Power outage, people 'not nice' but still living each day and moment, openly.

I am sorry about not posting, but I did not have internet…or power, or air conditioning so I kinda went into heat trauma. But there is good news, I have power now and, um, I am eating easter egg jelly beans (yum).

I got back from recovering and was going to post when I was unable to get up, or stay awake. I don’t know if it is because I seem to have new pain levels and a fever that comes every day or what but it is seriously annoying. Nothing messes up plans worse than, “Oh, yeah, I’ll sort my pictures once I take this nap” and end up waking up a day later. Plus with the fever, I have been having some trouble recognizing people around me (Lucidity is a gift, treasure it!).

Then I wake up yesterday paralyzed, which is same old, same old, but my care worker asks if all the fans are supposed to be off. Wha? The power was off. And when I was able to call, they said my power was terminated. I know nothing about this, Linda is at work and they are talking about several days to hook up. I have 4 hours left of batteries for oxygen (which I have started using to sleep, as it does help), and I can already SEE my hands and arms getting larger, and my heart beat increasing due to heat. So I am pretty terrified. The manager says that I can ‘say’ it is a medical emergency but they won’t turn it on. I don’t know how we got disconnected, they say they called on the 20th, the day we were away. I told her that and she said it was automated and they don’t need to reach us to turn it off. Okay, fine, I have some savings left from paying everyone off after the auction, I will just pay it off. She says it is the two month bill of $120 (turns out running air conditioners all the time in winter is expensive: the air conditioners are tax deductible but the cost of running them isn’t). And I can cover that but I explain that I can’t get to a bank as I am in a dark apartment (with all the sound proofing up, remember). She says, well, you would need to pay the ‘rehook up’ fee as we didn’t pay. Okay, I am expecting like $50, which is what the phone company charged for hookup. No, it is $140. $140!!!! Seriously, and this is why BC-hydro has a monopoly. Okay, do I have $260+, I don’t think I quite do.

But as she explains, even if I pay today, I won’t get power today. I explain the medical issues and she says that doesn’t matter as ‘many people say they have medical issue in order to try and get it turned on faster’. Linda arrives home and it turns out that the whole thing is a screw-up. She said, we needed to pay. We did. Linda has been paying the bills but in case of going to the hospital in the US, she held back the payment for two weeks until we got back as we are billed for two months at a time. And the ‘you would have received many letters’ and ‘you owe since Sept’ they told me (which sent me in a wee panic tailspin). Not true. Linda had missed a payment last summer/fall and set up a payment plan with them and paid extra each month until it was paid off. Yes, the weeks when we had no money for food, we would be a few days late, but that was it.

PLUS Linda paid them as soon as she got back. She already paid them on the internet. The manager says that BC-hydro does not process internet payments for 3-5 business days. Fine, Linda will pay over the phone with the Visa we put emergency money on. No, they don’t take credit cards but use a ‘third party’ which charges 15%+ commission and they don’t process THAT either today. I ask if she will turn it back on without the $140 since they were wrong, we had paid, and there was no message left and no notification from them at all about discontinuing service, just the regular bill (which they decided to turn off, I am guessing because each time we missed a week we got a strike and with a $140 rehook charge, probably it is more profitable to turn off people than to keep them on, so we got bumped into the ‘turn off after a few days’ group). No, she won’t waive the fee as even if we didn’t GET the phone call, the automated computer made it (that’s right, not even a person or a verification of connection).

She decides to do us a ‘favor’ which is that she will ‘move’ the $140 fee BUT we have to pay the next two month bill in ADVANCE. So we can get hooked up BUT we have to pay $140 PLUS the two month bill before it even arrives and do it in like seven days or they turn us off again and charge another $140. Gee, it might appear they want these crazy hook-up fees. But the main problem is that I am running out of oxygen, the apartment is heating up and I didn’t get rest as I was ill the night before and now up early due to this.

I am happy that Linda has been doing the right thing, paying them and that it was a mistake, except they won’t admit it (3-5 days for internet processing, seriously, Canada has taken over the Soviet way of doing things as slowly and horrifically as possible). But we need power. No go, they say the trucks COULD come but it is ‘first come, first served’ even if they turned it off when they shouldn’t have. I get on line and start explaining how I can’t go to the hospital as they have central heating and I had to LEAVE the last time due to overheating and going into the kind of lethargy catatonic state of heat stroke. So I can’t go to the hospital tonight, and I passed out a few days ago due to overheating and 911 was called. I try to explain a bit about my disease and the manager says that only due ‘to the terror I can hear in your voice’ does she believe I have a medical condition and will tell the people in the trucks to TRY and reconnect me in the remaining FIVE HOURS in a city that is so small, you can drive anywhere in 20 minutes.

But first, we have to take out ALL of our fuses ‘just in case’ so that a worker doesn’t get hurt. So we won’t know when the power goes on. And they won’t tell us when it is done, we have to call them. Except no power on the phone, and Linda is driving to the library to make phone calls. I would think for $140 they would do something in terms of service, like a phone call, but no, maybe that is the $180 hookup or something?

So we are told to call them back at 3:45 because ‘we don’t like to work past 4:00 pm’ (I am kidding you not, that’s what they say – forbid a lighting storm knock anything out at NIGHT or anything).

So we wait. And Linda drives off and calls. No go. They say call again at 4:50. She does. The guy say, no, it hasn’t been hooked up, maybe tomorrow.

Meanwhile, for the past five hours my heart rate has been 130-150 because I am literally shaking in fear. I have no place to go that is climate controlled, my body is exhausted, and the heat changes are already working on me. Plus all the savings we had is down the drain thanks to the ‘reconnect’ fee and so the feeling of things getting better, Linda working, a trip I may have only been able to go a few hours a day to the Con but it was still pretty great. I was living life to the fullest, and sometimes that meant sleeping a lot, or having a fever, but it also meant talking to people and enjoying little things like how easter egg mini jelly beans were on sale and I went FOOD shopping with Linda to help her buy food for the first time in a YEAR. I love doing chores. I LOVE IT. I can’t do them often and I have to stay in bed afterward but I love doing normal boring chores, which now is like a treat. ‘Wow, can I really wash the dishes!’ (actually since that turned out VERY bad last time, I don’t think I am allowed that anymore, but I might be allowed food prep).

And what am I worried about? I am obsessed with the fact we bought this food in the US, including inexpensive (compared to Canada) pepper cheese, and fresh salsa, and Linda brought back Spumoni ice cream as it isn’t in Canada….ever. And now all I can do is look at the freezer and think of it melting less than two days after we get it here.

That, by the way, is an aspect of temporal lobe/frontal lobe dementia, the fixation of small things connected to the senses. So the memory of a smell can be overpowering, and more important to me than what is going on in front of me. Because of that, thinking of Linda being sad is worse than anything, and thinking of her being sad after getting the ice cream here and having no ice cream is more than I can bear. I can’t really understand $140 – which is why I paid everyone off and gave away the rest of the money to Linda in a secure savings that I can’t touch. Because if I want ‘animal crackers’ for example (and I like animal crackers right now – they look like ANIMALS, isn’t that the best thing ever! And you get to eat them. Plus they are make of arrowroot.) I would buy 20 or 40 boxes. Because the taste overpowers me and I can’t understand 20 boxes really except that I should be able to have a few animal crackers in the little box which is like the Barnum circus train car every day.

So on the one hand, scared of how to not die, and on the other very sad due to ice cream melting. So I ask Linda if she can please, please call BC-Hydro and ask them if a medical priority was ever put on our re-hookup at all. She does at 4:58, and the woman goes into the file to look it up and says. ‘Oh, you are connected.’

‘When was that?’ Linda wants to know.

‘Half an hour ago.’ (so before Linda called 10 minutes ago when we were told it was definately NOT connected, the Hydro company computer had it logged and recorded as hooked up, be we didn't know as we were in dark due to taking out every fuse).

The lights come on. Our savings are gone, but the ice cream is saved. Linda worked today and will work six hours each weekend day. And it turns out she gets paid for the work she did before we left, which including the whole day just before we left. So we have paid our Hydro until (whatever two months are plus two weeks from now). And we might have a bit left over. So all is not sad.

AND….I am having a birthday party. To which you are invited. It is my first birthday, I think. My parents thought that birthdays were evil as they promoted vanity and stuff so no cards, no gifts, nada. And I have never actually planned a birthday celebration before. But this is the time of living and I am alive. I want to live each moment, instead of wondering where the moments have gone. My party is on May 19th because if I hadn’t been born, I wouldn’t have meet so many really cool people. Plus I wouldn’t have been able to travel and live on four continents, and have met Linda. I am also getting Linda a present, which I have saved for, which is a surprise, except Linda calls it ‘A major many-birthday present’. But as she is looking for the full time job, and doing all the work, the caregiving, the job searching: I think she needs something fun that is all hers.

So that is why I have been silent. And now I hope to resume normal communication. Actually I want to try something else.

Despite the pain and despite the fever, I look at myself and think that I am not really doing things, or enough things out of love anymore. Yes I have pain, often lots of pain all the time. Yes, I have nausea most of the time. Yes, my body is changing and I am helpless. Yes, I have fevers every day. Yes, I am often frustrated by the insensitivity of others, or my own helplessness (the manager at BC hydro kept saying, when I talked about pallative and the need for oxygen, “Oh, I know how that is.” – really? You know having to choose between food or pain patches or electricity? Almost certainly not: but it something people say because they want to say something instead of ‘Oh my god!’).

But I realized that I wasn’t spending my energy doing things out of love. Leaving comments influenced by pain and frustration is not part of love. Blogging posts from helplessness, anger or pain is not love. And the more I am influenced, indeed it is an emotional giant wave that washes over me because of the losses in my brain in the frontal lobe, the more I need to take care to ensure that I act and write out of kindness and love. I have, over the last while, done comments and other communications that were out of a place of frustration, fear, and isolation. And I apologize for that. I don’t apologize for being frustrated, or angry, or isolated, or afraid, or talking about that, but for pushing people away because I don’t think they will understand. I apologize both for judging how others see things when I can’t know that and for acting out of anger, writing out of anger or just a desire to show I am ‘right’. Who CARES if I am ‘right’. I don’t, because worrying about who is ‘right’ gets away from what is important, which is ‘Is is good, is it kind, is it helpful.’

I want to write the truth or as close as I can because I think it will be helpful to others. I have even stopped swearing, for most of the time. I want to stop the triggers that continue the anger or frustration. When the manager on the phone told me that even though we paid, and even though we were never contacted, we had to pay the full amount and even then, we likely wouldn’t get power.

I said, “So we did pay, but you are charging us anyway, and we shouldn’t have been disconnected, but now we have to pay $140 and I am physically suffering, and you are saying I might not get power because you think I might be making up about having medical conditions?” I paused and said, “I don’t understand….that doesn’t seem very nice.”

She was silent for a long time because I think she was so used to people yelling that didn’t matter and she was so used to telling people the company line that it didn’t matter, that in jobs like that often the people the managers talk to are dehumanized. But I didn’t yell, I just asked if I understood what she said and then told her that those actions didn’t seem ‘nice’ and I couldn’t understand that. And honestly, I can’t. I think BC-hydro should do things that are nice. I am glad they hooked us back up. I wish they had called to tell us, and not said we weren’t hooked up instead. That wasn’t very nice either, as it felt……hopeless and icky. Like it was a never ending Limbo.

So, I can now write about the trip and about Jo Chen and how hard she works and about seeing Chi and Speed Racer face off in Cosplay chess, and seeing the winners of the Anime Music Video festival (which I recorded for everyone, and will upload, as I have the energy).

But I will also write as much and as well as I can about mental dementia and emotions, the ups and downs of it, the panic felt when I look for a plushie in the middle of the night, but I haven’t had it since I was eight. It is what I experience, it is part of the disease. There is the disease, which the more I write about the intimate stuff, the more I get ‘not nice’ comments. I get comments on my weight (which I can’t control and has nothing to do with eating), on how I see the world, on when I am vulnerable and when I am scared. Each time someone judges me, or tells me to ‘work harder fatty’ or assumes to say things to me which only Linda can say, because only Linda is here in the good times and bad, and holding my hand, and thus knows how to talk to the confused child that appears without scaring or hurting her – every time, I hurt (and it happens most post). But having others hurt you because it is easier to want the person I used to be instead of getting to know who I am now, that seems to be part of a prolonged terminal experience as well.

I can’t change the dozens to hundreds of aspects of my disease, nor do I want to be ashamed of them. But I can try to challenge myself to write what is true instead of what is easy. To hide what the bad times are like…that is easy. To not set tasks for myself so that I don’t ‘react’ is easy. I don’t want to do easy in this anymore.

Every day I live life to the fullest. Every day I push myself to do more and be more. And every day I have emotions ranging from despair to amusement, from simple quiet joy to the times during the day I feel the pain creeping over me, the fever making my eyes burn, and I slump against the headrest, and just concentrate on making it through the next breath, the next ten seconds. And then, after I while, I take it all, and I try to push it aside and see what I can still do. Every day.

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.

What are you afraid of? (and why I am going to HELL!)

Today Cheryl took me to the store in Port Angeles that sells Hello Kitty items. In a true adaptation to US culture I found there a Hello Kitty Slot machine for small children where they learn how to play slots and when they win they get candy; sort of an essential skill for that pre-school set. I found a sweet (as in rockin') night shirt which had Pirate Hello Kitty on her own ship but the tops were in small (told Linda, “We’ll just wait a month.” I am a medium/large juniors now).

I was looking over other Hello Kitty swag when I saw a 6 foot tall blonde girl wearing some goth NYC gear with some male in tow (I couldn’t see his face). She said to world at large that she was “Too old for Hello Kitty!” and how “I shouldn’t love Hello Kitty so much, I’m supposed to be adult and all.” I looked at her and she had that age bending thing which put her probably in college somewhere (19? 22?).

I told her, “Nonsense, Hello Kitty is VERY subversive.” She gave me her full attention. I reassured her, “In Japan Hello Kitty can be very adult, in fact there are Hello Kitty rooms in Love Hotels. You know about those?” She nodded. The male behind her was slouching in that, “Oh God, how incredibly boring, here I am stuck in the pink Hello Kitty shopping land" way, which made me think “boyfriend.” So I continued, “For example,” I lowered my voice, “In Osaka, Japan there is a Love Hotel Hello Kitty Room full of sweetness, but it is also an S&M room. It is VERY popular with females who take their boyfriends there and with the Hello Kitty bedspread, sheets and decorations and tie them down in the room of overwhelming sweetness.”

“That is SO awesome!” leggy blonde says and nudges the guy, “I’ve got to do that to you! Tie you down in a Hello Kitty room.”

The guy says dryly, “I think that might be excessive cruelty to fathers.”

FATHER? I roll around and see this guy who is clearly thin and wirey from hiking but yeah, late forties plus. Oh God, I am going to HELL. Of not lynched.

I keep talking with her and we compare shirts, she likes my goth Trick Fairy shirt and I like her goth Tripp NYC top. I start telling her about Westlake Center in Seattle and the stores Tall Girl and Hot Topic and how they are right next to each other. She goes to DADDY, “Oh we totally have to go!” And when I mentioned some of the corsets she was like, “I have to add that on my back to school list!” (Her father goes, “That keeps getting longer and longer.”)

BACK TO SCHOOL? She could mean college right, or like 12th grade? Well at least until I told her about the Hello Kitty Toaster which actually burns the face of Hello Kitty into your toast (at the front of the store). She squealed and said, “I just don’t know, now that I am 16 is it wrong for me to LOVE Hello Kitty so much?”

“No, not at all!” and excused myself to roll over to Cheryl and said, “Next TIME, can you please STOP me from opening a conversation with a 16 year old about S&M Hello Kitty Love Hotel Rooms with suggestions to tie down her FATHER.”

Cheryl just laughed and said, “Is this like when you taught that kid the word ‘masturbation’ by accident…should we be expecting some divine retribution anytime soon?”

She didn’t seem to understand the gravity of the situation, “That....or the police?” But somehow that just gave me cred with the blonde. Cheryl assured me that there were very few 16 year olds who did not know about S&M.

“I didn’t!” I said back in the car, “When I came into ‘the world’ at college there were all SORTS of letters I knew nothing about and understood even less.”

“That doesn’t surprise me,” Cheryl said (Cheryl maintains that despite all my efforts I am not even a junior pervert, just a ‘lesbian innocent’ and that I have a LONG way to go to reach the level of ‘Pervert’ which oddly Cheryl seems to be expert in judging). I guess she knows since she had a male ‘associate’ who used to spend his time at work, not just using the internet but spending time at hard core porn sites. And worse yet, used to keep all the links to said porn sites on his work computer desktop.

I was like, “Come on, I’ve known a few male eternal virgins (those who tend to do a LOT of porn surfing), I’ve been shown some porn sites.”

I was told that this guy had PORN with a capital “P” as in the ‘mildest’ image was one involving females and....um…animal cruelty? Mildest? Thank God he didn’t use THOSE as his screen saver. I do however stay up late at night sometimes asking myself the question “Mildest?” I had though myself a hard core perv as I could get the references jokes about women and ping pong balls, women and various vegetables but I just don't know for the life of me where could one go DOWN from…um….animal cruelty. And the way it was indicated was that there was a vast universe of DOWN, DOWN, DOWN into Pervert Land on this guy’s WORK computer. So, okay, I grant Cheryl the power to name the pervert and while she might think it is funny that I start giving out info on Hello Kitty S&M Love Rooms to 16 year olds and their FATHER, I am still sure that is lynching talk in many places. (Ahhhhhh, going to hell, going to hell!)

So now I have acquired a new phobia. One which will not stop me from talking the dirty about Hello Kitty (yet!), just VERY glad I did not mention the vibrators and now next time and EVERY time I need to make sure that male figure IS a boyfriend (Is my fault that I tend to focus on the female and the guy is just a blurry blob?)

Last night Cheryl, Linda and I were sitting around talking about fears. Cheryl used to do cave tours as part of her job as a Ranger and talked about learning to spot the people who were claustrophobic right off. And she said how some young kids you can talk out of their fears (like a fear that bears will attack them in the caves – point out that bears don’t have thumbs to get through the security doors) but some fears you can’t.

I said, well, I don’t think you ever could have talked me into how wonderful it was as a kid to have to go down to the cellar/basement where the sump pump was and get something for my parents. First off, why DO cellars have those steps with no backs, besides so that the monsters can reach in and trip you as you are going down? Also, it didn’t take the film Arachnophobia to tell me that there are spiders in the basement/cellar, of COURSE there are spiders there. And that is one thing I am afraid of, spiders. Indeed after going to bed last night, I saw a little creepy crawly on the wall and hooted out the alert, “Spider! Spider! Spider!” while Linda got some toilet paper and found it where it had crawled behind some clothes and killed it. There is no mercy for spiders I see because Linda would rather kill a spider than have to stay up for four hours listening to me go, “Is that IT? I know it is going to sneak around on my pillow!”

And despite how Linda tries to convince me that spiders do NOT actually seek human blood, I DO know that they tend to make humans their highway and if you move they bite. I know for certain because I had a friend (obviously a male friend) who would wake up in the fall with several spider bites on him. Why? Because he lived in a basement which had drywall but lots of cracks, so as the weather changed and the Spiders came inside, they used him as a highway from the closed off (and dark and dank portion) of the basement and his tiny one bedroom (why a male friend? Because do you know many females who wake up with many spider bites on them every night and then laugh it off?). I think he invited me over to watch me squirm and scream as the spiders came though pretty much all the time. As for me, I couldn’t sleep knowing that spiders were on the other side of the wall IN THE DARK doing evil spidery things (like breeding).

Then there is the whole, monsters in the dark. See, even as a child, I KNEW that having a blanket over my head would not stop the axe killer/monsters. It is just I did not PREFER to see my own death coming. I knew the blanket would stop the claws and such BUT since the LAST time I heard the monster creaking in the dark, and I put the blanket over my head and managed to sleep, I felt I should go with a winning formula. Also I had a night light, well to be truthful I had THREE nightlights (right now I have just one! So see, I’m getting better.)

For Linda she has a fear of snakes, and she says while she ‘knows’ it is not a dangerous snake she can’t help but jump and shriek. She also has one for mice, though she claims she just, “Don’t like them.” Errr, yeah, doesn’t like them so much she has to go to the other room while I trap or lay a trap for them and then peel off dead mouse (oh the things we do for love).

Cheryl says she has a phobia for scorpions, which to me doesn’t seem so much a phobia as common sense. Particularly as she woke up in Death Valley with THREE of them crawling on her. I remember in Malaysia visiting a scorpion pit (it was on the tour!) and I can’t say I was about to go within 10 feet of the pit (hey, maybe they can jump).

Cheryl and I are both scared of hieghts, but only the heights where you can LOOK DOWN. See, being up on a ridge, not a problem, having a hotel room overlooking the city, not a problem. But take me on a railroad trestle where I used to have to walk while looking DOWN at the ground a hundred feet or more below. And I was clammy, my limbs rigid. That didn’t stop me from walking DOWN from the observation deck of the Eiffel Tower where I have to walk down looking down through the iron gridwork stairs and keep staying, “Try not to think about how these stairs are over a hundred year old!” Other people I know freak at the top of Ferris Wheel, which bothers me not at all (because I have something to HOLD and not looking straight down, feet firmly on…um tin metal).

You all know about my needle phobia. But let me delve into my odd fears. But first Linda.

Linda says I can say that she used to have a very strong/overwhelming fear of FAILING. In fact, she would avoid trying or doing anything that could possibly result in her failing. But she has worked hard, taken a couple public speakign classes and now is sort of known as the go-to girl for learning new things. But it seems a lot of people are afraid of this. After I with her for a while, and we were a couple, I asked her to do what I tended to do every few years, which was to put down a sheet of “five year goals.” Just doing a fantasy thing of what you might WANT to do, but have never pushed yourself to do, like “Learn to sail” or “Take a Cruise.” Linda wouldn’t put down anything. When I asked her what was going on, she burst into tears. I didn’t understand at the time how hard it was for her to put down a list of things that she might have to try, because then she might FAIL. With some hugging and talking she finally wrote the list. After getting back from the UK, she found the list again and almost everything on the list she had done. Go Linda. Maybe time for a new list?

As for me, when I was doing my therapy for rape, I wasn’t just having nightmares every night, I was also extremely afraid of men who approached me on the sidewalk, their eyes moving to me, watching me turned me to a jelly of fear inside. A few guys picked up on this and used to call out things, acting if I was their specially owned pet, “I haven’t seen that on you baby, you got to come show me later.” This created in me a fear, not of men but of being in a place where men could do or say what they wanted; which seem to be both public and private places from streets to restaurants. It got so bad that with the exception of a few blocks I was housebound, due to this fear. I wanted to carry a knife, but EVERYONE including Linda stopped that because it was so obvious that I was so terrified (and full of rape/abuse triggers) that I would probably use it. It took some therapy, and some sports to give me back enough confidence to be able to walk by myself again, to have a man ask directions or want to stop and talk and not have a visible quiver of fear. These days, when I am far more vulnerable, I have no fear at all, that, thankfully but sadly, is one fear that is so common, we as society have learned the skills needed to help people overcome it.

As for spiders, “I spy, you die!” Guess I haven’t come to co-exist with them yet.

Anyway, that's me, and Linda, we shared, you share - so dish, believe me, I won't laugh (public speaking for example is a common fear - being attacked by armadillos..um...less common).