Doing, and planning is a form of resistance, of overcoming against the obstacles, even if it is your own body, to achieve a goal. Which is a big word way of saying I got stuff done yesterday and today!
Cheryl came over with the mail/post, which is a big event. And often interesting letters or postcards get read out to all (see, if you write to me then you already have an audience!), unless there is private information involved. Also, as sometimes, like for several hours yesterday my pupil on the working eye stopped focusing – I was a bit like a broken camera. So the letters are read out to me.
So it was time to show off the new power wheelchair, which after all the people saying, “Please don’t run Cheryl and Linda over!” and “Be careful as those suckers hurt!” and stories of chipped teeth, I am scared of my chair. I feel like car when they first came in, there should be someone with a red flag walking in front of me to warn all that Elizabeth and a Power Wheelchair are now approaching…except I would probably accidentally run him over too. Some nice people had sent packages of clothes so I tried them out. One was a top from Hot Topic, with switchblades but in MEDIUM (and that is medium juniors, so like 14-15 year olds medium) and I said to Linda, I am an over six foot woman, I may have shrunk to a LARGE but not a medium. I tried it on, it fit good, in that just tight enough to accentuate your breasts way! And I wore my Converse with red skulls and then some converse earrings another nice person had sent me. So here I am in the chair, junior medium top, size six ‘skinny’ jeans and I think a 14 inch seat cushion. But here is what $23,000+ looks like. Not really that impressive, but it is supposed to be small so I can use it indoor and outdoor.
After that I asked Cheryl if ‘the package’ had arrived and it had. I was waiting and waiting for this order from Japan and it finally arrived! Linda and Cheryl helped me quick, quick with all my stuff (oxygen, gatorade, etc) and down to the printing and framing store so I could get these done and then write a letter and sent it back with Cheryl in 22 hours or so. I was trying to find the right matte and the right frames for the art, and then get them sent out so that people can have them to cheer them up. I would send a lot more but between buying, matte and framing, I am limited in how many I can send off each week, much less other presents. Here I am working on the matte for a framing job for next week,I had brought along a few things from ‘the package’ which I am going to send out soon (as soon as I can afford it). All out to different people to give them a bit of a lift and a little thanks for being such nice people. I don’t think people get thanked enough, so thanks. And also, this way you see a small part (about 1/15th) of what I do to get a ‘presento’ as I first have to get a sense of the person, then find the ‘right’ gift (which is of course sometimes NOT the right gift), and then save money to pay for it, and order it. Then I save money, wait for it to arrive, email the vendor about when it was mailed (turns out they forgot), wait more, save money for framing it, take it to the shop and get my favorite framer M. to custom cut the matte. Sometimes the matte is in silk. Then to package it, write a letter or note to go with it, and then have Cheryl mail it when she returns from a visit. But when someone shows they care about you, then I want to show them I care about them too, even if it is only in this little way.
Unfortunately M. has a new job and was not there and this woman in a black turtleneck said she would do it. “Are you as good as M?” I asked.
She said, “No as M was totally amazing and very good and there was no way she could match that level of skill but she did get taught by M and though she isn’t as good…”
I said, “This really isn’t a very confidence building speech.”
But she did a great job and off they have gone, mailed/posted already I think.
We also did postcards, which I started with Linda on Friday, 37 postcards in all. I am trying to do 100 a month now, as a reasonable goal, maybe 125 in a very good month. I want a sustainable goal. So we picked and we matched them (oh isn’t the baby Lynx just too cute you want to explode from cuteness?).
Then there was stamping and stickering and then sending them out (with a list so we can keep track of who we have sent out to). Here is a shot of some of the ones last week, which were yaoi and yuri and cat girls (before you ask, no, I don’t have any more cat girl postcards, they all went – I could USE anime catgirl postcards as they are very popular, and all my cat boy postcards are now gone as well!). Postcards are hard work, with the stamping and trying to get into 37 different minds to find out what they would like the best, but at the end I am very glad I do it. But it does mean that when Cheryl leaves on the Ferry at 3:30 on Sunday, I am totally wiped – having worked straight from Friday onward. As packages, postcards, copies of Zed and any items ordered as gifts damaged to be returned all processed, packed and AWAY! Whew!
So that was my weekend, if it had been sunny I would have been out with pictures of me feeding squirrels or by the ocean. But as it was a miserable and COLD stay indoors day so we watched Stephen Fry travelling around America (thank you for that DVD gift – we only watch it when Cheryl is here), ate our food together, talked and did postcards.
I talked to Cheryl before she left and she said that I should give the readers a chance to tell them the truth. I said that when I open myself up, people often talk about anything EXCEPT the main and painful topic which makes me feel even more alone. And that is what is making me, well, sort of disassociated, a danger to myself and in deep emotional pain: the state of feeling alone. I don't know what to do about it, nor does Cheryl. To give you an idea of the level of inner pain, I WANT to go back to sleep about dreams of concentration camps or the one last night where they gouged out my eyes because I wasn’t alone anymore. This of course, as the feeling of being alone grows makes me think, as I regress mentally that if I just gouge out my eye, I will be happy again.
My opinion is that if you want to return to a dream of a concentration camp because while you are dying or being killed off in the camp, at least you have an identity; instead of waking up and being HERE, then there is something wrong in your life (beyond the pain and dying stuff).
Cheryl said that she used to go up on the roof and I think many readers used to as teens go up on the roof to be alone. I like this picture because it does represent to me the nature of urban isolation – an apartment complex of so many people and yet so alone (except the cat wandering by). That girl will have a ways to find that shoe falling off. Of course, sometimes we WANT to have some alone space, as teens, to get away from all the stuff piled on us from what seems every adult. To be alone and yet not feel alone. Some people are happy alone, some including me, need alone time, and yet many feel alone.
I am in a state of acceptance. I accept that I will die and can at any time, and I accept that I will and plan to live for some time (like 6 months or more). Both produce a frenzy of activity, to finish what I need to do before I die, and to be in a frenzy of activity to get a book and other things done with this new chance of a future I have allowed myself. So I don't tend to react normally, like when I have what appears to be a blown pupil (which indicates bleeding in the brain) but turns out that I am blind in one eye and my body is so tired the pupil is fixed and cannot dilate. And yet, I am not scared, or worried. Who can I share this with, what does it mean – it either means I am dying now or dying later, right? That last line is classic disassociation, I have become a person who doesn't feel the fear I should normally.
So yes, I am having a bit of a breakdown because I am painfully alone.
Also I currently do not have a GP, or doctor. Or to be precise, due to a letter sent asking why no treatment, no pills, no specialist referrals had occurred for nine months, the clinic took that letter and decided that instead of treating me, to dump me as a patient (yes, it is legal, in this city, labelled a 'red zone' any doctor can drop any patient for any reason).
So Cool Aide which treats homeless, drug addicts, those with mental problems and anyone off the street decided that I was no longer a patient of that clinic. And that was due to the fact, I was told, that I failed to take ‘patient responsibility of providing a general and overall diagnosis.’ Which is odd because I thought that was the doctor’s duty. Also, since 1 specialist named what disease I have, 1 alluded to it, and all of the specialists I have been to as well as the hospital diagnosed autonomic failure (which only HAS four diseases, well five if you count late stage lung cancer), that pretty much IS a diagnosis. Booth-Gardner was appalled. So was I.
I was told by same GP who wouldn’t even take an X-ray of a toe which the wheelchair techs felt and said, “Yeah, there is something wrong there, broken or something” that I had ‘deep mental issues.’ Why is it when we send a letter asking why I am not treated, then I am the one with 'deep issues?' Which while I should take as a compliment as in “You have deep issues in which you do research, you bring me the latest reports from Canadian Neurological Journals and you have a clinical mind!” I didn’t think it was meant that way, though that statement was squeezed between an excuse by the medical representative of the clinics’ directors and the GP why not to send me to a respirologist (as my fingertips were blue AND I was on oxygen), and more reasons why not to treat the anemia (the hematologist will do it), and then why not to refer me to the hematologist.
Stuff like that reinforces that a) I am alone and b) People will leave. Luckily I already have a GP who is interested in the case and offered to take it on. We would like to see what other options there are, as signing up with the new GP NOW is like getting married BEFORE the first date. Booth-Gardner can’t understand how treatment isn’t part of medicine as ‘medicine is a treatment based science.’ To which I said, “Ahhh, I can see you haven’t been in a socialist medical system, where medicine is to minimize treatment which is given only after definitive proof (from many sources if possible)." To rub salt in the wound, in visiting a walk in clinic to get the medication that was supposed to be provided at this meeting (“Come on in so I can renew your prescriptions” – aka “I’m about to dump you so let me lie to you about the real reason of the meeting”). The doctor at the walk-in said, “It is good you have such a proactive GP as without one with all the specialists you would need and the treatments you would require, you would die very quickly and receive very little treatment indeed.”
All that happened a week ago.
It turns out that while you KNOW they are going to say you have ‘mental issues’ (you are a woman, of COURSE they are going to say it!), it still hurts, ya know.
I thought everyone had enough to worry about right now, honestly, so I didn't tell you till now. Because the truth is that I AM trying to make my life into a normal life, one in which I live a day at a time, and I live like other people except in needing assistive devices. While most people take the life in the picture for granted, that is what I have been working toward for many, many weeks. And I still am. I want the casual just state of being. The latent enjoyment and sense of life in the picture.
Ignore the GP issue (I do), and I am still lonely. And lonely even though I know Linda loves me, and helps me, care gives for me, shelters me and when I regress she is there for me, to read me stories, to be with me. To give me cookies, and with the loss of function I am now experiencing I expect I will regress more and more, as my memory and word function seems to be being progressively affected.
But even though I am one of the most productive severely disabled people I know, I still pass out several times a day (about 20 or 30 yesterday, and a few already today), and I am not sure if I am productive because I am so incredibly alone. I know that people find my experiences to be a way to articulate their own, and I don’t need someone dying of a weird and rather horrid disease to feel connected, but I do need to feel connected. And most of the time, I don’t. Honestly, I believe that people, as they get to know me, will leave, and do leave. Last year I asked for a family, and many of those people are gone or have quit, while others, some who did not volunteer have become almost like the elder brother who left home while I was young and says, “Hey, you are always family.” I don’t know how to respond as I have never had that experience before, except to fear when they will leave me, to love while living that fear. I know that sounds pretty horridly neurotic, except that everyone DOES leave. And sometimes we need to be reassured, even cat girls need reassurance. It is odd but pets need and get the reassurance we love them that often we don’t give to other humans.
I work on blogs, gifts, emails and postcards...alone. I wake alone. I want to let people in but I don't know how to help people see what I am seeing about life and myself; about where I live mentally. Honestly, most people who even get close don’t WANT to be in that space. Sometimes, like getting Miko the kitty, people recognize I can be driven and yet have the mental and emotional needs of a child. I have a soft side, a feminine side. I needed that plushie. I needed to feel I was ‘like other people’ in reading; so people sent me manga to read. It helped. And thank you, I am trying very hard to figure out how to be happy, how to be joyful and how not to be alone. And while I do that I work hard to help other people not to feel less alone too.
I am glad I sent postcards. I hope they make people happy. That is important to me. As even a single drop makes a ripple (this is a new Doujinshi artist I found, they are VERY good). So I want to make as many positive ripples as I can.
About the alone, I WANT to be like other people. At first I was too smart, so I didn’t fit in. Then I was “crazy” or “way too driven” or “no one has ever done that” to fit in (actually, calling someone 'crazy' or 'nuts' for trying as hard as they can hurts emotionally). But instead of being glad, people got mad at me for trying new things (people like: organizers, directors, people in ‘charge’). Be all you can be! Well, not really, it is a good slogan for disability but not one that is encouraged when you actually DO it. Same goes with BC wheelchair sports, who emailed me that the use of pot will cause an automatic suspension down to a warning and thus will not allow a person to compete, even if it is prescribed. So I guess for those with MS, or other conditions, Wheelchair Sports isn’t for you if you use pot as pain or sleep control. That means except for Spinal Cord or Amputation, the rest of disability (the ones most likely to use medicinal marijuana) is told plain out, ‘We don’t care if you have a note from the Canadian government, you compete, you get disqualified.” I can’t imagine how they view competitors who are competing on high doses of opiates or steroids; when the rules of AB sports are applied to people who have conditions from cancer to chronic or degenerative illnesses only increases the feeling of “not you, not one of us.” Seems I don’t fit in with the cool kids, huh.
I will continue to post on the blog and do things on schedule, I will continue to work on my book and I will be going to a counselor to find out why I want to and try to stick knives or scissors through my rib cages or hands. Maybe it is part of the mental deterioration. Maybe it is the only way I know how to articulate inner pain.
After this, back to the light stuff. I will post blogs about adventures in bikini shopping and the humour in that, and planning the dreaded bikini wax (go go peripherial neuropathy!). See, because that stuff all occurs, all the different emotions occur at the same time: living for this moment, preparing for death, saving for a future, preparing for a future (like Autumn 09), being there for people, encouraging people and feeling so alone that I do stupid things to myself. There isn’t a separation; it is a jumbling knot of yarn that the cat has batted around so often you don’t even WANT to try and figure out how to unravel it.
I want to save for the future, for Sakura-con, for a normal life, and I guess talking about being alone, is my way of trying to open up. Of trying to work on this part of me that seems a wee bit messed up (like that WEE bit of ice that hit the Titanic) so that I can leave it behind. So I can live a life where I have joy again and I smile. Still working, that's me.
1 day ago