annanotbob2's Diaryland Diary

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Day 89

Stayed in bed all day, till 6.30 when I got up to do the Grief Encounters writing workshop. It was intense. We did four different bits of writing, a warm up, a ten minute piece telling what had brought us to the workshop, a dialogue between ourselves and a challenge we face - I found this quite tricky - and a final bit directly about grief, ten minutes, and this is what I wrote for that:

No one ever told me that grief would come and go like it has. That it could start so long before the actual death, years before. My grief started in 2013 and hit me like a rock, knocked me over and out, for weeks, months, years. I'll never be who I was before Sam was too far gone to ever come back. But even then, in the thick of it, I could fold my grief into a tiny ball and put it in my back pocket and drive up and round the M25 to say, "Shall we go out? Shall we feed the ducks on the river at Marlow?" And strap her in the van with a million belts and buckles and drive and throw bread and laugh and only weep in the car on my way home. I got used to my grief. to living with it, to having resting bitch face, to being unable to raise a smile, to wanting to punch people with healthy children. This last year, the last year of her life, my grief was knackered, frankly, didn't have the energy to make me feel anything much at all. Automatic pilot kept going right to the end, all feeling gone, just efficiency, getting it done. End of life plan? Done. Do Not Resuscitate Agreement? Done. Calling the family to come and say goodbye? OK, no probs. Daughter's funeral? Sorted. And then my grief started playing hide and seek. Gone for ages, then back, loud and clear with bells on, on the bus, at the sight of a small girl in a red headband.

I don't think it's all strictly true, but it's what came out.  I cried a lot while writing - I was hoping to find Sam in the process, to somehow make a solid connection to the Sam that existed before her brain was fucked over by the MS, but that didn't happen, and probably won't. It was too long ago and too much has gone on, my own brain is pretty fogged up now. I wasn't going to write this bit up, but I will. It was in response to 'what brought you here, to this workshop on grief?' Before we started the guy read out this quote, "Writing is like driving at night in the fog. You can only see as far as your headlights, but you can make the whole trip that way." Doctorow. Ten minutes.
She was diagnosed in 2000, when she was 22. MS. Relapse and remit, they said. A disease you die with, not of, they said. And so it went for ages, she was still herself, just had episodes of illness, then gradually her legs weren't much use, she needed a stick and from then it was eight years to the care home and another six till she died. And she went so slowly, in such tiny losses, that we didn't know, we didn't see, we didn't ask the right questions, we didn't prepare for the way it went. And Sam, my darling daughter, in the true wholeness and depth of her being, faded so slowly I can't get hold of who she was any more. She only spoke about ten words in the last two years of her life. She couldn't move - she did snort when one of her care workers said she liked Bruce Forsyth when it was Springsteen on the radio, just a few days before she died, so she was still in there, right to the end. I wonder all the time how it was for her - she nearly died in 2017, was in a hospice for end of life care, came back from the brink to lie in her bed, blinking once for yes, twice for no and then not even that. I want her back. I want to talk to her. I want her to answer my questions. I want her to have more time. I dream of her sometimes, back to herself, talking non stop, telling me and her sister what we're doing wrong. We rolled our eyes behind her back in one dream, just like we used to.

I'm getting up again tomorrow. Probably. Maybe. Or not. I still feel tired, but I've let it get round to 12.40 again, which is a bit shit. And I want some chocolate or biscuits or cake or some fucking thing with sugar in.

Today I am grateful for: Bloke bringing me food in bed; and taking Shirley for a walk; getting onto that workshop; furry slippers, even in June; British history getting a proper seeing to for the racist shite that was done by our ancestors - having non-white kids alerted me to a lot of stuff - Daughter is 37 so I've had years of getting my head round the fact that Churchill was deliberately responsible for the deaths of untold masses of Indians and is not the hero of popular legend, to name but one example. Not that I'm an expert, but I find myself surprised at what I do already know that turns out not to be common knowledge. Like our role in the slave trade - I thought we all knew about that, but apparently not. Till now - brilliant, pushing that fucker's statue into the river. Imagine having a statue to a slave trader - it's like flying the confederate flag - it says fuck you, we don't care what you think - awful. Please God let this be the turning point to a better world.  I've ordered a load of books to educate myself further, but I don't really know what I was thinking - I can't concentrate on anything for long. Brain jammed full of shite. More needs to come out before I can get more in. I need a big thought-vomit.

Night night x

12:55 a.m. - 09.06.20

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