starting over

The holidays are finishing, decorations are waiting for the boxes, schedules are reappearing from under the mince pies and wine.

There are no ‘resolutions’. We muddle through and do the best we can, even if we sometimes try to shift our focus to different aspects. There’s no need to resolve to do that; it’s “do or do not”.

Our ‘all the good things’ jar has started re stocking. I love this random collection of  notes about good events gathered up during the year. We had several notes about Girl2’s netball team winning a regional competition, a note of clothes drying weather last March, and a reference to the circa 1985 souvenir from Knock sunvisor we were gifted during the summer. Not what you’d find in most of the reviews of 2016. We can go for ages without adding things, and some of the stuff reflects otherwise forgotten moments (Speccy lost some weight!!!) causing New Year hilarity.

I have a pristine work book ready to start the year. I love new note books, and always aim to be neat this time. That never works. I’m incapable of neat. Neat doesn’t have arrows and squiggles to join up thinking, or asterixes to remind me of the important stuff. When I grow up I’m going to take neat notes on a tablet, and know what they mean the next week.

Our charity has a million tasks to complete in the next few months, and, prior to the break I was feeling overwhelmed. How could we do it all? What would happen if we couldn’t meet the challenge? What if my brain stopped working and I couldn’t be an effective Chair? I’ve spent some time sleeping and reading and hanging out with my people and those issues haven’t crossed my mind. Now they’re back and I know I can handle them, with a bit of planning. I need to switch off. I need to read more books, listen to more music, take more walks, if the overwhelm is to stay away.

I can do that. Reading is good for me.

Happy 2017, bloggy buddies. Plan to be good to yourselves.

it’s not rare to have a rare disease

My volunteering life is about rare disease; I know the stats, I know some of the people. When I have brain power, a significant portion of it goes to scheming and plotting and connecting and advocating and talking about rare disease. It’s not an abstract, it’s the reality of people’s lives. It’s the kick in the gut when we see a family on a flight, on their  way back from Great Ormond Street, or we spot the specialist wheelchair in the shopping centre. It’s the reiteration of experience when we listen to people tell their stories, which could be ours. It’s the blow when there’s another diagnosis of something complex or terminal. It’s the shock when we lose one, however predictable that loss.

We lost one tonight.

My Uncle Paddy. With Olive for over 60 years, father to the Incredible Singing Cousins, grandfather to The Next Generation. A kind, gentle, and much loved man.

He had Progressive Supranuclear Palsy, the rare neurological condition that killed his sister, my mother Herself, and a family friend, Kathleen. Three people from the same parish, all connected, all with the same rare condition which is difficult to diagnose, and for which there is no treatment or cure.

I can rant about many things. I can talk sensibly about rare disease issues. But, it seems, not tonight. Tonight, I’ve run out of all the words I use. Tonight, I miss my people. Tonight , I grieve with my people.

I had plans

Yeah, well, we know how that goes.

This plan was to go to a conference, abroad. Experience had taught me not to go on my own. This time there were to be three of us, sharing the load of worthy talks, finding our way and having fun. We produced a poster, like proper health conference people. I had plans of mingling and learning, followed by meandering happily through cobbled streets and a chance to explore Brussels.

I had concerns, of course. It would be a huge energy commitment. Could I realistically do that and recover before 2017? Part of my enthusiasm, undoubtedly, was to overcome the many minor traumas of my last conference travel attempt. I wanted to participate without the melodrama.

 

 

And then a headcold turned nasty, despite me trying to kill it off with days of medication. I was floored, sneezing & spluttering. My inner ear protested crossly when I moved my head. My nose, well, you can imagine… The cough still sore and tickly, its full joys yet to come.

Travelling, mingling, thinking- all given up for hot water bottles, cold ‘fixers’ and even more time in bed than usual.

Right now, fellow volunteers are doing their thing- learning and chatting in a beautiful city. They’ll talk about their experience, our charity, about patients changing policy, about working with pharma companies, accessing clinical trials and treatments, about impact & funding, and making a difference.

I am the great unwashed, snuffling on the sofa. I’m never going to be a jet setter am I?

 

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.