re-defininition

when i started writing yesterday's post i had a different shape in mind for it. but as so often happens it had a life of its own and went its own way.

what i had wanted to say was that the friend who was living with terminal illness refuses to let it define her: she goes on courses to learn skills that she may not get the chance to practice, she brings people together who can enrich each others lives, she spreads positivity and energy in abundance. what i planned to say was that if someone facing such a challenge refuses to let something so huge define them, then i too can change how i define myself.

i wrote yesterday's post in my lunch hour at work. as i left work i received a text. it was from the woman i wrote about. she had been to her oncologist and been told that the tissue that had been thought to be lung cancer, therefore secondary tumours, hence the death sentence, was in fact much more likely to be scar tissue. this means that the cancer has not spread to her lungs. which in turn means she no longer has the figure in the hooded cloak in the corner every time she looks round.

my joy at this news was not just for her, and for her life, but for her little girls, who will no longer face growing up motherless. they will have a mum there when they start their periods, when they have their own babies, when they are hurt and when they are proud. they will have a mum to fight for them and cry for them and laugh with them. such a gift is beyond measure.

and she will redefine herself too. she may be able to slow down a little; take some pressure off herself. she has time now to do the things she wants to do. she is no longer defined by the prospect of an early death, but by having gone through that experience and come out of the other side, wiser and more alive than ever.

definition

something i read yesterday made me think about something i said recently.

i answered an ad from someone who needed volunteers to dig her garden. she has terminal cancer and young children. i thought the one thing i have a fair bit of these days is time, which she doesn't. it turned out she is connected to me via her daughter, although i didn't know it when i rang her.

we were sitting having coffee with some friends last week and the conversation turned to what makes us tick. i found myself saying, in a voice that sounded like someone had their hands round my throat (as i always sound when on this subject) that i had left my mum when i was 8 and that it had defined me and shaped everything i did to one degree or another. the minute i said it i thought how absurd it sounded; a woman of nearly 50 on the outside and only 8 years old on the inside.

another thing that came into the conversation that day, as we all had connections with autism, and also with twins, was that i said i thought my mum might have been autistic and that her identical twin probably was too.

i spend much of my life as an advocate for my son; telling the world how he sees and feels things (at least how i think he does), fighting for his rights, nurturing his talents and tending his hurts. i like to think i understand a fair bit about life on the autistic spectrum, both through my son and myself. yet in all this time i have never really given a thought to how the two things interacted in my mum's case.

her fear of germs, her obsessive compulsive tendencies, her social prickliness, her apparent lack of sense of humour, her chronic anxiety. how did these things fit with a series of violent partners, a wild, uncontrollable, hyperactive child, a world where women were supposed to toe the line and be submissive? how did she manage as a woman with intellectual interests, self-taught and proud, on a rough council estate? was she aware of the laughter at her flamboyant clothes, her wide-brimmed hat with a red rose, her lipstick, her vowels? did she feel alone; adrift?

i have in the past looked at her rejection of me as a function of her being a twin. that she had already known too much closeness. but maybe the explanation lies elsewhere. what if there had been more support and understanding? would she have felt she had to give me up then?

i will never know the answers to these questions. but i am coming round to the idea that i have to work towards re-defining myself. i have to take up the mantle of a fighter, a woman of integrity and strength, humour and kindness, and leave behind the 8 year old with an empty space inside. until i do that i have one hand tied behind my back.