What am I doing?Why finding shapes in the clouds of course! No, I am trying to figure out how to become a better partner, a better person, and a more honest blogger. Linda told me to blog with honesty, not for comments, or readers but for myself. Yes, the comments matter, but she feels that my need to write matters too. So this is what I decided yesterday and today in contemplation: I am going to try to React emotionally less, and try to act instead. That plan worked for a WHOLE 90 minutes. Part of the problem is the disease, part of the degeneration of the mind means that effectively I have the emotional aspect, much of the time of a 8 to 12 year old, but the vocabulary of someone quite older. Plus, as my mind continues to erase parts of my life, the most emotionally vivid are left: my dreams, my struggles, but also my horrors. And so, I have inadvertently offended people because I reacted out of proportion of the situation, for an adult. But I am still going to keep trying.
So I try to not REACT, though when I got the ‘nasty’ EEG tech on Wednesday, I couldn’t help do a little debate to wind her up, which she got revenge on by having ‘the last word’ while telling me I had to stay still or ruin the test. Then when removing the 12 electrodes stuck in my hair and scalp, the hair that is thinning even more, she ‘saved time’ by simply grabbing the cord they all connected to and YANKED, ripping all the electrodes (and bits, and chunks of hair) off of my head with force. She also came over when I could not move, and kept raising my arm and dropping it to see the dead weight. We COULD have used that data to compare how I am sending OUT the signal to move but nothing is happening IF she had made a note, but she was sort of annoyed at me because I wasn’t moving and came over and played with different body parts. Professional? Um, I thought morticians had more respect for the body.
I have a favor and something of interest to ask you to take a bit of time to look at. The first is my Postcard Project. I know, Elizabeth and her Postcard Project. I would like you to ask to think of anyone, including yourself who would like a postcard in the next week or two. Because as people become busy, rushing around, there are some who are NOT going to office parties and who are not having a ‘good time.’ And maybe like me, who are estranged from their family. Or maybe who don’t get a lot of Xmas cards. Please post around about the project, I am asking as a favor. I know last time I got offended because I was depicted as a poor crippled woman who needed something to do. But you know what, I am poor, I am crippled and I do need to send out postcards, it is in my blood. I don’t care if I am portrayed as the little match girl reincarnated. I don’t care if the people are able bodied, I LOVE sending postcard, I don't care if they are super able bodied, or have superpowers or are famous. Or they think it is amusing. I don’t care. I just want to send the postcards. I am NOT going to let myself React, I will act. Honest!
I ended up talking today in an interview about accessibility in Victoria about the Postcard Project. Because I said that for me, accessibility is making sure that everyone is included, that everyone is having the same good time, the same standard of experience. I told the reporter that I realized that I was privileged before, sure I had tried to eliminate any discrimination on race, and worked toward gender and sexual orientation equality (sigh, but if only those heterosexuals would just, you know, not BROADCAST the orientation SO much with kisses on TV, and that! Sorry, still working on that one). But I never looked at people using walkers or those using a cane, or a wheelchair or any assistive device or brace and thought ‘that could be me’. No, that was THEM and I was me, and so when I fenced or I did sports or taught or was in church or participated in society, I would make some accommodation IF TOLD TO. But I never looked around and said to myself, “All of us, we will have the same level of experience.” And worked toward that. Because they (a wheelchair, for goodness sakes) weren’t like ME.
I’m ashamed of that.
So when the reporter asked about the Postcard Project I told him that is was my attempt at postal accommodation. That with impediment or not, that stuck inside due to snow or ill health or not, lonely or not, healthy or not ALL would be equal in The Postcard Project. That is why I would ask for a favor and have if possible that people list about the Postcard Project, and link to it in boards or with people, or on forums that I DO want to send people postcards, very much. This isn’t my penance, this is my progress.
The second thing is that a man named David Wybenga in Japan is helping me find some postcards. He and his wife run a program in Kyoto called The Japan Cat Network, because in Japan, problems (like disabled people for example), are not talked about and pretended not to be seen. Stray cats is one of these problems, here is an English article from The Japan Times on it. Very few stray cats are neutered, many cats are simply abandoned in ill health. David and Susan do a Trap, Neuter and Release program, they take ill cats to the vet and take in abandoned kittens before they die. For instance Sylvie was misidentified on intake as they post Sylvia's picture on the webpage and say “is actually a boy...” Oh well, gender bending fun for cats too! They have a page which lists ways to help, from a donation (you can even sponsor a specific cat), to helping translate (English to Japanese or back), to buying a T-shirt, sending cat toys, or cat food to (oh why do I live so far away!?), coming to attend the monthly cat ‘play days.’
This of course, in true anime style got me to thinking of cat girls (a common anime theme! What is better than a cat, and a girl? So first I had to find the ‘Linda’ catgirl. Here she is: she is professional and businesslike and only relaxes at home when she gets her fur combed out and then gets high on catnap and chasing birds that ALWAYS get away. As for me, here I am in a stylized, “Anne of Green Gables” catgirl. This would probably finally make my mother happy, but in reality, to those who know me in person and on line, that’s not really me is it? No, the truth (and I am trying for honesty here), is that THIS is me as a cat; a little insecure, a little neurotic (talks to herself, talks to her plushie), and a little in need of reassurance more than the usual cat. Also tends to ‘run away’ to like...the garden, and then sulks when no one notices and comes back. Then brings back a falling leaf she 'caught and killed' and wants to be rewarded.
Just as I know there are many cat owners out there (and I would love to be one of them!), and cat lovers, that this might be a project you would find of interest. Since this is a very global blog. Knitters please wait, I WILL have a knitting themed blog post in the near future, yes, be still all of our beating hearts.
Thank you for reading and for checking out the sites and if possible for passing on info about the postcard project. I have met some wonderful people and friends through the last time, and yes, I have a lot of people I send postcards to that I haven’t heard back from but that isn’t the point. That the postcards went out and they got them is the point!
The question for me, which I don’t know if I have faced is, who am I going to be in the future. We don’t talk about the future except for dying. Well, there is a space of time between NOW and dying and that is the future. And that is what I want to talk about. Because in a lot of ways, I have been so busy trying to make the future longer, or better that I kept missing it entirely, until it became the past. And quite honestly, sitting in front of lilies (waiting to die) and always looking backward, at what was, is okay, but not a life. It works for a time, but then my legs get all cramped, well they don’t actually because they don’t feel, but it is silly and stupid. Get up and go and DO something.
Okay, I am not the same Elizabeth who wrote Zed, which is a good book (oh and on sale at Linda's website again, we got a shipment from the publisher!), not my BEST novel, but a good book. I have realized I am not going to be the person who I dream, or dreamt of being, or who I liked being in my casual moments (this picture is for Cheryl). I am severely disabled and that is that. I spent a great deal of my time in an environment much more like this (if you just imagine a wheelchair, tons of books, stacks of paper, boxes of postcards, boxes of stickers, and everything from nose cream to stop my nose bleeding to steroid inhalers to keep my lungs open) instead of that clean table top.
I have good memories but I am never again going to be what I trained to be, no matter how many fencing and epee books I have. No matter how many dreams I have where I am fencing or have a sword in my hand again. This is wonderful to look at and wonderful for a time, a small time, to remember, but then, I need to move on.
A great deal of my life, when I am not in my hospital bed, or at the computer is spent like this (only I DON’T have a real cat to hold, but I have something close!). A little lonely, a little frustrated, trying not to be angry or sad. 'Being' means dealing with what comes: today my hands were shaking for the first four hours or so (couldn't hold a drink that well), and now they are still shaking but only a little, so I can type. I live in my mind; a mind which I know will probably erase everything in a few days. And to be honest, if I had more sensation, I would find the perfect story or fantasy and then I would masturbate again and again and again (hey, I forget every few days and the fantasy is just as good the 2oth time - perfect plan). Okay, yes, probably NOT what you thought I would be doing, that I would be writing the UN. Okay, fine! When I’m not masturbating, I’ll change the world, how about that?
See, honesty. I wake up horny some days, I just can’t seem to do anything about it – but with some tips from the MS society, I am trying (but oh GOD is it frustrating to get so CLOSE!). I have created myself a few jobs: the postcard project is a big one and I am going slowly through and editing some of the essays to try and make a book about degenerative and chronic disabilities. About the real stuff, which does yes, include the days you are high as a kite because they got the pain meds a little wrong (but in a GOOD WAY!). But also the days of crying, and of feeling that as a person, I can’t go on, that I was permantly BROKEN. But humans are unique and resilient. We do go on.
One thing I forgot for a while, because I was so worried about the pain, and that I was dying was about my future. I have an outline of a plan. Money from publisher is not coming, so I will work on another book. Because I want to be in Hawaii in the spring with Linda, Cheryl and anyone else that wants to join us – lets go to the Onsen! I will sell anime, I will sell books, I will sell things of the past, the life that I do not have. Because I will, yes, with some emotional pain, look to the future. I am taking off my wings. I am going to be mundane, if that is possible for someone with an open file as a cult leader and possible murderer! I am going to slog away at things and try to do a good job today so that I can reap the rewards in the future. I am going to spend quality time with Linda now, so our relationship is as strong or stronger than when this started. I told someone today, “Well, MSA has a 100% mortality rate…..so FAR.” It isn’t over until it is over. And while I am not a sword maiden anymore, I am not going to just wait around to die. I hope you have a great weekend. Cheryl and Linda and I will be doing postcards (and hopefully filling the new requests that pour in!).
14 hours ago