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, 17 November 2013

So much of control is not authoritative action but mindful waiting. ― Cameron Conaway

When your aneurysm is diagnosed and you sign the form to go on a surgery waitlist, you begin a whole new journey. Only those who have ever been on that journey can fully understand it.

I find it perversely amusing that they call it "elective" surgery, as if you really have a choice about whether or not to potentially save your own life. It's a Catch-22 choice. One wrong move by a surgeon and we may be damaged for life. But too late and it ruptures and we may be damaged for life or dead. So we sign the form and we wait.

And wait. And wait.

I found an extremely good article written in 2009 which so accurately expressed so many of the emotions I feel daily as I sit and wait for my surgery. And wait. And wait.

Anger, irritation, frustration, uncertainty, "existential concerns about fear of mortality and a degree of urgency". Nothing unreasonable, when you think that an aneurysm lurking in your brain can rupture at any time, for any reason, and even the experts can't predict it.

A craniotomy is not minor surgery, no matter how common it becomes for those who perform it. The patient may only ever experience it once - a few may go through it twice - but this is our BRAIN you are drilling into and digging around in, the thing that controls every movement, every thought, every emotion, all our senses, intuition, speech - everything about us. We have a right to be concerned, angry, frustrated, uncertain. We also have a right to expect fair and reasonable treatment and support and communication, yet we know that, often, someone deemed more urgent or someone who has private health cover when we don't will get pushed in ahead of us, and that rankles. No-one wants to feel less urgent, less important, especially when we live daily with the potential of rupture and the known possible outcomes of that.

I have often wished I had never been diagnosed. It would have been so much easier not to have to deal with the emotions, the constant, nagging worry about every headache, every forgotten word, every missed step, the unwelcome taste of blood in my mouth, whether phantom or not. But I can't change what is, so I wait.

And wait. And wait.

Mark Trautwein, diagnosed with AIDS in 1982, wrote a great piece for the New York Times in 2011, acknowledging that while he has spent half his life knowing he might die, "...the constant companionship of plague has taught me that life is about living, not cheating death... I haven’t died on schedule, and I’ve been learning not to live life on one either."

I am trying to live my life as if I don't have that constant threat of rupture and the consequences. I am cramming more into my days than ever before, so I don't have time to worry. On top of all the other crap in my life at the moment, I don't need that as well.

It's damned hard, but I'm still alive. That's worth celebrating.

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