure Chest” which must mean something to her. All I care about is that no matter how many times I save the little ball with the flippers, it continues with a determined death wish to try and outwit me and commit suicide and disappear down the hole. We played two games and in the first game, the ball was SO good at committing suicide at top speed they kept giving me “mercy” extra balls to play. Some guy drifted over and tried to chat us up by asking how much we played and how, you know, HE is the top score on that game. I think we were supposed to giggle and say, “Oh show us how?” and then he could get behind us (if his portly stomach would allow) and “guide” us in the art of pinball. Only a) Linda is very focused and ignored him completely and b) I was so busy horaaying that often both my hands were off the flipper buttons and the ball would commit suicide while I was busy. As I pointed out to Linda later, if she had played that right, she could have been having some “mustachioed sex this afternoon.” There was a loud “Ewwww!” Here you can see as I watch with glum face as my last steel ball commits suicide. (I won one game, she won one game – so we are tied on pinball).

Not the worst way to spend and hour, and I got Linda a caramel Apple hot drink at Starbucks because I have a card, which I think someone gave me. We also returned our library books and gave food to charity. If I have any sort of lesson learned from today’s outing it is that if you play Air Hockey from a wheelchair with your right hand, your right boob will hurt because everytime you reach or give it a slam, the breast gets one against the table edge. I guess professional wheelchair air hockey players have special bras or something. So, that’s probably the most useful thing I learned today, except when your pinball disappears up a ramp and the machine makes a lot of noise, you maybe shouldn’t take both hands off the machine and pump the air going “Whoo Hoo!” Because then, when the ball is fired out of some dark space on the pinball board like a cannonball, you might have a chance to save it with the paddles. That and the Victoria works department don’t think a lot about wheelchairs, but I think we knew that already.

Saturday, December 15, 2007

A dinner out ends with us going to Ninja town and dressing up as Geisha

Linda took me out to dinner tonight after she made a trip to Port Angeles, WA to mail all the ebay stuff. We went to this Mexican restaurant where we have a ‘history’; they LIKE me coming in a wheelchair and last time they made me a margarita because I said that traditionally the farther north you go from Mexico, the worse the margarita’s get. The female co-owner said, “That’s it, you are getting one Lime Margarita.” And stomped off with a determined look in her face.

So she wasn’t there tonight but a different female, M, was instead. And as happens when I go out to eat we got M in a discussion about how good females are at smuggling and working illegally. This discussion started because Linda has to pay GST tax when she comes back with the stuff from our Post Office box and so she sees all the people they pull over for inspection. It is ALWAYS guys. This time it was: guy with guitar (inspect for drugs). Last time it was: guy with surfboard (inspect for drugs). And group of guys coming for a bachelor party. And we were saying how females hardly ever get pulled over and when they go overseas and work illegally, even when they get caught the officers are like; “You really shouldn’t be doing this. When is the last time you called your parents?” While if a guy with a beard and long hair the same age is picked up working illegally it is: “Where have you been living? Who are your associates?” and “Come here for a drug test.”

M, totally agreed and said how she was in Japan for seven years, three of them illegally, and she eventually entered a sham marriage but got caught, “and they were totally nice about it.” Linda and other people refer to this as my innate ability to have people confess the illegal things they have done to me within 10 minutes. So, we told her we were going to Japan in the spring and what should we do. While we had already gotten the suggestions for the World Heritage sites, M was a bit more of a fun and party girl. “You’ve got to go to Kyoto and you can go to this place and they dress you up as Geisha’s in Kimonos and then you get driven around in a carriage”

I wouldn’t do that in North America, it is just too, um, not something you do in North America hey, in Japan it sounded kind of fun. Then she told us about the historic ninja village where the ninja were trained and they show you secret doors and stuff. This is the trashy fun photo happy stuff that we were looking for. She was very casual and laughed about how it took her five years to learn enough Japanese to order pizza over the phone. And how she had to download all the Kanji characters due to her hair frizzing because every time she went for shampoo she ended up buying body wash. The food at the restaurant was good but it is really things like this why we keep going back, getting everyone’s stories.

So she tells us how at clubs girls would come up and ask to feel her breasts. And she was like, “okay” because while she would be a B/C cup here, in Japan she was an F cup. And she says that all the bras are SO padded that even when she bought a bra it was padded out so that her C’s turned into F’s. I guess their fascination with the western women having bigger breasts thing is true. So Linda with her blonde hair and DD’s are going to be VERY popular (haha!). I told Linda we should invite this lesbian couple we know from the UK who are about 5’2” and have size J’s. I think in Japan people would think they were actresses.

Anyway, we asked her about how to introduce ourselves and she gave us tips on what names Japanese people can say easily. And then we told her about being married and (this is why I like this restaurant), she said, “Wow, they (the Japanese) are going to be so fascinated; they love different stuff…..Oh, you know what you HAVE to do” and she grabbed our hands, “You HAVE to go to a Love Hotel.” We had already heard of these places you go to in the city if you decide to hook up with someone during karaoke and you can rent the room by the hour. Oh no, she assured us, they have ones by the night and make sure you don’t get a ‘cheap’ one, you want one for about $100 and they have sauna’s and whirlpools and are super cool (she seemed to know a LOT about the different kinds of Love Hotels). But still, how often does your food server find out that you are going to Japan and that you are a lesbian couple and basically exclaim: “Oh...then you totally HAVE to have sex here!” Errr, okay, I guess a night of sex in a Love Hotel is just part of the Japanese experience that we will be required to fulfill in order to truly say we have been to Japan.

Needless to say that going to Japan is sounding a lot more fun (well except all the women coming up and asking to squeeze Linda’s breasts). I mean I find Shrines and World Heritage sites to be a bit like Cathedrals in Europe; one a week is PLENTY for me. I like to see them but truthfully, I am far more exciting to see Ninja town than an ancient monastery. And she said in Samurai town (near Kyoto) they have platforms without rails so the loser just topples into off the platform; makes it easy to clean up I guess. Now I’m wondering if I should pack an epee. And with the Love Hotel planned, that is completely changing my baggage packing plans: two or three vibrators, do you think?

So, I had more fun doing ‘trip gossip’ at the resturant than I did at the work Xmas party. Linda and I agreed that we are going to get dressed in Kimonos with the intricate bows which the experts do and go completely tourist. I mean, me in a wheelchair and her at 5’10” with Lara Croft sized breasts and blonde hair: do you think we might just ‘fit it unnoticed’? Yeah I thought not – so let’s go and have fun and leave lots of people in Japan blogging about seeing lesbian tourist Geishas out in carriages about town. Linda bought my $500 worth of yen on Friday. This whole trip thing is starting to sound like it really might happen. Zowie!