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.

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.