On 3 July 2013 I was diagnosed with a cerebral aneurysm, which later turned out to be two. This blog is a journey into my brain as I deal to the aneurysms lurking there. Along the way I'm calling on the collective proverbial wisdom and sage advice of some recognised (and maybe a few not-so-recognised) writers for aphorisms which complement my journey.

This is not just a personal journey but also a journey of discovery for everyone who has, had, or knows someone with a cerebral aneurysm.

Wednesday, 16 March 2016

“She became an illusion of herself. It was easier to cope with people that way” ~ Tina J. Richardson

 Earlier this week I had an appointment in the neurosurgery department at PA hospital. I'd been there before - a year ago - when Dr Webster was in surgery. I hadn't heard anything at all from Dr Webster, but the notice I received about the appointment this month included his name. So, I thought, I'd get to see him around 2.5 years since I had actually seen him - even before he was my neurosurgeon.

My friend Jill came with me, and we took the train in - a lot easier than driving and having to pay for the carpark, but it was a lot longer. We walked from the station to the Buranda shopping centre and had a coffee before we went across to PA. We were early - about half an hour early.

By 4pm, an hour later than my scheduled appointment, we were finally called in. Not to see Dr Webster. I had no idea who the doctor was we were seeing; I'd never seen her before. I have no idea whether or not she said her name to me - I can't remember. I know that she talked to me about the stroke which I had had at my surgery two years ago, but I can't remember just what she said to me - except that it sounded like she had no idea of how I'd had to live since then. What I do remember is something she asked me. Did I want to work? Oh yes, I said, I had already applied for jobs but never had any responses. Well, she told me, you seem a lot better. I started to feel annoyed that I was with someone I didn't know, who didn't really know anything from my file, and seem to have no idea of how I felt and how I had recovered. But that wasn't the last step for me.

That came next. She mentioned my second aneurysm... in my brain... which I have spent more than two and a half years thinking that it is around 5mm because I was told that two and a half years ago. This doctor, I don't know her name, said to me that my "1.5mm brain aneurysm" wasn't growing so I didn't have any problems with it. Ummm... excuse me???? 1.5mm? I was told two and a half years ago that it was 5mm. I had no idea whether it should have reduced or grown. I had no idea why they - Dr Webster - had called me in. I had no idea why this female doctor was looking frustrated at my response to what she had said to me.

I was now in tears.

For the last two and a half years I haven't worked. For the first year after my ex-employer fired me (only 2 months since my brain aneurysms were diagnosed) I relied on my own income, until it had dwindled to nothing and until - after my surgery and stroke - I got onto DSP. Since the surgery I haven't been able to work. Yes, I have applied for any job I think I could easily do, but, so far, I haven't even had a response from my applications. Yes, sometimes I can talk fine, but when I get tired, or when I get upset - like up in the neurosurgery department this week - I lose much of my language. Sometimes I stutter, sometimes I forget my words, sometimes I just shut up. I've watched some Drum or 7.30 programs on ABC, and I feel very disappointed in myself because I know I can't talk so easy the way these people do. The way I used to.

The appointment in PA Hospital's neurosurgery department was a complete waste of my time. And Jill's time. I am so angry with why they called me in, when they didn't even tell me anything real. I am so angry that my appointment letter said it would be with Dr Webster, and - again - he wasn't there. I am so angry that the doctor I spoke to this week did not approach this appointment in a decent, respectful manner and didn't care about the fact that I had a stroke and am probably about as far as I'll ever get on recovery.

It's nearly two years since my operation and stroke. I'm out of PA Hospital. If my existing brain aneurysm is 1.5mm - when I had been the last two years thinking it was 5mm, the same as I had been told - I don't care. This appointment has simply verified what I had already planned - if my second brain aneurysm ever does end up getting bigger (yes, doctor, it does happen on stress problems!) I am in control of myself. I will let it rupture.

Living here does nothing for me any more.

Thursday, 18 February 2016

“You feel fine, and then, when your body can't keep fighting, you don't.” ― Nicholas Sparks

This month I'd written about feeling good and the next one was about looking after my ABI. Back then I felt pretty good for how I was - feeling great where I'd gotten to in my recovery. But today I've dropped back a couple of steps.

I've known that so many people who had been through their brain aneurysm have fully recovered, went back to work and felt great. Others felt very similar to me - up and down, up and down. For me, this is related (I think) to my stroke, but I still feel that my aneurysm sticks its middle up at me and, even though it's clipped, just wants to feel that it still reigns inside my brain. Either that one or its the second one, still in there, not fixed.

Last night my beautiful dog was very sick. She wandered in the yard and found any sort of grass she would eat, she breathed much faster than usual, she drank two bowls of very cold water one after the other, she laid down and I worried about her. She would stop breathing often, and I'd lie beside her and hold my own breath until she started again. Some time this morning I had to go to bed. She slept, and this morning she is much better. I don't think I am.

Sometimes I think I am working on my recovery and am doing very well. I have started reading again, most days. I am still volunteering at the Redcliffe Art Gallery and once a month I do a 4-page newsletter for them. I have enrolled with Estrada's Diploma of Counselling and I'm getting through it fast. I occasionally write my blogs (I've done a total of 26 so far this year). I occasionally update my main website Reibus. I am the secretary for the Redcliffe Peninsula Poets group and I've designed a logo and some administration paperwork. Recently I've even joined the Labour Coalition Party and I read pretty much everything they post because, for me, fighting the extremely bad policies thought up by the current LNP government is my future.

But my recovery has dropped off this week. I'm wondering if some of this can be blamed on summer. Far. Too. Hot. I am so tired. I can't ever seem to sleep a whole night - 3 hours would be the max. Most times when I'm reading I'll find myself asleep. I pack up and go to lie on my bed for a decent sleep, but I can't sleep then. I am so hot - even lying down makes me even hotter.

I still don't have the decision from QIRC and it's 9 months since the court case, and wondering ever single day drags me down. I've planned on what I need to spend, because relying on my DSP will keep me in poverty. This year I've paid my car registration, RACQ for my road-help membership, the dues for both of my websites and ACA membership in relation to my Diploma of Counselling. Far too much for my income, so I've had to borrow from Centrelink. Doing that reduces my DSP for 6 months. That becomes a revolving situation - I can't save anything while I'm paying this back.

Perhaps I shouldn't be telling you about this... but getting it off my chest might help me.

This life is so different than I used to live. Sometimes I don't think my body will keep fighting.

Wednesday, 10 February 2016

I have brain damage; deal with it! ~ Sharon Stone

Since I discovered this little gold thing which Sharon Stone said last year, I feel that this is definitely me as well. Of course I have brain damage! I had a brain aneurysm; I had surgery in April 2014; I had a stroke; I was locked into BIRU for 6.5 weeks. 

Sometimes I feel I'm one of the very few who suffered both of these things in Australia. I'm a member of Aphasia group but it seems that I'm the only one of them who had a stroke with my brain aneurysm. I'm a member of Synapse group but it seems I'm the only one of them who had a stroke with my brain aneurysm. I'm a member of STEPs... etc, etc, etc.

I know there are a lot of people on the BASA Facebook page who had a stroke with their brain aneurysm, but I very rarely have heard from any of them. I would love to know: 
how many of those who had a stroke with their brain aneurysm are able to talk, read, think, walk, feel?
Brain aneurysms are not ever something that a "normal" person can just wave away. ABI - Acquired Brain Injury - or TBI - Traumatic Brain Injury - often happens to a person who has had their brain aneurysm worked on in surgery. 

The Synapse "Acquired Brain Injury: The Facts" booklet, page 4, says
People with an Acquired Brain Injury do not necessarily experience a decline in their overall level of general intellectual functioning. Rather, they are more likely to experience specific cognitive changes that lead to difficulty in areas such as memory, concentration, communication and behaviour.
Bayshore in Canada said the
most common causes of non-traumatic ABI include stroke, hypoxia, brain aneurysm, brain tumour, prolonged exposure to toxic substances, alcohol/drug abuse, and meningitis or encephalitis resulting from viral, bacterial, fungal, or parasitic infections.
Brainline.org has a very well-written page on brain injury, which reviews how this can be discussed with other people. They have written about how our brain overlooks everything, such as physical, cognitive, communication, emotional, behaviour and social functions.

Karingal, in Victoria, Australia, said that brain aneurysms are one cause of ABI.
Pate Rehabilitation in Texas, USA, said that ABIs are from many brain injuries which include aneurysms.

Neuronetwork in Ireland agrees that stroke can come after brain aneurysms and cause ABI.

The Brain Injury Alliance in New Jersey, USA, has a pdf booklet which gives basic information about brain injury and how they are treated, and includes BAs in "acute" brain injury. This different word is also used in Europe, but means the same thing.

Am I going on? Well - just read any of these! This is throughout the internet-accessible countries and includes real existence and real treatment. If any of you have had ABI or know someone with ABI, please make sure that you have found information about how to get it treated. It is definitely necessary at least in Australia! And if you are still reading on, please make sure you know this:

I have brain damage; deal with it!

Friday, 5 February 2016

"Mistakes are always forgiveable if one has the courage to admit them" ~ Bruce Lee

Being the administrator on the Brain Aneurysm Support Australia Facebook page occasionally discouraged me. I reckon I've had a Google bed  whilst I'd looked for so much information for BASA. I now have a l-o-n-g bookmark section! Some of the information seems very blah, some of it is repetitive, and sometimes I have to put in different words in Google to try and find an article about something which has caught my attention. Some, though, really do work.

This morning, on my own Facebook page Brain Aneurysm Research Funds, I had listed a few blogs which I have found. These are so good for anyone with a brain aneurysm, gone or still there, and ABI or TBI which can often happen to a BA survivor. These days I think I have ABI. These blogs are:

Each blog is for the author's feelings - like, for instance, Kara Swanson is very happy, while Will T's blog is very much anti-life after his BA let him down. Have a read - they're all worth it.

Recently I had signed up to the ABC Active Memory brain games, and sometimes I'll follow them onto their website and join in if the game appeals to me. This morning it was a brainteaser called "The Password". My brain didn't work the way this finished... but I think that many, many people who read something like this brainteaser would do just what I did - think "logically". Have a look at it and see if you got the correct answer!

I'd found the PACE program (Positive Action towards Career Engagement), during my search for anything for BASA earlier last year. I joined it, and I went to meet my mentor, Steph, at her ANZ branch where she is a manager. That lead me into my interest for any courses I could have done, and I found Estrada College. I have signed up for a Diploma in Counselling which starts next week. I could have gone to university, but right now I need to keep recovering, and I feel that this diploma will help my recovery and will help me in any relationships I seek with people in my area who have an ABI or TBI from their brain injury.

So, how do the blogs I mentioned earlier and the ABC brainteaser and the PACE program work in together? For me, these are steps towards my recovery, and slot in with many other things I have found over the past months since I got out of hospital. I might have written, sometimes, with a feeling like Will T, but mostly I feel like David or Kara or Heidi. I know that it's a hard road, and maybe I'll never be exactly how I used to be - but you know... sometimes I feel that my BA and stroke have been a step into a wonderful future. Maybe I'll never get as far as I'd love to, but I feel good... very good about where I am.

And I'm still here!

Saturday, 23 January 2016

Depression is the inability to construct a future. ~ Rollo May

Sometime last year - maybe August but I've forgotten when - I had started paddling with the local dragonboat paddling group. They practiced one and a half hours on Saturday mornings, too much for me when I was still recovering from my stroke - the physical stuff didn't relate to my ABI, but it didn't help my brain. So I went on to the different paddling group who only did one hour and wasn't as tough as the earlier one.

This other group came out of breast cancer sufferers and even though I didn't really feel like I "fitted", I felt welcomed. I told them about my brain aneurysm surgery and my stroke, and they told me that supporters were welcome. Even with a history back to my grandmother - who died from a heart attack after she had a mastectomy somewhere around 70 years old - and my own breast scans five years ago when they found a benign tumour, I felt I was being accepted because of my own ABI. I paddled almost every Saturday morning.

I was invited to a morning tea celebration which was paid for by a supporter who had lost his own sister to breast cancer. I felt "at home" at my first meeting with so many people. I paddled every Saturday when the weather was good.

In September I received an email about the AGM, and I went to that. They discussed members' costs, and I cried a bit about myself - I wouldn't have chosen to do so, but it overcame me as I realised I couldn't afford their whole fee. They told me that I only needed to pay the $30 to become a member, and that my full payment could be held back until I could afford it. Once again I felt welcomed.

We had a pink day celebration in November. We went to one of the member's home for a "candle party". In December I went to Gold Coast with them for a christmas regatta, and paddled twice before it was too difficult for me. There was a local christmas stall which I helped with, and a member's christmas party at another of their member's home. I took along a Secret Santa present, and got one for myself!

We started again in the first week of January, and I planned to paddle as usual before christmas. This month I got to the first paddle practice and took off the second week because the weather - and wind - was lousy. Then yesterday I went back again, looking forward to yet another paddling. Until one person broke me.

I knew that paddlers had to pay for the insurance within the club. I knew that I had told them that I couldn't have afforded it back then. I knew that I was still waiting for QIRC to send me a decision when I hoped and hoped and hoped that it would end up financially definite for me. I knew that they had told me that it was okay - for as long as it might take for me to pay. I knew that the person who broke me yesterday morning also knew about me because she'd also been in that same AGM meeting. But she still chose to, loudly, in front of even new paddlers, ask me if I remembered that I needed to pay the insurance fee or that I couldn't paddle.

I replied that I couldn't afford it. I didn't say why I couldn't afford it, I didn't talk about why they had accepted me months ago, I didn't talk to the new people about my QIRC, I didn't explain to anyone why I was even there. I felt my immediate break working it's way into my tears. I just turned and walked; returned the paddle to the shed and went back to my car and drove off. No words. But plenty of tears.

I cried at home for an hour. I asked myself if my stroke was causing this sort of aggravation, but I couldn't answer that. I asked myself why that person so shortly ago had said that to me in front of new people who didn't know me from a bar of soap, but I couldn't answer that either. After an hour of tears I had no idea what I would be able to do for the paddling group - and what would I really want to do, because I now felt broken by them.

Yesterday I flicked all of that thought to the back of my mind while I had a wonderful afternoon with a friend and her motorbike. This morning it very briefly popped back, but I know now that I have decided I can't go and "support" that group when they didn't support me yesterday. I don't think I would ever have behaved in that very bad way that one of their members behaved to me. I don't know if they have spoken to her, I don't know how they would have reacted, but I can't go back. I paid $30 to be a member of their group, but now I'm not. They are entitled to use that money to support their group.

Now I need to find a different future for me.

Thursday, 14 January 2016

"It is not in the stars to hold our destiny but in ourselves." ~ William Shakespeare

Last year, in December, I had written about my past which now seems to determine my future. My daughter had said about me that I had "change[d] from this fiercely independent women (sic) into someone completely different overnight." I think that helped me on my real road to my new future.

After my brain aneurysm surgery in 2014 I also had a stroke. I didn't even find out about that for a week. Since then I have been through ongoing recovery: speech problems, living alone, depression, up-and-down, no job, no longer reading. Yet I have moved forward. I have recovered a lot of my speech - not all of it, but I accept where I am. I accept living alone because I have come to enjoy it - and need it. Sometimes I drop into a deep depression hole, but I will crawl out of that - maybe a few days or a week or even longer, but I know I can talk myself out of it. Up-and-down is the short step but I believe that happens to every living person. I still don't have a (paying) job but I have been a volunteer in the local Art Gallery for over a year.

After my BA story was published in the local Redcliffe newspaper I wrote my personal stories and they were printed on the National Stroke Foundation website, Synapse magazine "Bridges" and Brain Foundation magazine "Brainwaves".

The reading is still a problem for me. Before my brain aneurysm surgery I used to read every single day. I have tried it in the last year, but I can't recover to where I was with books. 

Most of my time now is spent online, where I find many articles or stories which are - compared to books - short. I read a lot online, post on the Facebook BASA (Brain Aneurysm Support Australia) page where I am still the administrator, have done hundreds of quote pictures which are on my website www.reibus.com.au, started another blog whosaidthisquote.blogspot.com.au and now do the Redcliffe Art Gallery monthly newsletter. 

I still haven't heard (yet) from QIRC, but I have some other - real - good steps into my future. My first book was published in November 2015 and I have a launch at the local library in March this year. On Australia Day this year I will attend the citizenship celebration and I will be an Australian citizen. That has led to my enrolment for study which I plan on using to help anyone with their brain aneurysm or stroke - Diploma of Counselling. And I know that, when I finally get the QIRC result, my second book Aneurysms with Aphorisms will get published.

My future is leaping ahead now!

Sunday, 20 December 2015

"Since we cannot change reality, let us change the eyes which see reality." ~ Nikos Kazantzakis

My personal "reality" changed 2 years ago. My ex-husband left me, I was diagnosed with my brain aneurysm, and my ex-employer kicked me out (after 7 years). I ended up in hospital 293 days after my diagnosis, and that day I ended up with my stroke. That is now my reality.

Today my daughter had written a lovely post on her Facebook page, celebrating her own 365 days - one year - after she gave up smoking. I definitely celebrate that with her, even though I have my own issues. I don't feel unhealthy about smoking, yet I know that it will get some people. Just like any drugs will get some people. Thin bones trip up some people. Migraine headaches take some people down. Stomach problems impair some people. And brain aneurysms hit some people.

My daughter said about me: "Seeing your mum change from this fiercely independent women (sic) into someone completely different overnight is a pretty hard pill to swallow... she's definitely different from the lady who walked into that hospital that day..." Yes, I know I am different. I had a stroke at that operation. I didn't know my heart would stop, I didn't know I would have a stroke. Now I live with what this damned thing does to my brain. Now I feel very different than my previous "fiercely independent woman". I know that this is my reality.

In the last couple of days I've found some very good information about TBIs, which I have posted onto BASA. This information would be essential to pass on to people who have contact with me - but I know that many of them - the most "normal" people - would never read it. The latest one was about 13 common things which we will have suffered. If you have any opportunity, please pass this onto your family, your friends and - if you still work - your workmates. It is essential for them to know this, and to know that almost every person who had a stroke, a brain injury or any other thing wrong with their brain, suffer from 1-13. And probably more.

I have posted this on my own Facebook and on BASA. I hope that all my friends read it and understand why I am no longer the "fiercely independent woman". But if anyone doesn't care, that's their problem, not mine.