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.
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