"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:

• Aneurysm Aphorisms (well, you're here!!)
• Kara Swanson's Brain Injury Blog
• Heidi's Surviving and Living with Brain Aneurysms
• David Grant's Traumatic Brain Injury Blog
• Will T's Nothing You Can See

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!

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.

"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!

"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.


 

It's not how far you fall, but how high you bounce that counts. ~ Zig Ziglar

Recently I tried to access any recovery reports about Russell Gilbert, host from the “Hey Hey It’s Saturday”, and the latest article which even mentioned him was dated 6 October – but it didn’t talk about his recovery. I am not a voracious star-follower, but that frustrated me. When will the public become interested in brain aneurysms and recovery? If it’s not available on a famous person, will it ever be around for any other person?

I Googled to see what I could find about any media reports on anyone. The first one, which I’d found many months ago, was about Leola Foon, 27 February 2011, called “I survived a brain aneurysm”. I had posted this to BASA earlier this year.

Next I found “Life in the balance”, about Elle Hughes, on 15 November 2011. 

SunshineCoast Daily listed 13 stories about aneurysms, including one about Karra Crisp titled “Karra the miracle survivor”, 27 March 2012, teenager Jessica Torrens who died, “Teen’s sudden death stuns friends”, 15 June 2012 and Noel Mooney from Coolum, “Coolum father lucky to survive aneurysm 'time bomb'”, 25 September 2015 – this seems like a good newspaper. 

A person (undated) wrote to Healthshare. Doctors replied with very small answers but their question was definitely responded to properly by another person who had an aneurysm!

“Storage Wars” star Dan Dotson featured on 20 June 2014. 

Many newspapers and websites are overseas.

• Articles about stars Joni Mitchel (2015), Sharon Stone (2001, article 2014 ), Neil Young (2005).
• Gayle Gaw, on Pinterest, has her site titled “I’m a Brain Aneurysm Survivor” and includes articles, quotes and pictures – very good!
• Maria Ross had her aneurysm in 2008 and wrote “Rebooting my Brain” – an article appeared on  27 August 2012.
• Lisa Paige Klein had her aneurysm in 2006, reported in Brain InjuryPeer Visitor website. 
• Tammie Morgan Parris had her aneurysm in 2012, took on working to raise BA awareness, and an article appeared in December 2013. 
• Joe Biden, USA VP in 2013, had his aneurysms in 1988. His talk aroused responses from people who needed advice about aneurysms.
• WABC Channel 7's Lisa Colagro died March 2015, reported on many TV news because of who she was. 

 The forlorn neglect by Australian media is not good. Most articles seem to be about women with breast cancer and men with prostate cancer and, this month, on Mental Illness, yet there are very few articles about people who have brain aneurysms. In Australia there isn’t even a brain aneurysm foundation – it is included in an organisation, BrainFoundation, which covers so many other illnesses. USA has the world’s “leading source of private funding of brain aneurysm research”, Brain Aneurysm Foundation – that should happen in every civilised country!

The brain aneurysm is common. 1 in 50 people can have one, and for someone without diagnosis it could rupture and kill them. Then the media will report about it. Just a short article, maybe one local newspaper, very rarely carried around the whole country.

Very recently the ABC radio channel spoke about the Choir of Hard Knocks, which includes Jac, a former IT executive whose aneurysm six years ago left her with a partly paralysed vocal cord. This choir is something that the whole country should learn about – so many different people singing!

My wish is that every media in Australia will write about every person with an aneurysm who is admitted to a hospital, and what happens to that person. LiveScience said: “A person is considered brain-dead when he or she no longer has any neurological activity in the brain or brain stem — meaning no electrical impulses are being sent between brain cells.” 

Until then? Report on everything that happens about brain aneurysms!

Don't dwell on what went wrong. Instead, focus on what to do next. Spend your energies on moving forward toward finding the answer. ~ Denis Waitley

This quote seems to be very much what we, after our brain aneurysm, need to focus on. Do we? I receive emails from a group called Women in Focus, who support mostly young women who are trying to get ahead in their own business lives. I'd joined this group some time before my brain aneurysm operation, so after that it didn't seem very real for me. But this week there is an article about The Power of Connections, which reported on a talk by Dr Fiona Kerr at their recent conference.

Dr Kerr is a systems and neural complexity specialist, and spoke about how connecting and collaborating grows our brain. According to the University of Adelaide, where she is working, she "is an advisor to governments in Asia, Europe and Australia on fostering creativity and innovation, neuroleadership and futurising, and is currently writing a book on the social neuroscience of managing". 

According to Wikipaedia, social neuroscience is "an interdisciplinary field devoted to understanding how biological systems implement social processes and behavior, and to using biological concepts and methods to inform and refine theories of social processes and behavior."

While this talk to the Women in Focus was directed at them - young, moving women - I see it as directed at every person who needs - or needs their carer - to really think about how to re-activate their brain. This creativity and innovation is very important to those like us who had our brain aneurysm operated on. We can take a short time or a very long time to "recover" - we might just have a brain problem.

Dr Kerr went to a conference called "Wired for Wonder" in Sydney and Melbourne in August. If you can have a look at the events given at this conference, would it encourage you? It should! This, regardless of who it was directed at, is something that we need. For too long, people with brain problems after their brain aneurysms - and possibly after a stroke which joined the surgery - need some real way to work over it. My own opinion is that someone like Dr Kerr should be treating us just as the young business people.

Perhaps I might just write to her!

“I'll write to you. A super-long letter, like in an old-fashioned novel” ~ Haruki Murakami, After Dark

Today I am not feeling good. I am so tired of being alone. My life seems to be time - what I've lost, what I now wait for. It sucks big time for me.

Two and a half years ago my ex-husband walked out, 4 months later I was diagnosed with my brain aneurysm, 2 months later my ex-boss cut me off, 8 months later I lost part of myself from my brain aneurysm surgery and stroke. Four months later I moved to the north side to help out my supporter, 6 months later I applied for my citizenship with my RRV. I'm still waiting for that 6 months on. I am also waiting for the decision from QIRC - 4 months and waiting. In the last few months I seem to have lost south-side friends.

I can't change my life, it's stuffed along with my brain. I don't feel I'm close to what I was before my surgery and stroke. I feel like I've been devalued and dropped on such a low income and now I can't control what happens within my life because I can't spend what I used to. I can't even holiday. Anywhere.

Who would I talk to? Maybe the only proper person to talk to would be this country's Prime Minister.

Dear Mr Abbott

I would like to let you know what has happened to me. Here, in Australia. I didn't bring this surgery from New Zealand. I didn't bring the stroke from New Zealand. What has happened to me and my brain happened here, in Australia, 10 years after I moved here.

I would like to meet you and talk to you, tell you how I am now living.  I could tell you about losing my job when I found out about the brain aneurysm. I could tell you about my financial situation from not being able to get another job while I was on the hospital surgery wait-list. I could tell you about my surgery and stroke in April 2014. I could talk through what I've done in the last 18 months and how my life is now crap.

I would like to talk to you about how DSP is a poverty income. I would like to explain to you how people live with their brain injury, and so many of us end up on a very low income which will never get us back to our old lives. I would talk to you about the recovery I have been doing for more than a year, but it doesn't make me "normal".

Do you understand, Mr Abbott, what brain injury is? Do you understand why people who never ask for this still end up losing so much from their life? Do you understand how they deal with their every-day emotions - and how they might finish this very sad life?

I'm not a citizen. Yet. But when I eventually get approval I really don't know why to bother, because whether I live here or live back in my own New Zealand probably won't resolve my life. Alone, on a very low income.

I used to work. I'd like to talk to you about how sad I now feel. I had a Graduate Diploma of Occupational Health & Safety. Can't do that any more - I forget it. I can't get retrained for any other occupation because, without the citizenship, I'd have to pay for it. No funds... funny, that.

What can you do, Mr Abbott, to help me, a person who has been dropped from their employer, pushed through the hospital and wound through the hoops in Centrelink? Would you talk about why the surgery was "selected"? Can you explain why a person who wouldn't have chosen that way might have ended up dead from rupture? Would you ever look at how and why my income is less than half what I had before surgery? Would you ever talk to me about the reality of my brain?

I have a request, Mr Abbott. I need someone to help me - to get back on my feet and return to normality. Sad, though, that I don't believe you would ever fix it. Or me.

Yours from my brain

I think it's probably only me who feels like this - at least, it's only me with my brain injury. I truly hope that anyone reading this will live a much better life - with your partner, family, friends, workmates. Have your own very lovely week.