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Category Archives: a different kind of beast

Maybe today is better suited to twitter

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You know. The less said the better. I feel the dark descend down on me. It fell heavily and took me surprise. Thing is, I really shouldn’t be surprised. I don’t know how it snuck up on me. I’m vigilant. Usually I can dodge it with some “glass half full” mantras.

It’s grey and raining outside so that doesn’t help. It’s oppressive, but still I hobbled out for a bit of a stroll as the rain beat down on me. Maybe that was the wrong thing to do. Still I want to be somewhere else. Anywhere but here. I’m having trouble even finding the words to express. I’ve fallen down a very deep dark hole and right now I’m just standing here transfixed, unable to move and the hole is filling up with water. 

Here we go. I agonize, should I post this and let people in or do I add it to the 20 or so posts gathering dust in my unpublished folder.  I’m breathing deeply. In….out….in….out….in….out. Ah what the hell. You only live once right? 

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november oh-eight

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it’s november now and my brother’s birthday now behind me but i was going to write this then. it was the way i felt. i was falling down a rabbit hole, caught up in a vortex that completely eclipsed me. it was honest it was how i felt, but then i censored myself and began editing myself, paralyzing myself in the process. i do this a lot. so much so it’s become automatic but doing that feels inauthentic on the path i am trying to follow, so i’ll post it now even though i’ve had to blow the dust off of it. 

i started in a burst of emotion, with tears in my eyes and then i let it sit….this is my m.o. what spurred this frenzy of brief writing was a Mary J. Blige song i heard on Songza and I don’t know why but it reminded me of him. actually, i know why. it reminded me of the time i perused his music library in the CD stand in the living room, a step or two down from the kitchen. running my fingers up and down i find the rack filled with nothing but R&B, lots of divas, removed from my musical taste. at the time i was full on into electronica or something and only dabbled in r&b. this is practically ancient history, how long has it been since he had lived in that house 10 years? 12? memories like this are cemented in my psyche, but buried so deep i didn’t even realize they were there. that’s the way it is with me and music, as i’m sure it is for a lot of people. music stirs us, ignites and inspires us.

now, i write this in the aftermath of what happened in ottawa, two days since his birthday passed. i still feel the same way but it doesn’t prick at me quite so much. i read on my timeline that one of my FB friends knew Nathan Cirillo and i begin to think of the six degrees of separation. i cried when i heard about it. i cried when i watched kevin vickers stoically make his way into the house. i cried again and again. i couldn’t stop. but then i suppose i’ll cry over anything. i know i am overly sentimental. i can’t say the events of yesterday distracted me from the writing of this, i could use brewing coffee, searching for words or gazing out of the window as excuses but i also know that it’s just the way i am.

i know i haven’t dealt. i know i am feeling sorry for myself. it’s coming on 4 years since he died and i feel the loss more keenly. the further away i get from it the closer i get. every time i hear about a sudden death that no one can figure out i am shot right through with a reminder of him. i believe i fucked up. i am the big sister. i should have known better, and i did know better. there’s that thing that stops me every time, stops me from reaching out. my regret is tinged with anger at myself and as much as everyone says not to feel this way, i feel it. it stings me every time i realize that we won’t have our sessions over a good strong coffee.  the first time i heard him order that grande americano 3/4 full on one of his visits to toronto. it’s my drink now. that sardonic smile of his. how different are and how much the same. we rose like phoenixes out of our of shared experience in such different ways. he shot into the stratosphere, and I crumpled into myself.  so much so that i couldn’t seem to establish that closeness i so longed for with him and now long for with the girls he’s left behind….

i’m doing it again. agonizing over whether to post or not. i’m mixing up the voices. i know it is breaking a rule of writing, so i vacillate and  go back and forth leaving some of it in one, some of it in the other. ok, i fixed it all, i think. i am teased the hell out of it and it’s driving me crazy. the kink in my shoulder is telling me to just get on with it already, like tout de suite. it’s time to stand up and walk around, wash my face and go get some fresh air.

groove is in the heart and so are holes, maybe….

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on an echocardiogram I had awhile back it showed i had a hole in my heart. my doctor didn’t say how big or how small, just that it was there. One doctor called it a shunt. The doctor that performed the trans esophageal echocardiogram threw around PFO. I had no idea what it meant, but knew I could find out later. I have been dealing with some measure of information overload. It’s hard enough for me to keep the names of my medications straight. from what I understand a PFO, not necessarily mine, looks something like this.

heart w-pfo 11626

In the  of gathering more information and to investigate further I had been referred to a cardiologist to see what the deal was with this hole. He did a cursory exam, asked me about my history, which always makes me wonder because I would have imagined he might have something besides one thin piece of paper with my name on it. Then he did his own quickie echo cardiogram.

he decided a little further investigation was in order so he sent me for the trans esophageal echo cardiogram. I was given a 2 page handout at the office, reinforced by the same mailed to my home. It illustrated with a crude line drawn picture, photocopied within an inch of its life which made it difficult to decipher. But maybe that’s me, spatial relations have never been my strong suit. (This is one of those occasions when I wonder briefly why these the originals aren’t scanned and printed off as necessary a nice clean copy for the patient.) It seemed like no BFD. Spray the back of my throat with a local and then some sedative, which I was a bit sketchy on, insert a a tube down my throat and take a look around. I did imagine the procedure not unlike my wisdom tooth extraction, an uncomplicated affair. I certainly didn’t envision having to put on a gown, be assigned a bed on the cardiac ward and have a nurse poking around to get an IV inserted.

My blood pressure is high, like it usually is, but even higher than that. the nurse, yvonne, tells me that even though i don’t feel nervous i probably am and that is what is jacking up the numbers. another nurse, april, and another nurse go through my history again. i am reminded how little a lot of people know about TN. Although completely unrelated I did have to do a lot of explaining about it. a lot of people think it is a sort of migraine. I also have that moment when I wonder why I need to recite my history, which becomes more difficult with each corner I turn. I mean, aren’t all these records electronically gathered and kept?

i am moved into the room where the procedure will be performed and fitted with echo cardiogram leads. i had left my bra on and my nurse performed the most amazing feat of untangling it and getting it off once i had undone it. oops. we had a good laugh over that.  more leads were stuck on me and they prepared me for the actual test. i contemplate the blue walls, which could use a coat of paint and wonder if they’ve been painted that colour for the supposed calming effect. whatever the reason it is far better than the usual institutional green.

after i am all hooked up to the machines i wait for it all to begin. the fluorescent lights are harsh and too bright. i let my eyes wander the room and take in what i can see from my prone perspective. there’s several leaflets tacked on a notice board board, one with the two giant words “heart attack” leaps out at me. i’m not worried about that but I try to recall the symptoms of a heart attack in women. just because.

the doctor comes in with an assistant he doesn’t introduce and tells me again about the procedure. time to go. first they will spray the back of my throat with an anaesthetic to relax my throat. he warns me it tastes terrible and he’s not lying. it does. it’s awful. on the first pass the depressor breaks. apparently i’ve got a very strong tongue. a couple more sprays and then….well…then the anaesthesia dribbling into my arm takes effect and blank goes my brain. i’m awake but sedated. still i remember almost nothing. i remember him asking me to cough a couple of times. the verdict is that they can’t get air bubbles to form and do their thing so…. and then the tube sliding out and voila. end of test. now the only thing to do is wait for the result.

Don’t tell people how you really feel, they don’t want to know

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I was going to throw a post down in the limited time that I usually have that spoke to what is going on with me lately. It has amounted to my world thrown upside down. I’m not sure about that approach anymore. I’m sure anyone whose read the few posts I’ve written lately has a general idea and maybe that is enough.

What brought this on is a segment I watched on “Marilyn” yesterday. One of the guests was Robert Herjavec and he spoke of how he approached life and one of the things he said was that when someone asks you how you are you don’t say how you are truly, because no one wants to know. Following that, I suppose describing what is going on with my situation might be seen as beleagureing the fact. After this maybe I’ll  try to make things up or pull stuff out of my imagination using the inspiration cues from WordPress; see how that goes. If I can’t manage it, I’ll go back to what I know best, my limited life and what goes on in it. Perhaps there’ll be some drama when I attempt a walk to the grocery store on a no so great day.

Day before yesterday was one of those.  I probably shouldn’t have, but I had things to do. The energy it takes to walk a few blocks baffles me, after all I am one of those people who is used to walking with purpose, taking long strides to get to my destination. All bets are off now. The ground gallops and heaves and my whole body tenses in response, so maybe I’m working everything including my core. I don’t know. I just know that something in my brain is telling me to do this otherwise I might fall down, which strikes me as slightly ridiculous. I feel comfortable if I can run my fingers along something for reference, and sometimes when I let go it feels like a bit like leaping off a building into an abyss. Home is sanctuary, home is manageable. I can crawl if need be, and I’ve done it.

I asked my neurologist about all this why there are good days and bad ones and he said that I’ve done better than most considering all that’s gone one in my brain; there’s still bits of the offender left in my head doing whatever, scarring from knives and radiation and such. I was struck by the math when I left. It has been 24 years since this first began. I was surprised by what he said, maybe because he’s not exactly forthcoming. I thought I was just going to be soldiering on, status quo, simply managing my situation. What I didn’t ask him is why now. I know on earlier conversations we’ve had he’s basically said it was all the medication I’m taking and given the proverbial shoulder shrug. He did throw out the “S” word and told me not to be alarmed (or something like that because my memory is crap), but it was an out there possibility, not a distinct one, but something to keep in mind. Look at me, punning like that!

Time is up. Tomorrow (or the next time) maybe I’ll try something new.  I just realized I can still tweet like mad about me, me, me!!!!

 

 

 

 

A whole lot of nothing

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I’ve been doing a lot of reading of other people’s content–blogs, twitter feeds and Facebook profiles and I know I’m not doing a lot. my life is really really small. It seems negligible compared to others, but we don’t do that anymore, right? Just observing how the scope of my life has narrowed to this. I speak matter-of-factly, not to whine woe is me. I’m just saying. this is how it is.  I wanted to slap something into my blog. It’s shameful how many drafts have piled up, a bunch of littered words in a corner of my life. Even this one has aged by a week, but it is going up, dated when I first began it. An acquaintance endorsed me for blogging so I better snap to it.

However, My coke bottle prism glasses are no match for doubled text and images that swirl and jump. My time on the computer is done for now, so the relatively unadulterated and aged post….

Right now I’m sitting on my sofa watching the fan oscillate back forth back and forth it blows what feels like cool air, but it doesn’t bring cooler air into my apartment it just feels that way since it’s muggy outside.

There’s an American Eagle hat Hanging off of it that was given to me by a friend and I love it because it’s red and has notches at the
temples but I never wear it because I don’t think I look good in a baseball cap. it obscures my entire face. it seems I am not meant for baseball caps I guess but I love it anyway. I am amazed that its still there because it’s not hanging off a hook it’s simply grasping it somehow. small things…

I’m trying to write this with speaking because I can’t really see my screen all that well and my hands shake. My computer is out of the question right now, and today is what I’d call a not very good day. I’ll have to go back and correct later and I can do that but it requires a great deal of effort. It’s exhausting. This is the new small life that I have. Defined by what my body will allow me to do. I’m still looking to find if there is an app that will read everything to me, and will effectively allow me to read into it. I said not just any app, an effective app. Still looking.

repeating myself

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i don’t know why i was suddenly struck with the urge to write in my blog. maybe it’s because i am trying, really trying to make a comittment and follow through like i mean it. maybe it was the result of one of those endless conversations i had with myself. you know, one of those ones that doesn’t go well and contains a lot of shoulds and just make you feel even shittier for not having sprung into action before. good old negative talk. maybe it was the conversation i had with a friend last night that was a little bit like looking in the mirror. that person lacks the discipline it takes to follow through for even one day for the good of his health and his life. i am left to be the voice of reason and the person he calls in his darkest hours, the person he leans on for support. he will say he wants to change this thing, but he fails because it seems like he really doesn’t try. but he’s human, susceptible to all the same weaknesses and foibles. he’s mostly alone with only himself to motivate himself.

so i am trying again, yet again. i know it is also because i am having one of those “good days”, one that so far allows me to see and walk straight, get off the couch. i feel like i need to do everything in the window that’s been opened, and there’s so many things to do beyond the rudimentary grooming and feeding of myself. i don’t know if i’ll get to exercising but i do know that i’d like to because i am getting fat and i don’t like the way it looks on me. maybe it is just age catching up with me or a side effect of all the pills that i am taking, but i know for sure that living an almost completely motionless life surely isn’t helping.

i think about last year this time and i was going to be going to las vegas and i felt a lot of life was ahead of me, and now i find myself here. my life has stopped short and i never know what my day will hold when i wake up, and that’s not in a good way. My world will loop, dip and shift, my vision cascades and doubles. walking is extremely difficult, i careen through my apartment. when i don’t want to risk falling, i crawl. i am living in the grasp of it. i try to cope and work around it, when it’s possible, but it’s mostly what dominates my life. i feel vulnerable and weak.

i know the time i have to write is finite so i’m getting it down however inelegantly.  *sigh* things are starting to go sideways now so best to get this posted. uh….there it goes…..this tiny writing is impossible to read now that it is bobbing and weaving before my eyes. over and out.

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