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.

Self loathing, mirrors, and tomorrow.

I don’t know what percentage of people self-loathe some aspect of themselves, some part that they can’t seem to change, and can’t accept either. But that part used to include about 95% of me. Ironically, it the best, the most empathetic, the most sensitive, the most dependable people who get stuck in a box constructed of themselves. My GP of old told me if I could learn to accept and instead of trying to change who I was to be what others wanted, to change how I saw myself, so I could start looking up, and not always down, or in the twisted mirror I seemed to carry around with me.
So I did. I went to therapy for abuse, and I took medications, and I found an equilibrium which didn’t require that I be busy ALL the time. I was busy so I didn’t have to think and so I could stack up accomplishments which were never, ever going to be good enough for the voice inside my head.

Because the voice was me.

I have been working all day, morn, night and morn again and the day before to write a blog about discrimination within communities. Because there is nothing better and nothing worse than finding some group where you belong. It is great because during the honeymoon period you are connecting to so many people and you have so much in common. And then, over time, you see the cracks, how this person doesn’t talk to that person and how this group thinks they are ‘more’ of whatever than you are, and thus better. It was like with a lesbian group we joined. To be able to dance, or to go to dances in a group and defend each other from attacks, physical attacks was great. But then it turned out there were ‘real’ lesbians, which were the ones who knew they were lesbian from age 4 or 5 or as one declared, from age 2. And then the little comments from the butches about femmes, or lipstick lesbians. And those who had invisible disabilities were excluded and those who had mental illnesses were avoided in case people thought we were like ‘them’.

And so, the more we needed to be together the more things would split apart and then people would put on ‘the face’ and pretend they weren’t hurt or angry or excluded. And this is what I came out for? To lie? And I ended up feeling more isolated than before.
I go on, but not just pretending not to see. So not lying often means that writing what I see, or even when I talk about myself, that seems enough of a mirror for people to get bothered. And people say, “That isn’t me.” Really? Because it has always been me: the person deliberately not looking at myself as I work to make sure I was in the ‘right’ group, the subgroup which wasn’t thrown out, or excluded. And it made me insane. So I stopped. But the truth is that I am probably a bigot in some way, and so are you.

I find that some people, when they look into a mirror, and don’t like what they see, they avoid that place. I know all about that, as I didn’t have any mirrors in my apartment for over 15 years - that's not a metaphor (You see, I was fat, fat, fat, disgustingly fat!). Then there are those who smash the mirror and the person holding it. That is easy, because often it is easier to make people run away than to change. Because that is the third option – to change what you and I see. And what is the point of driving people away? To prove to yourself that you are unloveable? I know that feeling too. ‘No one can love me, and so I will show this people the REAL me, and they will leave.’

Well, except that I have always seen the real you. Did you think those distractions worked? No. And I’m still here.

And I’m still going to hold up mirrors. And I still get emails that emotionally hurt me every day. EVERY DAY. Because people don't like change. I don't like change. And yet I must change.

Change is terrible, change is wonderful, change is unavoidable.
My father told me a story: how at a party people kept saying to the piano player, “Oh, I’d give anything to be able to play like you.”

And the piano player said, “You can. You just practice eight hours a day.”

My father wanted me to understand that I needed to dedicate myself to perfection, to being ‘godly’, to being a perfect human being. Of course, the more I looked, the more I found I was not a perfect human being at all but full of flaws in action and emotion.

So I amended the story and I tell people the secret to playing like that: it is to get a piano lesson. If you want to play the piano, if you want to change, if you want to accept yourself, if you want to learn a language, if you want to do anything, the thing that stops it is….you. Tomorrow start with day one of playing the piano. And in a year, you will have played the piano for a year. And in five years, you will have played the piano for five years. All it takes is a day where you start.

So tomorrow I will have my post done. Because I work on it day by day. And because it is the things which are NOT said which are the very things that need to BE said. Like how there are no ‘muggles’ in the world of Harry Potter, and there are no ‘Neurotypicals’ in this world. Because if relationships have taught us anything it is that we all think differently and there is no way to know what another person feels or thinks without them letting us know. Six billion brains and no ‘typical’ among them. And that is tomorrow.

Oh, the self loathing, there is no one else with the potential you have, the contributions you have to share. If we could only put as much energy and focus into that as we do building our cages of the mind, we might feel that all so elusive and unique emotions: contentment, happiness.

Dreams: Erotic, Fantastic, Mundane, Frail

When the Wheelchair PT Janet was trying to explain a point about my disease and caregiving today while tuning the new wheelchair, she said, ‘I bet some days you wish you could walk away from it all.’

I look at her with a quizzical look.

“Not you honey,” she said, “Though I bet you wish you could just up and walk away from it all.”

She was talking about having to make the tough decisions every time my autonomic system fails in a new way, to call 911 and spend 30 minutes trying to get them NOT to accidentally kill me or just wait 30 minutes and see if I get worse.

I thought what life would be like if I wasn’t in a VIHA clinic, getting tuning done on my wheelchair, if this wasn’t part of my day. What if I didn’t have home care later? I could just walk across the lawn to the sea, could walk up the stream leading down to it.
But the truth is that I haven’t the slightest idea what I would do, except that I would have more time to figure out how to do it. Should I just go back to writing books or try to take over the world, or just play cards with catgirls (watch out they cheat). So, so, many choices.

I have tried to avoid that game of staying two steps in the past, playing ‘if only I wasn’t….” and instead figure out what to do NOW. When I became disabled, I let loose the voice inside that said, ‘…..if only you weren’t too scared.” And I dressed how I wanted to dress, which ranged from goth, to sex goddess waiting...and back again.

Linda said on this picture, “She isn’t a goth! She’s smiling.”
I said, “Exactly, she a true goth, she knows who she is and what she wants.” I remembered, “Do you remember when I started wearing goth armwarmers, gloves, corsets and suddenly they went from something ‘ohhh’ and forbidden and maybe kinky and ‘what type of people wore them’ to ‘what type of corset today, the lace and velvet or the spider web?’” She did remember and smiled. “And then I convinced you to get a corset and we all got dressed in boots and arm warmers and went to the cemetery. And suddenly the corsets were what everyone wore.” It was a good memory.

Now days, I wear the corsets less, because I go out less, but I still try to get one out once a week, but the stockings and mary janes, the kinky books and the 4 inch heels are languishing, waiting. I talked to Linda about sex fantasies today (mine) because I want to know what turns me on. And we talked about stories we had read in the Manga Object of Desire and the stories in it and found that this one story about a woman who works as a maid in a maid cafe was the one which turned me on. Was it because I wanted to dress as a maid? No, but I did want to have a nice matching set of ‘sex undies’: the tap pants and bra or the panty and bra set, the negligee and ribbons in my hair the same colour. So, that is in my shopping future, something else to look forward to I think!

Okay, back to my sexual fantasy and arousal. We figured that this girl worked in a maid café and then at a party she asked if she could be a maid as that would be fun, to be a ‘professional’ maid. Other people looked down on her, and her partner came to her rescue. And I think that is what I admired, that she knew what she was, she knew that the clothes were just that, clothes and didn’t define her, but were a part of her expressing herself, and that she did what no one else did at that party, lived out one of her dreams. And the part that makes it fuzzy and glow inside is that she had a partner who watched out for her: who made sure that others did not make her feel bad about her dreams; who was aware of all the things she did and was there when she needed him/her (him in this case). That’s erotic to me.

I think with the coming of spring, this is very much the time to cultivate dreams. Some people like to garden, and so this is a favorite season coming up. They say that ‘love’ is what makes plants grow. Since I live in a building opposite to the sun, I will say that I tried love, but I think that having the sun and some water probably helps too! But I can see the attraction; planning out the garden then enjoying it, or like we did, growing a window box of parsley and other herbs and then going to cut some fresh green onions, parsley and other herbs to add to the Mexican Chicken. Spring is a time when every bulb and every flower is making plans (usually simple plans like, “Open and get sun, and spread seeds” – but plans all the same). And we enjoy seeing the beauty of their plans in action.

I guess it seems that I have left the ideas of loneliness, isolation behind. But life isn’t simple so why should I be? I have spent the hours staring into the darkness, aching. Desires. Yes, I have the aching to find others like me, to stop feeling so alone. To spend days not treated like a thing. There is the dark side of me, and the light side and they exist together. I was giving the tech sass and he couldn't get why I needed such a high end low mobility chair. Then not long later, after I had a grand mal, he worked around me, shocked, silent, uncomfortable, as I tried to watch and talk with him using my good eye. I was still the same person, the same mind, sort of, in the same body.

Tonight, going for my nap, I had another seizure and started crying, because the pain and exhaustion of it all. Yeah, it was just one of those long, long days. And now I had just ‘one more’ seizure, like each one wasn’t a special hell. Linda gave me Miko to hold and touched me. The touching me made me cry more than before, because it was what I ached for so long, within the seizure. I know Linda or others hold me, or speak to me while I am seizing: but they are locked outside and I am in.

Many people (not the readers here I think) see me that way, a ‘poor thing’ locked, chained to a body that is dying on her. And what point is there in explaining that I am who I am, that I have this FABULOUS dress sense due to disability. That my disability has shaped my humor, my viewpoint, my caring and my actions. I am not the prisoner, because I act, it is them.

Before, I lived my dreams, I got a Ph.D. so I could spend my time with my great love: books. Books were my morning, my evening, my rising, and my fall of the day. One time, running out of air, dying, I dreamed I was about to be taken to the LIBRARY where I would meet Borges, and Calvino and all the great authors, who worked daily on new works in the library, and the books were sold in the bookshop.

That changed, those dreams. Well books haven’t, they are still the great mirror of the soul. They are our entertainment, our challenge, and the way we change ourselves without leaving the chair. Books are still touches of greatness. But they are currently closed to me.

In the same way people believe that EFM is now gone, or is here only in shadows or that is who they want. I have a vocation, and I serve that vocation. And as long as there are those who need me, I serve. Or to put it in another way, I will never have the physical ability that I once had, but on the other hand, I now have other ways to ensure that those who need help, are heard, are seen, are remembered. Sometimes, my words, sometimes my presence but understand, who I am has not changed. It is one of the reasons I am going for my BC wheelchair racing rating. It is one of the reasons that I say, “Okay, you’ve told me it is impossible four time, now are you going to take my money so I can go do it, or not?” Every time I send postcards, I am EFM. Every time, I face another specialist who tells me I better hurry up as they are busy after making me wait 50 minutes to see them, I am about to go EFM.

The thing about me, is that while I change, I grow, I like to think that becoming disabled has helped me to grow, in many ways, I do not change. I have a code, I live by that code. And part of that is that when there are those in need, I stay, until every last one is taken care of. If there are five spots and six people, I stay. And just being that way drives some people wild. They try to bully you, they try to belittle you, they attack; I wish I knew why, but the law remains, and I remain, and if they are a bully to others, they shall not pass. Linda says she has seen this look on my face more than few times (and since becoming disabled).

So…..spring is coming, and there is a future ahead of all of us. ALL OF US. I have a future, I have choices. I almost stopped the postcard project after several bad weeks. But I didn’t, because I know from my own life the joy or anticipate that post can bring. I know that anticipation itself is a gift. That someone sending post that isn’t just formulas is a gift. That someone thinking about YOU, and sending gifts, however small, is something special and something to treasure. I do.

We all have this future and we have to decide what we are going to do with it. Or who we are going to live it for. For you? For others? For both, I hope. That this, not new years is when I make my plans, my dreams, my desires of what will be done, because I can hear the wind, the sound of grass, see the buds of plants. I look out and know that I better get something going and catch up to nature, because change is coming whether we want it or not…just as it does every year.

I'm ill. I keep on as I have and I die. So what now?

Okay, let me try again. I am sick. See, I’ve never had a problem with accepting that I have limitations. I have had limitations all my life and my first thought in both Wheelchair Boxing and Badminton was “Okay, this is a BIT more to overcome, but think Beth, how are you going to wipe the floor with them?”

I wanted a PLAN, ideas on how to train MY way, do things MY way. And so I had some conditions, fine, I would research and then figure it out MY way. So I have never said I didn’t have conditions, like Raynaud’s. In Seattle at REI, after this woman went on about her life is “DIFFERENT” because she has this CONDITION called, and I finished the sentence, “Raynauds.” And I pulled off my gloves which got a “OH MY GOD!” Hey, what, they don’t make purple jellyfish looking hands where you come from?

She then told me, in all seriousness that I have to be ‘CAREFUL’ because I could get frostbite. I pointed to my finger which has the worst circulation and said, “You mean like this here.” And she just sort of stared at the finger and me. “It’s frostbite, that white bit, turning grey, that’s frostbite.”

She was doing the “But, but,” and I was like, I know and that is why I wear thick gloves INSIDE your store. I went out today for an errand and had frostbite for an hour, ow. She was also the one who after another “OMG!” when I asked if her feet or hands turned black, leaned over and asked, “Are you….wheelchair bound?” Um, no lady, this is my titanium leisure chair.

Doctors have no problem with the fact that I am very, very ill with many diseases. I think there is a file with about 8 to 12 diseases listed on there. They don’t think I am making things up. The problem is that I am a ‘complicated’ case which means they would have to take this thing called ‘responsibility’ and so, “Nope, not my inch!” No, they don’t deny I am terminal, not even the top neurologist would commit to saying I would be alive in a couple years. I have an unknown autoimmune disease doing things which are sort of strange and ideopathic, but which produces autonomic failure. There are only four known direct causes of autonomic failure (there are indirect causes like, when your entire lungs fill with cancer, it causes autonomic failure of your heart due to overloading the system). Of the four, I don’t have one called POTS, so that eliminated leaves the fast terminal one, the SUPER fast terminal disease or the delayed terminal disease. I also have other autoimmune disease and other idiopathic (doctor speak for “What the FUCK? I have no idea!”) conditions/disease presentations which could cause my death.

So I am dying. But to me, being told that was like playing able bodied people tennis in a wheelchair and winning; if I pull off living (winning!) then I am kick ASS! So while I do have a problem being terminal, at least I can be busy: plotting my decline, coming up with plans, trying different ideas. Only now, I am tested, there are blood tests ordered but no plan for treatment, just making sure different doctors don’t get sued. I can’t get a specialist or a GP to prescribe me seizure medication so they give it to me at a walk in clinic, pain meds over the phone. Between my life and “cover thy ass” we know what comes first. Or as one medical person said, “Exactly how HIGH does the stack of dead bodies outside of Victoria Island Health Authority (VIHA) have to get before they DO something?” Currently, I can’t hire my own care workers because the grant, CISL, hasn’t been raised for inflation or anything else in over a decade. 19 year olds can earn the same per hour sitting in the six week course at Beacon which will let them catheterize me, decide the use of life and death medication and use my feeding tube; once they START, I can only pay 55% of what they earn at Beacon, whether they are good or bad. VIHA, after a promise to raise CISL and nine months of negotiation now says they haven’t had enough ‘complaints’ to make them believe the pay was too low. Let’s see, trained medical personnel on CISL get $11, people serving donuts in this town get $14.55, heath AND dental. I guess that disabled woman who smuggled an illegal alien to SLEEP in her closet to try and get home care under the CISL grand budget wasn’t enough PROOF (real case!).

Except now I am ill, so ill, I can't be busy anymore with planning on beating dying. Linda over on her blog, A Girl's Gotta Fly, has just posted about the oxygen I am on, thanks to you. And other things (I can't read her blog till she gives me permission in case it is medical and stuff, but YOU can!) about our life. Please read and comment (after reading ME of course!), as it is hard for her to write these things, hard for her to have to open up, and she needs encouragement too.

So here we are, take two: I am sick. I may say I feel bad today, or that I have this disease or that I am dying but I don’t admit that I am sick. I will always be sick. I have worked the last three hours in extreme pain with triple my pain and heart medication. That’s because I went out today after my ‘fun with electricity’ yesterday. I have crashed to earth. "Mission Control: This is Elizabeth McClung and I am going down." There is no plan, I almost died just over a week ago, I couldn’t sit up unassisted yesterday and I don’t know if I am going to the hospital tonight. I am sick. And tomorrow I will be sick, and the next day, and the next. There is no beating this. I am living in overtime. And I don’t have a game plan.

Now on to part II: I need help. I am fragile: I had two breakdowns yesterday. I can’t just throw myself into something because….I am sick. It is snowing or raining outside, I get frostbite in a few minutes and I am sick. Currently I am back to believing that I am non-human.

I want to be a great friend, I want to visit every blog, I want to know about every life, and I want to empathize with you, listen to you, solve your problems, but I CAN’T. And I don’t know how to do that and not be so BAD, that it makes me want to claw my face. I need help, and I need caring, and I need to get better IN the head, so that I can regulate my body and live longer. Because I am going to Hawaii in April/May, I am going to start trying to sell stuff to do that and anyone who wants to come is invited (see, that is my ‘As long as I have a plan, and never sit still, the pain is just ‘training pain’ coming back to try and take over’).

The problem about asking for help, is that it is a lot like having a high school crush, you like this girl, you moon about forever, thinking you are sort of subtle while really everyone knows (or all the girls know, the guys are too busy hitting each over the head to figure out why girl X just burst into tears). The problem is that there is that moment where you have to say it, “I like you!” And then see what happens. And my problem is that I am saying, “I need help” at a time when people are depressed because they are post-Xmas blues, they are depressed because of recession or reality TV. I don’t know why. And I am not asking to be SAVED, to have someone rescue me. I am saying, I am out here in the wilderness, and I don’t know what to do. Normally, I would take some time off and over the next nine months or year come back to full strength. I don’t have that. So instead of keeping between me and my therapist, because I don't have the TIME, I AM dying, so I posted about it, spewed it all over the net and now I am saying, “Yeah, I am kind of screwed up, can you help?” Please, PLEASE, don’t do what certain parental figures often do and tell me what I should do, or should have done, or if I had done I wouldn’t be in this mess. AHHHH!

So, lets say that she takes the gift of chocolate, then what? I don’t know that part either (If no one does then I guess I pretty screwed!). Cheryl is pretty busy taking care of Linda and dealing with the medicos. And when I, the avenging angel of death, am having hissy fits and meltdowns every six hours, well, that’s not pretty, and that’s not something I want to last (and with my fragile condition, it won't, I'll be in the hospital by weeks' end). Now see, in my OLD mode of operating, I would take my life, put it on the line, call out death and have a duel, because that is the way I am. Someone said to me, about how impressed they were at what I did but to risk my LIFE? I was sort of puzzled, because isn’t that the point? Yes, if I go to Hawaii, I risk my life. Going to Seattle risked my life. We went to Tim Horton’s and had a little incident and Linda had to use her ‘command’ voice to stop people from getting an ambulance. If I want to LIVE, I need to risk my life.

So what does this new life look like? I think I am supposed to rest and then find out if that makes me feel better. I am out here, no net, no back up, but also no clue. See the problem is that here are a few things I don’t have: desire (I desire very little though I found a new manga and put it on my wish list – it won a REALLY big award), lust, anticipation, looking ahead, joy, innocence, peace, contentment, rest, relaxation. So how do I get those? I think Linda has this idea that I will return to my childhood when I had a dog and spend time in the flowers all full of joy and innocence. And while I would like that, when you have to sleep twice a day and have the nightmares I do, it is hard to wake up and have that innocence. Or with the chest pain, to have this idea of ‘rest’ that doesn’t include the fear of being in hospital with a LOT of tubes coming out of me. I proposed MY idea of what I should do, which is to train minions like crows (they follow me too!) to like go and attack people. While I look on from my tower. Linda says this is disturbed. I tell her that I AM disturbed so that makes it okay. She says no.

I was to have the exuberance I used to have, but I can’t because everything I do hurts, everything I do damages me. I want to be here, on a dog sled, fulfilling one of my life dreams, doing the Alaska 1000 mile dogsled race (won by a woman for YEARS! YAH!). That dream isn’t going to happen now but I want that look on my face again, the whole, “Oh yeah, I’m going to get them!” I don’t want to live off memories which are quickly disappearing (I remember none of the 10K’s or most activities of this year, even if I still have unhealed wounds from them), but some new thing to be excited about. But I can’t right now, because I am broken. It is just that which I am trying to fix. So I look like this instead, looking ahead, fearful, uncertain, sad, wondering if all good things are behind me.

I want to be the person who is out finding joy in falling stars, who has true innocence renewed. But I need help. I do need a plan, a program. Right now all I have is that I am going to try out doing some small shopping online, trying to find something on Amazon.com that isn’t for the Postcard Project, that isn’t a gift for this person or that person, but something just for ME. Can I even buy something or use a gift card just for me? I don’t know, but if I can find that feeling, that desire, that joy, even anticipation, then maybe I can come back, back to normal. Which isn’t perfect, it is about having things go wrong, I mean, I do have a lot of diseases, and there will be little home problems (I wish I had this one!), but to be stable mentally. Sure, I might be a bit off in the head or prone to OCD, or overly emotional due to the autoimmune attacking parts of my brain, and due to seizure activity, but I will think that I am part of the human race.

I went out today because I made a promise and I keep my promises (if I can only remember), to get a certain comic for a reader here, Yukataonastick. So I was in a comic book store and I talked. Linda said I am the greatest liar when I pretend, for 20 minutes that I am perfectly fine, then pay for it, for the next six hours or more. Well, I was doing fine and talking to a girl who I had an inkling might be on our ‘team’ as it were, when she talked about playing rugby in high school and how great that was as when you all fell down she got to touch lots of breasts and no one suspected a thing. Dudes, take note, that kind of statement is a sign you are with or are chatting up a lesbian or bisexual, NOT that you have similar interests (though you do!). Well, after some more talk and getting the comics, she says suddenly to me, “Your tit is showing!” Now, I was wearing a new top from Torrid or Hot Topic and I had put the jacket half down to give my breasts some ample chance to show off but wha? I looked down, no, the top is still covering my bra which is covering my breasts. This girl leans over, as I wonder if this is my discovery of a third nipple and will it lactate, and adjusts…..my necklace. Apparently the part where I attach it had come around to the front, so she adjusted the necklace for me. I asked her if that was a technical jeweler term and she said it was, which means it WASN’T the most blatant lesbian come-on line of all time. But then again, she did lean over and adjust the necklace. I have to admit, worrying where my clasp is on my necklace when I have chunks of hair missing on my head and look like I wheeled in from a nuclear disaster tends to be low on my list.

So, let’s review okay? This is who I see myself as. Yeah, things get to the worst, and I will take you on. Yes, I am kick ass. I don't care about the odds, I am the one who is going to meet you and take you on because all you can do is give me pain and that heals, in fact, I’ve been hurt so often I heal abnormally quick. Or I did….. But the reality is that I am not a person who can take on life that way, or problems, and so I am this person, not sure which way to go, a little scared, in a place which seems a lot more confusing. I would like to find a way to figure out how to restart. Which pain is making difficult, so if you have like some MORPHINE and don’t mind breaking rules that might get you in jail, please send it to me (if it crosses state lines it is a FEDERAL CRIME – big time!). I want to look for a while like this, resting, calm, caring but also willing to be cared for(yes, I get the fox ears too, and the cute pet, why not!).

How does someone who is 6’4” and usually weighs 200 lbs or more (that’s muscle buddy!) and picks up 100 lbs easily go to being a person who is well, weak. I’m not girly, but I am weak, I am model thin, I am model light, I CAN be carried around, including my chair by a guy or two. I can be carried back into my chair once I fall out by one person. I am not used to that. That’s what I DO, not what happens to me. How do I ask for help and emotional support, and help in keeping myself believing I am human when I am the one who is used to helping others, BECAUSE I have ALWAYS known I am not human, that I live only to save those from ever becoming like me. I want to be there, because how can I ever want anyone to be me? And I have to let that go a little and find peace. How? Who will help me?

And then, as I find a new way, a new path, to surviving each day as someone who IS ill, who is never going to get better for the most part, who is always going to get a little bit worse. But that doesn’t mean I can’t find my own strength, or that I can learn to lean on the strength of others. I just need to let go of doing it all myself. I hope, I can find the peace, the anticipation, the excitement, the joy inside me, and use NOT my strength, to make myself ill proving I CAN do X or Y, but to accept the strength of those waiting to join me (like the picture). So is that it, is EFM dead? No. EFM has learned there is more than one strategy to fencing, you don’t ALWAYS have to charge! Sometimes, you wait until they come to you, let them do the heavy lifting before you act. Am I going to risk my life to LIVE? Hell yes! Am I going to risk my life just because it is possible? Yeah, I am probably going to do that too. And sometimes, I might go and do things that aren’t particularly smart. Just this time, I have to realize, if I don’t learn the R word (relax, rest, etc), then I will push myself right into a crematorium. Yes, do the thing and then rest as long as is needed to get up, with little advances and help from others, and start again. Because life IS the only game in town and no way I am getting sent off permanently because I am too thick to change. I just need some help.

Falling: the opportunity, the choice

Falling isn’t the opportunity, nor the choice, falling often isn’t something you only know you are involved in until you are already there. For me there is falling down physically, falling out of bed, falling while trying to transfer, falling while rolling in my wheelchair outside, falling while doing sports in the wheelchair and falling during and after seizures. Plus I get down, depressed, in a funk. Often falling can be psychological, mental and physical. In many cases, when I have diminished capacity, I sleep better, because I only understand the most limited aspects of what is going around me. People say I am safe, so I believe them. People tell me when to eat, or drink. It is not that bad a life, honestly, when one merely needs to meow if you can’t speak and someone brings something nice to eat. And if they bring something not nice, just turn your face away and keep meowing (No, I’m not joking, I’ve done this. It isn’t a conscious thing, it is just a form of diminished mental capacity).

Then there are the seizures, and the mini strokes. Of which lately there have been many every day. Indeed, so many that it if continues, Cheryl and I are concerned that I will die; my concern from simply hemorrhaging in the brain. Cheryl is more pragmatic: I have a tendency in some seizures to eat my tongue and/or lip and if that is followed by a Grand Mal then the blood will choke me to death. I had three Grand Mal’s during almost an continuous hour of seizures on Saturday night. I don’t know what they look like but the descriptions aren’t comforting.

What I know is this; how would you like if someone picked you up out of your chair, spun around and then released you so you sailed through the air, smashing through things and into the wall. Then they picked you up and THREW you full force at the ground, and did it again, and again, and again, and again, and again. Know how much time that is? About 90 seconds or so: about half of a typical Grand Mal. Or they could slam your head against something for say, three or four minutes, while kicking your ribs. That’s getting to ONE Grand Mal. You are terrified, you are in pain. Now, you can’t breathe, in fact your saliva and maybe some blood is going into your lungs and all you know is that you are choking. There is a froth around your mouth and someone picks you and sits you up and you half vomit/half gag out all the liquid you can. Then you have another seizure. Someone checks to see if you have blowm a pupil, if there is blood spreading in your brain (blood is like acid to brain cells, it eats them and kills them FOREVER). But then high amounts of electricity known as a seizure are BURNING a scar into your brain. It is a scar so strong that they often have to CUT OUT the section of brain where it is to stop the seizures. But you don’t care about that because someone is slamming you against the ground and your neck is spained, and your ribs are sprained, and your wrist is sprained, and your muscles against your spine are ripped, and the back of your head is bruised. And blood is coming out of your nose, or dripping down the back of your throat so you keep spitting it out. And you still have 25 more minutes to go. That’s is what an hour of seizures are like (it kinda sucks!).

So lying there, helpless, I (or anyone) has limited choices but the people around have choices too. First off is the choice to make you feel safe. You don’t need to have a seizure to want or need this (close your eyes, a bit of heterosexuality coming up!). You can have a hard day, or just feel the need to be loved, to be in a space where someone is watching over you. And that is a choice for both people, an opportunity, to trust, to care, to be there so someone you know has a place where they can feel secure. I am lucky to have people who do this for me, otherwise I would just like there, alone. Well not exactly like this, because if THIS was me I would be lying there and thinking, “Hot damn! And hour of thrashing, and loss of memory, fine, I HAVE C-CUPS, NO MAKE THAT D-CUP! Woo Hoo, when I can move I am going to go flaunt this all over town! Haha, no one will be looking at my face for WEEKS! Dude, I’m up here, hehe! Oh, OW!!!!” Um, sorry, took a little fantasy jaunt.

But the truth is that all around us, in society people are falling. People fall. They are falling emotionally, they are falling in confidence, they are falling literally. Yes, sometimes when I fall, people come to help, sometimes, after watching me struggle for over a minute, someone is shamed into helping and sometimes I fallen and people have walked away (“Oh wheelchair, that might be complicated”), certainly when a seizure is involved. Then it is 'Run away, it is someone else’s problem.' No, actually, it is YOUR opportunity. When I was harassed in my workplace, no one stood up for me; when Linda goes in to be demeaned, in her workplace, do her coworkers stand up and knock on the door and say, “I think this is inappropriate.” Or do they look down, like people who are uncomfortable hearing a lesbian joke but just say nothing. Will they watch the person who is falling walk by, their shoulders slumped, trying not to cry, and worry about their own job, or be thankful it isn’t them, or pretend they saw nothing. There are ALWAYS going to be people in the crowd, indeed a majority of people in the crowd who will do nothing.

And SO WHAT? I am not talking to a “crowd” I am talking to individuals. Crowds down read blogs, people do. Individuals who today, or tomorrow, or sometime soon will have a loved one, a friend, a partner, an associate, a stranger who is or has fallen.

So.....what will you do?

This is an opportunity, because if you were a kid like most kids (including me!); I wanted to be a hero. I wanted to save people like on TV. I wanted to rescue people from burning buildings, or find people lost in the forest. And here I meet Cheryl who has done just that and who IS DOING THAT....with me. And yet, in so many ways, I would almost weekly come across someone who was falling or had fallen. A older woman obviously on a limited income struggling to carry the bulk food back, going a few yards at a time. “Please, can I help you.” I don’t know how many times I have carried groceries even now in a wheelchair, helped out. I remember this one woman because she was so grateful (we lived in the UK), “I know you aren’t from around here.”

I said, “Is it my Canadian accent.”

She said, “It is because you stopped and helped.”

What will you do?

I hope that when the time comes, you are a person who can be leaned on. I hope that you are the hero who steps up, regardless of age, ethnicity, orientation or gender. I hope you are MY hero, the woman who cradled my head after I had been thrown from my chair. A few minutes of her life, yet a memory in me that stays when others disappear.

But what if you aren't the hero, but the one falling. Well, for me, lying there, fallen, there are options. Sometimes I do need to rest. In fact this is a bit of a problem with me (the resting) since that night I tried with my single moving digit, a pinky finger, which I had wrapped around a chair leg, to try and pull my entire body to the study, when actually resting might have been better. I could have choosen to let others help me, and sometimes that is a choice a gift that NEEDS to be given. Sometimes trying so hard just starts another seizure.

Accept it, McClung, you are not superwoman, you are not wonder woman! I did not manage to get to the study dragging myself with one pinky finger. I did however manage to move my body a bit so I could then curl my pinky around Linda’s shoelaces to untie them in hopes she would take her shoes off. Because then I could curl my finger around HER foot and SHE could drag me to the study (see, there WAS a plan!). What I am saying is that there is a balance; I could easily say, “Hey, I’ve had seizures, I’m really sick, that’s it.” And spend the rest of the time lying watching TV or having a rub down or whatever would happen if I actually rested (I'm guessing, I don't know what would happen if I rested because so far, I've never taken that option).

But resting is one way, or I could get myself put back in the chair, finish my long blog, which I spent all day doing and then continue for a few hours matching and helping stamp postcards. I didn’t get a lot of postcards finished this weekend, and what I did was entirely due to the help of Cheryl. I did however accomplish another project. And that was due to the help of Cheryl and Linda (who said, “I never believed, even though I was helping that we could do it.”).

Of course, that had costs! Being there for Linda had costs, and I don’t regret those. I have had seizures today and times I cannot speak (including now, and I started this blog with my eyepatch on), and today I have been in bed more than usual. I have not been outside in a very long time. I might look a bit like this. Bandaged, exhausted, on oxygen from an hour after waking up until bed (okay, Linda doesn’t actually let me take the knife to bed anymore!). But I did that so that I could be here for Linda when Linda needs me. Today, she didn’t, or not so much, I needed her more today.

But I wrote that post, one about my fears; I actually have nightmares and altered states where I believe I have been put in a home. I exposed myself and my concerns on the costs both financial and physical of me being a burden.

SharonMV in her comment tody pointed out that my being there, or rather if I was NOT there, if my presence was not there trying to drag myself to the study with one finger while Cheryl watched, then THAT would be a burden. That not blogging, that not making jokes, that not being ME, would burden a lot of people. I had not thought about that until now.

Because of that post, which was just for me about my fears about the last remembered while and the time before that was seen as an opportunity for many people. I don't know, but from Linda it seems that she was contacted and I was contacted by people saying, "Eat!" That they said, "Lean on us, for a bit." That they were heroes. They were determined not to let someone fall; be it Linda OR me. While for me, SharonMV reminded me that greatness is not only in doing great deeds but sometimes in hanging on, in being there, in not withdrawing, in articulating fears so that others can understand the disability experience. That greatness is in reaching out to others, in forms of cards, or postcards, or stickers or emails or in some cases a medical kit of Hello Kitty Goth band-aids.

In life, fathers and mothers strive and struggle to continue to be there financial, phsyically and emotionally for their children. Partners offer safe moments and havens for their loved one; supporting each other through life. It is not the act of jumping from a burning building that is the act of a hero, but the act of putting out a hand. Of saying, come, be with us, we want to be with you, we’ll share our food with you. Of making choices out of the opportunities that come our way. Of staying when things get tough.

One thing that being disabled and being in a wheelchair has taught me is that falling is inevitable. Hitting hard is inevitable. Being down, being depressed, being angry, being frustrated, having to be in bed ANOTHER day is inevitable. But how I choose to view those falls, and myself is NOT inevitable. And how the people around me react is not inevitable. And thank you for that. Thank you for each person who has over the last (insert time period longer than a few days - month/s?) has stepped up to stop ANYONE, not just me, indeed ANYONE from falling...on that day (we can't always control everything, we can stop someone falling...that day. Or we can be there to comfort them after the fall...that day.)

While it looks like I will NOT be doing the 8K this month, unless it is this weekend and I can convince Linda to let me do “just one more stupid thing!” But you know what, I will take up boxing again. In these moments where the pain killers (actually doubling them is helping me a bit!) make breathing only slightly ongoingly painful I know who I am and what I do.

I will box again. I will play badminton. I will go rock climbing (even though I haven’t for over a year and a half). I will find a NEW sport that no one thought anyone in a wheelchair could do. I will focus my will and I will return, no not to the health I had before, but the belief that what Elizabeth F. McClung wishes to do, will be done, no matter HOW many times I fall, or cry before I succeed. I am a living conscious choice. Yes, I have diminished brain capacity (we can talk about that another day) and diminished strength, the inability to heal, and some other minor/major issues. But I do not fear falling, I fear the time I stop making that choice to push BEYOND the fall.