Thursday, January 23, 2014

Why I hate asking for help...

You often hear that the biggest problem with helping people is getting them to actually ask for help. Too often, people in need of help suffer in silence because they don't want to bother anyone and quite often when someone in desperate need finally does admit they need help, they are - mostly gently - admonished for not speaking up earlier.

I acknowledge this is a problem.

But today I want to talk about why I hate asking for help, because, to me, this is an equally big problem.

I'm doing a PhD right now, and PhDs are hard work. This hard work is compounded by the fact that I live with low vision - which is now getting lower. I am not the first person with low vision to study at a tertiary level, or even at a PhD level, not the first by a long shot.

Luckily, there are bodies founded to help people with low vision, and people who are completely blind (as opposed to technically blind, like me) to undertake tertiary education. For this I am very grateful.

So, at the risk of biting the hand than feeds me, I'm now going to vent about what I'm not so grateful about.

I was told by my university that as an 'on campus' PhD student I would have a workstation to work at 'on campus'. I was asked before I began if I had any special requirements with reference to my disability. Assuming I was actually going to be 'on campus' I told the faculty all my tech needs would be covered by Vision Australia. When I was assigned a work station, I quickly discovered that it was only 'technically on campus', and that it was in fact, not actually on campus at all, but on an adjoining campus 15-minutes-brisk-walk-navigating-lots-of-traffic away.

When I put forth the argument that this would negatively impact my study - because I have to choose which campus to work on each day; either the one with the adaptive technology, or the one with the workshops, study groups, supervisor meetings, and library on it - I was told they would 'try' to find me a work station on the main campus. That was over six months ago.

At the same time, I applied for an adaptive technology bursary from Vision Australia and received one after a lengthy application process. I was told I had a bursary to the value of $6000 to purchase adaptive technology and while most students didn't get this finalised until after uni commences, in February, I could be fast tracked because I was already enrolled and prove as much.

After discussing my needs two weeks ago, I was told it would take 2-4 weeks to finalise purchases and delivery of the desperately needed equipment.

This morning I received a phone call where I had to further justify my needs - and I felt I was being encouraged to cut back on what I needed, even though I had not exceeded the $6000 bursary I have received. I was also told it would still be another four weeks until purchases were finalised.

Argh! So, with less than four months until colloquium, I still do not have a workstation on the main campus where all the resources are, and the resources that are at my desk I cannot access when on the main campus, and I also do not have a laptop to work on away from my desk which means I have to spend time every time I'm on a university computer setting up their adaptive technologies so I can use their computers.

I am grateful that there is some kind of assistance, but I am very frustrated by how much I still have to fight for agency where it has already been promised. I am frustrated that the assistance seems reluctant to be forthcoming in a manner that would actually assist me when I need assistance.

I really wish I didn't need assistance at all.

When you make an offer or a promise to help, make sure you know your own limitations, don't offer to help in a way you either cannot afford the resources or time for, or really just don't care to understand how deeply vulnerable the person asking for help feels in having to ask for help. Believe me, most people don't ask for help unless they really need it when they ask for it.

Tuesday, January 21, 2014

When learning to read all over again feeling like letting go...

This is a photo I took of my first reader - in Braille, that is.

As a friend said to me earlier, Ari and I will be on the same journey this year, both learning to read. Him, print, and me, braille.

I am excited - I do love a challenge.

At the same time, I have felt like I was choking on my own breath all morning. At first I put it down to nerves. When I first tried my hand at braille when I was 10, I just could not get the hang of it. I felt compelled to look at those raised dots all the time and try and read them by sight - which many people who work with the blind, do.

However, in my assessment meeting this morning - which was to check how sensitive my finger pads were and whether or not I could properly feel all the dots - I did very well. Apparently, I'm a natural. That's a good thing.

The feeling of choking didn't go away with that knowledge, though.

It wasn't until I was on the way home that it dawned on me why I was feeling the way I was.

I feel as if I'm letting go of something that I've been clinging to all my life. In a way, it feels like I'm giving something up.

That thing is the ability to see what is in front of me.

You see, after going through the first five letters of the braille alphabet, and reading words made up of combinations of those five letters, I was handed a form I need to send back to get my materials for the braille course and even though the form was printed in relatively large and dark print, I was very aware of how difficult it was for me to focus on the letters.

It was almost as if by letting myself start to learn braille, I was trading in a little more of my vision.

Of course, this isn't true. The truth is, my vision has been failing for a few months now, but I have been resisting that knowledge. I have been forcing myself to focus on squiggles on pages, and while I was reading the braille my poor eyes had a chance to relax for the first time in a long time, and so when they had to focus on print, they needed to warm up again.

I don't want to give up the ability to see, but it's not really my choice, I can continue to fight it, but in the end the darkness will win. 

So, I have to embrace the darkness and learn new ways to live with new skills. Hey, it'll be like a superpower, I'll be able to read with the lights off!

Thursday, January 09, 2014

Tiptoeing Around the Internet…

Lately, I've found myself tiptoeing around the internet. Afraid to say much on Facebook or Twitter because it seems there is always someone ready to jump down my throat when I do. I also am very aware that I more often than not, recently, read other people's status updates looking for something to be wrong, to be critique-worthy.

I've been thinking about why this is.

Well, the internet is first and foremost a source of information, right?

When Facebook first started up, people used to post status updates like, 'Just had lunch, might go for a walk', for which people were mocked.

So, now people who don't want to be mocked, mostly disseminate information. As the Grumpy Old Man said to me earlier - my feed is like an advertising campaign for how to be a better person! Which is all good and well because goodness knows there is a lot of information out there and we can't all search the whole net on our own.

At the same time, it became a well known thing that a lot of what is posted on the net cannot be trusted. How many times have you seen information pass itself off as fact, and then shortly after someone posts a link showing that information up to be false, a hoax, or just misinformation.

So, we all became wary, and then we became good at spotting the holes in pieces of information which might be a clue that that information is just not right.

I think a lot of people on the net now spend a lot of time looking for information that is subjective, not objective, nor properly researched, not properly argued, too much of a generalisation.

Post-modernism tells us all information is subjective, of course, but theory is moving beyond post-modernism, to post-post-modernism, so I guess we'll soon be able to trust someone.

At the same time, I think there is a lot of preaching happening on the net.


It's a tidal wave of 'I really think if you had this information you would be a better person than you are right now - you would be the kind of person I could like and respect'.

Everyone has an opinion. There seems to be a race to find the most well respected sources of information to support individual opinions. Of course, the problem is that everyone seems to have a different opinion on most things, so there is also a race on to belittle, or poke holes in, other people's points of view.

And… No one appreciates being preached to. The choir (those who are already converted) will sing the praises of the preacher and the preacher's god. Everyone else will feel judged, if not as evil, then as stupid, and will seek to undermine any argument.

Preaching simply doesn't work.

So, being guilty of preaching, I find myself winding it back a lot and, at the same time, I feel I have to be aware of my self-defensive need to poke holes in beliefs I do not share with others.

It's made me all a bit anxious about the being online, but maybe it's just part of a bigger learning curve.

Hello! This is your wake up call!


Yesterday sucked. On top of what I wrote about coming to terms with my sight, the friend I mentioned who is fighting for her life was told her cancer is the incurable variety. She's full of fight, and is determined to stick around for a long as she possibly can, which all of us a grateful for! They say a positive attitude makes all the difference, and she has plenty of positive attitude!

So, this morning I woke up feeling pretty hung over. Pretty worn out by yesterday and not really up to picking myself up and getting busy living.

Anyway, here I sit at my desk. Two more stories written (first crappy draft, that is, but two more crappy drafts than I had a few hours ago).

I decided to take a break from writing and do a bit of reading instead. I remembered my supervisor had sent me an example of a colloquium document just before Christmas to give me 'an idea' what it would entail, although she emphasised that every colloquium document was different and so mine wouldn't be exactly the same as this one.

It turns out to be quite a chunky document. I knew I had to write a couple of chapters and also submit a chunk of my original creative writing, but I guess I hadn't really considered how much writing - as in wordage - that would be. So, I scanned and checked the document word count… Now, that was a bad idea, because it was just shy of 20 000 words.

20 000 words, in four months.

I can do that, right?

Sure I can - I've written about three thousand words already!.. Shit!

They tell you your PhD will be about 80-100 000 words, and that sounds like a lot, but you think, oh well, I have 3-4 years to write those words in. Then during induction they tell you to get those 80-100 000 polished words, you're probably write more like 320 000 words… Hmmm, okay, so to write my Masters I probably wrote 130 000 without even realising it...

When you're at the initial reading and researching stage, that still feels a way off in the distance future though. And then suddenly, your colloquium is four months away and you wake up one day and realise you have to 20 000 coherent academic words on paper in just four months times (which means you'll probably have to write 62 000 to get there).

Panic stations!

Except, I can't afford to panic now. I just need to get on with it.

That is my life, today.

Wednesday, January 08, 2014

Asking for what you need…


Today has been a bit draining. Since about August last year, I have been trying to get a desk on Burwood campus of Deakin. The disability liaison officer I had been working with moved on from her position at Christmas time, so today I had an appointment to meet the DLO who would be taking over my case. She's lovely. We have a plan, which is good, but she told me I wasn't properly registered with the DLO because they had no medical report about my disability status - that is my low vision status. Why the last DLO didn't tell me this is beyond me. Without being properly registered they don't have the proper authority they need to advocate for me. So, I contacted Vision Australia to see what they had on record regarding my last assessment. They had an old letter from an optometrist I saw in 2009 who apparently assessed me as NOT being legally blind. I know, what the actual hell???

So, I had to make an appointment to see my regular optometrist again for a new assessment, including a field of vision test. Today, I've had to tell three different people about the ins and outs of my vision deteriorating in the past couple of months in particular. Verbalising it out loud has had me on the brink of tears for most of today. The optometrist listened to me describing how I can no longer read text on paper. My eyes just don't want to stay focused long enough. This isn't really surprising as most people lose some of their ability to focus up close after the age of 40.  She did all the tests and two lots of drops. And then she furrowed her brow and said there was definitely a deterioration of my vision. I was all like, yeah, that's what I was telling you. She told me it's not just my near vision that is down, but my distance vision as well. She's not happy. She said there is nothing they can do to help me with improving my distance vision - I already knew that, but she still wants me to see someone at the eye and ear hospital.

She also said there is some refraction in both eyes, she says this is not unusual as our eyes age, but that some optometrists consider this to be a pre-cataract stage. She couldn't say whether or not this was likely to develop into cataracts or if it was just a part of the eyes ageing.

So, I've talked to one person about possibly starting to carry an ID cane, to indicate to other, particularly in traffic that I have low vision. With another person I have been referred to the braille clinic to begin learning braille (this apparently takes about 18 months of consistent work, it's like learning a new language), and with the third person a medical confirmation of what I know anecdotally.

In relative terms I've got nothing to complain about. I currently have a friend battling advanced cancer - losing your sight just doesn't compare to fighting for you life. At the same time, I feel emotionally drained from today and from facing the reality of what has always been theoretical and something to deal with 'one day' being real and now.

Monday, January 06, 2014

Migraines, Work, and Extraneous Thoughts...

I have been suffering migraines this week - hence the lack of posting in the past few days.

For some reason they seem to be worse at night and most nights I go to bed with lots of pain around the front and top of my head, and also considerable nausea. I don't know what is causing this. I have been experiencing a very deep tone tinnitus as well, I'm not sure if this is related or just coincidental.

I've wondered if this is some sort of virus, as the Grumpy Old Man has also had a bad headache for days now. He thinks it might have something to do with the awful smell emanating from the roof cavity that one night. I don't know.

I'm profoundly aware of my sight deteriorating now, and am think it is definitely time to go see someone about it. Even as I write this blog post on my larger-than-life font screen at work, I'm straining to see the text - something is definitely up.

Anyway, whinge, whinge, moan, moan…

I have made it into the office today and that is a good thing. I need to get some writing done, and maybe sort a few things as well. I constantly feel as if I'm not doing enough. I was reading the Victorian Writers magazine this morning and noted one of the article writers is doing a fellowship overseas, and that she has won three prizes in the past couple of years as well. I don't even enter competitions. Maybe I should, I don't know, I'm afraid it might divide my attentions too much. Then again, in this arena you have to be noticed and winning awards is definitely a method of becoming noticed.

I saw the Australian Arts Council has funding for artists with disabilities to the value of $300, 000 (in up to $10 000 grants each)
. To get a grant you have to have a project which is both worthwhile to yourself as an artist, but also to other artists. You also need some sort of profile, some sort of recognition. I don't know if I have that or not. Is merely being published enough? Or do I need to have also won something? I'm going to have to ask around. The application deadline is only 7 weeks away.

I'm still stuck at Greenwood. The disability liaison officer who was dealing with my case - to be moved onto the main campus - has left Deakin. So, now I have to get to know another officer and try to sort this out. I have a great desk, it is just a fairly long walk from the main campus (okay, it's a 10 minute walk but it is along a busy road with many businesses where cars pull in and pull out, and every time I need to go onto the main campus, I have to drag a lot of stuff with me, which exacerbates these headaches). Wow, I'm really giving whinging a go this morning!

Anyway, so I was talking to the Grumpy Old Man about it all this morning. You see, this desk is great to work from in that it is quiet and all my stuff is here. But being the kind of person I am, I find I need to take a break from my work every 20 minutes or so, but more than that, because I have all these channels in my head constantly whirring away, I have a build up of extraneous thought that I just need to get out - I need to have breaks to chat with people, and those people are just not on this campus, nor is there anywhere to meet anyone here, there is no cafeteria where you might strike up a conversation - and who knows, a friendship - with someone, and dispel all the extraneous thought. So, I need to figure this out. I need there to be an office on Burwood campus in the next few weeks that I can move into.

Here that, universe?

Thursday, January 02, 2014

Thankful Thursday!

Being thankful is a great way to increase the joy in your life. So, I thought it would make for an excellent second post of the year for 2014.

Here is what I am thankful for today.

  • Whatever created the awful stench in our dining room ceiling last night waited until after the festivities to make itself known! I was sitting in the lounge room at about 10pm last night and decided to go into the kitchen to have a late night snack. As soon as I stood up, my nose wrinkled in subconscious displeasure. There was a distinct smell of rotten fish in the air! I followed the smell to its strongest point and realised it was emanating from the air-conditioning duct in the ceiling in our dining room. It was foul to say the least! The Grumpy Old Man and I could not understand how it had suddenly appeared like that, either. We've had previous experiences with house ghosts and it occurred to us that perhaps we had a particularly pongy house ghost on our hands - either way, the decision was made to call the real estate agent today and get the roof cavity investigated. I did go to bed feeling very thankful that stench hadn't descended upon us on Christmas Eve when we had our first lot of guests and wouldn't have been able to call the agent!

  • The smell was gone this morning! So, theory one, our pongy house ghost has left us! Let's hope we're wrong about the pongy house ghost because, well, they can come back and it's not something we care to have repeat performances of. Theory two, some critter dragged a rotting corpse of some other critter into our roof cavity last night for a post-New Year's feast and subsequently devoured the stench and so the stench is gone! This seems most likely. The Grumpy Old Man is concerned the devourer might be a snake, but I'm not even going to consider that possibility (la la la, I can't hear you, la la la!) - I'm just thankful the stench is gone!

  • I'm thankful that despite my best intentions to go to Uni today and work at my desk, the office is still officially closed until tomorrow. I could still go in today, but there would be no-one there and I don't know where the light switches are (no, really, in six months I still haven't worked them out), and would much prefer to have milk in my coffee, and hot water for my coffee would be nice too. So, why am I thankful? Well, I'm going to do some research work from home today instead - and my research assistant is coming over to help me -, and get the house tidied, and do some washing.

  • I am thankful for family time - being able to spend some time together without all the hustle and bustle of school days and work days is fabulous. These holidays feel just long enough - we've been on holidays two weeks tomorrow and that time has flown by! While I have to get back to work now, I know we'll still have 3 or so days a week to just hang out for the next four weeks before school goes back - not quite enough time to get bored as we still have so much to prepare for this new working year, but just enough time to reconnect more deeply and prepare ourselves emotionally for those busy times ahead!

What are you thankful for? Come join the fun at A Parenting Life!

Wednesday, January 01, 2014

Happy New Year!!!

Love me a new year. It is a rare thing if I wake up on New Year's Day feeling flat or depressed. Today is certainly not that kind of day!

I feel all tingly and energetic and full of the possibilities of a new year! It is quite a buzz.

This year I'm looking forward to:

  • Seeing Ari off to school for the first time ever! The child has grown up attending the primary school as a 'baby brother at the school gate', most days, since he was a newborn. He basically feels as if he owns the place already. He was very happy to hear, this morning, that he starts school this year! He wanted to know if he could go to school today.
  • Seeing Lukas off to high school. It'll be a new and different world for him, but he seems willing to embrace it despite not having any friends going to the same school. I think it helps that his two best friends from primary are also going to different schools from one another, so they're all in the same boat. Lukas is very excited to be learning to play the guitar (he'll spend at least three hours a week at school doing this, as well as practice time at home, so he ought to be playing something by the end of the first term.
  • Completely my colloquium in about May - I have a date for early May but have heard these things can be delayed a few weeks as people's schedules tend to be rearranged. I know I'll be done by the 3rd of June, because I only have 12 months to complete it in. It's a bit scary - you know, presenting your theory and research in front of a panel is never going to be a cake walk - but once I'm done I'll be a proper 'candidate' and that is very exciting!
  • Hopefully getting my novel published this year! Nothing is set in stone, of course, but it is looking very promising that 2014 will be the year I can officially add 'novelist' to my titles, woo hoo!
  • Hopefully getting work! Once I have my colloquium, I will hopefully be offered tutoring work at the University, that is the very first rung on what I hope will be my illustrious career in academia! I'm very excited at that prospect!
  • Doing more painting! My brother gave me a huge canvas for Christmas on which to paint him a commissioned piece. I'm a bit nervous about it, but at the same time, I'm keen to have a go - see if I can rise to the challenge!
Don't look now, but it's a blank canvas metaphor!

It's going to be a great year!