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Stella, oh Stella

Today, I'm in a bit of pain. My heart aches. Stella Young is gone.She died on Saturday. “They” are now saying it was an aneurysm.
 
In many ways it wasn't as if we spent a whole lot of time together. I was not close. We knew each other, in person a few times, but mostly through the writing we did, to each other and her public stuff.. We laughed. We rolled our eyes at the same patronising behaviour we both received – especially notable at a conference about the national disability insurance scheme. We both wrote. We talked. She kept encouraging me to submit to RampUp but I never did. I was simply lacking in confidence. As I am now, writing this. She and I didn't agree on everything. Unlike her, for example, I can't self identify as a “crip”; much much less a “super-crip”
Yes, I'm sad that's she gone. For her own presence in the lives of those she more directly leaves behind. Those who will miss the daughter and sister and lover and drinking buddy that she was. I will miss my friend and as much as she would hate it the inspiration that she was for me. Mostly without even knowing it. She was more than that. She was like reinforcements for me. She provided me with the mental space to breathe laugh and reboot in my self advocacy. In my sense of being different. I got courage. I got space to regroup and be me and not feel so alone, regardless of whether I agreed with the specifics of what she said.
Listening to interviews she did yesterday filled me with a slightly more global sadness though. I said in an email to friends that:

So close to my bone. It actually stings. We don't have that many good ones left. Really we don't.

That's the thing. More that the individual herself, but partly because of her values and her actions, we have lost both a curator and participant in the debates and discussion about and around disability, those internal and external moments when even we needed to kick ourselves up our own ass. She could do that, like her or not. She wanted us to have enough self respect as humans to have some self expectations and a place to safely debate and build without patronising overtones

I confess the first couple of times we spoke I was awe struck with how articulate and ballsy she was. But also how funny.

Vale Stella. Well done.

 

 

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Update

From yesterday
I’m still at the bottom of the well. But I guess the Sharks aren’t circling. Many of the symptoms I spoke of yesterday are still present. Strongest are numbness including in my hands, hypersensitivity to noise (and light today), easily overwhelmed and if I had to pick an emotion it would be sadness.

The well doesn’t yet have a staircase which is my usual way I get out from under. But there is no water, or sharks and now I can see light on the edges. Just a sliver mind you and it feels like glare (see above).
It still feels very debilitating. But I am about to leave the house. I saw my counsellor yesterday, which was reassuring but travelling to and from was really really tough.

Thank you to those that reached out.

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Cross post: Where I am at ****warning: really ick****

I’m not at all sure about the wisdom of saying this here. Or anywhere really. But I’m depressed. I woke up this morning feeling like I’m at the bottom of the well that has been my occasional companion and constant shadow and fear on and off for over 20 years. I have been stressed for weeks (with ample reason, though no single cause) and low for the weekend. But this morning is different again. Here I sit. Alert. But trapped. Or not. At the bottom of a familiar well with no edges. I don’t know if I have the strength to climb back up again. When the stresses and uncertainties will mostly still be there. For the term of my natural life.

I don’t want to scare those of you who know me offline. I’m safe enough. I recognised the well and organised to see my counsellor and that I’m not alone till then. I’m safe enough. I don’t feel like I have the strength to commit suicide.

Its everything and nothing. It’s the little things and the big things. It’s feeling like I’m a ship lost at sea. Its feeling like I’m being suffocated. It’s feeling lonely, misunderstood, neglected and abused. It’s feeling crowded and isolated at the same time. It’s the core busting sense that I really don’t matter unless I’m there, or achieving, or paying. Even to myself. It’s wanting to be alone or surrounded by love. Its feeling exhaustd just facing food or leaving the house.

Its the blanket of hopeless that means I can’t see anything beyond the next breathe. It’s being able to see too far ahead and not liking what I see or don’t see. It’s hearing nothing and being hypersensitive to noise. It’s the physical pain. It’s the disconnect. It’s trying to keep things light and social and being haunted at night regardless of if I fail or succeed. It’s remembering everything, but recalling nothing. Too much to do at once, too much I want oo change and not enough. It’s all the dichotomies. I can justify them all as stressors. But it doesn’t really matter.

For example It’s the hard drive crashing just as I was to achieve something I have wanted after other uncontrollable delays and taking most of 2 essays with it. It’s the fact that faced with rewriting them my mind is blank and any hope is gone. Its disrespect on the footpaths. It’s being made to use the back door and still make it ok. Its bank transfers that won’t work, despite funds and doing many successfully. It’s thinking through every phonecall I make and if I should make it and still getting it it wrong, like so much else. Trying to do the right thing and getting it so wrong. It’s being put on pause and pulled through the emotional mud for $300 and a box of stuff. But I matter right?

These are just some examples. Not that it is the events in life that has done this. It just is where I am.

 

I am not sure about if I should post this, but maybe it’ll help someone else going through it. Falling quickly like I tend to do is part of the fear.

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Cross post: Menthol, Sunshine and the possibility of human potential

Cross post from my other blog.

So the other part of my birthday gift from a friend of mine was enough iTunes money to buy myself Eternal Sunshine of the Spotless Mind. I bought it to prepare for one of my exams for uni and then watched it last night.

I missed the class in which the movie was shown and yet on being shown that the biggest question (worth 40%) centres around philosophical reflections on this movie, it jumped to the top of my “to watch” heap, which to be generous is not that long.

I watched the “trailer” on iTunes a few days ago and worked out this was what I would term a gritty movie; and deep content (fine), ensemble cast (fine, though I didn’t recognise the two actors in the trailer) dark lighting to go along with the dark themes.  It was going to be a word film, a concept film. Great. Being a wordy thinker in a philosophy class that works well. Psychological shows you leave thinking about.

I tend not to read much about films before I see them. I like to see if they can absorb me without preconception playing a part. Besides, in this case, I had to watch it for class and I hasten to add I like my lecturer and the way she thinks so would trust her judgement. This was just as well.

Apart from films like The Green Mile, or the early Harry Potter movies , where the science fiction is more conceptual than visual, as a rule I don’t like science fiction. I think I was traumatised early by watching one that was out of my age range or something. I don’t know. I think I also really really get how scary some of that stuff could be for human existance if it came off. Ask anyone that has tried to watch tv with me, any sort of  morphing, even cartoon mophing of any sort, or the butter menthol ad below where even after treatment she still makes that noise have me hiding in the nerest armpit or pulling the face of a 2 year old!

This is where the idea of walls disappearing as you walk around your memory as you’re trying to notify distracted medical professional that you changed your mind about getting your memory wiped really gets icky. But hey that’s the point, right? That stuff should be icky. Yet I can happily watch reruns of the gory bits of medical docureality and not bat an eyelid, even though that stuff does happen to me!

Maybe that’s the thing. Maybe it’s the unknown potentiality that freaks me out. Particularly the unknown potentiality of human beings. In many ways potential is meant to be a positive. But if mere carelessness can cause the heartache and trauma it causes, much less Hilter, ISIS or the like, then what else is the potential is others are not just being  careless in their neglect.

The other reason I’m glad I didn’t pre-read on this movie: Jim Carey. I have not been a fan. At all. For me, his slapstick is hard to watch, even in Bruce Almighty.  Although I would have watched it anyway, I’m so glad I didn’t recognise him in Eternal Sunshine until 25 minutes in. The humour was much drier and to my taste

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A new commitment I make unto you

So I’ve become a member of stickk.com and recommitted to writing daily and more scaringly publish some of what I write somewhere 3 times a week.

I’ve been writing plenty; and in a sense publishing in a way too – mostly for uni. I find that by the time I’m done with those esays and everything else I don’t really want to publish anything else. But I still find I want to write privately. But I get shy.

But then I met a friend who I know from uni for the first get to know you type coffee. I discovered she is a beautiful blogger that i have quasi followed for a while http://www.lauramcalister.com/. After I’ve shared my blog name I thought I’d better post.

Then just last night I discovered another friend has started a fresh blog over at http://accessarration.wordpress.com/ and already got great interviews.

So check out these lovely ladies and lets hope to “speak” to you soon.
 

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Back

I plugged back in on Friday, officially. It was as I expected a good experience in which I learnt a lot.

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For those that know me offline

Hi

I’ve taken a self directed modified vow of silence for a few days. I just want to slow my mind down a bit and slowing my speech down will help me do that. I need to reflect and grow. I want to develop some more discipline even in just keeping this commitment. I enjoy feeling safe enough to be quiet and I want to now reinforce that I can be my own safe space. I want to choose the words that go through my mind. Time with fewer words will help.

Yes there were a couple of situations that triggered this, but right now they aren’t important. This is gaining peace, not running from pain.

I intend to do my life as normal. This is not a retreat so much as a practise. But neither am I wanting to become a Trappist monk. This is a modified vow.a vow of no vocal chord use, even on my own while still leading my life in public.

As such,
I will write notes, on paper, ipad, SMS. Email and phone (iMessage/SMS) will still be on and checked and replied to but probably phone will be on do not disturb a little more.i have noticed just by typing or scribbling one chooses how to speak differently.
If you want to avoid me in this time ok, but I would still like to see you if we have plans or a practise in doing so. I hope to listen well and show you without noise that I am with you. I have predetermined three situations in the next 14 days where I will speak if I’m still not but they aren’t social events and if you are reading this then it’s safer to assume I’ll be silent till I’m not.
I’m not doing this to annoy or embarrass or avoid you or the world. It will be a discipline for a predetermined number of days to slow myself down, lower my guard with myself and develop mindfulness, grace and clarity among other things. Iits not a game nor is this a spur of the moment attention grab. I’m ok all things considered.
Music, movies etc will be a part of my day still

This website gives the closest description of both the how and the why. But it is not a replica.
http://www.highexistence.com/my-vow-of-silence-and-why-you-should-try-a-silent-vacation/
Like her, I don’t really want to talk about the process much. Not till later. I hope to hear from you (better) or see you around.i hope to smile and nod a lot.

Love

Joanna

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stewed ant

Edited repost from elsewhere written by me.

willowdove blog appears to be looking strange and has done for a while. Another reason I’m scared of it. (now fixed — the blog, not the fear)

But who knows. Writing though might be (was) the boost I need.

I know, there is something of a contradiction of private blogging.

I’m reading more. That was the idea behind going back to uni, even if I don’t finish. Give my life and my brain more structure. It is certainly doing that. It is nice that the topics are generally outside my work area, but inside a long-held area of interest. I’m keeping up with the readings on top of everything else which is good. I am not sure how well I’m retaining information though and for this week it all seemed to go quite quickly and easily into my head. Therefore, I’m worried that I’m missing something huge and am really quite dumb. But it is giving me permission and the space to think which is what I wanted.

Philosophy of the Human Person is one of the subjects. Last week was on the right or not to have a post birth abortion if the child has a severe disability! Ouch. Bit early in my relationships with this new self, these new classmates to go there for me, although I gave an opinion. I struggled not to as, real or imagined it felt like the elephant in the room was a whopping great wheelchair in the room, with me in it and the preconception, again real or simply in my head, that I would have an opinion.

The content and its implications was scary enough without the social baggage and memories of my own.

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Just quietly

So while laid up I've been reading, thinking and researching. Whatever took my fancy really. Plus dealing with a couple of bits of people related drama

In preparation for resuming study next week I've been trying to build-in some routine and allow specific times for reading and writing especially which is good. Hopefully unlike when I first started studying I won't be alarmed by how much extra I suddenly had to do along with the disability and time wasting “very important stuff” that a teenager out of home for the first time has to deal with. Of course very little of that very important stuff was actually very important but that is very much the perspective of youth.

I'm trying to consciously read more. Speak less. Listen more. Solve less. Be quieter. I'm not finding this hard at all. In fact it is as if the peace that passes all understanding has landed. I'm leaning back into it and myself. I'm less exhausted in one sense because I'm not giving away so much. I'm calling stuff as I see it, if not aloud then consciously but silently

I have decided I don't like Sydney. Too busy and way too aggressive.

I'm learning to like myself I guess. Again, or for the first time at this new level I'm not sure which. Another stage of the getting of wisdom perhaps?

 

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Just quietly

So while laid up I've been reading, thinking and researching. Whatever took my fancy really. Plus dealing with a couple of bits of people related drama

In preparation for resuming study next week I've been trying to build-in some routine and allow specific times for reading and writing especially which is good. Hopefully unlike when I first started studying I won't be alarmed by how much extra I suddenly had to do along with the disability and time wasting “very important stuff” that a teenager out of home for the first time has to deal with. Of course very little of that very important stuff was actually very important but that is very much the perspective of youth.

I'm trying to consciously read more. Speak less. Listen more. Solve less. Be quieter. I'm not finding this hard at all. In fact it is as if the peace that passes all understanding has landed. I'm leaning back into it and myself. I'm less exhausted in one sense because I'm not giving away so much. I'm calling stuff as I see it, if not aloud then consciously but silently

I have decided I don't like Sydney. Too busy and way too aggressive.

I'm learning to like myself I guess. Again, or for the first time at this new level I'm not sure which. Another stage of the getting of wisdom perhaps?

 

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