Tuesday, 24 June 2014


Today is my birthday, the first one after S' death in late August last year.
Two weeks ago it was the day S was born, first time truly sunk in the fact I will never see his beautiful face again.
Yes, I've had a first Christmas without him but I was in hospital & in denial too.
Today is my birthday and I am in hospital, not in denial anymore, I am here because during the last round of tests in Sydney a couple of weeks ago, a little "complex cyst" in my R kidney was found, there's a big chance it is malignant. There's a benign tumour in my L kidney - just to balance things out I guess.
Brain & Spine MRI results ruled out any growths, tumours or mechanical problems, and MS has pretty much been discounted, albeit some changes in the white matter, which may or may not, be attributed to age. One would be forgiven for thinking that it's all good news, right? - well, "Not really" said Professor H (my neurologist), now we are staring at the scary stuff right in the face, more tests were done, no results yet, just a lingering sentence in the air: MND is a diagnosis of exclusion...

The grief of losing Simon plus the new discoveries are taking their toll on me, I can't eat, I have terrible nausea, zero appetite and swallowing has become a task in and of itself. My balance is crap, I've had a couple of falls, the tremor is intense and my brain is forgetting words, I either can't say what I want to say or I jumble up words or I can't understand when people talk to me.

You may think I'm crazy (after all, I am in a psychiatric facility), but Cancer doesn't scare me at all, if I have renal cancer it will be OK, it has a survival rate 80-90%. So no biggie. It most likely will be uncomfortable but meh.
Death doesn't scare me, in fact, I've been wishing to die for the longest time, the only thing that's keeping me here at the moment is securing as much money as I can to set up a trust fund for S' son.
What truly scares me is losing control of my body, being sound of mind but unable to move, I could not bear a life where I cannot feed or dress myself, being trapped in my own body and dying of respiratory failure, not because my lungs are diseased but because the muscles of my rib cage will stop working.
I cannot find a more cruel way to die.

If I'm positive for MND my decision is to die in my own terms & much before I cannot do it unassisted, I don't want anyone to be in trouble because of my determination. My life is my own and I shall decide when and how it ends. I am not one of those most excellent people who fight and continue despite the worse, I am not going to run a marathon, nor start a foundation, I am not going to write a book and be the inspirational-porn poster girl. I am just plain going to die in a dignified way and whomever disagrees with me can go eat shit.

My life, my way, right until the end.

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