Pain is inevitable. Suffering is optional. ~ M. Kathleen Casey

The diagnosis of a medical issue can cause heartache. How we deal with the heartache is often directly related to the support we receive, but support can only come when the supporter has some idea of what's involved. It’s sad and more than a little frustrating that so few people I meet really know anything about brain aneurysms. Sad because brain aneurysms are not a new discovery and frustrating because not even the most prominent brain injury website in Australia, the Brain Foundation, lists aneurysms on their home page, yet in their A-Z of brain disorders they note that “Aneurysms are present in probably 2% or more of adults, and multiple aneurysms occur in more than 10% of these.” 

Let’s do the math. There were 22.68 million people in Aus in 2012. Based on the Australian Bureau of Statistics data which lists 81.1% of the population as working age and above (which they classify as 15+), that is over 18.39 million people. Even allowing for the fact that 15 year olds aren’t usually considered to be adults, that is still potentially more than 300,000 people with one or more brain aneurysms. So why are aneurysms the ‘poor cousins’ of brain issues? Why is there so little information available not only to people diagnosed with BAs, but also their family and supporters?

I won’t just sit back and do nothing when something is affecting me, I want to know details, so I have surfed and Googled and read. The best information website I found is one in the USA, the Brain Aneurysm Foundation. According to this organisation, they are “the world's only nonprofit organization solely dedicated to providing critical awareness, education, support and research funding to reduce the incidence of brain aneurysm ruptures.” Yet when my brain aneurysms were diagnosed I was not given any information about this organisation, nor is it listed on the Australian Brain Foundation website. 

Likewise, I was not given information about any support organisations in Australia, and not even any information about the BA page on the Brain Foundation website. Nothing. Zip. Nada. I found two support pages on Facebook, Australian Brain Aneurysm Support and Awareness and Brain Aneurysm Support Australia, which I have mentioned in previous posts but which I will continue to plug because these seem to be the only support groups around. However the fact that neither of them have huge numbers of

followers would indicate – to me, anyway – that the specialists and medical professionals who should have information available, don’t. Anyone diagnosed with a brain aneurysm should be made aware of the existence of these pages. Being told you have an aneurysm is damned scary. To have no support and no-one around you who knows anything is worse. 

 

The medical profession fails us when they ignore the emotional side of a diagnosis. I was failed from the time I was called back to the radiology lab, when no-one thought to either suggest I had a supporter present or even ask me if I wanted a staff nurse with me when I was told. I was failed by my own doctor who, as a GP, knows little about this specialist subject and has no information available. I was failed by my neurosurgeon who had no written information available for me.

 

Photo by Amanda M Hatfield

In fact, since the start of this journey the only information I received from any “professional” source is the information about the cerebral angiogram I received from PA Hospital. Everything else I have found out either by surfing or by discussions with others with aneurysms via the two Facebook support pages.

 

Not good enough, Australia!  300,000 people potentially with aneurysms. Why don’t we know more about these things? Why don’t cerebral aneurysms, which can and do kill, have the same public profile as, say, brain tumours?

 

Message to the neurosurgeons and to the Brain Foundation and anyone else who thinks that aneurysms are not important: I am the one with two of these little suckers in my head. Don’t insinuate I am not important.

 

To me, I am.

Be kind, for everyone you meet is fighting a hard battle. ~ Plato

Good thought, Plato.  Of course, some people are fighting harder battles than others, but it's all relative really.  Who is to say that my battles are more or less important than someone elses?  And yet, that often seems to be the case, in my perception.  And perception and perspective are all we really have to base our feelings on.

So this post focuses on my emotions, because, let's face it - when you are thrown such a huge curve ball in life, there are definitely emotions attached.

In my previous posts I mentioned some of what I have felt since first diagnosis - numbness, anger, self-pity, acceptance.  I'd like to put each of those emotions and many others that have flitted through me in the past two months into the context of my life at this time.

It's been a pretty crap year all round - marriage breakup in January, moved out of the marital home in April, expensive car repairs also in April, so the aneurysms were just another crap thing I had to deal with.

Numbness was my first emotion.  When the diagnosis was sprung on me, with no support person offered, it was like a punch to the solar plexus.  Certainly, I had little wind left in me as I sobbed inside the CT scanner.  This is a huge failing of the health system.  Maybe, to them, an aneurysm is a daily occurrence - to other people, it's all sorts of things, mostly bad.  To me, it was a bolt out of the blue that had/has the potential to change my life. 

Graphic: https://sites.google.com/site/newalbanytheatreboosters

Anger followed close on the heels of numbness.  Anger that my body was letting me down yet again. Anger that the hospital system was treating me as if this was nothing unusual - to them, it's not, but to me it most certainly is. I'm a great believer in keeping people in the loop when something directly affects them.

Fear closely followed anger.  This was my head, FFS. Something foreign in my head that I knew very little about and could do even less about. I resolved much of my anger and fear by Googling information.  If I couldn't get information and empathy from the health system - including my own doctor - I would do exactly what they recommended I did not do, and look it up.  The sites I went to are all very reputable and specialise in brain aneurysms.  What was not to believe? As it happened, subsequent information from my neurosurgeon confirmed what I had Googled anyway. By knowing more about aneurysms in general, even though there are no restrictions placed on me, I have been able to take steps to ensure that, should the worst happen and the little MF rupture, I have the best possible chance of survival.  For that reason I carry with me at all times the referral letter which describes my condition, so in the event that an ambulance is necessary they will know what is required for treatment.  My phone has my ICE (In Case of Emergency) details, and my insurance details are up to date. When I know that rupture can lead to death in far too many cases because of lack of awareness of a pre-existing aneurysm, why wouldn't I take those steps?

Once I had found out enough information to satisfy my natural nosiness, I felt acceptance - a great calm come over me.  I knew there was absolutely nothing I could do about this situation, the damned thing was there in my head and wasn't going anywhere, so just deal with it.  This short time of calm was the best I have felt since the start of all this.  It didn't last long enough, not from wavering acceptance but due to ongoing external pressures.

More anger, unrelated to the actual aneurysms but certainly related to my overall stress levels, arose due to some employment issues that cropped up not long after my angiogram.  At this stage I must mention the gratitude I felt for the PA Hospital staff who performed the angiogram and looked after me in recovery.  Very professional, very empathetic - and good comedians to boot. 

I suddenly found myself, for reasons I won't go into, unemployed.  The day after that bombshell I met again with the neurosurgeon, to be told they had detected a second aneurysm, and the first one was bigger than they thought.  Disbelief, acceptance, uncertainty, in quick succession.  Resignation was the emotion of moment when I signed the surgery consent form.  Yes, I could have decided against it, but realistically, was there a choice?  Live with a ticking timebomb which may or may not go off in my lifetime, or get rid of the sod(s) as soon as possible.  No contest.

Being on a surgery waitlist is fraught with its own problems, as far as my employment is concerned.  Who would want to employ someone who might just need 2-3 months off at any time?  Yet I couldn't not tell a prospective employer about it - non-disclosure could cost me my job, if I got one. 

I approached a job agency in my suburb, not realising they were connected to Centrelink.  In order to use them, I was told, I had to apply to Centrelink.  Off I toddled.  Big mistake - HUGE mistake.  I am a Kiwi.  I have not lived here for 10 years, even though I have worked since pretty much the day I arrived.  I am not entitled to any sort of assistance whatsoever. The woman who told me this had no empathy at all, didn't care that by then I was sobbing my eyes out, pretty much affirmed that they wouldn't help me even if I was to become homeless.  Wow, lots of big emotions, one after the other - embarrassment (that I was crying in public), disbelief (that someone could be so cold), anger (that I have paid taxes for 8 years and am not entitled to anything, even though Aussies can go to NZ and get assistance from Day One - but that's another blog).  I felt very lost and alone, even though I have the most amazing group of friends and family.

Those feelings weren't helped when I contacted the hospital to see if they could give me any indication of timeframes for surgery. When I had signed my consent form, I was given to believe that the timing would be a matter of weeks.  Now I was told it was probably months.  Now I felt resentment - at a stupid system that can move people with private health cover ahead of those without, a system that still doesn't recognise or acknowledge that something like an aneurysm, to the person who has been diagnosed with one, is like an invader that you just want rid of.  No emotional support, no empathy.

People keep telling me how strong and resilient I am.  I am not sure about that - maybe I am just dumb enough to keep getting back up when things knee-cap me, because it seems every time I get up, I get knee-capped again.  Anyway, I bounced back.  As you do, if you want to stay sane.  I decided to update my blogs (I have three) and start looking for freelance writing work. I am very privileged to have met a wonderful young woman who is the franchisee of TEDxSouthBankWomen.  She and her family have been very supportive of me all year, and when I saw her very recently she suggested a few sites I could look at and a few writers I could follow, and recommended I get on Twitter - which I had avoided until then.  I took her advice.

Once again I am back to acceptance, and am feeling a lot more upbeat about my whole situation.  I know that the emotional cycle will continue, probably right through until I finally get to surgery, if not beyond, but I have the information and support I need to fight it. And I'm doing okay at that so far, with a lot of love and support from wonderful family and friends.