Sunday, August 31, 2008
Anyway, I did give one gift over the weekend, but not as many gifts as I would have liked. I was sort of sat upon by my ill health (sometimes when your heart doesn’t beat right, it is like a giant coming and sitting on you – ug!). So that kept me down, but I will make up for it this week!
But I did give MYSELF a few presents (oh was the task to give to others, oops!). Seriously, most of these I got over a month ago and have just been waiting to arrive. For example a sort of friend and person who picks up things for me in Japan offered (as he was sending me two books I bought; a Ghibli card collection – I said yes!) As you can see, the artwork is stunning and now I am wishing I got twice as much, but that’s the old problem of the pocket versus the eye (my eye is GOOD at finding things to get, my pocket not so brilliant in finding the money to get them.).
As it happened several people this weekend gave me gifts including a woman who had the stall next to the yarn knitter (last blog post) who was lusting after the Ashford (why is it EVERYONE including Neil knows this and I can’t remember it?). this woman sold goods out of recycled products, in fact everything she sells is recycled, but you would never know it. Anyway, after we chatted for a while she said she wanted to give me a card, because she said it embodied me. So here it is, and I guess in a way it is how I operate (I just tend to use more swear words!). Linda had some nicer way of saying it (like, "this is so you!"), I just said thanks and wheeled off in a daze.
I was kind of in shock (actually I medically WAS in shock but for now I mean emotionally) that someone at a farmers faire would just GIVE me stuff. I figured it meant either I exude some special essence, or I look REALLY bad, or maybe they had a similar mission we did, to give something that weekend. Which might be true because I was then given another gift, one which is just as much about who I am, the embodiment of me. It is this necklace which the person actually had commissioned for me (how humbling and cool is that). So yes, that’s right, I now have a pendant of Hello Kitty in her Goth boots, with a bloody knife in one hand and a severed heart in the other. SWEET! How incredibly kind and cuddly is that? And she even looks like me!
Plus by post I received from a land I will not name, these stickers, which when I received them, immediately made me lust for more, because I want to put them on people’s postcards. But I only have these six. ARG! Oh well, how do I decide though who gets the “Kangaroos Next 25 km” warning?
Actually a few people sent in gifts this weekend to help with the Postcard Project, which is becoming sort of a collective project as the postcards and the stickers are coming from literally all over the globe. Admittedly I end up doing some of the hand work, but I think this is great, how so many postcards sent out now have 3-6 people’s assistance in the creation of them (one person sends a card, another a sticker, another gives a stamp, I assemble and write the message - that's four right there!). So here is one person whose gift arrived this weekend, they sent me some postcards to send, along with a rubber stamp. I, being me, immediately put one of the postcards and that stamp to work (hey, we have people who LIKE spiders on the list!). As well as this person/s who send some cards to add to the collection. I have to say I have a few candidates in mind for that woman in blue, as well as the seagulls.
So, if you get one of these postcards, I hope you won’t feel it is less of a surprise but more of the joy in receiving a group effort, that your card has ALREADY traveled and been cared about by people before I started on it, just in order to get to you! Thanks to those who sent in cards. As for me, I sent out 32 today (a weeks work) but still, that’s 64 in two weeks so yeah, I do spend hours finding, ordering and buying postcards every week.
In another gift to myself, a person we contacted in Japan went to a limited Exhibit of Oga’s art work, another artist who does some work for Ghibli Studios. I have seen his work in the Museum in oil paintings. To give you an idea, here are four of the postcards, just “simple” reproductions of his art. I only have one set, and since the Exhibit is going off, I can’t get any more, so I am afraid this IS a gift for me (sigh!), and you will only be able to appreciate them on here (or when you visit me in person).
I was also given ANOTHER necklace this weekend. An Opal necklace, which the person said that opal as a necklace is supposedly bad luck……but what else could happen to me? I really wished they hadn’t phrased it THAT way. I prefer to think of it as since my disease makes everything topsy-turvy, that bad luck opal will be good luck for my heath – and that’s is why I am going to wear it (when not wearing the heart cutting out Hello Kitty!).
Also, a gift I had been waiting on for a LONG time – I don’t know how long, so let’s say 6 weeks, a long, long time (two months?), finally came. And that is my Gothic Lolita Hello Kitty Mug designed by h.naoto (he is Japanese fashion designer – if you are somehow overflowing with cash he has tops for $200 or so, but I want a red spider backpack he makes which would be perfect for a wheelchair and is only (just say it fast so that word sounds believable) $88 or so – if it helps I have a $10 off gift certificate?). Anyway the mug was considerably less but is the touch of COOL, Hello Kitty is subversive, Hello Kitty is not just pretty and pink (except when covered in blood). She's cool, and though I can’t wear goth loli (would probably die of heat just putting all those layers on), I can enjoy my Gothic Lolic Mug. Ahhhhhhhh……it is true, some of the best things are worth waiting for (like a new kidney?).
I think that is most of the pile of loot that I gave myself and got (notice I didn’t mention what I gave because I am kind of secretive about things like that – to me gift giving is like a form of communication. Unfortunately I think that means either, I really like myself or I really like Japan, or I really like Hello Kitty, or all three). I hope you had as much fun as I did with giving and maybe you will show me the gifts you gifted yourself with or received?
Also, for every postcard and card and gift I have received, thank you for thinking about me. I try to write you to let you know but with the swiss cheese brain I have now, I miss people out. That isn’t intentional. And the same with postcards, sometimes I find I have forgotten someone so I write one right away! It was fun showing you all the stuff, I liked it (I was like “Here, here, look at this! Look at this!”), so I hope you liked looking? I hope you received or gave some good stuff too!
Saturday, August 30, 2008
Yes, that’s right, ever since her child got into 4H decades ago she has kept first a flock and now down to just four sheep which she shears in the spring and then makes into yarn. Talk about doing it the old school way. She had lots of terms that went over my head, about double spinning the yarn and how she dyes it but I enjoyed talking to someone who takes such delight in their craft. She likes her Schacht but is in love with a New Zealand Spindle which apparently is the spindle dream machine.
After that we went to a craft store because Cheryl wanted to look at the inks and I wanted to look at the rubber stamps. I only found one company (again) that was up to my quality level but ended up buying a LITTLE bit (Linda says my “mad money” for next two weeks is reducing quickly, sigh (“Go ebay sales go!”)!
Afterward, I had a series of seizures, both taken home and at home and then some serious problems with my heart and my body stopped converting oxygen. That whole problem took up about five hours. There were moments of “Should we go to the hospital” and “Can they even do anything? (Hospitals can't MAKE a person ON oxygen convert it if the body isn't)” Also it seemed that one kidney might be shutting down. So that was like, not great.
But this wasn't MY FAULT! I didn’t actually do anything bad or crazy, it was just started as a punky day, had heart problems before getting up so this is just probably a continuing part of that.
Later I will talk more about the moments of mortality I had when I stared at my hands while they turned purple (fingers, thumb), when my heart was like stabbing ice as it couldn't beat for more than a few seconds without just failing and fluttering. And my blood pressure was so high and my kidney and heart hurt so bad I could only scream. But I am still paralyzed from Seizure number X. That wasn't a great head space.
Either way, I still got out, I had fun, I talked to some people and right now I have to run because I am working on some postcards.
See, a little brush with Mr. D. isn’t going to keep me down.
I hope you are having fun days (and I did have fun parts!). Or if not, giving tomorrow another chance. I'll be back tomorrow with pics and stories. See ya!
Friday, August 29, 2008
Yes, I like going outside. On my high school question sheet: “What do you want to be/do when you grow up?” I did not answer either, “In a small prison cell” or “In a locked sanitarium.” Does anyone?
It vexes me (yes, use the lisp, “I am Vexed, and Very Vexed!”), that “person with severe disability” and “person who is ill and stays in home a lot” someone makes my going outside to be an oddity, instead of a natural human desire (since I have notice most people DO go OUTSIDE!).
I will admit, when you have a severe disability going out is a risk, how long will you be stable, what if something happens? While at home everything is set up for you, as you like it, and if needed you can always go to bed, your medicine from pain to anything else is right there. It is a safe space.
I have found that new things and risks follow the rules of three, whether that is just going outside to look at things, going to a new restaurant or a vaction or a new whatever (like a sport). 1/3 of the time it will be horrid. It will be the vacation from hell. It will be the restaurant trip of disaster. Or if you have just gone out to look at the flowers, you will be stung by bees, have a pollen attack and be in bed for two days. BUT 1/3 of the time it will be OKAY. It will be a little bland, nothing super but not that awful either. And then 1/3rd of the time, it will be GREAT! These are the time when you go out to do a little gardening and see humming birds, or go to a restaurant and there is a woman who starts singing opera. This is the time you go for a picnic and see foxes or squirrels or deer.
But if you don’t RISK and have the 1/3 BAD experience and then TRY AGAIN, you don’t get the chance “Great” experience.
So first I am going to tell you how I am doing. I am in bad shape. REALLY bad shape. And the last three days I keep TRYING to get better, but somehow I get worse. So now, I cannot really move, and I need support for my head and I am in a lot of pain, and I need oxygen and did I mention the pain because it is so THERE that I think I am going to mention it twice. So that is where I am at (plus I didn't sleep much last night - pain again).
But this is what I am going to do, and this is what I am going to challenge YOU to do. Because I’m your friend, and that is what friends do, challenge us to go skydiving with them (not LIKELY!), or invite us places or push our boundries: but also be there to support us.
So, this is what I will do. I will go out this long weekend (for North Americans it is a long weekend). I will go OUT. I don’t know if that is to the park, so I can see squirrels or just to go around the block and photograph flowers but I will go out and I will record what I did this weekend. So that is part I (that means there is a part II).
So my challenge whether you are disabled, or not disabled, as your friend is to ask you, to challenge you, to go OUT. Go do something. Get outta here! Stop reading (wait until the end) and think about what you are going to do! Okay.
Now if that means that you get your caregiver to help you to the porch, that’s fine, that is OUT, outside. And if you are in the UK or here and it is raining, maybe you will need to wait a day or find somewhere ELSE indoors. But the thing is, we as human beings take BIG risks and we take little risks, and every time we go out, we are risking ourselves emotionally (we have expectations!) and physically (for some of us that is a higher risk than others). So being able bodied or disabled we are all human beings, and we all have fear and we all NEED to take risks (hey taking a shower is one of the riskier things around!). So go outside, take a risk, and see what happens.
The second thing is that this week I was sort of accused again of being a liar because I guess when you see me on youtube and pictures and all that, well, that just can’t be true or something. Or I am one of those unemployed people with some ‘fake’ disability who just suck down money from hard working people and the system (Except I don’t receive a penny from any agency). So for me, I will GIVE something to someone this weekend. That is a very human act I think, the act of giving.
I have been blessed from readers and other people who have given me things: postcards, hello kitty stuff and last week an anonymous gift of a human heart (seriously! It was very sort of E. A. Poe. Also what about me says "Give human heart" - never mind, don't answer that, I actually know that answer.). I appreciate each postcard and act that goes behind the gift. And sometimes I am able to tell them that and sometimes I am not but it doesn’t negate the act, or the effect, does it?
So my second challenge on this long weekend is to GIVE something to someone, or prepare to, if it requires mailing. If you are looking for something small and manageable I recommend a postcard or a letter – you probably own it already and then there is just a cost of a stamp, or you can hand deliver it if that is possible. Or give a book. Or give a flower.
I would ask this actually NOT be an act of spontanous kindness, to NOT be paying the change of the person ahead of you in line or counting helping someone carry groceries. Not that I am anti-kindness and kittens. I am very MUCH for kindness (and kittens). I think helping people is super!
But here is the challange to GIVE, to choose, to think, to decide who and what and why it is right for them is not spontanous, but something altogether different. It is the tangible way we humans say, “You make a difference to me.” Or “I care about you.” Or “I though you might like this.” Or “I wanted you to know I was thinking about you” or whatever the message is in why you give what you give (please, NO LUMPS OF COAL!).
So that is it, 1) Get out of here, go outside (just once in three days is enough to please me).
And 2) GIVE – give something to someone, if that is possible at all.
Why, because we are not people BOUND, we are not BOUND to our house, BOUND to the ideas that people have of us, BOUND by fear, BOUND by the idea that risk of doing anything is too great.
And as humans, it is rather normal to think of us, of ME, quite honestly, and while ME is a word that is fine and good, I am asking as a friend, pushing a little if that is how it feels to you, to think of how to make someone else happy. And I know that there might be in your life the pain and the stress and the condition, the family problems, the work and relationships issues. But just a little time, a little something for someone. Surely there is a co-worker or a relative you don’t HATE (well maybe at least a co-worker!). Someone you know, someone you have heard about, some child (kids actually LIKE presents), some old classmate or friend whose address you have sitting around and you just happen to have a pen and paper…hint, hint!
I will report back how things go. You can too if you want, or keep it private if you want or say “Elizabeth is a freaking nutcase”, if you want.
Also if you have no postcard and WANT a BLANK postcard sent to you, so you can send a postcard to someone else, let me know okay? I did a post on my last little batch over at the Postcard Project if you want some ideas(I made a new post today - hint, hint; you can go look even if you don't want some ideas - hint hint. You could even whisper: leave a comment).
Go outside – take a risk and care about yourself
Give something – take a risk and care about someone else.
This isn't a challenge to you, this is a challenge for me; it is just I want a little company for my risk taking.
We are not bound, I am not bound. I am not a person who is ODD because I have my conditions and yet I still choose to go outside. Part of being human is the ability of choice. I choose to expand my life, I choose to try and expand another’s life. I am a human being, unbound.
Thursday, August 28, 2008
Okay, I was physically abused in my life for many, many years/decades. I have not been ‘abused’ by Linda. Yesterday was a really horrid day for me, partially because I again tried to reconnect with my parents. This meant talking to my father for a LONG time about things that are so unbearable painful for me but yet to him completely dismissive and forgettable or worse that by asking him to remember things like, my brother sexually using my body for over a year, I was being a BAD person. Plus it was clear that my father was, though living a few blocks away, completely unaware of any of my medication conditions including: my need to convert oxygen (my hands turning purple along with my blue lips while we talked didn’t mean anything to him), my seizures, my partial stroke, my loss of memory, pretty much anything. In fact for my anniversary they gave us an album of pictures of me, there aren’t really any pictures from the last two years (with me in a wheelchair), or me fencing (because though invited to tournaments they never came, not even the ones in town).
But then, my father comes from a family where abuse=love. In fact to this day, the rest of the family gets together to verbally and sometimes otherwise abuse each other. Literally nothing good is said; if you make someone cry, if you say something so hurtful they leave, or vomit or pass out, then that means you win (Seriously, spouse dies of cancer, make fun of the member of the family stupid enough to marry them, and then make fun of the dead spouse). And yet they keep doing it over and over again because that is the only signs of love they understand. My mother's heritage was even worse. So in one way I can understand why my father even when he may not WANT to be like that, still ends up being like that. And how when describing how I was told in very vehement terms by my mother that we were not going to be ‘allowed’ to go out with them because I acted completely inappropriately. It turned out that the ‘inappropriately’ was passing out and falling face down in my food. To my Father this was not even memorable. But when he realized it was in the first 9 months or so when “they were ‘processing’ my disability” (meaning they wanted me to control it better so that I represented them better in public….like not be in a wheelchair for example), he said, “Oh yes, that would make sense then.” No apology or remorse really just a “Oh yes, that is how things are.” I don’t want to go on an on because I do love my parents even though they often and frequently hurt me, the one time they might see me every month or two. This however was a concentrated dose, prolonged and finished with my father leaving me crying because he had an appointment elsewhere, and well, me crying wasn’t really enough for him to stay was it?
So all in all a really bad day. Then we had the blog and some emails which didn’t go that great to be honest. But I am the one publishing the blog and I choose to put stuff out there (like this) based on my assumption that people are basically good and sometimes things happen in a very small space of time and you get turned around inside. And I became to believe what I USED to believe; that I deserved whatever physical, sexual or other abuse would come my way. In fact, I used to believe the only way I could exist was to be abused. I know that is wacky thinking but that’s what getting beaten for 19 years and then being forced to tell the person who beat you that you love them (and beaten again if it doesn't sound sincere enough) kind of does right? That’s what being sexually abused and then getting beaten for not having your bed made perfectly does. That is what happens when your extended family tries to create a restraining order on you, or your own grandmother refuses to look at you because you came 'out'. Being sick or disabled doesn’t make a group like that change their mind, being disabled only proves to them that I was ‘weak’ and not really one of them anyway. That is my extended and close family.
So when Linda late at night misunderstood the previously blog and kept verbally slapping me down because she kept talking about how I was stupid and they didn’t want to hire me because of my stupidity, and I was trying to tell her it was the WHEELCHAIR. But she kept saying, “Let me finish what I am saying,” in that tone a boss uses to the lowest underling before going on about the type of stupidity people see me. Well, that was a bit too much. Plus I had the computer open to yet ANOTHER incredibly painful email sent to me ABOUT me and disabled people. Now, Linda knows I am not stupid, she does not think I am stupid, but we run into people a lot who think am stupid because I am in a wheelchair. She didn’t read the blog, or didn’t remember it perfectly and while the post was about how I don’t even get to be seen at all, don’t get to be a human because all people see is the chair, she thought it was about this “stupid” issue. Of course having my partner going on and on about my stupidity while I am in pain (physical) and at the end of my limit of emotional pain too was the end. Also, when Linda works late, she often comes home and has office speak, so I have to just say to her, “Hey, I am NOT your assistant, so why not try saying that again.” Because spouses don’t say “I want you to get me this, this and this and I want that forwarded to me.” – at least we don’t, but if she works 10 hours as a manager at work, that is exactly what she does.
So, I left the bedroom. I went to the kitchen. To Linda, Beth upset plus Kitchen equals Beth is going to get a knife to cut herself. So when I moved my arm she grabbed it. I don’t think she knew how upset she herself was (for reasons not for here), nor how sick I have become and so she grabbed me hard enough to leave little finger bruise marks. Remember, only a short time ago, I was so strong that I could probably lift Linda up with one arm, my epee arm. So Linda grabbing me with the same strength as then (which may have been the last time I felt like this), had a totally different result. Then as I tried to move forward she body checked me (now that I am smaller and weaker than her, I think again, she is not used to the vast difference in strength), hard enough to wrench my shoulder and bounce me quite a ways. Was Linda “physically abusing” me? No. She had however made an assumption and acted on that assumption before talking or waiting to see if it was correct. It was a late and hard day for both of us. And I had not given her the space to tell what she understood and then corrected her but took it all very personally. So no winners here, just the kind of things that happen when couples who love each other have bad days.
However, her bruising and body checking/slamming me confirmed to me WHO I WAS. That I was a person who got these kinds of hurts, these emotional hurts because I DESERVED IT. This idea/action opens up a door in me. Inside that door is a demon which says, “Only when you have been punished ENOUGH will you then be loved.” Because that is what I had been told and what had been written on my body for a couple decades. So I had a whole day of emotional pain to punish myself with, so I started hitting my face, and my body and my legs, and my face again, and standing up, and then falling down (because I wasn’t on oxygen, and not so good on feet anyway).
Okay, this is a very private thing that people with abuse know about sometimes and those that don’t think is sort of crazy. And this not who I am nor have I done anything like this in years, in fact, I thought all that was gone forever. So I guess there is some counseling in my future. But the thing is that Linda tried to talk to me, tried to keep me safe, would sometimes leave to see if she was the trigger, would do anything EXCEPT grab me again because she knew now THAT WAS a trigger. I was in a particularly altered state. Linda wanted only to hug me and take care of me. I couldn’t let that happen until all my sins had been laid upon my body (meaning that I had been beaten and beaten until I couldn’t do that anymore).
So, again something I didn’t really want to talk about to everyone. Something I don't want to be judged about unless you have lived a life like that, in which case this really doesn't need the whole explaination. But this is the internet and people who care about people are going to have feelings. Okay. I would rather show you the type of screwed up person I am, the reason I call myself “the thing” or “the monster” and believe that I can only cause pain and suffering to those around me, than have anyone believe that Linda did this. I am saying this, not in a “Safe space” but in a public and open arena where people will again probably use it against me, because I love Linda and I would rather people understand the truth, which is complex and kind of ugly, than think she is an abuser. I AM an abuser, I just only abuse one person, myself. I never hit Linda, I didn’t last night.
Are my parents to blame? They were just showing me the kind of love they received. Were THEIR FAMILIES to blame? Or was I to blame because I knew better, I counseled about this and yet, this trigger broke through. Was Linda to blame simply because she was having a bad night? Or were the words to blame, words that every other night would have made me laugh and go, “No, not the stupid, the wheelchair, see, I don’t even get up to the level of being assumed stupid because that would require me to be a human instead of just a wheelchair.” Or was I to blame because on the same day I was getting slammed on the phone, on the internet, on email, I decide to have a long conversation to give my parents another chance (which turned out to be another chance to hurt me beyond comprehension). Or is it just what happened.
Well, once a person IS done beating herself, if they have a system which is not so greatly balanced and ill like mine is, it then becomes a problem getting to sleep because I stop breathing. A problem because my lung won’t inflate and my lips and hands are purple. I problem becuase I have partial seizures. A problem because if we go to the hospital I will be under suicide watch, and a problem because I haven’t taken any pain pills for the whole day, and just because you get the demon back behind the door, it still leaves you a wrecked body to deal with. (Seriously, today, I feel like I've been beaten up.....laugh, laugh)
So there is the squalid tale of yesterday. No, Linda is NOT an abuser. Nor an emotional abuser. We are a couple who are trying VERY, VERY hard to leave the legacy of the things done and the attitudes forced on us, into a new and better ones. We want to be balanced, loving, supportive individuals – we know exactly what we want because we have seen the opposite in many forms. And we work toward that. Why yesterday/last night happened is something we will work together to find out and to stop, particularly to stop falling at times of crisis into old patterns. But if anything, it is about some people who are hurting and vulnerable, which I think could include a lot of people out there reading who are hurting and vulnerable in different ways. Now, this is a partial explanation of last night. If I could please, can ask that you please try to treat it with the respect as if this WAS a safe space instead of the big bad internet.
I want to be a good person, and I want to be honest. To do that and live by my values, today that means I have to share with you something very private and rather horrid about me as a human being. Because I want you to understand that to Linda at these times I am like a cat or dog from the SPCA who has been abused. She wants to take care of me when I am in those states, but sometimes, I am so far back in that abuse mentally, I can’t even really see her. I don’t think there are bad people in this story but one person who is and was hurting and couldn’t control herself and another who is hurting because the person she loves had to beat herself to the point of semi-consciousness. All because she (which is I) couldn’t break the chains, couldn’t believe that there was love, unless there was abuse.
Wednesday, August 27, 2008
I did have to hold off a couple comments because I did state that the Mr. Anon in the previous piece was an archtype and it became easier to attack him than it did to share of ourselves. Also that Mr. Anon was going to be an advocate one day, he just didn’t know it yet, because age, if nothing else introduces us to pain, to chronic conditions and to our limitations. So while I put my name out on this blog and continue to stand up as the whipping child, I was giving Mr. Anon a pass, he spoke his piece and I spoke mine. So if your comment didn’t appear and you want to repost it without the attacks on Mr. Anon I will be happy to publish them. I don’t want the comments section to be an “in club” or a place where there is ugly attacks at length. And if you do like that, I can recommend you to several feminist blogs where the many dozens to hundreds of comments on the post are often viscous attacks of individuals.
For me, it seemed today was a lot about learning who I was, and who I wasn’t and what I was good for and what my value is (less than $500 in case you are wondering). I have been emotionally attacked several times today and physically a couple too. Some of those were by proxy. Turns that, for me at least, there is a difference between emotional pleasure and emotional pain, and between physical pleasure and pain.
Yesterday, while trying to come up with the #10 reason of why to live, I quickly ran through my mind and came up with 10 reasons why I should die. Pretty high up there is because a great many people would be pretty darn happy with that outcome; it would resolve all sorts of conflict from relatives unable to tell anyone about us as a couple to people who still don’t “accept” my being sick. Darn it, another one of those ‘lifestyle choices.’
I did a blog today for the Postcard Project. I also ended up working out the average cost per postcard. But the number is so ludicrous that I have no intention of telling anyone. I have managed to get past my fear barrier and put some things on ebay, a couple of which have sold. Ironically, I have spent 1/3 of the money already on a set of 12 postcards. And I have a few more orders for stickers and postcards in. Yes, I will never learn. But on the other hand, if I did cocaine or heroin, it would be of no good to anyone but myself, while with this, I presumably help others, or at least give myself the illusion that such is so.
I had some prolonged contact with some family members today so there was some talk about sexual abuse (mine), and how sort of unmemorable it was for everyone else. Oh well. I guess it is like the news, got to keep the abuse current to keep it interesting or have memorable conversations. So I am in the mood for a good rape if anyone wants to drop on by.
Also, was going to make a joke about if anyone wanted to do a snuff film but then realized I wasn’t joking. You know, that kind of nice head space.
The problem about having a blog by your name, filled with pictures of you, and the like is that if people WANT to hurt you, in email or otherwise, sometimes not even intentionally, it is really quite easy. There is literally no place to hide. It took I believe about 26 hours from me revealing the disability I was most ashamed of and one which I am quite capable of hiding, brought back to me held in the air as a reason I was a lesser person.
So it would be easy to not do something like that again. Except then there is no point to this blog in the first place. There are no awards listed on the sides of this blog because I don’t display them. This blog is about either the writing, the story or both. And when either bores you, please feel free to depart, to find someone with a disability who is more interesting.
I am not, it seems, a disability activist, because I only write about ONE person generally who has a disability. Nor am I a feminist, because I write about being disabled (which I guess comes under Hobby?), dunno. Not engaged in the feminist blog wars of today, which doesn’t seem to include whether all women can ride city buses or be able to apply for jobs; able bodied or otherwise, but about more ‘important issues.’ In fact if there is one thing I can almost assure every reader is that this blog is not going to be considered about ‘important issues.’ I don’t blog about politics (intentionally), or lesbian gossip or films (intentionally), it has pretty much been limited now to what is it like from a single point of view to face pain, to face indifference in a medical system, to face loss, grief, degeneration, and death. And it covers both the physical and emotional ways in which a single individual tries to deal and cope with that. And that’s it. A conversation today about my funeral, how I want a small wake, and who is not to be allowed.
Lyrica is great and Lyrica helps me have a time when I can do things and plan things and get things done before it stops working, because when it does, the shit is really going to hit the fan. I was going to post several days ago that if you WANT a postcard that you had better ask very, very soon, because the quality of my writing, the effort it takes me to hold a pen and the times at which I am simply illegible are increasing. But then I had a good day and so I put it off. That is what life is like right now. I am taken to the brink over and over again and then I manage to have a good day and I put it off. I don’t kill myself today. I don’t stay in bed today. I don’t give up on going outside four times a week today. I don’t give in to the pain today.
Except today I did. Today I beat my face until it was raw. And my body. I did it for some of you. Since you weren’t here to do it in person, or drag me behind your pickup truck. It is my demon and today it came out to play. Linda grabbed me, she hurt me. She shoved me, she body slammed me. After that anything was fair game. She had told me that my body was something to be used, and so I used it and used it until there was no more left. Until I hit the walls with the force.
You know, I don’t really like to face abuse and overwhelming opposition and bullying. But it is, in some ways, all I know, all I know about people and all I know about myself.
I will be back and I will continue to post the things I hide, the things I am ashamed of becuase this is my record and I don't know how else to do it. I'm not allowed a cat you see, management says no.
Tuesday, August 26, 2008
Then I was delayed getting a nap which culminated with me having a couple major seizures. The purple hand that was oxygen deprived was a clue this wasn’t a great day. What I don’t understand is that I went to Badminton last night so should be good (lost, lost, oh I just couldn’t click with the people I was playing with including one guy who would immediately go to the opposite court of where I was – real subtle dude). So I ended up partnered with one person who didn’t think I should be there (seriously), and that maybe people in chairs shouldn’t be playing badminton. So DURING the game, if it was out of my reach the person would just stand there and stare at me and say, “Hey it is on your side.” I eventually broke down and said in my repressed rage voice that “No matter how much I might WANT it to happen, wheelchairs don’t travel sideways five feet to get the birdie.” Anyway, we lost and my partner walked off and then when I put my racket in the rack they came up after a bit and took theirs out so we wouldn’t end up on the same court again (the next four rackets go on to the next game). Double Subtle.
I guess what bothers me is all this discrimination is open. Open, public, in your face bigotry! Recent I went with Cheryl to the store that a sign saying they were hiring part time, full time, management, and used the RAMPS to get down into the store. The woman told me they were desperate, that they had SIX stores on the same road and all their staff was leaving in two to three weeks for school. So when I said I had 14 years retail experience, there was the usual hemming and hawing but at the end, she actually came out and said, “There is a lot of WALKING in this job.” And when I pointed out I had already gone everywhere in her store in my chair there was the the usual, “Well, maybe if you talked to X, the person in charge of hiring….” (meaning “You got no chance but MAYBE she might hire you.”) And so I asked, that “‘when I drop off my resume’ you want me to put that I use a wheelchair on it?” And she was like, “Yes, just so…..they know….you know.” (oh, I KNOW!)
See that is the minor difference between having a disability act (like every other western country) and Canada, where my only recourse is to “claim” I am losing my “human rights” on a federal level, but that means I spend a decade over a Federal Supreme court case (instead of simply calling the city commissioner).
It wasn’t about me. I mean this woman was DESPERATE, she would have hired Cheryl, who was using a cane, because she could WALK. But I couldn’t, and while the job did not actually require a “lot of walking” it did allow a person in charge who thinks that people in wheelchairs shouldn’t be there, and let them actually say that. So I can’t even get a $8 an hour job filling in for an hour while someone takes a lunch at one of the stores? Because someone in a wheelchair sitting there ringing up customers is just not what that person (or actually any person working at any of the stories we visited that day) could imagine. So like the person who I played with, they would rather LOSE, than even TRY to learn to play WITH a person in a wheelchair. At badminton that person stayed on their side and stayed far from me. I won the first game but the second one is what I remember.
There is something about being reminded so often that as far are most people are concerned it doesn’t matter that I exist. See I could be a fucking genius with an un-recordable IQ (actually it was just they said the tests weren’t sophisticated enough yet), and a shitload of degrees, or I could be a vacuous barbie girl who stares into space and ponders yet another few hours why it might be that having a wheelchair makes maintain long, painted, french nails REALLY hard! All that matters is the wheelchair. Actually I probably could get more jobs as the perky barbie girl hired out due to my hobby of doing wheelchair modeling, to put a perky smile on a companies who wanted to be “disability friendly” for a day. Because when the RCMP civilian sector actually says in a recruitment tent they won’t hire people with Fibro or Chronic Fatigue…..that means you need to have an ad to show you are complying with Federal Hiring Targets, so a picture with someone in a wheelchair with other smiling people with a “recruiting now” sign is going to be part of THAT plan.
What bothers me is that I didn’t even make it to the usual, “This is an area where we find women don’t usually excel!” or whatever other sexists bullshit there is, no, here I didn’t actually didn’t get to be a person at all because all they could see was the wheelchair. The human (or non-human) in it was irrelevant.
One of the few things I can say I am genuinely happy about is that I AM dying, because I don’t have to take this bullshit much long. I don’t have continue to be told, as I was by one employer, that no, they wouldn’t hire me because ‘we already have an arrangement to hire mentally challenged people.’ What? Well slap a “gimp” sticker and add a flavor because I actually thought that I, Elizabeth McClung was applying for work, not “Quota girl” or “Wheelchair” or “wrong disability for our token disabled person.”
I know a lot of people are against Quota systems because you get hired and people there KNOW you are the “token” or “quota gimp.” Which just illustrates that some people don’t know how to FUCK UP A SYSTEM FROM WITHIN. I DO! Hey, in a city where I could (and Cheryl or Linda will back me up) get a job by the end of the week if I simply WALKED IN THE DOOR, I will take ANY token or Quota job. And then…….what, you think I am going to do a great job quietly so that they decide to hire more people in wheelchairs? Get real, I live Victoria which has the mental equivalent of deep south some time ago, except that they don’t even consider us wheelie enough of a human or a threat to rob or lynch us.
Example: I went to Triumph and asked in a public meeting the Managerial Head if the official policy of an agency to assist people with disabilities was for people in Wheelchair to BURN TO DEATH during a fire (as the fire exit we were REQUIRED to use was not wheelchair accessible), and she hemmed a bit before saying, yes and could you please sign here verifying you have heard and will comply with the fire training you have received. Seriously. No shit! So you think that if people actually saw me as human, actually thought I was like them that I wouldn’t be pulled out of my chair by any yahoo wanting fast cash? Bet ya!
Hey, I feel more secure against rape and attack NOW because after asking a survey of hetero males, I found out that other than devos, girls in wheelchairs are considered by men in the “undressing all women” way of looking for a girlfriend or sex toy that they are “too fucking complicated…just move on.” See, a woman who can walk but might have emotional problems which includes chasing a guy with a knife is still okay if she wears high heels and has a nice ass. But ‘dem wheelchair gals, I mean, are they even okay down there? Will they moan at the right time? Just too complicated to think about……
Okay, I guess my rant is over for the day (not likely!). I am glad to be out of this fight because while I have the patience for my own pain, my own health problems, I don’t have the time or patience for the bigotry which makes “dyke haters” actually seem enlightened (they can at least identify and articulate their hatred and bigotry!). I do recommend for all those in wheelchair in Victoria to do as I am going to do, for when the bus drivers will pull up, take on all walking passengers and then tell you there is “no space.” I am going to be carrying a chain and padlock. So I don’t go, nobody goes. Or you can drag me out of the chair and beside the bus, and since I know transit drivers have to fill out forms if their mirrors get dented I am thinking that won’t be their choice, but if it is, so be it.
Do you want to know what even a country that has had a disability act for 25 years thinks of people with disabilities? There is Natalie du Toit, a South African female swimmer who also happens to have an amputation, but says that she expects no quarter nor gives one. She finished sixteenth in the 6.2 mile open swim at the Olympics. From Wheelie Catholic: Natalie, who told reporters she gets frustrated when people "look at her stump or prosthetic leg before they look at her face"
Now we have the online coverage by NBC, a major network, they have 10 pictures of her. How many until they actually show her HEAD much less her face? It takes FOUR pictures. Yes, stump she is and stump is all she will be. There are 10 pictures of her……but only ONE of her actually doing her sport.
I have to ask, is there any other competitor in the Olympics were we get endless shots of their ankle, or pecs before we are graced with a picture of a head and them doing their sport before going back to pictures of their ankle? I am just saying that I am pretty sure the 10 pictures of Michael Phelp’s swimming a race included more than 10 % of him swimming and 80% of them focused on a piece of anatomy, let’s say his ASS, his tight ass in a swimsuit. What would people say if picture after picture scrolled by of his ASS while commentary of Michel Phelp’s swim was being made, eventually one picture of him swimming, then back to ass shots.
I would think the general population would think the large network NBC was smoking the waccy tabaccy, or LOVED his ass, or were a little off, or bigots.
So that is what 25 years of a disability act gets you, 1 picture of the event, and eventually showing the person has a HEAD and a face. Here is the quote of an American swimmer she beat (from the article), "I was swimming next to her and she beat me -- and she has one leg," Sutton said. "It's incredible she was able to do that." Golly, when you get beaten by a competitor it is talk about training, when beaten by a GIMP, she is just "incredible."
"I'd even go so far as to award her a separate medal," the winner said through a translator. "I have enormous respect for her. It is exceedingly hard. Just looking at these people inspires you."
I assume by “these people” she must mean left handers, I mean, it isn’t often that Olympians see left handers. Or was it because she was white she should get a separate medal?
Du Toit did receive a special gift from officials at the rowing basin: a traditional Chinese drawing encased in a wooden box.
And see, this is why I shouldn’t be a spokeswoman because I don’t take that type of shit, as much as I might play the crip card, or milk the whole “poor crip” for my own evil ends, I don’t takem not a "special award", being called, ‘these people’ (just a note to able bodied people reading this, we are actually just known as People, females or “better off barefoot and pregnant!”, whatever works!). I would have stuffed the painting down my prosthetic and limped off on it thanking the officials. Yup, we’ve come so far. Oops, that’s you, here in Canada, we are still a few decades of education away until we work UP to our official Olympic coverage using the phrase, “these people.” And no one giving a damn.
Monday, August 25, 2008
I will try to cover memory loss another day because apparently seizures can cause your brain to “dump” your short term memory before it becomes long term (meaning you lose an hour or a day before the seizure). But like a recently wounded animal the brain can, to quote the doctor, “not lay down memory tracks” for up to a day AFTER the seizure. From what I understand it means: after a seizure I continue to talk, I access words and info but the events aren't being laid down as memory unless there is some extra (like emotional connection), so I remember a tech at the hospital saying to Linda, “You must be her mother.” But why was that tech there?
Let us just say I am getting VERY tired of people saying to me, people I care and trust, that “Well you told me to not talk about……” and I respond, “I did NOT, when did I say this?” And it turns out to be right before a seizure. Annoying.
When I had the stoke and since I have problems telling time in the larger setting and sequencing, as well as I have lost a lot of my emotional connection to time. The problem is that I can only describe to you what I know, and what people say (because I have picked up what people say so I often “fake” when talking the 'emotional connection' to time so people don’t know that I have no idea what the meaning of what I am saying actually is). People have emotional connection to time, to days, to months, to years, to the passing of time (an example: people say, "Wow, this year has really flown by!" - that is an emotional statement, the earth revolves around the sun at a steady pace, so I don't know what they are saying). They have picked this up over life. I don’t seem to have that anymore.
Most times I don’t know what day it is, and if I do ask, I will often forget within a short time. So even if I know (because there is a schedule next to my computer) that Thursday is shower day, I will wait for the shower person to come and help me. I will call Linda. She will say it is Wednesday, or Friday. When she gets home I will complain the shower person never came and she should call home care. She will remind me that it isn’t Wednesday. This sounds like I have dementia. But I don’t think I do, I just have no idea what day it is, or what day comes next the way other people do. And the part of the brain that makes that important to us as people is damaged in me and doesn’t seem to work.
So, people will say, “Oh, I hate Mondays.” I have learned because this is because they take time off before Monday and bad things happen on Monday. So if there are a lot of phone calls harassing me, organizations to deal with, I will believe it is Monday. When Linda gets home I say, "I hate Monday's." Linda will correct me and tell me what day it is.
Now, we have feelings about months, we have a history of memories associated with months, with years. I don’t. I have NOW. I have “soon” which seems to be at most five days.
If I don’t see you or talk about you within that time period, I may not recognize you or be puzzled when Linda says, “we are going to see….” I don’t know what month it is, I don’t know what month comes next. Yes, I can look it up on my computer, but then, after that is closed, I forget. It is meaningless to me. April, June…um…November and February – there you go, some words. Which mean nothing to me. You can say, “This is the one year anniversary.” And that means nothing. I know NOW and I know “soon” and maybe a day or two past. And I know that a "one year anniversary" is more than "soon" but that's about all. So I just stare. What they have said is meaningless.
I know that people say, “A year ago you did….” – so when I write I use those terms too. I say, “Two years ago I was an athlete….” But if you stopped me from talking and asked, “What does a year feel like, how long a time is it? How many times did you do training? Do you remember the training? When was the last time you went for a run? What month did you like training best in? When did you used to run 10K’s? How long ago was it you did a 10K in a wheelchair?” I don’t know the answers. I don’t know if it was last week or longer. I know it was “past”. I would need to read my blog to try and find the answers.
Okay, now when it comes to people it seems that for most OTHER people (like not me) have a progression of time, an image of the person over time. I don’t; I have memories, but they have no sequence. If I CAN remember someone, which after my stroke I couldn’t remember a lot of people. If I do remember then ALL the memories I have are like in a folder, and they are all in the same folder. So I will say, “You like oranges.” Because I have an image of this person saying they like oranges. However, that image or memory may be from a long time ago, like years (see, I know after enough mistakes that year means ‘longer than you should be remember what people say’) and they are just puzzled. The problem is that I had a photographic memory, and while much of that is broken up, some of it is in these files, so if I see you, I might talk normally and then you say a word and I start repeating a conversation from the ‘file folder’ which is you, and I, only I am speaking both parts, what I said, what you said, what everyone said. And that could be from last week and that could be from five years ago (I know this from what people say), it could be from 15 years ago (as has happened) and to me it is all the same as it is in the same file as what you said two hours ago before lunch. So when I say, "You PROMISED I could go to the pool." as I did to one person, they were confused, it turned out they said that two years ago and had no idea what I was saying. I was confused because....they had promised I could go to the pool. Problem, eh?
Now, there are some images that have no file, so someone will say something or I will say something and I will start to describe to Linda what I am seeing or smelling and she will say, “That was in Venice” (when was Venice? I don’t know, I know it isn’t “soon” or “Now”). But I will put it in the file for Venice. Now some people exist from across the brain go boom episodes, like Cheryl. Do I know how long I have known Cheryl? No. Do I know when I will see Cheryl again? Yes, “soon” or maybe two “soon’s” But if it is more than one or two “soon” then I don’t know if I will recognize her. Only when she is here, when I can see her face and feel her or smell her will I know her. Until I see her and she matches the file, until I touch her or hear or smell her, I don't know if she is in "what I know." I also know that statement seems to make no sense, but it is what my life is.
Every Sunday I cry because Linda is leaving me. She says that she is going to work and says she will spend all day with me next week. I don’t know what that means because it is longer emotionally than I can understand. So I know that she is leaving. And I cry. Right now we are trying to find something for Monday morning that I can look forward to doing so when I get sad Linda can remind me that tomorrow I get to do X.
But if, for example you say, “I am going away and I will be back in two weeks.” What I emotionally understand is, “I am going away.” (the rest simply doesn’t make sense). Indeed, most of the people I interact with have to answer my question “Is that ‘soon?’” regularly. Linda tried to explain what November was to me today: “It is like eight or so Cheryl visits.”
I asked, “Is that long?” (this is where I wish I could not be me and explain it to you – a Cheryl visit happens when it happens, how do I count eight Cheryl visits? Have I had eight Cheryl visits so far? I have many memories of Cheryl but I do not know how they are placed on a line)
Okay, here is where it gets to be a problem. If you tell me that my ambulance bill will take up the money this week, that goes in the file, if you tell me at a different time that we can’t afford X because of the walker, that goes in the same file, if I remember that we are having money problems because of the costs of going to Vancouver for a test, that is in the same file and it is ALL “Now.” So if Linda says, something like, “We will have to wait two weeks because the bill for the oxygen came.” What I EMOTIONALLY hear is “We are poor, we are going to be poor forever because of you.” And not only that, the file where all the “Beth is expensive” quotes are kept stored opens up and pours out, and I become very, very depressed and want to self harm because all I can see is all the financial problems I cause. Linda can say, “I said that X time/weeks/months ago, that isn’t a problem anymore.” But I am so overwhelmed with all these quotes and the thing she just said is JUST LIKE them that they all emotionally bundle together to make me FEEL so things that are sometimes little go emotionally into huge things, and I curl up and rock. See, because it is ALWAYS “Now” – which means if I have said something to hurt someone and I realize that, the file where I realize I have hurt someone opens, and it opens “NOW” it is part of “NOW.” It is always “Now.” And I can't stand being the horrid person I am.
So yeah, I know that I did 32 postcards this last weekend. Do I know how many postcards I did in the weekend before, or before that, or ANY weekend, or even when I started sending postcards? No. I can read the numbers if I wrote them down, and then I will know. If I didn’t, I won’t.
So the reason I don’t have power of attorney and medical power of attorney is for real reasons. In many ways I have not capability to process information over time. I have memory, I have memories of my childhood and my youth and as an adult (but if you stopped me and then asked, “What year is it NOW?” You could get any answer – in fact, I’m still ‘emotionally’ convinced it is 2003 even though Cheryl and Linda have convinced me to tell people it is 2008 – haha, that sounds so science fiction, yup it is 2016 – those two years sound the same to me emotionally).
So Linda says, “You need to spend not much this week.” And every day, I repeat that, so I know in the next “soon” that it is important. And then she will say, “We are okay, you can spend a little” and then I repeat that. If it is important I repeat it or talk about it a lot, so I have those memories in my “soon” until someone tells me that I don’t need to repeat it anymore.
Well, that is a start of trying to explain my world to you, I hope it makes sense or you can at least imagine it. Yes, I hear phrases and I mimic them, and if I talk, I sound almost normal. But then, my video store knows that when, like today I said “Is Supernatural Season three ‘soon’?” They say, “It is next week.” And I say, “So I come tomorrow?” And they go, “No, longer than that, next week, longer than now, longer than soon.” And I go “okay.” Or if someone talks and says something I will say, “What does that mean?” And then when they explain that I say, “What does THAT mean?” And I attach to the part I can emotionally understand. Which might be, as it is on Sunday, “I am leaving early tomorrow morning” and I start crying.
I am not stupid. It is just that there are these parts, these things which don’t work right anymore. And instead of hiding them, as I usually do and try to do to people, I am showing them to you. I am showing you what only those who work around me, my care givers and people around me a lot know. Because I believe that maybe it will help someone understand a person they know. Or be of some use. Not because I want people to make fun of me.
Sometimes things that people which have said which are hurtful are in the “Now”, and when someone says something hurtful, that emotion connects to the other emotions (and that file) and it is ALL in the NOW. So I can react in what some people would see as an over-reaction except that while I KNOW it is one comment, ALL I can feel are ALL those comments. See the problem. How would you react if everything hurtful anyone said to you over a big time hit you every time you got a hurtful comment? It would hurt, a lot, I think. And it does. So I cry, so I curl up, so I feel like I am being attacked. Even when it is sometimes just one statement.
But the same can be true for the other side. I smell something, or I feel the sun on me and see a squirrel and I can feel good, very good, because all the feelings, even from events I can’t remember are lifting me along. I wish that sort of thing happened more often, but it does happen.
A window to my intimate world, I hope it means something.
Sunday, August 24, 2008
So every year we have been in Victoria, except last year during the “medical testing marathon” we have picked blackberries. Before I moved to the UK, I would give half of what I picked to my grandfather and grandmother, who couldn’t get out anymore, so that summer would come to them: because what is summer without blackberries?
I said something to Linda during our recent Hell Week, one late night, likely between seizures when I was wearing the eye patch and had eye lock, stuck staring on a piece of ceiling stucco. I said or slurred that we should go blackberry picking. I guess this what I meant about living and choices. I can’t stop feeling crap, can’t stop the fact that I used to walk, used to feel my legs: not years or months ago, but weeks ago. Can’t stop that, can, maybe, with the support of a medical team and a transport team, can go blackberry picking, can have that bit of summer.
So after we got up, around noon from our hell night (many seizures, brain damage, stopped breathing), and I got the limbs moving, the pain killers maxed and the clothes on. With the ambi-bag, oxygen and some containers packed we headed out. It was partially sunny and there was a patch by Linda’s workplace she had scouted. Some of the patches were only available to able bodied people who could clamber but some where an obsessed person in a wheelchair could force their way into the thick barbed vines of the blackberry bushes. We weren’t the only one with this thought as the bushes were full of birds, enjoying the ripe blackberries too high to be picked.
The secret to blackberry picking is that if you HAVE to pull, it is going to be sour, a ripe blackberry will fall with a slight tug, however an overripe blackberry will let your fingers squish in and stain them. The purple hand is the sign of the blackberry picker. Linda got a head start and already had a full container when I caught up with her. She pointed out that I had brought the PERFECT goth shirt, my “Berry Fairy” t-shirt. I was the also the ‘lucky spotter’ as being eye level to a dog, I mean having a low eye level meant I could see under the broad leaves to the clumps of ripe berries behind. So as we moved along I often played spotter while Linda and Cheryl picked.
However, I picked too, since I was able to push myself amongst the thistles and the blackberry vines to start to fill my own container. So yes, I guess “Wheelchair blackberry picking” is another sport/activity to add to my list. For me it meant that for a hour or so, I felt like it was a year ago, when all that mattered was the wheelchair, and my will of what I wanted to do. For me it was summer, a “normal” summer. For those who have had the idea of “normal”, 'routine' or 'tradition' taken away by disability and/or disease, you can know what it means to do something as if the disease has gone away, to do a bit of routine that had been taken away and be free, thinking nothing of it. The greatest blessing I get are the minutes or hours when I forget; forget that I need to regulate my blood pressure, my oxygen, my energy, my medication, the time until sleep, the temperature, and the rest I need to stay alive. Instead, I had a whole hour when I could just BE.
Here we have the other part of the team, our summer berry pickers, showing three of the five containers we picked and the badges of honor: the purple hand! And the OTHER badge of a berry picker on Cheryl, the purple stain near the mouth! On the way back to the car we saw a bush just full of birds, here is a red breasted (er….bird?), along with another bird in the lower right corner. I have a theory the birds come to eat the overripe berries to get drunk from the fermentation. That why they keep sitting there looking spaced out. Blackberries bring out everyone.....except the bears, thankfully, at least not today.
Of course, I did pass out soon after we finished our picking, and had to be pushed back to the van and wear the eye patch.
I do wear my eye patch now on a nearly daily basis so if you have some cool eye patch or know where one can be found I would like to know. Since by afternoon or evening in my left eye the entire world turns blue or there is just garbage coming in (sparkly!) or the eyes don't coordinate and there are two worlds and trying to do anything makes me look drunk as I tell Linda, “Stop that……BOTH of you!” So my time of forgetting my condition, of just being in a wheelchair was over but I had done it, summer had come and blackberries had been picked. That night I enjoyed a blackberry thick milkshake.
I also worked some on the postcard project and here are a small fraction of the ones I finished.
I hope they are speeded on their journey, and arrive when a smile is needed most.
The evening turned into something else, something I'll talk about later (and today was the recovery). This post, like that hour, is about the time I had when my only limitation was where my wheelchair could go.
Screw Bronze isn’t going to be a fantasy disability blog, but there is so much ugliness in my life, so many hours of the raw and the painful. And that kind of brutality is only going to continue and increase, so today I choose to focus on two different hours, my “fruits of summer.” The hours which include the berry picking, getting my chair in there and getting a few scratches and embedded thorns as well as the postcards; my other garden, a little less wild, but still work in finding and picking the perfect one.
I hope that whatever your condition, your stress, emotional or physical, that you were able to have that hour of “forgetting” of just being. I know it doesn’t come often, but when it does, it sure is nice, to just have the smell of blackberries, the sound of happy birds, the fingers stained purple, the insults to Linda and Cheryl that there seems to be “more eating going on than picking!”
I hope you had your own "hour" this weekend.
Saturday, August 23, 2008
I also stopped breathing for an extended period of time. Extended being about 25 minutes off and on (though thankfully we have an ambi-bag which breathes for me).
However, so many seizures and the results of them (no breathing for example) mean certain brain damage. But lets just say that 80% of EFM or a percent or two less of EFM is still plenty to go around (That is the opinion of Brain Damaged EFM, which we will now refer to as "EFM Lite!" - see, still can do the sick jokes).
However, I and others have already noted speech and other cognative difficulties. Let’s hope they go away (brain damage is like the flu right?). I also, in a great deal of pain and frustration, helpless in a body that left me staring at a patch of ceiling for a great deal of time, let that frustration get the best of me and while briefly ALMOST functional (like I had four fingers working, two on each hand) was stopped by Linda and Cheryl from overdosing on pills. At that time, tired, hurt, and after several series of seizures, I wanted out, I wanted to die while I was still me.
I might point out that while the sentiment is understandable when one continues to experience wave after wave of physical slamming and chipping away at my brain, the entire 10 seconds of deep consideration to terminate, I now consider a bit rash. Linda suggested I go to bed (Translation: Linda put me in bed and then drugged me into a sleep), and think things over.
Right now, I still have minor seizures almost hourly and high levels of heart pain due to the erratics and the general weakness of my system.
I do however want to say Happy Birthday to Dawn and to say that I still got that last bit of your present and now your birthday present has been prepared and is awaiting the postal officer! Ha, I can be suicidal, in seizures, have crap health AND get stuff done - talk about multi-tasking (take that Martha Stewart!)
I am going to rest now, I have answered the comments and will continue to do so. Even during the bouts, or rather between the seizure bouts if and when I a) know where I am, b) know what year it is, c) Remember what my blog is and d) Have enough strength in my hands to type, or hand to type, or finger to type, I will sent emails and answer comments. I have always been a doer and that is how I want to continue. Linda was right to stop me (from killing myself). I wanted to “fix” my problem and choose an easy solution. I was overly emotion and exhausted at the time. Now I am just extremely emotional and exhausted. Seriously, I broke down in tears today because I had to fold up the $400+ special walker that we waited months to get, and now, is folded and put away after a few months of morning use. Linda has said, “We can recoup that when we sell it to your parents.”
I said, “If you expect me to live SO long as to the day my parents admit their need for assistive devices, you REALLY are an optimist (my father talks about having to come down the stairs holding the rail one at a time, and due to his nerve spasms, spending the first hour or two walking into things like WALLS, and COLUMNS and TABLES and yet doesn’t see any need for a walker, nor understand why I think a split level apartment might not be a good long term choice).”
I will do what I can, when I can, and I guess the rest is out of my control. I am going to TRY and take it easy, in the “take it easy and not have a seizure series every four hours” plan. Don’t worry, the whole “going to go off and do badminton or the Terry Fox run" plan is still on. Just, not getting upset, not talking to Beacon or the likes of them. Taking it easy, trying to get strong enough that a few heart erratics don’t keep making me pass out…..I think it is good to have goals!
Thursday, August 21, 2008
But progression aside I still can make choices of how I spend my energy, or what I do, within limits. There are those who can’t.
Collette, who comments here, is spending Sept. 6-7th walking 60K for breast cancer. I don't think she has ever walked 30km in one go. She made a choice.
Breast Cancer is not only the highest risk cancer in women, but 1% of those who get it are men. Yet for men, detection before it has moved to the bone is less frequent. So for those who have breast cancer history in their families, it is not just daughters but sons at risk too. In fact, one of the reasons fatality in men with breast cancer exists is because they are unaware that it can occur.
I know of women who have had breast cancer, because like any woman over the late 20’s I can’t imagine not knowing someone. Which is why Collette and the Weekend Warriors are spending two days walking 60 km. A fundraising choice, and a commitment toward a world where one day we don’t know of a friend or relative who, each week, spent the day before chemo crying. Who vomited, who had insomnia, who had their hair fall out, who had the visual aspects of their body and their identity reshaped for their survival. And those are considered the “lucky” ones.
There isn’t a 60K walk/wheel in my city or I would have joined up (hey, another couple first aid tent to rate!). But I will be doing the Breast Cancer Run in my City in early Oct.
You may be wondering what this has to do with my reasons to live? It is because every day and every choice I make, there are people in hospitals and hospices who do not have those choices. Last night, for the first time, I had to be fed, so yeah Raccoon, I know what that is like, and I’m guessing it doesn’t get any more exciting or dignified. I did insist that I did not actually need to be fed, as I could drop my face in the plate and eat that way. “Like a dog?!” the night worker said in shock, “But that does not give you dignity!”
“Lady,” I said, “After you’ve sucked as many pain pills off the floor as I have, you’ll have no illusions about dignity.”
After the series of seizures, or during, I don’t know exactly, I was able to use the built up fork to stab the food but couldn’t turn my hand or arm. And when I held the fork the other way, I WAS able to bring it to my face: like my forehead, my cheek, my nose, my hair, just not my MOUTH…..let's say the hand and eye coordination didn’t work. But in that, having something taken away, I realized that I still have many choices left, mostly thanks to the care workers who actually DO care about me and people like Linda and Cheryl. During the last few weeks I have woken up in the afternoon paralyzed. But thanks to a new listening system, Linda is able to move, transfer and transport me from my nap area into the study where I can work and communicate.
I live because I can live. I do because I can. And I try when I can’t.
In a few short weeks Collette will start her 60 km walk, and I believe that she will make it. I think it would be nice to drop in to her webpage here and give her a message of support (click on ‘friend’ and donate $10 or more, which is $9 American and 5 pounds UK, all of which is tax deductible – and you can leave your message). There is a list here of where the money goes, though I personally will say that I was hoping for a LOT more money focused toward some sort of new mammogram technique which isn’t so darn painful.
But if she does not finish all 60K this year, that is not what is important, because after all, here in Canada, one of greatest athletes is the one who didn’t finish the race, Terry Fox. It is the dream, the choice, the attempt which matters.
As for me, the following week, I will be participating in the Terry Fox Run, a race which has no winners, no medals, not even an entry fee, just people getting together, raising funds for a world where there are more choices and less cancer. The Terry Fox run is unique not just because he wished to eliminate the competitive nature but because people of bicycles, on roller blades and wheelchairs are welcome. Depending on the city, dogs and even horses (or people on horses) are welcome to participate as well. For those in Victoria with dogs, the run in Central Sannich welcomes dogs, roller bladers, cyclists and wheelchairs. I will be going to Mile Zero which has a 5K and 10K. Geee, I wonder which distance I will pick? It has never been about the medals. It has been about the choices.
There are days when the beast which are these diseases and this pain is all over me, there are days when the beast which is the cruel crushing medical system will roll over me. But there will be moments, and minutes, and hours and days when I make choices, when I decide what to do. When I live because I can. I talked to Linda today about how I feel ever more so disconnected to the rest of humanity, that what I feel and experience is so far away from what they imagine, what I of a year ago could imagine. We talked about how it would be if things could be different, and what life would be like if her credit card was all paid up. I immediately said, “Well, if that happened, then I would spent it all on anime and other items that I would promptly give away!” And she laughed and said that is EXACTLY why she is getting a limit like $100 put on the card. I made her laugh. It was just a moment but I made her laugh.
Yes, one day I will have to live in a bubble of sorts, and probably be fed more and more meals. And I wish that one of those choices would allow me to wheel with Collete and Team Weekend Warriors in Toronto. I think doing 60km would be VERY tiring on the arms. But maybe, with friends I wouldn’t notice the pain until LATER.
I live because I can. I live because my grandfather can not. I live because dying is easy, because giving up is easy. I live because spending 7 hours to prepare and then recover from feeding squirrels for 45 minutes is still feeding squirrels. I live because choices can be made. I live because people want to take those choices from me. While I can, I live.
Terry Fox, in the interview in which he ended his run, and then while undergoing treatment set up the Terry Fox Run, said, “I just wish people would realize that anything is possible if you try. Dreams are made if people try.”
So here is the question that has been haunting me recently, a question I thought I left behind once finding Linda: Am I human?
Surely I can’t be the only person who looks at the elaborate preparations for a simple thing like a trip a mile away and the enormous cost afterward. Look at that and then being surrounded by a world in which the greatest worry seems to be what fashion faux pas was committed by which celeb and the newest trend and wonder. Why am I so different? Why am I so separated from them? Am I even human?
Growing up I knew I wasn’t fully human. There was some complex formula which required the human spirit (Which seemed to exist more in men for reasons still too confused for this non-human), the divine spirit and the holy spirit and of course only “True Believers” go the last one. The rest were subhumans. And only adults got the last one, so as a teen, you were a proto-human, but not yet fulfilled to potential.
For the last few weeks, I have been fighting every day with various agencies: Beacon, VIHA, my GP, my landlord, Blue Cross and while many of them have demands I must do for them, none of has to do with me. It has to do with them, their liability, their caseload, their risk level, their desire for their own way, their desire to save money. That I have at least three or four agencies which pester me mercilessly including two directly involved with my care-giving and yet no one person there yet cares about what happens to ME. In VIHA, I had Edriss, who refused to do a home assessment under any reason; she was removed weeks ago by the nursing supervisor. We explained that because of my condition we needed a nurse who could respond and direct care due to those changes and so I got…..no nurse, and no nurse visit. I have a case manager who passes along the many instructions of what Beacon wants me to do THIS week, or complaints, like that a worker reported they had to wash dishes (actually a duty they are tasked for!).
Karen at Beacon has said she does not WANT a GP to list my medical conditions. Yet, due to my “change” or other language for deterioration, she wants all new policies put into place, one each week. Yet policies not determined or even seen by my GP (because Beacon can’t do email, or regular mail), as a care plan. Plus, after returning from the hospital in a mentally confused state Karen called and after being told that I was confused, mentally damaged and that Linda was my contact and held medical power of attorney, Karen, head of Victoria area of Beacon did not hang up to call Linda but remained on the line. And in a voice one uses to talk down to children (which is what made me suspicious of her and write everything down) she told me she was my friend and that she was coming on Thursday as Linda had already agreed, along with many other statements. I called Linda and asked if Karen had called her? No. I asked if she agreed to a Thursday meeting to put Karen’s NEW care plan in my care sheet? No. What do you call someone who knowing tries to bully and trick someone who is mentally confused? Who has been told repeatedly that LINDA is the person with medical power of attorney? Yet they call, these groups, every day. For liability reasons.
I told one manager today that I had put up the Epilepsy Poster from the Canadian Epilepsy Alliance for NON-medical personnel (as per a previous agreement). I told them it listed how to treat a person in a seizure. They wanted to know if it was in complete compliance with what Beacon wanted. I said, I didn’t know but it was according to the Canadian medical standards of treatment of Epilepsy, which I thought was more important than what Beacon might or might not want. Apparently not. They stopped just short of asking me to TAKE IT DOWN…..until it was reviewed. When the Epilepsy Society found out that caregivers were allowed refuse to go back to be simply because I had epilepsy they said they were contacting Beacon for “training issues.” My case manager couldn’t understand, as “the workers have a RIGHT to refuse to treat you.” I said, “And if they came back and said that they didn’t want to come back because I was black?” She said that was different because that was DISCRIMINATION. I asked if one of her co-workers had a seizure and another co-worker went to the boss and asked the person to be moved because she felt ‘uncomfortable’ being around epileptics would that happen. The manager responded, “Of course not.” I said, “According to Triumph, this is MY workplace, and according to Beacon who is allowing people to not return because I am epileptic, this is THEIR workspace, for which I am liable.”
By the end of the day I realized that I had 8 specialists, my GP, different agencies all wanting things from me except one thing: For me to have a better quality of life. Did Beacon care about my degenerating condition because they were going to volunteer extra care? No, because they want to put in a care plan that has not been vetted by either a Health Authority Nurse or my family physician. They called today to initiate a task two, saying that none of my workers could touch my medications. Except that only the doctor of a patient can initiate a task two? And they don’t want any doctors involved.
To cut all this short, I sat in the bathroom with a knife, and realized that whatever my presentation, I was “other”, I was “thing”, I was “it”, I was the client, the patient, the thing no one wanted to deal with. Linda’s work has been pressuring her again. She is not to be with me. I am a drag to her. I am quite clearly not an interest to VIHA, as I have no nurse, no dietician (though requested), and they are quick to comply with requests of an agency operating illegally (unless they have done those spot inspections they are required to do to be paid – which they haven’t for a year). Managed by a woman who bullies patients after six consecutive seizures, who lies to confused people, and refuses not only to put anything in writing but to give her last name. She wants me to get a DNR, wants me to get a doctors instruction of care, wants me to allow her to put in a care plan in MY house which I am not allowed to see, and yet, I don’t know her last name.
So I started cutting. Turns out that I was correct, the right arm has no pain sensation, it does has some pressure sensation left. I was, even though the forearm was in Reynaud’s to dig down to the blood, seven bleeders. And three on my left forearm, though not as deep, it has diminished sensation but it is still there. It was the most ‘normal’ thing my body did in the last few days; bleed from cuts (it won’t do that on my hands). It was me, and it was not my internal voices, it was all my external voices too; all these groups with “Health” or “Care” in their names who really don’t know or care about my condition.
Am I the only one who feels this way, that I have tried to be good, I have tried to do all they asked, I have tried to comply with all they want. Only now, I am tired, I am exhausted and they continue to harass me, not for my health, not to set up a safety net for ME; but to prepare and set up legal and liability safety nets for THEM, for when I die. I feel alone. I feel that there is nothing that could happen to me, and nothing I could do to myself, which would cause these very important and very busy people to give a damn. And I don’t know why that is. But even Linda can’t find amongst them, anyone other than her who cares. Or cares beyond making sure that when I choke to death due to a seizure, I am the one legally liable.
I do not know why I will not be cutting tomorrow. At least then I am on the winning side; I am back doing what I used to do when I was able bodied, and I am on the side of people who don’t give a fuck about Elizabeth McClung. Which in Victoria medical establishment is a VERY high number, even when most of them seem to draw at least part of their salary due to my existence. But as Adam Smith predicted, I am a surplus commodity, they can get many less time intensive gimps in the same area and meeting the same minimum requirements than deal with me. I am the White Elephant, I am the thing, the it. I say that because I still believe that if people really identified me as a person equal to them, they would not sit by or be distracted so easily. Only a non-human is that easy to cast aside.
I write upon my body what has already been written upon me.
Tuesday, August 19, 2008
And yes, it involves shopping (I have an addiction, I am a shopaholic; I don’t even need to see to feel the shopping lust, just know it exists makes me want to own it!). Which is why when I found out about the Hello Kitty Pour Lolita Line, which was made by my favorite author of Kamikaze Girls (about a Goth Lolita and a Street Biker girl who sort of fight their way into love – that Goth Loli can swing a mean bat!). However his use of Waccy Tobaccy closed his line two years ago, and after only a few months of production. There was the “Sweet Loli” line in pink (not me!), the Punk loli line, which I scored some washcloths from and sent them all out as gifts (hey they were super cool!). But for me, the Goth loli was the lodestone, and I finally found a brand new, tags still attached, clutch purse from the Pour Lolita line (admittedly had to communicate with a country literally on the other side of the world and then wait a month or two). Sigh, look at it, isn’t it the grandest.
When I received it I opened it and sniffed then said with a smile, “ahh, the new purse smell!” This is when I started getting some ribbing and outright mockery from the Butch portion of the audience (Cheryl), it is amazing how sarcastic she can make the phrase “new purse smell” to sound. Hey, you femmes and shoppers know what I am talking about! The odor of new and fresh and all mine, and in this case, probably unique to this coast, this province, who knows? Admittedly, after a day or two I started kissing Linda more, but that deep love is still there.
And to continue the Goth theme, while doing a bit of clean out to help the tech guy to come and get me up and running on Dragonspeak 9 (The new computer is set up just to run Dragon speak, and I talk and it responds immediately, I started with numbers in the 20’s – which is great, I am starting to love Dragon instead of the one on my old computer who used just to crash it) I found a picture. Here is the picture someone (who will remain nameless) drew of me visiting the graveyard. I really like it. Only it makes me both miss my black wings, oh those were the days, but also reminds that I need to wear corsets frequently, particularly as I can use the cinching aspect now!
I am working right now on another three postcards I will be sending out tomorrow, I thought you might like a look at some of the Postcards that are heading out across the world. Here are some of the covers and you have to admit, they are pretty (they look pretty to me!). I mean if I am not envious of the almost every card I send out then I don’t think I am doing my job correctly. Who honestly wouldn’t love to get a card of a nice girl in that outfit with a big reaper scythe?
As to this group, there is a bit of a theme with having a cuppa; you know, tea time! We have the wicca tea party as well as the card of tea between friends. But what really intrigues me is that woman with all her knives because she seems to need a LOT and also seems to know what to do with them (Two groups of postcards and I am drawn to the women with knives what does that say? Does it say, "You have good taste?" or "You like the wild side?"). Anyway, that postcard makes we want to see her in casual clothes and then we can retire inside and play the “how many of your knives can I find?” game. What, come on, I know you couples out there have played this! Admittedly for the tamer couples there is, “How many tattoos can you find?”
Here is a picture of the decoration, as you can see, SharonMV’s art still goes out, but I won’t say to where. Also some goth fun. I admit it, I really enjoy doing these cards and while it may take weeks to find to the stickers, weeks of waiting to get them, I can wait to start using them.
After all isn’t that fun, trying to reflect a bit of my personality, a bit of their personality (my personality is twisted so that part is easy, theirs is harder!) and make a bit of unique decoration. I do like the goth Hello Kitty in Profile at the lower left and the one of the a kind, only order from Japan Hello Kitty in a Sundae, oh the trouble that Kitty gets into, honestly you would things sometimes she does it deliberately. But of course we know that is completely NOT Cat-like behavior at all. I can’t tell why but the Hello Kitty angels are calling to me, maybe it is just the girl with wings things. I just can’t say no to a girl with wings; just ask my first two dates. Oh, she may have left my heart crushed but we sure did fly!
I had two big meetings today, got picked up by a guy (including a number – woo hoo….oh wait, that wasn’t a girl. Darn it!). So I am a bit knackered. Up at dawn for the prep for another medical and I’ve had two seizures, so sort of a full day. I tell you, this being disabled thing doesn’t seem to get any easier. So come on, some one give me the booklet which outlines when we get our vacations and our bonuses and rights. Like, I have been doing this for over a year and I haven’t even gotten one coffee break from my disability yet, much less a lunch break. I know being disabled can be a full time job, but….where are MY rights?
If you bought anything you fell in love with, or just want to tell me how exceedingly cool that purse is, please don’t feel the need to hold back AT ALL. Oh, and if you don’t know about the postcards then it goes like this: send me an email with the title postcard at my email at mpshiel at hotmail.com and you will get one and then MORE of these exceedingly cool cards. In fact, remember that card we did the “which schoolgirl were you?” remembrance on. Whoever got it, I would hold on to it as it turns out that it is a rare collectable postcard from a very famous artist and very few postards were made and it is worth about $15 minimum. I found that out today by accident (when I tried to get another card by the same artist). See, I just find them, and then send them on; you want to sell them for money toward meds, or a new Wii game, help yourself. Still, bit of a shock, might have held on to it – except that girl in the middle, oh, she was just ASKING for a poke in the nose (because I know she was responsible for half the stuff I got blamed for). So probably best out of my hands.
Remember, share the feelings, share the shopping joy, particularly your own. And it IS true, there is a “new purse” smell.