dangerous women

Even the least of us can be seen as ‘dangerous’. Some time ago, ME patients were described as ‘dangerous activist nutcases‘ by a psychiatrist on twitter. I was both outraged and baffled, but that’s no surprise.

Spurs Fan and I went to a concert in a church this week, and it was fabulous. Bridget O’Neill, Mary Coughlan, Aoife Scott, Frances Black and Sharon Shannon amazed us with their talent and their power. Frances sang of her politics, Mary sang of her troubles- I knew my oldies would have enjoyed Seduced  and songs of social justice from an altar. Entertainment with an edge. The edge makes all the difference. The edge is risk taking, taboos and danger.

But reading books and listening to music isn’t often dangerous in these parts. Real life is.

Dangerous women have been in my head all week, because of the 4,000 dangerous mothers article by my mate Sharon Thompson. It’s a powerful, shocking, moving piece. Please read it. When I grow up I’m going to write as well as Sharon does.

A danger is defined as ‘a hazard, threat or menace.’ The business of motherhood is very dangerous. But you’re told, ‘you’ll be fine. You will know what to do.’…

So – Your child and yourself are alone. Tired beyond measure you’re surrounded in scary, essential equipment. Things like feed pumps and machines that beep. You hate it all but had to fight tooth and nail to get the cumbersome stuff…

This will happen again you know it will. But when? How? Will they be screaming in pain next time? Will you know what to do? Will it be at a time when you finally have a nurse? It’s right to want your little one here with you always –isn’t it?…

There you are, sipping your cold tea, watching your child’s thin chest move up and down…

I myself surveyed 36 mothers of life-limited children. One question stood out. ‘Do you feel you can cope at home with your child’s condition?’ 34 mothers out of 36 said – ‘No.’ One asked me not to ask that question…

Wanting and demanding that your child’s life and death is as safe as possible should not be considered dangerous. Yet in 2016, these women are supposed to cope alone, with meagre charitable supports and when it’s all over – they’re expected to disappear and be silent. These women are expected to no longer be dangerous…

 

For further thinking on what it means to be a dangerous woman, see the Dangerous Women Project, full of challenge and learning.

the girl with the bow

Breslin 1930

We can see so many of ourselves in the picture, we of the next generation, and the ones after us. From the pictured parents, there are 108 of us. There is no fault in not knowing everyone. But Mary did. The girl with the bow knew everyone.

She left us this week, aged 92. Most of her 12 siblings went before her. I kept being taken aback that there are only 5 of the ‘grown ups’ left.

Mary was the eldest auntie, a big part of all of our lives. She was always there, full of smiles and gentle wit, love and laughter, hard work and hard won wisdom. She was our backbone- central, strengthening and supportive.

Her brothers and sisters, and later, nephews and nieces got most of her time and energy. Somehow she managed work, family, volunteering and fun. She helped set up the parish youth club, she played a mean hand of whist, she recited poetry. In her last days she told a visiting priest Chesterton’s Donkey, to the delight of all. She spent much time in her mother’s home parish of Gweedore. We all spend time there when we can.

We have to adjust now to a world without Mary. We all worry about the youngest auntie, who has lived in the family home with Mary until the extra care of a nursing home was needed. Mary has been her constant, and, in recent years, her main focus. She will have the most adjusting. But there are lots of us. We’ll be there. It’s what we do.

It’s what Mary and the other grown ups showed us how to do.

cousins
cousins

 

 

you only die once

This article comes from Dying Matters, a UK  campaign to promote awareness of dying, death and bereavement. It promotes understanding of death as a natural part of the life cycle- not a subject to be avoided or ignored, not ‘awkward to mention’ or ‘best avoided’.  It encourages discussion and the development of death plans, so that people can explore how and where they want to die.
Kate Granger is a terminally ill young doctor, open and active on social media about her life, death, and treatment experiences. She is working to ensure that the health services remember that patients are people, not diseases, symptoms, or conditions.

You Only Die Once: Kate Granger’s story

Doctor and writer Kate Granger gave the second ever Dying Matters Annual Lecture on Monday evening to mark the beginning of Dying Matters Awareness week, which runs from 12-18 May.

Kate, a Specialist Registrar in Geriatric Medicine, has incurable cancer. After five gruelling rounds of chemotherapy following her diagnosis with a rare and aggressive form of sarcoma in July 2011, she made the decision to stop receiving treatment and concentrate on enjoying a good quality of life.

Since then, Kate has written two books, and blogs and tweets extensively about living with cancer and, in particular, her experiences as a patient. She has also launched the “hello my name is” campaign after becoming frustrated by the number of medical staff who failed to introduce themselves to her when she was receiving treatment.

The lecture ‘You Only Die Once: Kate Granger’s story’ took place at the Royal College of Physicians in London. As part of the event, Dying Matters commissioned a film of Kate and her husband, Chris.

Watch Kate and Chris’s film

 

You can follow us on Twitter at @Dyingmatters. You can also follow Kate at @GrangerKate.

'You Only Die Once: Kate Granger’s story' was produced by FlixFilms, who have made several films for the Dying Matters Coalition, including 'I Didn't Want That' and 'Dying to Know', both of which were selected for the Cannes Film Festival.
The Dying Matters Coalition would like to thank the Royal College of Physicians for their support and funding which has enabled the lecture to happen.
More
Millions leave it too late to discuss dying wishes
Dying Matters Awareness Week, get involved
Kate Granger's blog

what just happened? life.

Only last week, but how the world has changed. Only last Wednesday I spent some lovely hours with bloggy buddies Yvonne and Lesley. Yvonne was home from Arizona with her daughter, and took time out from family fun days to spend with two local women she’d never met. Three of us gathered round a table, strangers but not strangers, a model of the connecting power of blogging. Friends, who happened to be meeting in person for the first time.

Yvonne, Lesley, me
Yvonne, Lesley, me

Days later, Yvonne was widowed. Ken drifted off gently in his sleep. Well and good, a lovely way to go. Not so much for those left behind. Those still thousands of miles from the Arizona heat. Thousands of miles, and an eternity away from him.

Yvonne has written a remarkable post. You should read it. Hug your loved ones when you can. Send positive, supportive vibes out into the world.

Let’s appreciate our boring lives.