Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Memorial speech by Chris Samuel, Polly’s husband

May15

This is the tribute that I, Chris Samuel, read at my wife Polly’s memorial recently.

Do not go gentle into that good night.
Rage, rage against the dying of the light.

So ends the poem by Welsh poet Dylan Thomas.  That was not Polly’s style.  She most definitely did want to go gently, and on the night of Saturday 22nd April she stole away quietly, whilst sleeping.

It was the Thursday night before that she decided that enough was enough, the once a week drains had become twice a week and new symptoms were raising their head. The road ahead looked uninviting and so she emailed the oncologist late that night to say she didn’t want the Friday drain and instead wanted to come into the palliative ward.

First thing Friday they called to say to come in and so we headed off having said goodbye to house and cats.  We said “hi” to the usual suspects on the way in to the hospital & Polly had a dance with Helena, as often before.  Scott and Morghana joined us there and Marisol arrived by Skype.  We had brought in easter eggs, snacks, raspberry lemonade and even a sip or two of sake.  Music was vital and so a CD player and CDs came with us too.   We ate, drank, sang, danced and generally made merry in her room and the nurses were kind enough not to ask us to keep the noise down.

The morphine pump arrived that afternoon and eventually she started to doze and asked us all to leave, she wanted to make that final transition alone.  When she did the next night Scott and I were in the lounge right next to her room, her just on the other side of the wall.  There was no sign, no lights dimming, no crack of thunder to signal her passing.  Just a nurse coming in to say “this time I need a hug, she’s gone”.

Death was not a taboo subject for us, and we talked about everything. We cried, laughed, hugged, walked, skipped, planned and celebrated during those 7 months from diagnosis to death.  When crying we would ask each other & selves if this feeling was sad, poignant or epic.  She had no fear of talking to others about death, or seeing the humour in it – she would joke that she was buying food with a longer use-by date than herself.  I really think that society’s fear of talking about death is very unhealthy and makes this rite of passage much more difficult for every one of us.  OK, lecture over. 🙂

Polly’s foresight was fantastic, she knew what she wanted for this whole process and we planned her treatment, her palliation and this memorial all with the same care. She has even bought and wrapped 5 years of birthday and Christmas presents for me with instructions to open them on Skype with our friend Marisol so I wasn’t alone when doing so. The bond between Polly & myself was so very strong.

We had been together since last century – over 17 years ago in December 1999 we met by accident at a mutual friends in the UK.  I was there to tell them how my life had fallen apart and she was there because her visiting cousin insisted on having her tarot read by our friend.  Later that week was the fateful call from this friend – “I hope you know how much this means, I had to ring my ex-husband to get your number! Polly would like to meet you again.”.  So began that crazy shared journey between the two of us.  We were madly in love and married a year later.  Polly, of course, asked me to marry her, sitting together on the Malvern Hills in the UK, looking out across rolling countryside.  When I said “yes!” a flock of birds erupted from a nearby tree.  It was a good sign.

We shared so much in our lives, including a love of nature, a strong belief in equality and a wish to make and eat good food – not that we were that good at cooking it back then!  I tried to teach her technology and she tried to teach me how to teach her technology.

She always challenged herself & looked to find the best in any situation. She told me that in the early days of lecturing after Nobody Nowhere was published she would end up crying & snotty and unable to understand what she was saying and having to trust that the words she was reading off the page made sense.  People asked why she put herself through this, her answer was “because it makes going to the shops easier for me”.

In art too she didn’t shirk a challenge.  She painted, sculpted, composed, played and sang.  Her second ever sculpture was a life size bronze woman modelled on herself – you’ll see it at the start of the video coming up – after doing it she was asked how on earth she could go from a tiny first sculpture to a full size bronze – her answer was “well nobody told me I couldn’t”.  I think that’s a lesson for life!

Polly was a true egalitarian, she saw everyone as equal and, for instance, had no truck with seeing either people with autism as “broken” “normal” people nor with those who saw people with autism as more advanced than non-autistic “neurotypicals”.  She thought none of us were “typical”.  She also strongly believed in seeing the person, not the condition, because there is always a human in there and they are as much deserving of respect and acknowledgement as any other human.

Polly could also have a profound effect on people just through her everyday personal contact, because with Polly there was no professional versus private persona.  She could be just as insightful or intuitive or buzzing or daggy whether on or off duty, and often several or sometimes all of those at the same time.   I know from speaking to people over the years, including the past weeks, that she changed how some people lived for the better, without often realising it.   Whether that was by inspiring a realisation that you need to balance your work against family time, or by her skipping down the street for fun showing that when you’re with your kids it’s OK to skip with them without caring what anyone else thinks as it’s really great fun to do.

I’ve not even begun to scratch the surface of what Polly meant to me, but I’ll leave you with one last story.

Once Polly was about to fly on a plane and she asked the check-in person about getting an aisle seat so she she wasn’t surrounded by people.   The person asked if there was any special reason for this and Polly said “Because I’m autistic”.  The person looked annoyed and said “I’m sorry, but being artistic is no reason for special treatment!”.

Thank you – and with that I’ll introduce you to Andrew from the UK who, along with Gavin from Ireland, came and visited us after diagnosis last year to film Polly with a view to making a documentary.

Thank you for reading.