So, Gillian Mears is dead. Mears was an award-winning Australian writer of novels and short stories, and last year released a children’s book. She lived on her property near Grafton, NSW, with a horse she wasn’t able to ride and a cat. She had MS.
Three years ago Mears addressed a state hearing on the Rights of the Terminally Ill Bill. She described waking up before dawn to painful leg spasms, waking up disappointed to be doing so at all, wishing that she’d died in the night. She listed some of the methods detailed in Philip Nitschke’s The Peaceful Pill Handbook. She told how she used to be opposed to voluntary euthanasia, but had changed her mind.
‘If unbearable indignities arrive before legislation endorsing voluntary euthanasia,’ she said, ‘I imagine I’ll have no choice but to take my end into my own hands.’
Mears and I were the same age. We were both diagnosed with MS in our early 30s. I’m an aspiring writer … you can understand why I might have felt an affinity with her. Her 2013 address left me feeling shocked and scared.
I know those spasms she spoke of. I’m on medication that lessens their frequency. Mine, too, start at about 3am. Sometimes my foot can suddenly curl inward at the ankle; I have to pull myself up, reach down and wrench it back again. Sometimes my leg muscles seize and I can’t bend my knee. If, one night, I get both together, I’ll be very grateful there’s someone in bed with me. Mears lived alone.
The ‘unbearable indignities’ she alludes to I can only imagine, but I’m qualified to imagine them.
Then there’s writing. When I can’t walk, or even stand up, I can sit down and write. When I’m in pain, I write. When I’m too exhausted to do anything else, I write. There are days I feel that writing’s all I’m living for now, because my physical world and my ability to participate in it may be shrinking but when I write I have no limitations.
So when I first read Mears’ address, what shocked me most wasn’t the stark acknowledgment of her advanced condition, or that she was now in favour of euthanasia. No, what sent me cold was the revelation that she could contemplate suicide when she was writing. She had another book on the way. I thought, isn’t that enough to keep you going? You can still write, and so beautifully!
That’s when I realised that, one day, writing might not be enough.
Care to comment? See below.
Thank you for this piece on Gillian Mears, whom I had never encountered.
Jonathan, she wrote about family and tension and horses and rural life and death and such things. Some of her writing caused a great amount of upset in her own family. She was always true to her craft, sometimes at the expense of relationships.
Having nursed MS people in Melbourne in my early 20s I have a keen awareness of the condition.
It was probably the one thing that forced me to understand how fragile our lives really are – well, that and the death of a friend by tragic car accident.
Nursing MS people was also the influence that created a sense of ‘just humour’, with the whipcracking reality check that life a changing insight can offer.
If MS can create this path to the pill, and I remember the anguish of my experience in Melbourne, there are also other ways to the same destination. There are multiple paths to this place, and we often walk this way – sometimes unknowingly.
Such a post reminds me that every minute is precious, every sound, every leaf, every hair.
And in that, at least, we can derive some value from MS – but it should not take that.
Walking into the valley willingly needs a brave and noble soul, and tempered by the condition, the edge is keen indeed.
At least we are all headed this way. Some sooner, some later.
The pain, the injustice, the loss are costs one can only be forced to bear – and this might beset any one of us.
I take some ease from the deep and very powerful understanding from a life of study into the sacred structures of our forebears, structures that tell a most remarkable story to those who look – that life for us does not end – it continues.
This life? Yes this life ends for us, of course. And the end, however it comes, this is the door we can choose to enter. But our lives? No. We continue. We meet again. We live in many lives, dimly aware we have been here before.
For me this is a fact, borne out by the stories, the lessons, embedded in great buildings all over the world. We return!
I just wish, for me, a pill is all it takes. Thank you for reminding me.
Thanks for your insights, Geoffrey. I’ll admit that some days it’s a measure of my despondency that my mood is brightened by talk of euthanasia and the possibility of its legislation. But generally I’m still optimistic about my future–and my current life, which I try to focus on. There’s still something to look forward to every day when I wake up. Unlike Gillian.
Dear Jen,
Your comment on the death of Gillian is very moving and provides great insight and understanding to those of us without MS. Writing, the love in your life and your optimism will sustain you and when these cannot, you have the right to decide how and when the suffering is intolerable. Talking and writing about all the paths MS can take is of value to yourself and others. I was told once that life is a conversation – you enter at one point, participate and leave before the conversation is finished. Most of us do not choose when we leave but we can enjoy the conversation.
Thanks Julie. Someone said to me, after my last post, that people who don’t have MS might like more understanding of how it feels. But you’re right, I really just write to understand it myself. Love to you.