Beth plays ‘Whack a Mole’ & the Thanksgiving surprise

I went up to Boxing yesterday a bit blue. But nothing like doing heavy bag for 20 minutes or more to get the endorphins going. I developed a six punch combo for both hands, a sixteen punch combo and a 52 punch combo (this will be my secret weapon, like in the films when the coach goes, “She's turning it around, look, look: she’s doing the 52 punch combo!” And then my opponent falls unconscious to the floor – except I am a pacifist, just not a very convincing one).

I did bouts with a) a male kickboxer, b) a girl scared to hit me, so I had her practice hitting my head. Linda is watching me type this and just shouted: “She was a QUICK learner!” and c) R., a woman with the hardest, leanest arm muscles of anyone I have boxed who gave me a very good hook, and while trying to help her in practice of a single block and jab move, she misunderstood and stepped in to give me a full roundhouse to the head. Oh did I hear bells. I seriously think she would have broken my nose if she hit lower.
Good news is that I have better memory today. I just keep tipping over and slurring my words. But I laugh a lot, which is good. Coach Ian kept yelling at me to breathe (by which he means, ‘take a five second break’), and at one point jumped in front of me yelling ‘BREATH’. My muddled mind thought, “Do I try to hit Ian while he ducks?" And kept working on my combinations, until he grabbed my hands. “Breathe”

Ian: “You aren’t doing 12 rounds you know.”

Me: “No. So Ian, can you prepare me for a 20 round bout?”

Ian: “Some guys only do ONE bout.”

Me: “How about 45 rounds, like the Canadian that beat Jack Johnson in Cuba?!”

Ian: “Hey, where is your oxygen?”

So that was boxing. It hurt last night. I had funny dreams and moaned a lot.

Today I went to the library and wheeled home, so that I do not get slothful. Because that’s me, right, slothful.

Then came the Thanksgiving Surprise: Someone came over and dropped off this a few minutes ago, which wasn’t from them, we don’t know who it is from. But thank you.
This holds: Turkey Breast, buns, Coleslaw, wine, apple sparkling drink, instant mashed potatoes, gravy mix, can beans, can peas, can corn, cranberry sauce, taffy, chocolate, MINT GIRL SCOUT COOKIES, hot chocolate and apple pie.

That’s a whole Thanksgiving feast.
I started crying writing that list, because the idea that someone I never met could care so much about us, so that we could have a thanksgiving dinner. It is everything I wanted to believe in people: amazing, kind and generous.

There is a friend, a guy in the building who can’t get around because he is waiting on the same health system to see if they will give him a heart operation or just let him die, him and his two bachelor boys. So we are going to invite them up to have thanksgiving dinner with us. Because caring should beget caring, I think. So somehow, for those who have no thanksgiving plans, and we know all the people with disabilities here, we will try to have a real family dinner.

I did not think I asked for help, because stuff is what it is, and I know that a lot of people are going through sucky times right now. We paid for our computer repairs with snacks (rice crispy squares) and small gifts, and he said, “Next time it will have to be money.” Yeah, but right now, I have a computer and as much as I love the soup I’ve been having the last couple days, having something other than soup sounds pretty good.

Thanks to everyone who gave a thanksgiving surprise, we will try to pass it on. I wish I could have you all over. But we got excited at this tangible food in front of us because – someone came to our door…and there was food. So we were like, 'let's take a picture!' That’s cool. I was so happy, I lost balance and fell against the wall. Next time, less ‘whack a Beth’ at boxing I think.

Where I have been, a bed on fire, and late remembrance

I am still alive…I can tell because parts of me hurt. I finished, just 3 minutes ago, a 4 day marathon of listing items for ebay (92 manga lots!) in hopes for getting some funds to save and enough to pay ebay sellers and get gifts. Sorry I have been not communicating, as it has been: get up, work, take pain pills, sleep, repeat. Over and over I worked until fingers, wrists, arms, forearms, shoulders, back, pelvic bones stopped working, just ached. Until I was not all here. I don’t know a time where I haven’t known only working and pain...literally, I can remember vague things in the past, but my recorded short term memory can’t believe it is over! Now this is what I WISH Linda and I had been doing. I mean, someone, well two someone’s has to do it, why not let it be us! Oh wait, I have the lacy thong, woot! I get to be on top! Sorry, fantasy distraction, late night thing.

The items and lots for sale on ebay (was over 90) include Yaoi (which are boy/boy love manga books come'on they are CUTE, and there is a KITTY! Most of Yaoi are buy it now or choose to bid and hope you get it – postage is included) and Shojo manga lots (Female romance, falling in love stories, couples stories) and Action manga lots like Vampire D’s oversized 200+ page mangas. I tried to list only complete sets as I know the frustration of buying half of a set and not knowing the rest of the story. Some of these I bought before I got sick, I think, or started. The ebay listings are HERE if anyone is interested. There is quite a lot that younger teens would like, high school romance, even 9th grade romance, plus books for singles in the big city, college romances – Venus in love is that one, where a girl is going after a guy in college, only to have the guy in the dorm next to her, her friend, in love with him too! Lots of Ghost story style ones (3 stories solves a volume or one a volume), and some cult ones like Lunar Legend, or Eureka Seven (famous anime) or The Girl who Ran through time (an alternate story on the famous Anime Movie: Girl who Leapt through time).

Sorry, it is all I have been staring at for um, days? Weeks? When did I start taking photos? Wow, I have a LOT of Yaoi. But you know most of the Deux Yaoi (and others) are more like fun boy love light romances, (isn't the build up and the moment of first kiss the tingly 'aww' moment particularly when the uke/femme is trying to be all butch! A "I don't know what you are talking about" - response: KISSED!) often the best yaoi is with no heavy adult scenes (or few), I recommend Manzai Comics, Idol Pleasures and Part Time Pets!
I am off to bed at 4:00 am, and tomorrow to the doctor, and then two more appointments later this week – no sign of any treatment in sight yet. But I keep working at it. The night worker who came on Wednesday and said she would come back told the schedulers she would, and then would not, so we will see tomorrow if it is just a timing conflict and get that changed.

I have been going through a long dark patch. Sort of self harm fantasy, compartmentalized, then lying in bed or when I was alone or with people every night, every afternoon, I thought about setting myself on fire. I believed it was the only way to help Linda and myself and get out of the loop I was in (I didn’t say I was very sane at this point!). I held the bottle of spirits I was going to pour over me, and then over my sheets in the bed before I lay in it and lit it. Now I look back and think that might not have been a very um, (I can’t think of a word that isn’t a horrid pun: ‘bright idea’, ‘illuminated thought’, ‘flash of brilliance’) good. Sorry, thinking about setting yourself on fire for dozens of hours is NOT GOOD, but it is sort of very ME, which makes me glad I didn’t do it. Got to stop listening to the voices, whether they be inside (like the ‘Bad Beth’ and Guilt Inc. voices) or outside (like the questions, insinuations, harassment, and basically abusive relationship doctors can hold over us: and health officials).

I hope you had a better weekend and I really hope all this work brings me the financial security I am hoping for. Now I really am low on manga! Seriously. I also hope all these doctors appointments bring SOME sort of treatment. Linda got a link to treatment for MS people to give remissions (not a treatment that would be approved here however) – still advances continue, treatments will come but until then, I have to live, to find balance – and to pray that the insanity of Black Friday (Thanksgiving is this Thursday, the day after that, Friday, is the most busy shopping day of the year) crazy spending in the USA spreads to ebay!

I sort of missed Remembrance Day. I wanted to remember on Nov 11th and did and do now, all those who worked as nurses in the field and in the stations all the way back to the home country on both sides of WWI and WWII. These women, who had PTSD and ‘shell shock’ went unrecognized and unappreciated. Florence Nightengale’s experiences in Crimea left her in bed – Shell Shock, M.E./CFS? I also want to remember all those families and spouses, communities who assisted in the caregiving of those who returned from war with impairments from psychological to the physical: the lungs, the limbs. There are millions to remember those who fought, let me and those who chose to remember those who tended men ripped apart by shrapnel, or who died holding their hands, and they went back to their cot, cried, then got up and went back to work.

Sick, Eiki Eiki, alone and yet trying to reach out, to get help: the better world

I am very sick, which is probably a combination of fatigue/exhaustion and some sort of opportunistic infection or spinal lock which makes the world go funny and me fall over a lot. I can’t quite understand how I could be exhausted, not when I didn’t eat until 7:00 pm today and I am tilting back and forth like on a ship focusing on the screen to make a blog (hey, I made a commitment).

The short version is that Beth is very, very sick. Really sick this time. I will have to accept bed, rest, and being taken care of.

I have spent days trying to connect to family, to anyone, as I am tired of being me, the only person I know with this particular condition. I feel a freak. I don’t want to be alone anymore. This lead to an amazingly horrific day today where I spent so much time on the phone and got, nowhere. The Canadian organization or Rare Disorders (I wanted a support group) is away, leave a message.

At A.A. (Alcoholics Anonymous) I got a rather hostile reception (though I did say I didn't want to drink when they asked!), as I was asking for support groups for self harm, and no, they don’t DO that, and gave a list of groups which included Overeaters Anonymous. I asked since I was struggling with Anorexia and both are about control, loss of control, fear of loss of control, and eating would THAT be a place for me. Absolutely not, that would be cruel to have an anorexic go to an OA meeting. They don't DO anorexia: I needed to call the mental health department.

I refrained from pointing out that ALL A.A. and groups from them like N.A. are based on a form of self harm: yet I feel that if I suggested the woman I was talking to should call a mental health ward because she goes to A.A., she would be upset (yet that is what she did to me). I openly starve and self harm and there is no where for me to try and live a better way day to day with support? I DID go to the mental health section and found that there is a program which does offer support groups....for the parents, siblings and those who live with anorexics. haha. For struggling anorexics themselves....nada. I WAS trying to not cut, or stop eating becuase I felt the loss of control (dying makes you feel a lot of loss of control). I was TRYING to be better.

Then I called the abuse line regarding abuse from caregivers (which is epidemic, two government investigations in this town alone). They had no idea, since I wasn’t a senior. We talked about my background; they were amazed at the level of abuse that was taken as ordinary. I called there because they were wheelchair accessible. No, the support groups they had wouldn't be right for me. And the person talking to me didn’t understand how it was I ended up caring instead of abusing. Or caring at all.

Then I went on to call grief centers for which there were ones for people who do care giving for a loved one who is dying, ones for people whose children were dying, one for those who spouses were dying, but none for those who were actually dying. I was trying to get better. I kept trying.

I called the BC Bereavement Helpline (toll free) for listening and resource listings of support for grief and loss, and found another recording as they are only open Monday to Friday 9:30-3:00 pm. Sigh. Linda later said, "Gee, what if you feel grief on the weekend?" Since I have ‘sundowners’ – which means I feel even more isolated as the sun goes down, to call at 4:00 pm was pretty brave of me. But no people. Lots of machines.

It was now hours later (as I was calling Akadot which had an error in my order but the system had crashed and after 6 tries or so over several hours I gave up), so I decided I just needed a HUMAN VOICE and called the Needs Hotline, the 24 hotline for those who needed listening, suicide prevention, abuse and anything else.

I got a phone message which told me that all volunteers were either busy or away and if I was being attack or abused right now please call 911, if I was committing suicide call this number and then at the end of the message it hung up. Wow, no 'wait for someone', I can’t even talk to a human on a 24 hour hotline? Harsh.

I likely have with days or weeks of reduced sleep and eating, not enough rest; driven myself into an exhausted physical breakdown of an already attacked system. Probably is it because of my disease as I can’t feel total exhaustion until it is too late, like I can’t feel temperature, I can’t feel hungry, I can feel thirsty, I can feel the need to pee, I can’t taste what I eat, I can’t feel bruising, I can’t feel muscles rip until it is too late, I can’t feel my hands or arms, I can’t feel my feet, even when they are bruised or crushed, I can’t feel my legs, I am a human zombie and I am alone. I can only feel emotional pain, like when another Anonymous wrote TODAY that my post ‘Sexual Abuse story: finally told’ to free myself of my demons was ‘this is really HOT!” piece of writing. Multiple sustained rape, abuse and torture of a prepubescent child: “Hot!”

So yes, I push myself because even as much as I push myself, I cannot seem to break through this invisable wall. Is there a person out there behind those phones, or does caring stop at 3:00 pm. Because I assure you when your nightmares are "hot" the terror and grief do not!

This is my plushie given to me ‘soon’ ago by Linda, her name is Eiki Eiki. She has a heart inside, and Linda said they told her to make a wish. What was the wish? She wanted me to live a long time.

Here is Eiki Eiki reading a manga (Uta-hime, the songstress), to one of my other plushies named...Bear. Some plushies CAN read, some plushies cannot, I can’t explain it, I try not to think to hard about it.

I did 39 postcards with Cheryl and Linda and had them sent off on Monday night, to be sorted at midnight (due to the holiday); there were many new stamps to play with, like the knight and the forest of adventure and dreams. I like those ones. And the lilies.

The woman on the abuse line couldn’t understand why I didn’t drink, why I wasn’t more..incredibly screwed up.

This weekend my parents came over, they could not remember the last time they invited me over, or when they had last been over. I asked them over to find out if we could be a family? I was turned down. Linda was told, by my father, during the discussion that she was ‘allowed’ to speak now. In the same way I was ‘allowed’ to have emotions...and sometimes not allowed. It was all somehow my fault. Their silence was the love of not wanting to disturb me. It was a farce and I was desperate. I screamed.

I was on the floor begging them to blame me for everything. PLEASE, no more fighting over who was at fault, it was ALL ME. Could they forgive me? Could he, would he, forgive me and let us be a family?

No.

The one word I needed so badly he never used: love. Today I told the woman on the abuse line that I believe that this world is going to get better and I work toward that. That cat girls and dog girls will learn to get along, as it were, and that they will find that their differences are not that much (maybe there will even be attraction?).

I know that I live a fool, I die a fool, but I continue to believe that just because I have not yet seen something does not mean it can not happen or exist. Like looking for the beauty of the moon rainbow, it seems that loving, caring, compassion to others as a norm is something to make people think there is something DIFFERENT (like wrong in the brain) about you. I believe that there is a world where the beauty of these things WILL BE SEEN; just because it hasn’t yet, and just because I will die before seeing it does not mean it is not worth believing.

One of my favorite passages of the bible, though Christians would call me an atheist, and I don’t think in this passage it matters your faith is Hebrews 11. It was about those people who believed in more: that there was a better country, a better city, a better world and though they lived and worked for it, and never saw it, they believed. “They were weak, and yet made strong.” “they were stoned, they were cut in two, they were killed...they were destitute, afflicted mistreated…” I ask the question of Linda and others, “Would you rather be right, or would you rather care about the other person?” For Linda and I, it reminds us what really matters. For others, they would rather be right.

Anyway, I will be back with something light and I hope another visit to different markets (the joy of Victoria is MANY farmers markets). I think in a world where even a 24 hour help line has a recorded message which then hangs up on you, yes, I probably have driven myself to exhaustion and beyond, over and over again in trying to make people believe that THIS corner of the world does care. Except now I must rest. Don’t worry, I will spend the time doing something constructed...oops I means doing something constructive, or maybe Eiki Eiki can help ME read a little manga.

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.

I am an emotional athlete

Reading a post of Perpetual Beginner, as she talks about the ways an athlete or martial artist knows when they do it right. She describes her practice of her kick again and again but when you kick the heavy bag, if it starts to rotate then you haven’t done it right. It reminded me of my life.
Much of what I did was and continues to be is in absolutes, even in writing. While I never write perfectly, I either came closer or further away, each day.

Athletically that meant, did I do a lunge correctly, if so, do it again 100 times a day, do it 200 times. If I did not, have it corrected and do it until it can be done without thought, do a parry-lunge-advance lunge attack, do it 50 times in a row back and forth in the courtyard, with only the moon above as light and with my blood pounding in my ears. Do a lunge into a fleche and practice it simply because you have heard that women don’t have enough “power” to do this move (I actually got a point using this in competition).

Back when I ran long distance, get the body in rhythm; find out what is lacking, the body or the lungs. What complains? Am I out of breath, or do my legs feel like concrete. Work on that, push that. I sought a perfection beyond what was expected, beyond what those around me did. Exercise to exhaustion and THEN time your next five miles. Exercise to exhaustion and THEN do the basic 20 minute warm-up of lunges, advances, retreats; where is your arm, where is your wrist. Push for perfection, at all times.

I miss that more than I can express. That seeking of of the physical moment were you ARE perfect....for two seconds, and then the next lunge, or the next mile is to be run. When I biked, I biked to class, I biked to work, I biked over mountains for fun, biked across British Columbia, biked when Linda and I got together. That was when I learned that some people don't LIKE obsessively pushing themselves. That if I wanted Linda and I needed to tone it down a bit on bike rides. Yet often, our early dates were me running laps around an abandoned outside track, trying to go faster than the flies and mosquitoes while Linda timed me (hey, I had marathons coming up, can't miss a training day!).

That is not who I am now. It is not possible. If I talk too much, without interruption, I go into seizure, even while on oxygen. I push myself and the beast of the disease will push back, without thought or remorse, leaving me to be carried to bed, to lie there moaning for hours. I cannot seek that or any kind of external perfection. I cannot eat without biting my lip or tongue, so much has my tongue weakened; my mouth a mass of open sores. My hands tremble, my fingers tremble, I try to pull of toilet paper after peeing to pat down, and I can’t, I take two tries, I drop the toilet paper. This is the body I life in.

I won’t have those feelings of control again, except as a gift on a good day. An hour or two a week maybe when I am out on a training wheel for a 5K, or at badminton.

Now, I send postcards, I blog, I focus on Linda and the people on a list I have. A list of people who while I may hope care in the same way, I first must struggle to care about, whether there is any sign of them caring or not.

I work on postcard, I work on replying to comments, I work on blog posts and most important I work on staying emotionally connected, even when people go away, and when I can’t understand what that means. Becuase I don’t have the ability to sequence time, so all I understand is 'go away'. I get about 10% feedback from what I send out. Some days, I get great feedback, these are the times, when as an emotional athlete it is easy to connect, to care, to be there. There are the days which are empty, where I have worked hours and hours and there are a couple comments, or I have sent out 20 or 30 postcards and heard nothing at all and yet I turn back to the list and the postcards and I start again. Those are the days when I am emotionally exhausted, when, like as an athlete before, everything inside me tells me to quit, to give up, that no one cares about this but me.

I go on. I try to go on. I wobble emotionally. Much like the spent athlete, the easy things are not easy, do not look easy to others anymore. I am told by others this is a waste; a loss of time, of money, of energy. I look emotional clumsy to myself, to others, I feel alone and disconnected. It just means I need to keep working. This are the times every athlete, artists, human being who cares faces.

I get up the next day, and take down a list, look at the postcards, spend 10 minutes to find a postcard for a name and write out the address. During those ten minutes I will care as much as I can about that name, that person I know only from words on-line (and the two to three hours it will take me to finish the postcard).

I do not have a body that can be athletic. I struggle, often through pain, or distraction, through fatigue, exhaustion, to care, to be there emotionally for someone, someone I do not know, someone I will never hear from, and I know it. This is the way I challenge myself, the way I choose to rebel against a society where it is always someone else's problem and against a medical and social system I am now part of where actually caring and doing something for someone, something that isn’t your job, that you aren’t getting paid for, is unheard of. This is the way I try to be the type of emotional reaching out I will rarely if ever receive from a system that is supposed to support me.

I will send out letters, I will send out gifts and from some, from the majority, I will never hear back. And when the time comes, like last night, sick, bleeding, I was taken off by Linda still working on the name of those for postcards, those for gifts. Lay in bed, in delirium of unstable body temp and pain. I will never know if the card makes a difference or not, for most of the people I post to. So the challenge in the second and third time sending to a name, is to care just as much as the first. I am an emotional warrior challenging myself to send out the message, “I care about you” at the times where there is no evidence, when I feel most in pain, the most isolated and send the same warmth, the same caring.

I do this because to do so is good. When I know or receive it back, that makes the load lighter and connections are made, when the days of silence occur, it is heavier but is not why I train or act. I do so because it is good, and because I can push myself to try and be, for a few minutes in this person’s life, what I did not receive in my illness.

For my first year of disability, for over a year, I received more concern and more action on that concern from a person who sold me a muffin and a coffee than from my social worker, my specialists, test technicians, schedulers, case managers and other people paid to supposedly give a damn.

If you give me your name and address, I will not wheel by. No, I can’t make you better, I can’t solve your problems though I might be able to listen in an email. But I will keep sending postcards until you tell me to stop. You may be lying on a bed, in depression thinking no one cares, but I will, and something will come for you. You may rip up the card as soon as it arrives. See, I don’t know. I have to put myself out there. Put the card out there. Some days it is hard, very, very hard. Sometimes I want to curl into a ball and demand that I am not coming out until I get love and caring. Some days the health baggage, the pain baggage the change in conditions drive me to the point where I can barely see or hear. And within that I look at a name and prepare myself to open, prepare myself to search what I know, to find what might make this REAL PERSON, not just a name, but a REAL PERSON happy, to give a damn about this person. Even on days I don’t give a damn about myself.

This is my discipline, this is my art, this is rebellion, this is how I am a warrior, this is how I am fragile and open to be hurt.