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.

Saturday, 5 April 2014

"I have learned over the years that when one's mind is made up, this diminishes fear; knowing what must be done does away with fear." ~ Rosa Parks

When I looked for an aphorism for this post there were many I could have used, but this one from activist Rosa Parks seemed to express my thoughts so well. When my aneurysm was diagnosed on 2 July 2013, I felt like my world had been turned upside down. With so little information provided to me by the local "experts", I decided to do my own research, and this blog came into being. I faced my fear by learning about it.

After so long waiting, I had pretty much accepted that I was not considered urgent and my case would be dealt with "in due course". I'd reached a kind of resignation, and carried on with life which included getting very tired, constant mood changes and headaches, none of which, according to the experts, were related to my aneurysm. My research (if you've followed this blog at all you'll know this has been covered in previous posts) said it could have been, but there was nothing I could do about it. Those who say that you should take control of your own life and not leave it to fate have obviously never had a brain aneurysm (or any other life threatening illness). When you know about your aneurysm, resignation and acceptance are the only options. When you don't know, fate always has the upper hand. 

In February and March this year Queensland Government began a long-winded stoush with senior doctors over their contracts. Amongst those who were, apparently, resigning if the contract issue wasn't resolved were neurosurgeons and anesthetists, both of which were - obviously - pretty essential for my surgery. Come 1 July, it was reported, much of the scheduled elective surgery throughout the public hospital system would cease. I was mightily ticked off at the Queensland Government's attitude. To me, it seemed the system was archaic enough as it is and pushing doctors up against a wall and threatening their jobs was too much. I sure didn't want some hastily-hired locum from overseas cutting into my head! Doctors work long hours and do essential and wonderful work, and how dare Campbell Newman make threats to them and them reward himself with a $70,000 pay increase?? So this time I had to accept resignation that my surgery might not happen at all, or at least not in the foreseeable future.

This week everything changed. I finally got my call to surgery on Monday, 272 days after diagnosis. Did that change my mindset? Hell yes! 272 days of being resigned to waiting, and possibly not even getting there if the doctor's contract issue wasn't resolved. 272 days of knowing that, in the public system, I was not important. 272 days of realising that the very same surgeon who would eventually operate on me was operating, in his private practice, on people who had not waited as long but who had insurance.

(I am well aware that insurance doesn't cover everything - a friend made the mistake of deciding to have hers done on her insurance instead of through public, and has paid through the nose for the "privilege". Insurance is really only of any use in situations like that if you have 100% cover of 100% of costs.)

And now, after 272 days, I had a date, and it was only 3 weeks away! So, I could approach this like any other day, write it into my calendar and just go with the flow, but this is brain surgery, a little bit different to "any other day". I believe that most of the people who do have problems post-surgery are those who had subarachnoid haemorrhages pre-surgery. I have been lucky not to have gone through that, and I have great empathy with those I have met through Facebook support pages and various websites who have had, and still have, problems in their recovery due to SAH. I know that the large majority of people who have this type of surgery come out the other side with no problems. But this is brain surgery! A surgeon is going to cut my skull open and dig around inside my brain! Am I scared? Hell yes!

In my 20s I tested for and was accepted into Mensa, a worldwide society open to people who score at the 98th percentile or higher on a standardized, supervised IQ or other approved intelligence test. My 'intelligence' is comprehension and language based. I have the ability to cut through the crap and understand a situation a lot faster than many others, to ask questions that help my comprehension, and to discuss it logically. Alzheimers has always been something I have been scared of coming up against in my senior years, and brain surgery can leave a patient with effects similar to Alzheimers, even if only for a short time during recovery. It is the loss of my language ability that scares me more than anything else I can imagine, more even than pain - and I'm a complete wuss when it comes to pain. 

I can't imagine not understanding single words let alone a whole question. I can't imagine not remembering the meaning of a word or how it is used in a sentence or what article it represents. I am scared of memory loss, short or long term. I am scared of forgetting who I am. I am scared of forgetting people I love.

I have spent this week psyching myself up for this. I have some wonderful supporters and have had some good discussions with people I know who have been through similar surgery, but what they felt does not necessarily equate with what I am feeling. Everyone is different. Rosa Parks said "knowing what must be done does away with fear". I don't think it does away with it entirely, but I am trying, really trying, to be positive about this. 

17 days and counting down. See you on the other side.

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