Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Throwing a living wake

November3

Donna Williams October 2016 It was my 53rd birthday mid October. I was diagnosed with terminal metastatic breast cancer in mid September and the week of my birthday had just done my fourth palliative chemo. The weekly chemos had been shrinking the innumerable tumors in my liver and the one in my spine wonderfully and even though I know this drug Cinderella tends to work for only 8-12 months before the cancer cells mutate again and become resistant to it and all the tumors return, I get to ‘go to the ball’…

I knew my 53rd birthday would statistically be my last, perhaps, if I was lucky, I’d see a 54th. The stats are based on doing three weeks of full chemo then one week off… I don’t have the immunity to do that, so I get reduced dose chemos and only two weeks on, one week off which is better than none. But I know that may well alter the statistics for me, perhaps not in my favour.

People think facing death is all and only terror, shock, endless tears, despair. And it is at first. For some, like me as an immune deficient breast cancer patient since 2011 with a rampant cancer history on my mother’s side and a father who died from cancer of the everything aged 59, we have an idea it may well be there up ahead around the corner at some point. So the shock is less, the terror we have already walked beside and familiarised ourselves with, and we have already lived knowing one day this time might come when we suddenly learn we have fallen ‘over the fence’ and are ‘terminal’.

Or people not directly going through this ‘cultural experience’ of finding themselves or someone very close to them ‘terminal’, think its about big Hollywood style flamboyant bucket list stuff. But those of us who feel we HAVE lived, who have no regrets, no ‘if only I had…’, our buzz is more likely striving to normalise the bizarre situation we find ourselves in knowing this is our last year with a body. For me its about valuing as much ‘everyday life’ I can get whilst still having a body.

So I threw a 53rd birthday party, which was also my living wake. I invited people from all my walks of life and those from my husband’s world who would be there for us and later for him in his journey forward in the years to come. There were those who went as far back as the cousin who knew me since I was one year old, my younger brother and my two nieces and cousins from the bush, to the pals who had saved me from myself as a homeless, highly self endangering teen, the muso pals who have helped me record my songs and voice I’ll leave for the world, the poet pals with whom we indulged our writerdom and existential angst, to familiar shopkeepers in my socially challenged faceblind world, to the now grown up auties I’d worked with as children, colleagues from my world as an autism consultant and lecturer for 20 years, students from my world as an art and drama teacher, autie and aspie adults from the dinner club Chris and I ran for 10 years, the mentor who walked with me through my DID journey as I glued my fragmented soul together in time to face death, the close pals up on the back porch singing and dancing with me who had been sisters and brothers to me and the fellow swan, my husband, Chris, who had given me 17 wonderful years together.

The three hour party was an amazing walk in the shoes… in spite of having had chemo that week we sang death satire songs, danced, laughed, cried and I was so very much alive doing all this with them. People brought plants they planted as a memorial garden and expressed themselves on a long black canvas scroll we rolled up for keeps at the end. People brought food and drink to share, met each other from all the different walks of life that were represented there.

It was wonderful, beautiful, communal, celebratory, poignant, connecting… but also rawly real, totally face to face with the balances of love and loss, of life and death, of how alive we can be staring mortality in the face…. but I think the party really cut through the stereotypes we have about dying, the spectre of death, how does one pack up one’s life knowing one is going, what is ‘a life’.

People fear cancer, they commonly feel its one of the worst deaths they can imagine. But medicine has advanced a lot, and for someone lucky enough to have a ‘Cinderella drug’ that allowed me to go to the ‘ball’ for 8-12 months and will allow me a relatively dignified end with palliative care at home if that’s what I want, then, for me, it is perhaps a privilege to be going out so prepared, so aware, and so alive until my body can not sustain me. Then I live on in everyone who also made me me and in whom there are already echoes of me which will only be all the more present when the organic matter of my body has reached its use by date.

Polly Samuel (aka ‘Donna Williams‘)
Author, artist, consultant and presenter.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.