Three years on...

Tomorrow night, Monday 10 July, on 4 Corners is a program about dementia. The woman, Suzie, that this is about is 58. She had been diagnosed with frontotemporal dementia. I read a blog from Alzheimers with a list of 10 signs of frontotemporal dementia. List numbers 8, 9 and 10 are very similar to what I feel from my stroke. I recommend that you watch 4 Corners and become aware of this.

I hope that many people have become aware of stroke as well. I've written previously about stroke, but I feel I need to encourage people to read about this and become aware of stroke. Too many people throughout the globe either die or suffer downright from a stroke which is connected to the blood in their brain.

Three years ago I had a brain aneurysm surgery, and ended up with a stroke. I spent 7 weeks in BIRU – the Brain Injury Rehabilitation Unit – at PA Hospital. I found out, the second day I was there, about my stroke during my brain aneurysm surgery. I couldn't talk, I couldn't even read or write, until later in those 7 weeks. Today I read, on a Facebook page link to Brain Injury Explanation, about neurofatigue, and then a link to the USA National Aphasia Association, which explained the types of aphasia. Mine was “very dense global aphasia (receptive and expressive)”.

Both of these descriptions are very much like me. I get fatigue around lunchtime, even if I have forgotten to eat. I usually don't make afternoon appointments because, by then, I already feel so tired. It's my brain – ABI (Acquired Brain Injury).

The description about global aphasia said exactly how I had felt. It was the “...most severe form of aphasia. People with global aphasia cannot speak many words and sometimes don’t understand speech. They cannot read or write.” If you can, have a look at the short video of a stroke victim with global aphasia. I felt that way, too.

I found something I wrote on 22 July 2014, after I had been discharged, so I've printed it here. I know that some of what I said then was.... strange, maybe funny. That was only 3 months after I had the stroke, but it was how I felt, back then.

My ideal of writing has almost vanished. It was my catalyst up until I went into PA, but realising I had a stroke kept me from writing. Reading, too. Finding out about my presentation had nothing to do with my past. I had lost most of that. Including work. And no 'real' income.

After going home on 6 June was hard, but it was my chosen date. A contact with my lawyer was hard, I wasn't able to talk to him. My roof was filled with Clare, my ABIOS, who I spoke to about Greg. She would contact him and give him some deals about me.

We would find out, in a call I received from Greg, that he was not happy. He didn't want to talk to Clare, which upset me. I had to agree, holding my hope that he would still represent me. I found out, just a couple of days after I'd had to wait, that he didn't 'trust' me. I felt that the appearance of me was now reposetant to my – many – years back. He said he was not going to help me. I should have felt good, but he wound me down. I cried, deeply, feeling totally sad, totally deprised of my claim. I thought “Well done Greg – you are no longer an adult.”

I had an application at Inala Centrelink, and after my doc completed my medical link and I provided a copy of the PA discharge (6 pages!!), I was told that this would be 7 weeks. My bank income was nearly gone, so I filled in my ATO application and submitted it. I would get another $8k – so helpful!

I was a Kiwi, and I had had a good day earlier this year at OzKiwi. They gave me some top info, so I applied it to my RRV – and got it! I told Es to apply, and she did and got it. Very recently I read an article from David Faulkner, Nzer, who had been the first RRV application and just this month gone his Aussie citizenship. It turned me into a total hopeful, because by Feb next year we would be – official – citizens. Then Centrelink would not be able to cut me off! I just don't believe that, 9 years after I've been here, I can't be made to go by Centrelink. Surely they can appreciate my DP. I'm waiting.

It's taken me 2 months to accept my failure of working. I've got a 6-month limit at the moment – I can't work, can't fly, can't drive. Actually, thats 4.5 months now, but that is so hard.

This week I decided to have a garage sale. I started in the garage and went upstairs. So found I've found heaps to get off, but I put a required proposal for my FB friends and got no answers except for one, Deb, who will help me for the sale next weekend. I feel pretty disposed. I wish I could move.

I read this a couple of days ago now, and I recognise a lot of errors I had made. I don't think I had felt bad about them back then, but these days when I write something I don't immediately publish it because I know I can still make mistakes. Hell, I still read my publications and find mistakes I didn't even see when I re-read them before publishing! I put that down to my stroke, my evil, wicked, malevolent, frustrating, disappointing and embittering stroke.

Some time after this tale was written three years ago, 22 July 2014, I found something that I had noted from Catherine M Wilson's book series “When women were warriors”:

Death is our destiny, and nothing matters. In the depths of the abyss the end of all things lies. Death is too small in a word. It is annihilation, not of my life alone, but of everything that lives and of the world itself. In the end the whole world will fall.

That's how I have to live. Prepare for death, my destiny; not for my life, because I don't really know what I can do these days. Will I ever have another stroke? Will it kill me? What matters? I had a very full life up until 22 April 2014, but I know I can't change what happened. I can only accept it. Sometimes I do, sometimes I don't. My worst period of time was November 2016 when I didn't felt I had any support, any help. Since then I have found out that yes, I did – and yes, I do. I still live alone, with my 15 year-old beautiful American bulldog, Jordie, but living alone has taken me the last 6 months to accept and I have a wonderful relationship with my daughter and her partner.

These days when I'm writing a blog – like the last one, about billionaires compared to poverty – I have to feel undamaged, unhurt. I know how I feel when I write something, but I can't publish it until I know that it's not a definitive future for me. How I feel about money is my own issue, no matter how much I wish I had more money. How I feel about QIRC is my own issue, no matter how much I wish I had won. How I feel about my previous friends is my own issue, no matter how many walked away after my stroke. I will write my own feelings, but they are mine - whatever I'm saying for many other people to read.

I had felt that same way when I read from 22 July 2014.

I ask readers to watch 4 Corners, about frontotemporal dementia. It is up to you to educate yourselves, to become aware of the damage or injury in the brain. How you feel is not up to me, no matter how much I would love to be able to argue with people who don't agree with me. You don't have to comment, but I - we - need support from you.