See me in the powerchair! Also postcards, packages, isolation and no GP

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.

Losing it (a horrid encounter to grief and change)

I have been falling a lot. Literally. Either my arms can’t support me or I lose direction and I fall, transferring to the toilet, most nights on the bed, once I fell backwards all the way to the ground. There are some bruises on my elbow, a crushed fingertip. You know, stuff. And it turns out that both Linda and I have been wondering if this is it, if this is as good as it gets; this is what it is going to be until I die. Will they get an electric wheelchair here in time before I need a sling for transferring. My heart has stopped a few times, and most nights or afternoons is so painfully erratic I have to take extra masking pills. It is erratic constantly, and has stopped for over 10 seconds more than a couple times. I am thinking of going to the hospital and finding the doctor who helped me before and told me I could have a pacemaker and see if this is the right time. Because I want to live.

I asked Linda how she would rate my health over the last six months and she said that it has consistently and constantly gotten worse, “But,” she said in an exasperated voice, “your productivity, has gone UP! At the same rate of your decline!”

What does that tell you? I asked.

“That you are determined! But the postcard project didn’t even exist six months ago!” she said.

I corrected her, “Not determined….desperate.” I will make a miracle; specialists may not, doctors may not, the health authority may not but I will make a miracle. But I can’t seem to stop my body from going down. I hope in Marathon terms that this is the Wall, and I have a good quarter of the race to run.

Linda has been snapping at me, making big issues out of little ones. We talked and found that it was because she has seen me like this, day after day, weaker. My night worker last night told her I was too weak to turn my head, or lift it. That I had to knock for help after I lost trunk support and she had to come hold me up to brush my teeth. The night worker was concerned, Linda was concerned, and feeling helpless so her only hope now is that maybe if I get more sleep I will bounce back, I will have a good week, things will pull up. And because she is helpless and scared, she snaps at me, because she doesn’t know what to do. And I understood and we cried. I didn’t tell her of the anger, I feel. The pain every day from the taste of NOT BEING ALIVE. Give me another year, two years, five years. Make me the town nutcase, but let me live. You know the grief that makes you want to scream, to have the aching ripped out of you in the sound of your emotional pain? I have that, I feel that almost every minute because it is here, and I am doing every trick I know and I am still falling, I am not getting better or stable, if anything, my body is falling faster; it is hard to breath now, it hurts. And eating is difficult, it spends a lot of my energy to eat two meals a day, so I eat one usually, if I can. I am physically tired and everyone has been making nice comments about how pale and crap I look so I put on base foundation and powder every day to look healthier.

I wanted to write a post about whimsy, and I did it, yesterday, about Yaoi. And it was true, but at the same time, I was fighting. I fought to get up that hill to badminton. And I didn’t have the strength for three games, I just played two. But I went. I had this same woman who seems to take a point loss from me as a personal affront so she drops them sideways and tells me, “Still can’t move sideways can you!” Nope, I tell her, didn’t bring my wheelchair teleporter today. Well, at one point, she had dropped for the third time and I was so far over and still couldn’t reach it with my racket that I crashed over in my chair. And with a growl I started pulling myself two inches at a time towards that birdie (my racket had flown out of my hand when I fell over). I was tied into my chair so I was dragging it with my lower body and still growling, after about eight forearm over forearm drags I reached out, grabbed the birdie and threw it by hand to put it over the net. My volunteer was there to help me back into the chair. “I got to the birdie a bit late!” I told her.

I don’t know what they think of me, but one of the coordinators asked me later if they had badminton wheelchairs. I said yes and explained they were like tennis, and had a ring and cantered wheels for not tipping. He said since it is “sports equipment” that the Y should buy one and then different people could use it during the week. He asked how much it was, and I said about $4000. And he was like, “That’s all, oh, we should definitely buy one, since it is sporting equipment.” I just stared, I mean, this and the other coordinator were the two people we had to make a complaint about like 5 or 6 months about because they didn’t want a wheelie slowing down their game. And now they think that buying a wheelchair for badminton for more people to use is a good idea? And last week, the same group that refused to play with Cheryl and I were asking how they could be more like me, because the tall guy in the foursome was out of rehab for an L-spinal injury (very low Para). I know I say that everyone will be our ally eventually, but when it happens, I am sort of ‘deer in headlights’ waiting for the truck to hit.

During my game out, I was talking to one guy about the Postcard Project and two other guys in their 20’s heard me and they were like, “what are you talking about?”

I explained that I sent out postcards to people who had disabilities or wanted to get a postcard.

“As a joke?” The one guy immediately responded.

No, I said, it wasn’t a joke; I said I write for disability and other journals and I tell people if they don’t get post/mail or they are stuck inside, or just want some mail to make things a bit brighter that I would send it to them.

“So it is like a form of cruelty?” the guys asked.

Cruelty? What? No, I said, these people, some don’t go out, they don’t get mail, I send them mail so they have mail. This isn’t a joke.

They couldn’t get it. “But doesn’t that cost you money?”

Yeah, it costs for the postcards, because I need to get all kinds and then I like to put on stickers and block prints. And for the postage.

They just couldn’t get it, like if it isn’t a joke, why would I do that?

I told them that no one cares when you are disabled, and I was tired of waiting for other people to care; so I am telling people, you send me your address, I don’t care if you are depressed, lonely, disabled or just want post, I will care. It stops here, it starts here, I am not waiting for someone to care: I will care.

Well how many people are there.

I said, right now it is just over 280.

There looked at me like I has some serious head issues (which I actually do).

I started telling them about how I need postcards for all types of people, for kids, and postcards for couples and for gay couples.

“Are you sure this isn’t cruelty?” One broke in.

“What?”

“You are sending pictures of gay guys to people, that’s sounds pretty nasty to me.”

I tried to explain that the people REQUEST pictures of gay guys, and I said, then there is the need for lesbian cards as there are lesbians and lesbian couples and there isn’t a lot in North America (or they cost a fortune) so I get them from Japan.

The other guy broke in, “I have an aunt who is a lesbian,” he said, “She’s had the same ‘roommate’ for like 25 years…..we call her UNCLE MORTY!”

“Score!” his buddy said they high fived.

I wheeled on and they went to play because quite honestly I just couldn’t believe they were telling a lesbian they play badminton with every week they call a FAMILY member “UNCLE MORTY” for being a lesbian. Well I do believe it in retrospect since I have no idea what my family calls me. Still, too flabbergasted to say anything but wheel on. Maybe ‘chicks in chairs’ can’t have a sexuality. I don’t know. I told my volunteer who had joined me by this point that those were the type of guys who would run me over in a truck one day.

Those people exist, and they outnumber me, greatly. Someone said 70% of people are scared of disabled. I can't overnumber them. I FORCE myself to respect them as advocates who don't realize it yet.

So, on that note, here is a quick Yaoi survey. We have the previous Seme and Uke couple, where our younger Uke had been caught cross dressing for money and dragged off. Well it looks like they have made up, but what is it with Seme’s and smoking, not my thing at all.

Now, this picture is um, not exactly very gender bender, nor does it leave much to the imagination as to the orientation or inclination of what is going to happen (Uke, struggle a LITTLE, don’t just have that look on your face, I mean it is RIBBON for goodness sakes). Okay, that is about as blatant as it gets for Yaoi, at least as blantant as it will ever get on this blog (sorry, for those who want MORE! Same applies for Yuri, the girl, girl action!).

And now to return to yesterday’s artist we find the couple back in another classic hetero female fantasy, the “swept off the feet and carried off”, the white wings almost give her…..er, I mean him a veil and look of a wedding (or one in the future). Definitely gender bender yaoi.

And simply because there just hasn’t been enough Yuri lately, I will slip this picture in before I get back on subject. Ahh, what exactly has the impish faced girl said to make the other blush so. No really, I want to know so I can use it on Linda!

Anyway, I have had some very difficult emails, and some very difficult moments during the last little while. Today, Linda came home for lunch. She said she is concerned because I have purple hued arms and I can’t get enough air. We did some sorting. There is a book faire this weekend and my lifetime collection of books are being sorted to sell and raise some money for the concentrator so we can head off to Seattle. Books I bought from auctions, bought I fought for, books I starved to buy, books I bought when I worked at my first full time job in a bookstore. I opened one door on the 18th century german wooden carved bookcase and there were my treasures; authors I had traveled all over the UK and Europe to find. Authors forgotten, books unremembered. Perfect printed children’s readers from 1892, 1883. The Quarter bound leather in gold of the Aldine, the art journal of America. The original printing of the Strand where Sherlock Holmes first appeared. “I just wanted to own these books all my life, even if it was just to touch and know I had them.” I told her as I tried to stop myself from crying.

“You don’t read much anymore.” She said.

“I KNOW, I can’t read,” I said, I had revealed this to her recently, my eyes don't line up, I have a hard time with some words. “But someone could read them to me.” I found my first edition of The Watchmen and thought of Victor, who talked about it recently. I kept that. I kept some, I let some go.

There was every book, I sent him from all over the world. He liked ships, cruise ships. He was dying from the same disease I am now dying from. He couldn’t read either at one point. I got him books on the P. and O. Line and all the cruise ships he had been on. Pictures he could look at. How do you hawk that out for $30 for someone else’s Xmas gift? You just do.

I have no companionship, nothing during the days, so I got myself a new mousepad, this one. Because the management won’t allow me a cat, not even in a penned area, not even as therapeutic value. If they could, they would evict me for having put in wheelchair bars.

Am I losing it? Oh yeah, big time. The post/mail I get helps, and Linda reads the letters to me. I am not the person some people think I am, I am a weak vessel, I am doing what I believe needs to be done and I am going insane. Because two guys who are yahoos and think that sending postcards to people with disabilities must AUTOMATICALLY be a joke make me struggle, make me think that is what I am. I am terrified because I don’t get a “do over”: no energy much less time. I do not want to live simply because I am greedy (or maybe that is part of it) but because the parts of leaving and grieving are so damn painful. To see how our lives are sucked into more appointments leading to no treatment, or more meetings with people who have lied to us before. I want to be with my books, I want to be with Linda. And it is making me the mad woman, the Miss Havisham ready for a event and life that every day passes her further by.

I don’t want to sound wacky but I have spiritual thoughts and no, they don’t extend beyond this life. But I believe that I suffer for purpose; I think I have been made strong in coming out, in all the trials of my life and Linda as well so that we can face this. I DO NOT BELIEVE GOD LEFT when I got sick. No, CHRISTIANS left, but God was there. And whatever deity you believe, I believe that this: that I am learning more, I am meeting more cool people now that I ever have before in my life. That I, for reasons I don’t understand, have the chance to ask people if they will change. Isn’t that the greatest achievement of whatever religion, to CHANGE for the better, to become a better person? That is my challenge, to change, while it rains crap; to ask others, to give others a chance, if they want, to change too. That is their choice. I would never take choice away. I just worry, scared that I am not doing it right, that I am screwing things up. And I have only one shot. Should I have written books? Should I have been less open and more gloss, more happy endings and lessons in 800 words? I don’t think so.

My scars, my frailty, my hurts, my ego, bruised, then broken, my sheer fucking determination says that I am one of you. We are the same, battered by the same world. No one is coming for me. There is not going to be a miracle because God is here. And no, God doesn’t hang around people who aren’t AB just to hope they become AB. If She or He didn’t believe I could make a better choice, then this would have no point, would it? I would be suffering without ending. I don’t believe that. I won't.

I don’t believe in getting spiritual points or any of that: I believe that every day, every week I have choices; and sometimes all the choices seem bad, except how to deal with them. I don’t know. I don’t try to ever talk about disability in general because everyone has to get through it on their own. They find their way.

This is my way. I am trying to take something unbearably painful for me, for those like Linda and turn it into something good. This weekend, more postcards will go out. And next weekend, and every weekend I am alive. Do I think sometimes, “Will I still be alive when this order of postcards arrives in six weeks?” Yeah. I do. And no, I don’t send it to be cruel. I send the postcards and the gifts to show you that in a world where so little care about anything but themselves. I suffer from that too, but I care about you. I do. And because I do so much, first two and now more people believe it too. Yes, you, the person reading. I care about you. I will, if you let me, send you a postcard. I will, if you let me get to know you, send you a gift. Nothing big, just something to say I thought about you, during this week, cared about you.

But now for some reason, other people believe too, believe that after almost 800 or just over 800 postcards, I will be there. And they send postcards. Postcards coming in, from all over the world, for the Postcard Project. And stamps for shipping them out. People had a chance and they changed. They took a chance on me, they believed, having never seen me that I do care; they cared themselves and wanted to help me. I can’t help but cry, I can’t help but be terrified but not petrified because I am not, cannot ever be a person good enough to live up to what these many people believe about me. But they changed and acted and now the world is a different place. So I act sending out cards sent from Australia, from the UK, from countries across the EU, from the States of America and Provinces of Canada. We post to five continents…together.

I can’t die yet.

It was pointed out that it was a year ago I started blogging daily, at the Namblopro (which sounds like some porn event) but is the blogging every day in November. Once I commit, I commit. As long as this body functions in some capacity, it is yours. I am a different person than a year ago; brain damaged but better, I am a BETTER person than I was a year ago, because I decided to care, and to stick to it. And you gave me that chance.

Thank you.

Me, thee and what's next.

I suppose I shouldn’t blog tired and in pain, but then I wouldn’t blog at all. I’ve talked to a few people and they seem to feel that people just don’t “get it.” So here it is, I do not have a chronic condition, which is one which is fairly stable or stays somewhat the same with dips and remissions.

I have a degenerative and terminal condition, I have several secondary conditions of which a couple if left untreated, which they seem to be, are terminal as well. I have several conditions which are conditions from the secondary conditions (tri-conditions?). Any of these conditions would be considered BY ITSELF, a lifetime disability. We don’t really talk about these because they are so unimportant to the main fact; that I continue to degenerate without a single remission. Yes, I have some drugs which hide these effects, or minimize them showing, but do not slow their degeneration.

I have reached the part where I have a path in front of me and I have to make choices, which is somewhat ironic because I have dementia. Remember that people with Alzheimer’s have dementia for a couple years sometimes before being found out. The woman that cries because no one will give her toast because she can’t remember eating the piece she had 2 minutes ago, is looking at people eating toast, making deductions (“They have toast, but I don’t!”) and acting on those deductions. Just because I am intelligent doesn’t mean there aren’t day I don’t I know what year it is, or day, or what city I am in or that I don’t need to be watched to ensure I don’t wander off.

I don’t know how long the path is, or where it goes but I know from what I’ve seen that it isn’t that great after the first bits, and probably has a few monsters along it. Linda and others are saying that I’ve lived enough of my life for other people and maybe it is time to live for me, for them. I think near the start of the year I asked for a family, a genuine family because mine has left me, and people responded. I guess some thought it was a bit like getting a bunny or goldfish because some have drifted off, their AB lives moving too fast to accommodate me, or they keep their distance, which is pretty much I expect from family to be honest. Some others, took that seriously. Some people wanted to be there for me, and have been.

I am alone, I am in pain, I am frightened. I have no medical assistance even to the level of painkillers which I got from a walk in clinic. I spend most of my day TRYING to get a better quality of life so telling me what I “should” be doing, unless you happen to work with Canadian paperwork (remember it took a YEAR, and several 14 page documents for them to determine I would never work again, am likely terminal and without income and due to a lapse of an agreement with the UK, would not be helped by the Canadian Government), please stop telling me how I can instantly improve my life. Because I am tired of failing everyone by not being exciting enough or not in pain enough, or not improving enough.

You want to help me, convince me that I am not alone. No, not that you will continue to watch while I die but that you will hold my head, that you will hold my hand, in one way another. I know that in the next few months with US thanksgiving and Xmas that people will be too busy to care anymore, they have their ‘real’ families, and real friends and the online film of Elizabeth’s Death just can’t compete. First off, I do not want a single Xmas card. I don’t keep Christmas. And if you need to WAIT in order to show you care about someone, then I have failed. I am in my own way ruthless because what I demand, not ask, demand from my friends and family is CHANGE. It is what I demand from myself. And if you have a habit of only showing that you give a damn about other people at Xmas, and you try to include me in that, it will be returned to sender. Because, what, you can’t look back over the last week and see a human being in emotional, physical and every other kind of anguish? There are two types of people, there are those who act (a.k.a. you change how you act!) or those who keep walking.

I started the postcard project because I wanted to believe that humans could care, would care about other people if they were just given a chance. Some, about 4 to 5% met that challenge. About 50% we never heard from. And because I don’t know which person NEEDS those postcards, I just keep sending. It isn’t my purpose to judge. Except now I don’t have the energy to continue. And I as I have said before HELP! HELP! HELP ME! MY GOD HELP ME!!!!! Apparently some might have missed the earlier notice. I haven’t received a single e-card or the like.

I guess, it isn’t just the Christians who say they will think of you and then stay away. I am in the equivalent of a burning building. And I’m terrified. Don’t you get that. I don’t have head control some days, I pass out frequently, I don’t have hand control. And I am here, past midnight, spending all the time since I got up writing to my friends. Because you are my friends right?

See, the point of this blog is that I am not only just like you, that I AM you – I got a disease that ANY of you could get, I am where any of you could be and I am being treated like ANY OF YOU COULD and will be. And how you treat me and the others who come across your radar, remember because that is how you will be treated. But now, while you are AB, your life, like other’s lives fare from the reality of where I am, will always be urgent. And yes, I know I come behind the milk you just ran out of, and the shopping list that needs to be done.

I can’t return all of the 20 emails, hate mails and demands every day. I try, but I can’t always, often. Sometimes because I am on the floor making the funny dance. Sometimes because I am staring into space. This is how my world ends. I have kept every promise that I have made and sent out a card to everyone who requested it; that will probably change soon, just out of physical need. We did, the three of us, 128 postcards in 9 days, and excluding one person received back, um, 4 (see 4%!). It cost us about $500. That’s the plain reality. I have no money, and I don’t spend it, what allowance I get I spend on others.

Okay, so my life isn’t how I planned it. I have a terminal disease just when I was going to be the bee’s knees, I had won award, I was doing not bad in national sports and hoped to move up to mid-rank in the US and Canada in my sport in the elite level. Sometimes you TAKE the road less traveled and sometimes it comes for you.

Sure, I would love to spend my time as an AB again, doing a full time job and having fun and reading 5-10 books a week, it was fun, it was exciting, it was disappointing, it was LIFE. Right now I have life too, but one that seems out of synch with everyone else. One where the people I get along the most with are those who are out of synch WITH me.

Do you know the only times I am truly at peace? It is when I am racing. Because there is simply no what anyone could reach me to save me in time if my heart went. And I have two choices, to push, and finish or to quit, and I won’t quit. So I either finish or die. Every time I go out, I know that is my choice: finish or die. What else is worth five days of pain so bad I can’t sleep for two days? But here, with everyone telling me what I need to be doing, what I should be doing, I am confused, I am often incapable, I am this girl. And that isn't a metaphor, I am THAT vulnerable, I am that pleading for someone to come and help me, because I need to be held. If not more.

I want a life where there is fun again. I haven’t really smiled in probably a week. I want to smile again, I want my life again. I want to LIVE and know the joy of living, and yes, dealing with the consequences. But I can’t do if I am spending so much time recording my best two hours in a week and taking photos and then thinly spreading them out over the rest of the week in my blogs. I can't LIVE if I am lying to everyone about okay my health is because they don’t want to deal with it. Okay, I am very ill, I can’t move by myself often. And that is with my pain masking drugs. I think Linda describes it on her blog. I wish it was a different way, I wish I bounded out of bed looking forward to a new day, a new day of action. Truth is I use dialogue as a way to focus against the pain and to stop myself from passing out. I want to be the impish girl who is trying to make the world conform to her, but I gave up that illusion long ago. Without help, and I mean people help, that isn’t going to happen. In fact, I can say, “Suck it up, Buttercup” and “I’m going to take back my life.” But the truth is that I am going to exercise tomorrow because I am trying to do something to extend my life a few weeks, because I made promises to people, that I would try until the end.

And I keep my word, as much as any human can. I will be here, still trying, waiting.

I guess the question is, where do I apply for someone to care about me, just me, for three full hours a week?

Alone

First: Linda has written about my now being a patient of Seattle world health center here, Cheryl adds her view here of my medical progress. Linda adds another post to A Girl’s Gotta Fly, I haven’t read any of them, they asked me not to.

My turn:

Have you ever stood on a painted line while people picked teams, and known that you weren’t going to be picked, at least not until the very end when your lack of coordination would be publicly discussed?

“You take her and I’ll take the one with the squint.”

Yes, a life not so much chosen as what was negotiated as a consolation prize.

These days I have that feeling, where I used to go to libraries and coffee shops so people wouldn’t be able to see it so obviously. I was alone. I am alone. Not the solitude of needing “time alone” but the aching in the bones that whatever it was that drew people together, I didn’t have it. Or I had it in abundance but it didn't work for me. When people went for drinks for after work, I wasn’t invited; when my ‘friends’ who were in fact just the people who would talk to me, whom I had elevated to the idealist term of “friends” had a birthday party I wasn’t invited. There was something different about me.

I am sure being part of a culty religion didn’t help.

I used to hike between midnight and 4 am up in the San Gabriel Mountains, following the paths I knew with no light, no provisions, no need but to get above the city, and see it, those millions of souls. I was 17, 18, 19. I don’t think my parents cared where I was, in that as long I was properly dressed and the house was clean for Friday night, then what did it matter if I performed sleep deprivation experiments on myself in my bedroom or simply didn’t come in. They KNEW that I would not be at a party, not drinking. I used to walk at night past the houses, catching that second flash of people who seemed connected doing things.

I did things that no one had every done intellectually and instead of making me popular with anyone even teachers, I was isolated instead. I spent two years of high school largely by myself. Left in the morning to figure out Calculus by myself because I had passed the books and teaching the Teacher on loan from the university had. The afternoon I put out the school newpaper. Of course, we didn’t just break the record for putting out the paper, I broke it by 8 times more than on record.

I spent my time focused to the extent that many immigrants would understand, working till the minute I needed to leave and cycle to university. Or cycling from working at school right to work. At 18 and 19, I was the last to leave work, doing the regular work as well as the company bookkeeping. At my college after auditing the second year of English lit (in seven essay tests, taken over three nights), I took seven consecutive courses which started at 7:00 am in the morning and finished at 10:00 pm crammed into two days. I did my homework on my work lunch break. I had no friends. I had no one who would talk to me.

I’m not going blow by blow through my university education, but lets say that I was always accepted on my transcripts but once I appeared no one wanted to be my mentor, or teachers. At my masters, after one semester exposure to me they couldn’t find anyone INCLUDING the director of the program who would be my first advisor much less my second.
I had gone to the masters program from an isolated teaching practicum. It resulted in my mental breakdown, an “internal” investigation of hired but not monitored invigilator for the student teachers on the grounds of sexual and other misconduct which gave us that survived to the end, blank checks to do it anywhere we wanted free of change.

Most of my life, in one way or another, there has been a passive to outright aggression, simply because I exist. And this disease/disability has changed none of this. I found out today that the Beacon Nurse is telling new worker to ignore my directions and the care plan. Doctors have tried for months to say that somehow the fact that my nerves are dying or dead is my fault. First I was accused of drugging and doping, with one doctor almost refusing to treat me until I told her what performance enhancing drug I had taken for epee, and was doing this to me. Two others came up with interesting reasons why they weren’t going to treat someone of my ‘lifestyle.’

Ironically, all I have ever wanted is to fit in, to be friends like people I see acting friendly to each other. What I learned is that family is a word synonymous with “pain” and “hypocrite” – because there is something about me, something horrid, something monstrous; I know this because my parents told me; my aunts and uncles told me. Going to a Xmas party and having 70 percent of the people walk to the other room and turn their back on me, the one who would speak to me, accused me, due to my relationship with Linda, of being a predator to sexually abuse child. That was pretty much the end of those ‘Christians’ I dealt with. Don’t worry, there were more, and they decided to allow the opponents free forum to espouse why gays were going to hell as “anal fecal loving lovers of Sodom” I can joke, “Hey, I don’t do anal” but it was the same, to these people women didn’t even rate high enough on the human species to be hated to that level. We were denied from joining ‘our’ church’s ‘pride stand’ at the Pride event because we didn’t have the ‘right attitude.’ Or I didn’t. Linda they wanted. Me, not so much.

I wish I could lie down and let dunes of sand drift over me. I wish I could lie down, that God would give me peace. But I can’t, or when I do, the pain of laying is extreme. The one thing that has made me so despised is a very short list; I had probably the highest intellect of anyone on the continent, and combine that with a photographic memory and “freak” was the word most used to describe me by teachers. A few times, in innocence, I verbally replayed an entire conversation they had the previous year where I was sitting in the office waiting to see the principal for starting another math or chess club with appropriate permission. One teacher told me and everyone else that I was a sociopath. Oddly enough that was what my father often accused me of. Because I would eat or drink (something out of the fridge), or read (a magazine sitting on the couch that didn’t belong to me). See, I was an incurable thief, stealing what did not belong to me, and punished as such. And my thanking of the corporal punishment needed to be from the heart, I needed to BELIEVE that I was the equivalent to a murderer in the eyes of God.

Gee, wonder why I didn’t fit in. I found out later that God’s eyes are often kinder than my parents. I used to believe that there was something about me, some common factor that would explain why, did they all leave, did they pretend not to know me (that was a favorite trick of parents…and Grandparents, we are multigenerational fucked up). And now I know why. I am an object. I’m not human, but I’m not a human, and I’m not an un-human or “u-h” as I refer to it. I have a slang for it as at least once a week I get people in my living room or I go into many people’s offices who by the way they treat me, show they do not see me as an equal, so that they are the people who determine those who are “like them” or acceptable (human) and those who are not, and thus to be threatened or crushed because they don’t have the same feelings or same rights as the person (an un-human).

But I am lower than that, object. Did I mention the other thing that makes me so hated? I follow the instructions of my father and tell the truth, and keep to the right. When most people have a large amount of fantasy in their life, or revisionist history and they can see me, not even saying anything, dissecting them down to their premises, their core of modus operandi, then they call what they see monster.

My care agency has openly admitted that no one who feels uncomfortable around me need take care of me, and that those who do come don’t need to either. I told the social worker today that Beacon has a list of workers who won’t come, and the worker there, unasked, said it was true and they told her I had seizures and she could leave any time she felt uncomfortable. The social worker asked if the care agency did any seizure or epilepsy training. And she said no, but they told her I would have a poster on my wall on what to do in case of seizure and while she hasn’t looked at it yet, she will. She was more upset that people could not come if they didn’t like lesbians. I said, “well, I think training people to deal with epilepsy might be a bit easier, but yeah, why not train for that too.”

Sometimes when I feel low I refer to myself as “the body” because it seems that is what dictates everything, that I live only to keep “the body” going, or that is all people see of me: my disability, my body.

But now I know that I am lower than that. Those times when I was the victim of hate crime, “I” was not the target; they didn’t hate ME, they just hated, and I fit the category. The times I was sexually abused and raped, even as a child, it was never ME they wanted, I was merely an external object of pleasure, a doll to relieve themselves with. And when I was hurt, cut, threatened, physically abused, beaten, it wasn’t me, it was them. Did they even know my name or just that I was a thing which could cry. I was not abused because of me, at least not then, but because I was an object of convenience.

As an adult, then the social and psychological abuse wasn’t really because they hated me, well I mean they did hate me to the point of wishing I didn’t exist, that I never existed (at least that is what my mother said, but then she had lots of versions of history; histories where she had to be drunk and I was the product of spousal rape; or the one where the pain of having me as a child started so young that even from the first she didn’t want to touch me, it hurt to much to touch or even feed me; I was pain incarnate. But like I said there were many versions).

The skills I learned of how to survive, how to stand up for myself against those who want to crush you because you know what you want and are willing to sacrifice to achieve it, are leaving me. My body is leaving me. My mind a bit too. I am become dependant. I, the person who learned how to run away from home and stay away, and not eat and survive, the young girl who could always take more punishment because these people didn’t know what pain was. I was born into a world of death and torture, this I was told. I was made to perform feats that made me alien to adults. The only thing that hurt me when my father hit my face enough to spin my face was that he had hit my face. He too had rules, where one would be hit, and sometimes a limit on how much. The school I was sent to had no such limit. They used to hit you until you were reduced to tears. It is thanks to them that I learned that while your body can cry due to pain, it doesn’t have to stop your mind or body from acting is you disassociate. That got me another “sociopath label”, to be hit, be crying and calmly making an argument against the practice in theory is not something people are supposed to do.

A few people think I don’t know about disability. And I admit that I came out of the closet very late in life. Of course, growing up in a religion where acknowledging being sick or seeing a doctor is saying that you hate God and have no faith that God loves you did stint me a little there. But I knew all about pain; pain so bad I couldn’t sleep; and that wasn’t this month, this was went I was 16, 17 then I couldn’t walk, 18, and finally operations. I was told they were “irreversible” and that if anything else ever happened, I would never walk again. Oh. Well, that sounded more dramatic back then. Which is why I started training for the marathon, often in the middle of the night, sometimes naked, other times near naked. I got followed by a lot of police cars. Warned a lot. Heard a lot of coyotes.

Because let’s see, I had been used as a human shield before 10, been prepared for torture, been tortured repeatedly, been sexually abused and raped by five people so far (well one family member and four others), been hit or had other forms of corporal punishment every day for long as could remember. I could and was required to go 1 to 3 days without food or water on a monthly basis, was called every name conceivable, had a connective tissue disease which caused pain so bad I couldn’t stay still. I slept on the floor without covering so that nothing more could be taken from me in punishment. I regularly ran until I couldn’t breath or only vomit to “drive the devil’s thinking out of me” (lesbian thoughts). I had paid rent since 13, worked since 12. I ran without lights because I could travel over terrain full speed without them even cross country. I did not care if I lived or died and wished to God that he would make up his mind. So what was it those police wanted to protect me from again?

I thanked God I came from a perfect family, I just couldn’t figure out why I was so screwed up.

“From childhood's hour I have not been
As others were; I have not seen
As others saw

I guess I want to say that I don’t know why you feel alone or lonely, but most of my fight came about from determining that I was simply not going to lay down and die, or to no longer spend my energy doing what I HAD tried, fitting in and failing.

And all I loved, I loved alone…in the dawn
Of a most stormy life- was drawn
From every depth of good and ill
The mystery which binds me still.

So I understand when people have defenses and barriers. I try to have none, and every day, every single day I open my email I am hurt (you have no idea the amount of um, hate mail I receive). I was told today that Ginsing and Calcium would cure my blue fingers. And I just sort of smiled. The person hadn’t even asked what was wrong with me, didn’t care, just cared that they knew all the answers and I was lucky to have them. I can’t break through to that, just be hurt. In fact, there is little, if you read the bible as a template that kept people to Jesus. In fact at one point all the people who were his “friends” were reduced to a handful, who openly said “Um, quite honestly a lot of what you say is confusing at best and pretty horrifying at worst.” Jesus asked why they stayed and the most outspoken said, “Where else are we going to hear the rest?”

From the thunder and the storm,
And the cloud that took the form
(When the rest of Heaven was blue)
Of a demon in my view.

People matter. I don’t. You can attack me, you can’t attack someone on this blog who opens themselves up to comment. Don’t attack the person, but attack discrimination, the ideas that some humans are less than others. Bring people together, remind them that they are the most important. Each person, when I do my postcard is THE MOST IMPORTANT person for the time I do that postcard. You have, what few people have in this society, my full attention, my caring, my wanting what will make you happy, what will give you delight. The same when I send a package. Yes, I am stuck behind my filters (and the odd idea that odd and twisted Hello Kitty and Anime things are interesting to everyone). If you think you care, find me people to convince that they matter as people, let me send a postcard.

Children matter, people who are innocent matter; they are to be protected, whether 5 or 50. I have no hope: not for my future, nor my past, and if I wrote a bestseller right now, I would consider it a WASTE OF TIME compared to sending out 100 postcards. Why would I want to be remembered, why would I want fame? You know how normal parents or immigrant parents want their children to have a better life: I want my life to have meaning, which is that some people, somewhere have a bit of a better life because of it. That’s all.