Music for today

I’ve done a lot of writing for personal projects and as usual by the time I get here I’m not in the mood to write more. But there is a sense of accomplishment, so that’s good

 

So instead for now; this sums up my mood. The lyrics especially.

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Plato on the knowledge of death

Reading some Plato: as ya do:

Not commenting on this, just putting it out there, from the Apology: defence of Socrates

After all, gentlemen, the fear of death amounts simply to thinking one is wise when one is not: it is thinking one knows something  one does not know. No one knows, you see whether death may not in fact prove the greatest of all blessings for mankind; but people fear it as if they know it for certain to be the greatest of all evils

 

 

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Alone together

Apologises. It seems the  only time I seem to do a real posts on here these days when I need to vent.

I went on a long journey yesterday to meet an associate in the Western suburbs and then travel with them to the airport. It was a 4 hour round trip. With a change on each leg.

I — The Eyes

As I got further out from the change at Strathfield I noticed people staring more. People stare at me all the time and everywhere. It was more noticeable because they were fewer words. I used to try to make-believe that it’s because I’m some stunning beautiful mystical creature here to bring peace or just a really hot woman (this particular imagining will become relevant later).

I am used to children staring especially those in prams stuck looking at me in lifts, but even others, and the pointing. And the adults; particularly those who 20 seconds earlier weren’t looking where they were going, and seemed shocked that “it” actually moves. Its odd when kids are dragged in one direction while staring back at me: parents disengaged.

Each time anyone stares it does tug at me. It wears me down. It accumulates. I’m not a circus animal.This is not the zoo. I don’t come with a label stuck to my cage (wheelchair) explaining my feeding schedule and breeding. I didn’t charge admission. I’m just trying to get through Life unscathed. By the 5th stare or glare (about 10 am most days) I want the ground to swallow me up and leave it to the Real Humans.

I know in the case of a child its curiosity. I get that. I try to be gentle. Really I do. I try to smile back. I used to try to say hello but these days that doesn’t seem to be well received especially with those of different cultures. I smile at the parents and get a stare back or a sheepish look or a glare for daring to speak to their child. So, in the case of the lift, after receiving whatever look I’m going to get I retreat. I crawl backwards, missing the days before the baby boom meaning that everywhere that works for me there go many prams/families which for me is super tough as I would love to be a Mum of some sort but it isn’t going to happen.

It used to be parents told their kids not to stare.
Now no one says anything.
Embarrassed giggles,
Language barriers

It used to be parents told their kids it was rude
So I could hear
Now they join in
Awkward glances.

It used to be kids were told to ask questions of me
when tugging and whispering on Mum’s arm
Now silence or adults ask their own
Inappropriately.

CG chose to use the stairs. Lucky him. To not get squashed or make more room for more of the same or not be seen with me. I’m not sure which. I wished I could join him. It’s why I use ramps. I control the pace.

So I went it alone.

II — The Mouth

Somewhere close to Blacktown a gentleman got on, elderly but not super old. English was not his first language. He sat on the opposite side of the carriage, in a pink polo shirt and pants. Looking at me, staring at me. I tried to ignore him, but could feel his eyes on me so that the hairs on my arm stuck up. I tried to ignore it as usual, but it felt strange.

My bag was next to CG and I sat next to the door with the glass between us having allowed for prams to pass me. I only put my face mask on sporadically. (can’t get an infection at the moment so should have been wearing it but people seem to lipread me more than hear me so I’d taken it off). I coughed so retrieved mask and put it on. Pink Shirt looked relieved. Oh dear.

It was obvious CG and I knew each other as I sometimes sat side on to face him. Approaching Lidcome or so CG was asked “how old is he”?, and stared back at me. I pulled down my mask so he could see my face which despite my Sinead O’Conner look still I hoped looked feminine complete with the floral dress I was wearing the wedge heals and the eye make up. I said softly but firmly I’m a woman. I said it twice. I didn’t yell it because I didn’t want to make a scene.

But that was not the point. He wasn’t looking to me for answer. CG eventually said “It’s not polite to ask a woman her age”. I stared away, into space and willed my eyes to stay dry. I wanted to get off the train, change carriage (not allowed given the need for the ramp to get off), anything but stay there.

In fact my world got hypersensitive and claustrophobic and I felt alone. Pink Shirt told me at one point to be happy. I think I grimaced and sent CG a text he didn’t comment on. As Pink was disembarking at Redfern he held his hands up in my direction, arms length. Was it prayer or a remote laying on of hands (which I love — not), or an act of warding off evil spirits. No idea.

CG seemed to distance himself even further from me. I noticed that. Can’t say I blame him. Later I had to remind him he’d said he wanted a hug goodbye and he seemed to want that to be over as soon as humanly possible as soon as someone else rang, only really interacting with me when no one else could see. Can’t blame him.

It wasn’t just the gender issues. Maybe he meant she but didn’t have the language. I get that. It was the fact that I have to be ready to hear questions like that whenever I leave the house. I’m public property. Even if I choose not to answer them. Even if I say they are rude. I may not get them, but I must be ready. The vigilance is exhausting but the minute I try and sit in a pleasant corner of my brain I get caught with defences down and it hurts more. It is the fact that he felt ok about staring at me and asking a 3rd person about me. If I’d been an upright I doubt he would’ve, of if he did, more than CG would have noticed and objected.

III — Fallout

I hear this happens to pregnant women too. Touching bellies, asking due dates etc. I get that. There are differences. Pregnancy is a time limited state undertaken usually by choice and with a reward at the end. I’ve been pregnant for long enough now. I want out. Its also publicly discouraged to touch bellies.

I know that in most cases it’s no individual or child’s intention to insult. That most people are just trying to be nice or are curious but it does accumulate.I try and be gracious. I want to go back to hibernation.

It was a long day and I’m not sure of the value.

I don’t know why, but this feels like an important post. If you like this or know me can you please send it on to someone else? J

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retro active

I’ve been quiet lately introverted. Reverting to some old favourites. Old based not just on the regularity with which I return to the faithfuls but also in terms of the setting.

I’ve listened to Pride and Prejudice as an audiobook which I do annually when I need a bit of TLC and gain watched the BBC version (I mean Colin Firth isn’t bad to behold), and revisiting the “Pride and Prejudice from Mr Darcy’s point of view” options that I’ve collected over the years. I have my favourite which is the 3 part series; Pamela Aiden’s Fitzwilliam Darcy, Gentleman.

As appears to happen to me I then start googling and YouTubeing around the topics I’ve read, and in this case dreaming that a little bit more of the Regency lifestyle was present in the modern world.

I’m thinking more of the senses of etiquette and occasion, letter writing and calling cards and yes perhaps a slightly slower pace to some things like making plans to socialise by letter well in advance and thereby harder to just flick off a sms to change.

“I propose myself the satisfaction of waiting on you and your family on Monday the 18th ……You may expect me by 4 in the afternoon”

(Mr Collins taken from the mini series).

I’m not decrying modern technology. I’m blogging about this after all. But maybe the pace means things are taken for granted, and the healthy sense of marking occasion is missing. I also acknowledge that the Regency period was not all rosy, or romantic (which is covered more in the Aiden books and part of their appeal to me). Yes, I also know that a single woman at my age who used a wheelchair would not be welcome in society if I was even alive. But I’m after relief and the lessons that I like.

I’ve bene drawn over the last few years to wanting to write letters again and mark things with gratitude. So on the back of my annual Bennet/Darcy/Bingly fest, I ordered personalised thank you cards and return address labels from Vistaprint and while waiting have sent off 2.

I also found this, which includes this list as the Maxims and Rules for the conduct of women, published in 1806.

1. In the exterior, decency and cleanliness.
2. In demeanor, reason and simplicity.
3. In actions, justice and generosity.
4. In language, truth and perspicuity.
5. In adversity, fortitude and pride.
6. In prosperity, moderation and modesty.
7. In company, affability and ease.
8. In domestic life, rectitude and kindness, without familiarity.
9. Fulfil duties according to their order and importance.
10. Never allow yourself any thing but what a third enlightened and impartial person would allow you.
11. Avoid giving advice.
12. When you have a duty to fulfil, consider dangers only as inconveniences, and not as obstacles.
13. Sacrifice every thing to peace of mind.
14. Combat adversity, as disease, with temperance.
15. Be anxious only to do what is right, paying as much respect as possible to the world and to the law of decorum; but, having observed this rule, be indifferent to public opinion.
16. Never indulge in any but innocent raillery, which is not injurious to principles, nor painful to persons.
17. Despise interest, and employ it nobly.
18. Deserve respect.

Quite apart from wishing to say that I think these same rules could apply to the Gentlemen too, I think we could all do worse.

But then there I go breaching Rule No 11.

 

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Preparing for the new year

So, fairly regularly, I get a bit fed up with myself and get inspired to revamp/ renew my life. Organisation is always one of those things. At least feeling this way at this time of year puts me in line with most of the rest of the world!

Evernote has been one of “those” systems. I felt like as a writer, a thinker and more than a little tech savvy it was the cool system and app that everyone like me should love. And many do. With good cause. If for no other reason than it is a good catch all.

But maybe that was exactly my problem. At this stage at least I don’t need another collection bucket to try and compete to be my go to. Maybe that might change. But for right now as I really am rebuilding across a few different areas of life ( and no this is not just another revamp but a few different areas of life do need to change dramatically and simultaniously), I need fewer collection buckets, and fewer places a thing could be hiding once I’ve got it out of my head. I find more specific buckets work for me. If it’s a note about a book I read — It’ll be in one of those notebooks. It’s a reminder about a direct debit – it’ll be on my calendar etc. I still struggle with to-do lists/next action lists as I am such a hybrid type, I seem to want everything to be both available and up to date as bothe low tech (i love my fountain pen and start thinking well on paper) but want to transition to iPhone or ipad fairly quickly. Crazy I know. Delayed reminders that couldn’t be looked at were a real issue.

So Evernote much to my shagrin was an app which sat in my applications folder languishing. The cute black elephant icon taunting me occasionally, but unlike many others I wasnt prepared to cut it out of my life. There would come a point when I was better organised that we would need each other.

And I’ve found its calling…. It is my tickler file. For the reminders I can’t do anything about now, but need to be tickled about later and also need to see and feel they are stored without being reminded daily at a point when they can’t be actioned, which seems to then difuse  the action-ness of a list of to do’s. 

So I searched for “online tickler filing system” and found this from SohoTech 

I’ve set my system up fairly similar, except I went ahead and started the numbering 01 January, 02 February etc. I have created numbered files for each day yet but only for the numbers I need so far. They will evolve no doubt. I think I will also add things like “end of the month” and “second pay cycle of the month” as caterories.

No this is not an advertisement for Evernote or GTD or anything. No spin off for me. No arrangements have been made. Just something new I’m playing with

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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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