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.

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.


Thursday, 15 October 2015

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!

Thursday, 24 September 2015

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!

Wednesday, 9 September 2015

“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.


Tuesday, 1 September 2015

"I'm constantly in fear of having a stroke" ~ Lewis Black

When you have a stroke, whether it's ischesmic (a clot stops blood supply throughout the brain) or haemorrhagic (blood leaks throughout the brain tissue), makes a very big difference to you about how you will continue to live. For me, my stroke affected my frontal lobe and for much of my early hospital days was playing games with my speech. It has taken me a year to really think about what I am saying and remember most words. Sometimes, when I am trying to talk - especially when I am tired - I miss words, forget them and can't find them.

Recently I joined a new website, Enable Me, set up by the Stroke Foundation. There are goals in this website which I can set for myself. In the "Body mind after stroke" there are brain and cognitive, exercise, fatigue, personality changes, speech language, and many more. So many of these relate to me. The "My life after stroke" page gives suggestions, which, for me, includes food and nutrition, organising my life and rehabilitation.

This morning I sat down with Enable Me and started to set my own goals. This website is not particularly easy, even for me, but the end of setting a goal gives it back to me to watch. So far, in my last year, I haven't seen anything like this, even though I have tried something before I simply forget it. It's not in my diary.

Yesterday I re-found the Moreton Bay Council page for Older and Bolder. Yes, I had seen this before - but I'd forgotten it. Very frustrating for me! Earlier this year I'd done some stuff which I thought was excellent, so to re-find the brochure for the next few months encouraged me to look and find anything I wanted to do. I found a week of exercise at PCYC for free, which I have joined.

It's the week that Stroke Foundation has advertised as the National Stroke Week - 14th to 20th September. That week I will be exercising to improve my body after my stroke because of the goal I have set in Enable Me, and the event I have found at PCYC. Perhaps this stuff should cheer me up!

My Enable Me goals include making sure I keep my diary full with anything I am doing - and check it before I double-schedule anything! I have been running my diary (in my phone) at least since I moved to Moreton Bay area, but there have been a few times when I hadn't looked at it when I should have, so had either double-scheduled or just missed something. If I follow the Enable Me goals online maybe I won't do that!

I now have involvement with STEPS, Aphasia, Stroke Foundation, Synapse and, of course, BASA (please don't ask me to tell you what each name mean - look them up!). This involvement is starting to feel very good for me. After having my own article printed in the local Redcliffe newspaper recently, I am now getting my own story printed in the Synapse Bridge magazine. I am attending meetings with STEPS and Synapse. I have been invited to an activity run by CBRT (my former rehabilitation team) for the National Stroke Week. I have finished Leader training with STEPS and will soon co-lead training up my area.

All of this is far different than my (paid) work which I now don't do, but I believe that eventually I might be recovered enough to do something that I will be paid for. Now though, thanks to Enable Me, I can move ahead with my future. It won't actually "fix" me, but I think I can learn from it.

Lewis Black's quote was set up as the heading for my post this month. After my first stroke I live with my own constant fear, because I know that a stroke can get just about anyone.

If you have had a stroke, I hope you are living your best future.  

Monday, 27 July 2015

The secret of man’s being is not only to live, but to have something to live for. ~ Fyodor Mikhailovich Dostoyevsky

There are around 2% of people in Australia who have brain aneurysms. Did you know that? 

Throughout Australia it’s shown in statistics and website information pages that death as a result of ruptured brain aneurysms can be up to 20%. For those who survive because of a very good neurosurgeon, this can still be extremely scary. How many will fully recover, get back to their previous life, just get on with their future the same as they would have? How many wouldn’t completely recover?

The website for Macquarie University Hospital says that it is “uncommon to diagnose an aneurysm before it has ruptured and most people with aneurysms are unaware that they have an aneurysm until it bursts.” That was what happened to me two years ago – I was totally unaware of what was playing around in my brain when my first aneurysm was found in a CT scan which was not directed at aneurysms.

During my surgery, 293 days after CT’d, I had some heart problems and a stroke in my brain. It seems this is very unusual result at a neurosurgeon’s operating theatre. How many other people in this country had the same issues that I had?

Our brain aneurysm Facebook, Brain Aneurysm Support Australia, only has around 830 supporters. How many is this of actual aneurysms? According to Macquarie University Hospital, in Australia there are “more than 1,600 aneurysms rupture each year.” How many people, either BASA or any other groups throughout Australia, are there because of an active aneurysm, whether fixed or not yet? How many are there because they were – so luckily – found to have an aneurysm in their head? How many are fixed properly?

Some of the personal stories (other countries, not here unfortunately) agree that they didn’t want to give any information about their aneurysm, yet after their operation they “see the light” and talk about themselves and what happened. For me, this is essential – aneurysms exist and must be talked about. This is pretty much what we do every day on BASA. Brain Aneurysm Support.

I have written (almost finished) a book called Aneurysms with Aphorisms, which is very similar to this blog, but right now I don’t have any confidence that it will get printed and people will read it and learn from it. Personally I believe that every person who has had problems because of their aneurysm should write about it if they can. Should publish about it. Should have a website about it.

And every person in the Australian population who has a very high, very comfortable income, should help these survivors to pass the information onto everyone else in this country.

Information about brain aneurysms is essential for you to know. Start with Macquarie University Hospital, move on to Brain Foundation who support brain aneurysms in amongst so much involving the brain, find a neurosurgeon in your area (I’ve put Dr Jason Wenderoth in here as he is a supporter in BASA), and find out who you can contact for support and care.

And then help me to get my book published and buy it!!!

Saturday, 18 July 2015

Things are never so bad they can't be made worse. ~ Humphrey Bogart

This morning I had a headache. It was worse than I have had for a long time, but I still didn’t think it would affect my aneurysm – my second one sitting in my brain.

Many years ago – not too long after I’d been going out with my second husband – I had to call off a sexual intimacy because an orgasm had given me the worse headache I had ever had. Now that I know that this sort of thing was the ‘thunderclap’ which lead into brain aneurysm, I suspect that, even so many years ago, I had had a small haemorrhage that day but I’d never known about it.

Since the hospital in April last year, after my op and stroke, I haven’t really had a headache since then. Today it’s uncool, but I still don’t think it will affect my aneurysm. Why? Because if it does affect my aneurysm I would rather want to die than go back into the hospital for a second aneurysm operation and possibly another stroke which might just make me completely invalid.

This is a weird thought, yes I know that, but in the last year I have done an about-face for aneurysm operations unless every neurosurgeon will operate on every person who are CT’d with an aneurysm, straight after that happens. I had to wait 293 days. I don’t believe I would ever have had a stroke. If I end up in brain aneurysm surgery and have another stroke, a very bad stroke, I would rather die than be left invalid.

Sparky Henderson said: “People who live in the past generally are afraid to compete in the present.” He thought longer, but these words dug into me. I live alone and have a long, long few hours every day thinking about what I do like, and I think I live in my own past, my childhood and much more. So many years I wish to forget, but I can’t. I have relived the memories. I remember so many things from my old past, when things from my present and very near past I forget.

I saw a different quote which says “I smile and act like nothing is wrong; sometimes it’s called dealing with shit and staying strong.” This used to be me, for most of my life, until I ended up in hospital. I had never planned that, but neuro managed to talk me into signing the elective form and kept me waiting for 293 days. I’ve re-done that quote because it sure reflected me.

I drafted a brochure a few weeks ago, with the intention to print of thousands and travel all around Australia and hand them out and talk to heaps of people, but I know that won’t happen. No money. This life is very sad. Maybe not for everyone who has been through BA, but there are a lot like me.

With my headache and no future, I can just wish you all your own future. I hope you have your family and friends and are not entirely alone. I hope you are all getting better without a headache or feeling so cold.

Like Humphrey Bogart (Rick Blaine in Casablanca) said, "Here's looking at you, kid." Have a lovely week if you can.

Wednesday, 15 July 2015

Life begins on the other side of despair. ~ Jean Paul Sartre

Sometimes I really feel this. Recently I went down to my worst depression (see my Whacksworks blogs from July - first and second) but I have had some wonderful recovery from that in the last week. I was talking okay before I went downhill, and I'm now on my way okay again.

I wrote back in June about the groups I have become involved with.  These are very good for your life, even if you only go there on your own rather than with any of your family. Fairly recently I had been in touch with Synapse and I get their magazine. In volume 19 for June they have in their magazine and on their website a lot of information about Bang on a Beanie. Today I went into town on the train and caught a bus in Adelaide St and went to Synapse in West End to buy a beanie. These hats are fundraisers for the Brain Injury Awareness week which will be country-wide between 17-23 August this year. Every single person in any of the groups I have mentioned - BASA, Aphasia, STEPS, Brain Foundation, Stroke Foundation, Synapse - and any other group which supports brain injuries, this week is for YOU!

 Synapse had an old magazine in their office, Volume 8 from September 2012, which had some articles in side columns that I believe give so much information that every single person should learn from. The first one, Brain Injury, talks about the devastating impact to an ABI sufferer. The second one looks at Coping Strategies. At the start it says "A brain injury can be likened to a drop of water, as the effects radiate outward to families, friends, the workplace, the local community and even the nation". So true! But will this ever be believed by people you might meet who have no idea what a brain injury is like? Do they know anything about cerebral aneurysms, brain tumours, autism, narcolepsy, stroke.... or any of the other 400 illnesses which are included in the USA National Institute of Neurological Disorders and Stroke? Do many - or most, or all - of these illnesses reach onto DSP in Centrelink? Why? Or why not?

In the 18 months since I started this blog, and the last six months when I have been involved with BASA (Brain Aneurysm Support Australia) as administrator, I have done so much Googling for information about aneurysms and stroke, mostly because they are my illness. I have found so much information from other countries, including USA, Canada, Holland, South Africa, Japan, England and more. Every single country seems to have the same sort of problem that we have here in Aus: that very few people even understand aneurysms unless they or a family members might get diagnosed, or, sadly, end up in emergency with a rupture which can simply kill them. I would share this blog with anyone that you know who doesn't really understand aneurysms, strokes, brain tumours or any of the other 400 illnesses which are listed.

Finding out about these and getting to know them are essential. And please, don't ever disagree with anyone ending up applying for DSP. This might be exactly what they need.

Oh, and don't forget to tell them to Bang on a Beanie for the Brain Injury Awareness week on 17-23 August this year!

Friday, 10 July 2015

Nothing in the world is ever completely wrong. Even a stopped clock is right twice a day. ~ Paulo Coelho

I am back! Well, at least to this Aneurysm Aphorism blog, when I should have been on here regularly with news about what is happening with aneurysms and strokes. And anything else I have been involved with. Sorry, yes I am, but you know what? I have done heaps.... not paid, just heaps!

In February I had my second aneurysm CT'd again, and I'd turned up to see Dr Webster for a report on it. He was in an operation and wouldn't be back too soon, so I went home. An hour back to my present home (now Scarborough, same Moreton Bay Council area as Woody Point where I was last year end) and to my dog, who would pine for me. They should have my aneurysm CT'd every year, and I should go in to PA or closer to get a report from the neurosurgeon. I should be contacting PA, but I haven't written it down and I keep forgetting about it! PA Hospital rang me that evening and said I didn't need to reschedule with Dr Webster. I think they did that to me because I was so far away from them. That time I thought they were really thinking for me, but a bit later I started to think, I really do need it every year!

My course at Metro Health in North Lakes was about stroke personal self management, called "Dream, Believe, Achieve", which I found so very helpful. There were, most days, 8-10 people, either survivors or carers who attended and spoke about the problems we (they) all suffered. I have a booklet from that group which I can read through whenever I forget anything. I feel so good that I passed, and even  every person who stayed there for the 6 days over 6 weeks would pass! This course was run by Stroke Foundation, and I found out such a lot of information about this organisation... more coming in the future!

Last year I had joined the Aphasia group, and I meet them every month for a coffee and chat. After 8 months I am finally starting to remember some names! Last month I'd met a newby, I think his name is Sumil. This month he came with Tamara, from CBRT! She had helped me for 3 months last year with my speech pathology. She is a lovely woman, and I am sure that Sumil will come forward with her.

The other group which I joined is STEPS - Skills To Enable People and communitieS. This is related to the ABIOS (Acquired Brain Injury Outreach Service) which helped me when I left the BIRU ward and still couldn't talk. I am very happy with the relationship, and I have asked the leader, Areti, for information about whether or not I can train as a Leader for my group. Fingers are crossed!

And one other group I have joined with is Synapse, which is a brain injury group based in Queensland. There is a lot of stuff in this group that I could become involved with - just leading up to Bang on a Beanie which is advertising the Brain Injury Awareness week, 17-23 August this year. Check Synapse out, and buy a Beanie!!

On 10 June I had an article printed in the Redcliffe & Bayside Herald, which wrote about me living my own personal long road and the reasons why. It was so very good, and I have had a few good comments from people about this, including from my volunteer leader, Angelique, at the Redcliffe Art Gallery. That volunteering I still do, and now I am there on Monday and Friday mornings. I love it!

This week I received a phone call from Lilly who runs the CBRT (Community Based Rehabilitation Team). She was "in charge" of me when I came up to this area and went to CBRT. Now, she told me, she has had a call from someone who works with brain injuries, who read this article and want to come and interview me!!  I am so looking forward to this, I really believe that I can go forward to talk about brain aneurysms, ABI (Aquired Brain Injury), TBI (Trauma Brain Injury), Stroke and depression. This is stuff which I really know about now and I really do want to educate people about this!

I'm off again just now, but I really am hoping I don't forget this again!! Have a wonderful weekend everyone!