who are you now and who are you becoming?

The Sunday paper is doing its bit to support my plans to read more this year. A long listy article on essential reading and a ‘Yes, that!’ piece, A novel approach to life

We all ask each other a lot of questions: “How did you sleep?” “Where did you go on your holidays?” But there’s one question I think we should ask of one another as lot more often, and that is:”What are you reading?”

When we ask one another that, we sometimes discover the ways we are similar; sometimes the ways we are different. “What are you reading?”isn’t a simple question when asked with genuine curiosoity: it’s really a way of finding out, “Who are you now and who are you becoming?”

I like to read- crime, humour, light romance, worthy fiction, memoir. From time to time I buy books I’d love to read but don’t have the concentration for (Richard Dawkins, Owen Jones and others who try to explain the world to us). I seem to live in hope that my brain will magically recover the power to read anything beyond short factual articles and easy reads.

Just this week I had to stop reading the beautiful Prodigal Summer by Barbara Kingsolver, its complexities too much for me right now. I will get back to it, eventually. (see above)

I enjoyed two humorous, twisty puzzly books: The Rosie Project by Graeme Simsion & The Last Honeytrap by Louise Lee Each of these is part one of a series. Series are good for those of us with addled brains- familarity helps- but much as I enjoyed these two, I know too well the disappointment of discovering the formula too soon.

What are you reading?

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.

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?

 

because ‘coping’ is present tense

Life feels like pretending a lot of the time.

Pretending to be sociable.

Pretending to be capable.

Pretending to be healthy.

Everybody else is back at school and I’d hoped I’d be back in my volunteering routines, but it’s not happening for me. I have a long to do list again. I can’t get my head around making phone calls or talking to people I don’t know.

I went to a PSP support group this week only because Ditzy came to the door for me. I did the driving and it was a long enough day. There were giggles and gossip and hugs and sharing. Always exhausting. Always worthwhile.

The next day I left the house again, and I pretended. I had on a colourful top and red lipstick, and apparently that’s all it takes to seem switched on. I chatted about rare disease and advocacy and how people coming together makes a difference.

And I have been low and practically immobile ever since. I have been asleep or watching box sets (downloaded so no actual boxes involved anymore).

When I can’t do all that I want, I feel like I’m failing. That I’m letting people down. That I’m not contributing to any of the household activities. And then I feel bad, because I know better. I know I’m not failing, but feeling is a different thing. I cope better than I used to, but these days remind me of what I tell the medical students- that ‘coping’ is present tense. It’s present and active. I have to keep on doing it. My ability to do so varies.

Yesterday I read a fabulous essay by Melissa Broder, and much of it resonated. Not the open marriage bit (who’d have the energy?) but these words.

I don’t want to be defined by [his] illness. I don’t want people to ask me how he is doing when I see them. I pretend to people, especially to myself, that this isn’t hard. I don’t want pity. I want to be happy and have a good life. I don’t want to be sad. Or, I want to be sad about the things that I choose to be sad about. But I guess that is not how life works.

Sometimes I feel full of despair and cannot figure out why. Like I forget to equate the two things: the illness and the sadness. Then I wonder why I am sad. Then I get scared that my sadness is a free-floating sadness that will never go away. Sometimes I feel doomed.

And then I went back to watching Nashville and wondering when I’d fit in the world again.