Another Wednesday, another day with Orange Sky. Fortunately, Gavin was picking up the van this morning so I slept in to just before 7.00 am, it is a beautiful morning, clear sky and just mildly cool.
It was a busy morning down at Woolloomooloo, nine loads for the morning,
I was home for lunch before 1.00 pm and lucky enough to catch Andrew Denton speaking at the National Press Club about dying with dignity. As usual Andrew made a hell of a lot of sense and especially; in my current situation, touched on whatever fears I have left.
I sent off an email to DWD NSW to pass on my congratulations.
Dear Sir / Madam
Apologies for the large print – the reason will become clear as you read this note
I came home today, after spending the morning, volunteering at the Orange Sky Laundry for the homeless.
I switched on the television while I had some lunch, before heading off to bed as a result of the tiredness which is now an integral part of my life.
It was pure good fortune, I caught part of Andrew’s address at the Press Club.
I am living with a death sentence in the form of a disease/ illness called Multiple System Atrophy; this attacks the Central Nervous System and has a shocking prognosis for both mental and physical deterioration over a period of time.
As I have so “eloquently ” put it on several occasions: “There will come a time when I cannot wipe my own arse and, worse still; I won’t even know if it needs wiping”
I have lived with this disease, now for eight years now, and I am defying all predictions.
Bits and pieces are failing progressively, but overall; I am doing very well.
I do not want to die, but neither, do I have; a morbid fear of dying.
What I do have, is a pathological fear of the process of dying as things get worse!
As the father of three fiercely independent daughters and grandfather of three of the best grandchildren on the planet (a little bit of bias there!) I would much sooner they say goodbye to me while they still know me.
I want them to remember me; as a grumpy old fart with a bad sense of humor, rather than as a disgusting, smelly old relic of the person I used to be.
I have always respected Andrew and his viewpoints; whilst not always agreeing with everything he says.
On this matter though: I not only respect, but agree wholeheartedly with him.
If there is anything I can do to support this campaign in whatever form, I would be pleased to assist.