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.





I just can’t, I just can’t, I just can’t control my life

May 12th is ME Awareness day. Is there anything left for me to say? The regular reader knows that I woke up one day nine years ago and couldn’t move or think or begin to figure out what on earth was wrong with me. A bit of a bug, perhaps? A nasty flu? Flu is horrible.

Weeks turned into months. Months became years, and into the foreseeable distance.  I stopped expecting to back to work on Monday. I stopped hoping to get better. I lost my job, my normality, my future, and I’ve been making it up as I go along ever since.

Limbs of lead, random muscle pains, anxiety, depression, cognitive problems, constant exhaustion, concentration difficulties- years and years of it.

I’m one of the lucky ones. I spend a lot of time in bed, but I’m not bed bound. I can leave the house. Spurs Fan works hard to prevent total squalor and starvation round these parts. Girls keep an eye out for straighteners switched on, pots boiling over. Nobody complains about burnt or undercooked offerings. We are content with a reasonable level of grub and crumple.  I have good friends who ensure I have a social life, however limited. I can volunteer. I have the internet.

ME is not ‘in my head’. Two courses of Cognitive Behavioural Therapy, the anti mad tablets, and a 12 week Condition Management Programme haven’t cured me. Painkillers, a hot water bottle, a footstool, and a comfy bed are my medications. Even the social security agency accept that I’m not fit to work. Irrespective of my health, they could change their criteria at any time. ‘Control’ over one’s own life is an illusion; if we are lucky we can merely ‘steer’.

I manage by finding ways to make a difference in the world. There’s nothing dramatic about how I volunteer, but it makes me feel useful, and the results help others connect.

I manage by running away to Donegal when I can. My mind is cleared by wind, sea and emptiness. We all come back to ourselves on the beach.

I manage by reading and by exploring the outside world virtually. My current read is An Astronaut’s Guide to Life on Earth, by Chris Hadfield. Hadfield is a skilled communicator and storyteller, as well as being the guy who brought us Bowie from space. Although I read plenty of crime and pulp fiction, I like books which make me view my world differently, which make me think, but which are easily read. My brain can’t cope with academic reads; I am the mass market. I like to sing along.

Singing along is a key ME survival technique for me, despite not being able to sing. There are enough can’ts in my world.

I manage by trying to remember who I am. I am me. I am not ME.


For the keen, some previous posts on my ME experience…



how to write a thank you letter

Often, I am either asleep or anxious. I’m getting better at putting myself ‘out there’, less afraid of saying the wrong thing, confident in my knowledge and experience, but still, the anxiety sometimes wins. I either shut down totally or burble non stop. You know this.

Support, calming reinforcement, can come from the most unexpected places.

thank you from NIHRC

Of course it’s a form letter. Every organisation or individual who made a presentation will have received something similar. I hope everyone felt as good about it as I did. I hope FM and @imonlyslightly felt as good about it as I did.

I waved it at Spurs Fan and Dawnriser, beaming, as if it were written just for me. ‘Clear’, ‘articulate’, ‘able advocate’- he means me, he said that about me! I glowed with pride, and decided I could talk to any body, any time, no fear.

In truth, we can imagine that the reality of the thing was somewhere between his glowing remarks and my memory of the presentation, but for now, the reality is unimportant. How often do you get an official letter that actually makes you feel good? That’s not looking for money or blaming you for not being well enough to work?

A letter of thanks that gives a gift of confidence at the same time- I’m going to learn how to do that.