Sunday, November 29, 2015

How do I get people to understand I'm going blind..?

It is hard for people to understand that I'm actually, really, truly going blind. My vision has been static since I was three, and so most people in my life (except my parents, I guess), have known me while my vision was static.

This year has been a very difficult one for me. I really hate to all 'poor me', that is not how I roll and so a lot of people don't recognise my struggles, 'I can't even tell you're vision impaired!' they say - it takes a lot out of me for them not to be able to tell. A lot. Privately, that gets me down quite regularly, but I refuse to be a victim, so I don't go there.

On a positive note, the forum I have been attending for the past seven Saturdays, has been a wonderful salve for me. Being with other people going through the same thing as me has really helped me. We have been able to talk out our frustrations, our fears, and the most particularly the feeling of isolation and alienation we have experienced through the loss of vision.

In the past couple of weeks I have noticed my vision has dropped further, which has been even a bigger shock to me than the vision loss I've experienced the rest of this year. It's the frog in the pot thing. If you put a frog in a pot of luke warm water and warm it up slowly, the frog doesn't realise he's being boiled until it's too late. If you were to throw a frog into already boiling water, he'd definitely notice.

All this year I've been the first frog, but in the past couple of weeks, I've suddenly shifted into being the second frog.

Three incidents have high lighted this for me.

1. I was catching a train locally, at a station I know extremely well. As I headed towards the wider gate where they let people through who have a travel pass, I couldn't see a staff member to let me through. This is annoying because it means lining up at the little window and waiting and waiting to ask for someone to open the gate when it only takes a second to walk through if the gate is manned. Anyway, as I walked a bit closer on my way to the window, I realised there was a staff member standing at the gate in a high vis. vest! I simply hadn't seen him when I was three metres away.

2. I was walking home and as I approached the curb to cross a small street, I saw something black and bulky laying over the footpath on the other side. I was a bit bluffed because I thought it might be a dog, and I didn't want to get too close to a big dog like that who was possibly laying out front of its home ready to guard its property. I crossed the road, and came within a metre and a half of the thing very cautiously. That's when I realised the black 'thing' was a teenager crouched over his shoe with his school bag behind him on the footpath (totally blocking the footpath mind you, kids!). Again something I might have seen a few weeks ago, I just couldn't see.

3. I was walking to uni along Burwood Road and out front of MLC, I saw another huge black thing on the footpath. I could not tell what it was until I got to about three metres away, and then I realised it was huge motorbike parked on the footpath. I looked around for the owner, as my investigations with my cane told me the only way around the bike was up an embankment and I didn't fancy attempting that. Suddenly the voice of a man was right next to me (have no peripheral vision). He was, again, wearing a high vis. vest. I thought he might be a community worker, but he told me he was a cop, and then offered me his armed and guide me up the embankment and around the bike. Directly on the other end of the bike was another officer I hadn't been able to see when scanning for help.

Shit is getting real, folks.

Shit is getting real, and I'm still battling with people who just don't GET IT. They don't get that I can't see them, that I can't see the sign overhead, that I can't read the subtext on my 55" television even though I sit just two metres away from the screen...

People make all sorts of assumptions about what I can and can't see. Of course they do, they can't experience what I am seeing, or how I am seeing things. It is difficult to explain. I have many people tell me many times that their vision is worse than mine, often qualified with 'without my glasses'. The thing is, no glasses work for me, so they can't understand what it is to have my vision.

A couple of years ago I had fifteen percent vision in one eye (none in the other). Within about a few metres, that vision was quite clear (from what I understand clear to be - of course, I've also never experienced full vision, so I don't know what that means, either). Now I have no clear vision at all. My field of vision hasn't changed (I still have the same amount of tunnel vision has I've always had), but the quality of my vision is much lower than it used to be. I can't read text on paper, and I can't see faces anymore. I can't make out a person from a bag or a dog at 2-3 metres, but in a familiar environment I can more or less navigate quite well still.

Recently, I've been told on several occasions that I've walked right past people I know well. I simply didn't see them. The smart ones will call out to me and identify themselves, but on a couple of occasions people have thought I was ignoring them on purpose. I am not, nor have I ever been, the kind of person to ignore people. I actually say hello to people I don't even like, because I believe in being courteous, especially when other people aren't. Also, I have thought I saw people I didn't see. I have mistakenly identified someone as the wrong person because they move similarly, or dress similarly. I am still coming to terms with what I can and cannot see. All I can do is apologise.

So, being at this forum has been amazing because I've discovered it is not just me going through these experiences. And, more importantly, I've learned these are not my issues to solve. I am not at fault for not being able to see things or not being able to see people. I don't have to feel guilty for other people's projections on me, those are their issues, their insecurities, their lack of understanding.

This has released me from always taking responsibility for how my low vision, and my current vision loss, impacts on other people. I'm not doing this TO anyone. I have enough on my plate without taking on other people's issues.

I'm sad that these meetings have come to an end, but we have plans to catch up in the future, so that's something. I can see (ha!) that a couple of the people from that group could become good friends.

Today we went to the Vision Australia subsidiary - Seeing Eye Dogs Australia (SEDA) - and had an information session. They pretty much run the same way as Guide Dogs Victoria, but on a somewhat smaller scale at the moment. We met a gorgeous Golden Retriever named Elliot who some very lucky handler will be matched with soon. Today's visit served only to increase my longing for my own guide dog. There is so much new development going on in my suburb and a dog has the benefit over the cane of being able to 'find the way' around obstacles, or let you know there is no way around.

I need to find the time to arrange things like a disabled parking permit, a companion card, a few tech lessons on how to use voice on my various device (well, use it better, that is). I still think I need to go back to finish my course in Braille. I had to drop it earlier this year because of the pressures of the PhD, but in the long term I need to be able to read more than I need to be Dr Dal (though I still really want to be 'The Doctor', ha!).

Tomorrow I'm off to Swinburne for the AAWP conference. Navigating a place I don't know always makes me nervous - which is why I'm sitting here in the middle of the night letting it all out on the blog. I'm not presenting this year, and so I'm really looking forward to just getting in there and learning some interesting and useful stuff and meeting with all the people. One of my flashes is being read out as part of a moving literary 'train' around campus. It's embarrassing, but it will be over quickly and at least I have a good reason not to read it myself!

Gosh, this post has been long - I have a lot to sort through.

It would be nice if other people understood what it is to go blind. For most people, like me, it's a piece-meal experience which, while having the benefit of allowing for acclimation, also means others don't notice the change as much, and then make all sorts of assumptions about what I can and can't see now. I don't have the energy to worry about other people, going blind is incredibly energy sapping. Going blind while doing a PhD is incredibly energy sapping. Going blind while doing a PhD and parenting four children, two who are teenagers, one of them with Aspergers, as well as two who are still quite small, despite being 10 and 7 and need to feel heard and seen despite all the other pressures in mum's life - it's draining.

So everyone else just needs to take care of themselves and stop putting all their issues onto me. I can't be their scapegoat.

Thursday, November 26, 2015

Stages of grief...

With her trilby rammed down around her ears, she walked into the warm westerly. Thunderclouds hung heavy above her, ready to release their burden. She knew the stages of grief were not linear, but having been through denial, anger, bargaining, and sadness, she still couldn't step into acceptance. Today was a day for anger. She'd rehearsed her comeback.

'Don't come all nice with me in public. You're not nice, you're insincere, and mean, and a coward. You never told me what I did that was so inexcusable that you had to walk out and slam the door behind you. You told our friends I was a toxic person. You never faced me. You want people to believe you're a nice person, but you're no better than the girls at high school who talked to you one day and left you out in the cold the next. Don't come all nice with me, I know you too well!'

Of course, she never said it. She just felt it.

They say holding onto anger only hurts the angry person. She hurt.

Large drops fell on her cheeks. Angel tears. Weeping angels.

And then it came. The scent of petrichor. The word she loved because it was at once hard and soft, like polished sandstone. Like grief. The Doctor had arrived just in time to heal her.

Monday, November 16, 2015

Knowing when to call it quits...

Sometimes it can be so hard to know when the time has come to call it quits on a situation.

No, no, I'm not separating from the Grumpy Old Man, and I'm not giving up my PhD, so you can all relax.

I'm talking about school. Formal education. Institutionalised education.

When my eldest reached school age, I knew he wasn't ready for a classroom. He had no real concept of rules, or consideration of others.

Honestly, not much changed even when he did start school aged seven and a half. We trundled on though, and for the most part we were able to keep him on the straight and narrow with a massive amount of guidance. In primary school, a lot of behaviour issues are put down to immaturity. This does not continue to work in high school.

So, Erik is just about finished with his third year at high school, and to be blunt, it's been a bad year. We've had ongoing issues with work not being completed or handed in, even if he was allowed to hand it in three months late. He leaves the school grounds at lunch time because, as he sees it, he's doing VCE subjects so he should have the same rights as year 11 and 12 equivalent students, even if he is only in year 9 equivalency.

If he doesn't like a class, he just doesn't turn up.

He has been disruptive in class as well.

This morning we had a meeting with his head of house, and Erik has been restricted from enrolling in any VCE subjects. He had put in for four of five subjects to be VCE level, but that's just not going to happen now. He failed Studio Art 1/2 (because he didn't turn up to class or hand in assignments, despite swearing up and down that he wanted to be in that unit), he scraped through on Math and English, but in Math he had to re-sit nearly every SAC. He did well in Philosophy, and it really is a shame he won't be able to continue on to year 12 Philosphy, but well, he's done himself a disservice by showing such contempt for the rest of his classes.

He's on his last warning. If he doesn't improve considerably, he's out.

I have no real hope he'll improve. I don't even know if he can.

So, what happens if he's sent packing? Another high school? No, I don't think so. He would only be able to get into our local, and it's really just a terrible high school. A lot of social issues amongst the students, and Erik is drawn to kids with social issues like a moth to a flame.

So, it looks like we'll be coming full circle again. He'll have to be home-educated. This time out of necessity, rather than choice. I'll bring him into the office with me, and he'll just have to do work I assign him. There will be no unschooling this time, because it has become clear this year that he needs to be under constant supervision and direction. He is unable to make beneficial choices for himself at this stage.

My only question at this point, is, do we pull him out now, at the end of the year, or do we wait for him to be expelled in the new year?

That is what I mean by it being hard to know when to call it quits.

Friday, November 13, 2015

Thesis plan and summer school...

Here is the promised image of my Thesis Plan...

It is both exciting and daunting to have this laid out like this - well, stuck on the wall, not exactly laid out.

Exciting because I have some sort of handle on what I'm doing (okay, so chapter three is a bit bare and in hind sight, I may have already covered the projected contents in the introduction, and chapters one and two... So, will have to have a rethink about chapter three). It's pretty too, all colour coded and nice. It gives me a great overview of what work I've done and what work I still have to do.

And there you have the daunting bit... I have SO MUCH work to do! This layout doesn't include the timeline for all the paperwork that needs to be covered in the last three months before I submit. By September next year I'll have all the drafting done to a fine level, and then I'll have six months to do a fine toothed comb draft and to get all the elements corresponding to one another in a dovetail fashion. Then, it's the final sprint to the finish line...

Summer school - well, this is exciting! I've just registered for Summer school! If I get into the January guide dog training, I'll have well and truly finished that by the time Summer school starts. If not then I'm counting on the next training session not to start until after Summer school finishes, on February 21st. So, hopefully that will all work out.

This is what I've put down as preferred workshops and reading groups.

Saturday Workshop:

Building, shaping, forming, researching with metaphor (one of the workshop co-ordinator is an acquaintance, so that'll be really nice!).

Sunday Workshop:

The sensory, the sensible and making sense: Practice-led research and the exegetical writing for creative practitioners

Reading Groups

Group 4:

Creative thinking and materiality in research practice

Group 8:

Finding the warrant for your research (where did you leave it?)

[Alternative] Group 9:

Self-focussed methodologies: Is it good research or just good therapy?

I'll be attending the Think Tank on the Thursday afternoon, as well as the dinner (not sure if that is Friday or Saturday night).

That's four days and three nights away from home, but at least it's half part school week, and half part weekend, so hopefully the Grumpy Old Man won't mind too much (I've been leaving him alone with the kids a lot in the last year and I know I'd probably be a bit annoyed if he left me with the kids this much).

So Excited!

Thursday, November 12, 2015

November Thesis Update...

In November I'm working on the second chapter of my thesis. I've got a decent draft of the introduction (basically, the paper I wrote for the AAWP conference last November), and a 3/4 finished draft of my first chapter (I need to add in some Icelandic Flash analysis, for which I picked up some anthologies while I was in Iceland in August and September). So, now I'm onto the second chapter.

Before I left the country in August I was working on an outline for chapter two. I was struggling a bit with it, and so it was good to set it aside for a while. When I got back I spent about six weeks writing a whole bunch of flashes. As you all know, the creative writing well had pretty much run dry by the end of last month and I was excited about getting stuck into chapter two again. This is how it is with a PhD, you work intensely on one part until you, quite literally, feel ill at the sight of it on your computer screen. Then you move onto something else. For conventional theses, there are several parts to the document, including a literature review, a chapter on methodology, and then the introduction, chapter, results, and conclusion. For mine, being a creative article plus an exegesis, there really are only two parts. The creative article (in my case a single author anthology of flash), and an exegesis (which basically sets out my contention for the creative work and arguments supporting that contention).

I'm more or less working my way through the exegesis chronologically. So, I'm doing the introduction and the chapters in turn, and then the conclusion. However, I'm writing the creative work along the way. A lot of candidates doing my kind of PhD write or create (in the case of visual and auditory art) the article first, and then write the exegesis afterwards. What those candidates risk is the creative article not being informed by the research that went into the exegesis.

For example, had I written my creative article all up front, it would probably have consisted only of family based stories, but as I've kept researching, I've found that other kinds of stories will also bring variety, as well as, illuminate some of the arguments I have about ambiguity (through fragmentation), and modern Icelandic flash being an extension of old Icelandic saga writing, and also of identity, which is also fragmented (see how that all jigsaws together? Neat, hey?).

So, back to the thesis writing.

It can get a bit messy. For example, as I said, I have the introduction in fine draft form, but I don't have all of chapter one, I'm still working on the outline and the arguments for chapter two, and of course, chapter three and the conclusion are not even outlined yet, though I have written a preliminary outline for chapter three. I also have to remember things like finding appropriate Icelandic flash to fit my arguments, and keeping track of the reference lists for each segment of the exegesis. And I have to make sure I've written enough flashes to cover the segments of the creative article I want to do.

So, how to keep this all straight in my head?

Well, being a visual person, I was rather attracted by the system set up by the candidate mentioned in this blog post over at Patter: Buffering your thesis.

I'm going to go to Officeworks today and get some index cards and set this up tomorrow. I'm pretty excited about it - it requires some rearranging of furniture in the office though... I'll update again once it's set up and show you all.

Wednesday, November 11, 2015

Stuff that sucks, and stuff that doesn't suck...

This morning I took the route to Uni I was talking about on the blog on Monday. It went really well, though I was well and truly underdressed for the weather. This afternoon I'll walk home from the local shopping centre via a new route as well. If that is all okay, these will become my regulars because that ensures I get enough exercise every day, and that I get to my 10 000 a day step goal. I'm doing 10 000 steps a day until the end of next week, then I want to move to 15 000 a day after that. I'm trying to get my fitness up for my trip to Canberra on the 8th of December because I know Robbie will walk me ragged (he's quite the boot camp sergeant when he gets going). As well as this, though I know I'll be doing a lot of walking once I get the dog, and the dog will need walks to burn off energy after laying about in an office all day.

Today I saw the friend who unceremoniously dumped me a few weeks ago. She was polite, actually spoke to me once, to offer me her chair so I could see a presentation better. It was hard though, I feel so hurt, her being nice makes it harder - I'd like to be able to be angry at her - instead I just feel like I must be a horrible person that she wants nothing to do with me. I still have no idea why she is upset with me. She was nice enough today, but know that's basically for public appearance. I guess I'd better just get used to it though, we run in similar circles here at the university, so I can't avoid running into her. This sucks. Luckily, I have a private office to cry in.

The guys at my local cafe have been so nice this week. I have yet to pay for a coffee there - I know this won't be a regular thing, but I really appreciate their kindnesses.

I need to pull myself together now and do some work. There is plenty to do, I want to get at least a couple of thousand works of this chapter down by the end of the month so that when I come back to it in February I'll be able to dive straight back in.

I've just got to keep reminding myself of all the good stuff in my life. My family, my friends, getting back 'out there' and relearning to be independent. Getting back into walking - it feels great to be moving again - my body is very much designed to move vigorously (even though I'll never be a jogger), so getting back into walking makes me happy. The weather is getting better (okay, not today, though it is better than this morning), and the days are getting longer, and that means I'm generally more energetic and happy. There is a lot to smile about, really. I've just got to remember that stuff.

Monday, November 09, 2015

Shuffling the deck...

I know I keep harping on this, but you know, big changes tend to mean more big changes and that always means I harp on.

So, with Robbie becoming a gypsy, and leaving me stranded here in the mundane to survive the horrors of sameness all on my own, I've had to find a way to cope.

So, to cope, I've basically just shuffled up the deck and rearranged my life a bit - hey, he can't be the only one getting to experience something new!

As of today, I'm back on public transport. Well, not all the time, but a lot more than I was before. This is a massive step for me because of the agoraphobia I've struggled with for years. My post the other day about facing fears head on got me thinking about the fears I have kind of been shying away from in recent years. Going out on my own is a big one. I mean, I do still do it, but not nearly as much as I used to. So, today I took the busses to get to Uni instead of letting the Grumpy Old Man drive me. I wasn't completely on my own. Mr16 took the first bus with me, because, well, it's on his way - though honestly, he's been riding in the car with us for about a year now. He was ecstatic to be riding the bus again. That is his preferred mode of transport to and from school. So much so, that he was totally cool about go to the bus stop with his cane wielding mum. Mr14 was a bit miffed that he hadn't been invited along, I promised him tomorrow, but then I realised I will be car-ing it tomorrow because I have an appointment first thing somewhere other than Deakin.

I also determined to regularly take a packed lunch so that, a) I didn't starve to death and b) I would be more likely to stay at work until 5pm, rather than going home earlier because I hit 3pm and suddenly was STARVING.

What else?

Oh yeah, I've started working with my office door open. Which means not playing music or singing. I can get my music fix on the bus, I guess. I'll just have to torture the family more with my singing. The point of leaving the office door open is to, hopefully, meet more people on my floor. Unfortunately, all the other HDRs I know to speak to, except one, are on the floor above. So, I really need to make more of an effort to meet more people on this floor.

The added benefit of working with the door open is that I am more likely to actually work, than goof off, because firstly I'm not singing - as I've grown older I've found I am not really able to sing and work at the same time because I get so involved with singing I just forget to work - and secondly, people can see what I'm doing, so I feel just that little bit more accountable.

I'm back to wearing my Fitbit all the time now, and of course, I'm back on LCHF, though I will tell you, I gave up on the bulletproof coffee because I honestly just couldn't stomach it. I have discovered something new though. Double cream cream (I think the double might be in saying cream twice), mixed with a bit of instant coffee, to give it a coffee flavour, and the I add berries. Oh My God! Yum! And it's higher fat than yogurt, so bonus all round.

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