I wish I were dead. Compassion in choice.

Terry Pratchett is one of my all time favourite authors. I love the way he takes a well known fairy tale or superstition and twists it into his reality. It’s clever, it’s amusing and it’s superbly done.

I’ve noticed a real difference in the last few books to the earlier Discworld stories though. In the first few (20 or so) tales he took a simple piece of folklore and twined it through a single episode in the lives of his characters – as in the tale of three witches (the virgin, the mother and the other one, because there has to be three) versus vampires who are teaching themselves not to react to garlic (because we all know that ward against bloodsucking night bats).

The more recent tales seem much less personal. Instead of focusing on the lives of a few, linked , characters, Pratchett seems determined to skim over the whole of the Discworld in a sweeping pass. Much like a history lesson covering swathes of centuries in 60 minutes, his recent book, Raising Steam, has forced his prized city of murk, Ankh Morpork, through the Industrial Revolution in a few hundred pages.

Of course, Discworld is his creation, and he has every right to turn the pages of its history. However, I’m left feeling that he is trying to force his world through the Century of the Anchovy and into the Century of, well, whatever comes next, as if he has a deadline to reach that is fast approaching.

And perhaps that is the case. I’ve recently been reading through Pratchett’s non fictional work, published in his book ‘A Slip of the Keyboard.’ His personality, humour and flair is evident in every speech or article, and I’ve thoroughly enjoyed the stray from fiction.

However, although I knew of his diagnosis of ‘the Embuggerance’ as he calls it, I had not been aware of his campaigning for the right to end his life with dignity. He argues with a personal understanding of the desire to pass calmly, at a time of his choosing, sat in peace in his own garden with a dash of his own favourite tipple. The Embuggerance is stealthily stealing his mind, and he cannot control or stop it.

Pratchett believes he should be able to choose when to be done with his own body.

My nan was a wonderful lady – full of laughter and fun. Her husband, my grandfather, died when he was 56 and she 54. She chose to live alone for the rest of her life, but she enjoyed every minute of it. She had been a forklift driver during the war. When I was a child she would take me on the bus with her to do her shopping in town, and tell every passenger, each of whom she seemed to know personally, all about how I was her granddaughter, and update them on the current progress of my mum’s life. Her pride was palpable.

When alone she cycled to town on a traditional Raleigh, with basket attached at the front. She carried on cycling until she was at least 80, and stopped only because when the pedals hit her legs her skin was no longer recovering. Her energy never seemed to dim. She would wander up and down her patch of garden, her ‘field’, behind her end terrace home, chatting over the fence to the neighbours.

Nan told me all the gossip about her neighbours, presuming I suppose that as a young child I would neither understand or remember, although I do, still, recall how she laughed at how loud her neighbour had his telly and knew all about the illnesses of the couple across the way.

When she was 82 she went into the hospital for a hip operation and, while there, had a stroke. Ironically, the operation that should have prolonged her ability to remain active and care for herself quite likely caused the stroke that ended her movements.

I don’t recall every detail of visiting her immediately after her stroke. I was 15. My nan lay in her hospital bed, pale and frail and propped up against pillows, and it seemed to my uneducated gaze that the left side of her face lacked some movement. No one had told me what had happened, of what to expect, or maybe they didn’t know either.

But I recall exactly what she said to us, my mother, my uncle, my brother and I, as her right hand plucked at the bedlinen, her left side motionless and her head seemingly too heavy for her to even lift from the pillows. She whispered, and yet her words were clear in the noise of the ward.

I wish I were dead.

That’s all. Five simple words, that sent my family off to the corner to hug and cry and left me, 15, patting her ineffectually on the hand and trying to tell her something, anything, that would make it okay. Make her better.

A key argument against allowing assisted death is that family may pressure their elderly loved one to ‘volunteer’.

I know that, had my nan been able to choose, on the day, she would have chosen to die on her terms.

I know that my mum, my uncle, my brother and I would have done everything in our power to fight against that choice. To keep her with us for as long as possible, even trapped, as she was, in her traitorous body, no longer the strong, independent woman she had been since she was 54.

Imagine that we had. Who would have cared for her? Would we have taken her into our home, where my mother would have had to give up her job to ensure nan was fed and washed and assisted her to the toilet? Would my mother have had to give up her own independence and career to care for her mother, who had already lived her own life on her own terms? Of course, we would then had had to leave our schools – paid for in part by my mother’s wages. So, an end to the education and opportunity we children were given in our lives.

We would have done, don’t doubt that. We loved her, we would have given up whatever we could for her. And don’t doubt, my nan would have hated that. She raised her daughter to challenge life, to live it, not to care for her.

Or would we have put her in a home to be cared for by a stranger, who would wipe her bottom, see parts of her no one had since my grandfather died. Spoon feed her. Change her. Remove all last traces of dignity and leave her, trapped and bored, in a chair all day. For years. She would have hated that even more.

My nan passed away naturally just a short week later. She never left the hospital. There was no decision to make. Fate treated my nan, at the end, with compassion.

1000 Voices for Compassion

I read an article recently in the Daily Mail about Britanny Maynard, a brave young woman who wanted to die in her beautiful four poster bed, surrounded by her family. She knew who would be in the room and gave instructions on how her death would be, peaceful and pain free, and with ice-cream. Her parents wanted to believe that modern medicine would produce a miracle that would remove the tumour that was stealing their daughter, but accepted that the chances were unlikely, and the trying would cause her pain and suffering.

Brittany Maynard chose how she wanted to die. But due to legalities, she had to move home to another US state to be able to do so with dignity.

Imagine now that you, or I, are ill. Terminally, but without a definitive period of time left to endure. We could be left for years, perhaps with Alzheimer’s, slowly losing our capacity to tie our shoelaces, find the car we left an hour earlier, remember the name of our child.

Or perhaps we know exactly who we are, and where we are. Perhaps we can see and hear our children and grandchildren and love to listen to them talk and laugh, but we cannot speak.

Or move.

Or even lift our hand to stroke their hair, touch their face, hold them close.

And we hear their love for us, even as we hear the frustration and anger growing as they tire of endless months and years of wiping our bodies and feeding us, and the hours they spend caring for our old, useless bodies instead of concentrating on their own children.

I know I would hate that. I would rail against my fate. I would scream, silently, inside my head, and go on screaming, endlessly.

Trapped.

Setting me free from that prison – that could only be an act of compassion.

There are many arguments for assisted death. There are many arguments against it. I cannot argue them all, here and now. I cannot voice them any more eloquently that Terry Pratchett, that master wordsmith, who faces a future where he will lose the tool of his trade, the love of his life, the brain that has been his motivator and reward since he learned to read.

He chooses the right to end his own life.* So would I. Choosing to be able to control your own future, control your own fate and destiny, in these circumstances, surely this is the greatest act of compassion there is.

*To be clear, I am referring only to assisted death due to health issues in the terminally ill or those with a permanent and deteriorating prognosis, not to suicide in general.

1000 Speak for Compassion

 

This post was written as part of 1000 voices for compassion. This amazing idea began with two people who are both not only amazing writers, but whom I have come to know, just a little, through the power of the internet, and who show their love and caring for the world around them in their words, Yvonne Spence and Lizzi Rogers. Since their conversation over 1000 bloggers from around the world signed up to come together today, the 20th February 2015, to write about compassion. I am sure this is only the beginning!

 

 

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