annanotbob2's Diaryland Diary
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Remembering
No real change. I missed the consultant who did his rounds late after a 'busy' 24 hours and five new patients being admitted to fill the empty beds. Fuck. Really, this is brutal. I strike up a vague thing with a patient's wife/daughter/friend as we pass on the corridors or fetch up at the water cooler together and next thing you know their room is being deep cleaned and someone else is in there. But we are still here, hanging in the balance, not fully here but absolutely not yet gone.
Yesterday she recognised me clearly for the first time in ages and her face lit up.
Her belly is still distended as fuck but other than that she's the same. Peaceful. I tried to find some old blog posts about her but the internet here is very slow and I never give posts names that identify them. I did find this, which I think I reposted already, but unlucky, here it is again. This was the last time she came and stayed with me in my flat. April 2012
Entry 1
She had a session of acupuncture today, her first ever (home visit, D is double darling plus), which was also cool. Afterwards we went to the beach, where she walked quite a bit, using the chair for balance:
and hauled herself up the ramp back to road level, hanging on to the railings, which was brilliant. This was the first time we've made it to the beach and back, just the two of us. When we got back I was knackered so made her do the washing up, which pleased her even more. A good day.
On Friday one of my old school friends is playing in a pub/art house so we're planning on going. I haven't been to anything like that for ages.
Entry 2 Good day, with sunshine
Just as well we did resting yesterday as there was none of that today. We picked up friend S from her allotment and drove to the start of what was humorously described online as an 'accessible' walk in the countryside. It came up when I googled wheelchair walks, with a map and everything. Man. I am going to have to write a very stern letter to the council. We consider ourselves pretty hip and groovy round here, generally au fait with inclusion and making things possible for all, but people, as well as a smooth surface and easy-opening gates, there is the small matter of gradient.
From where we parked the car we could see that the path went uphill, but not too far or too steep, before disappearing into some woods which appeared to sit on the horizon, suggesting (if only to the geographically illiterate, such as myself, my daughter and my friend), that this was the high point of the walk. I was fucked before we reached the woods, but S is only forty, a young slip of a lass, and was keen to take over pushing duty. For a while. Then we did tag team till we emerged from the trees into a field where we all lay flat on the grass, some of us had a wee spliff and we all did a nice mindfulness meditation about feeling the ground beneath us, and became pretty chilled out, what with the sunshine and company, the birdsong and the view.
There was long discussion about which direction to take next, involving various passing dog-walkers who all said that the best route to the tea rooms, (only uphill 'a bit'), was across the field, through the next small clump of trees, and across another stretch of grass where a lane would lead us down to the village. S has GPS on her phone, which suggested that this would actually be bloody miles, but we didn't want to go back and the more direct path was precipitously steep, so we decided to follow the advice given.
First we had to help ED back into the chair, which was not as easy as any of us thought, took several attempts and could have made an amusing short film for those with a dark sense of humour. I internally but comprehensively lost the plot, becoming silent and almost useless, drowning in a sea of guilt and shame (dragging my poor girl up here, all full of bravado, not doing any kind of reality check before we started etc etc), and just kept on, probably with some kind of ghastly fake smile fixed on my sweaty face.
The woods were beautiful, trees just bursting into bud, violets and anenomes, all that nature stuff, very nice, but we were still going uphill and surely away from the village and my legs were starting to really hurt and S was in danger of becoming flaky if she spotted that I was and it felt like one of those awful dreams that go on and on forever until suddenly there was a path leading off to the left. S was pushing, so I went off to have a look and hurrah, through some trees at the bottom I could see village roofs. This path wasn't on the 'accessible' route, so hadn't been levelled, but was mercifully short and we'd soon bumped our way out of the woods to the top of an even steeper downhill slope than the one before, but one with a tea room at the bottom.
This turned out to be a cow field, luckily without cows, just plentiful evidence of their passing, in the form of dried out dollops of shit and great big holes. We didn't realise this till we were underway, me pushing ED in a zig zag style, across and down, while S strode out ahead, unaware that what I was attempting was fucking mental, lethal, undo-able. When you drive a car in zig zags up and down mountains, some other poor fuckers have been there ahead of you, carving out a flat strip so that your wheels are on a level, so that the left two aren't so much higher than the right that the whole thing is in danger of collapsing sideways and rolling into pain and grief. Oh my fucking God, my heart was pounding, ED was leaning her body uphill with all her strength, I was giving it plenty of silent om gum ganapatayei namaha as I gripped on to the handles for dear life, jolting and juddering along far too fast and awaited the inevitable.
But it didn't happen. We suddenly arrived at a much shallower slope, where some women were having a picnic and we were back in the real world, thank fuck. There was one last dodgy moment with a step down to the road, too deep and crumbly for the chair so ED stood and was leaning on me, but there was nothing for me to lean on and the ground was falling away beneath my feet, so that was exciting but we made it, all the way back to the road, with no blood and no bruises.
ED sat back in the chair, raised her arms above her head and yelled, "Pardon my language, people, but that was fucking AMAZING!" She loves being scared and was totally exhilarated, which was a bit of a result all things considered.
To the tea rooms, which has developed into a bit of a caff since I was last there, where we woofed down vast quantities of ham, eggs and chips, and the sun shone and all was well.
I took this picture at some point:
And tonight we went out to my old mate's gig, which turned out to be 'ambient electronica', apparently. In a big shed behind a small house. With a big screen. Man, the last forty years just fell away and there we were again, listening to blokes who don't look anyone in the eye making dissonant sounds with no attempt at rhythm, thinking it must be over soon, surely. ED just loved that as well. She has never even imagined such an event could exist - it was the icing on the cake. Mate played the middle set, following something akin to The Beatles Revolution No 9 (that bit on the White Album that you, like me, probably skip) but longer and worse, and preceding two blokes who sat on the floor surrounded by lots of things they could make a noise with, who pinged and rustled us to a glorious finale. Mate was accompanying a female singer and they were glorious. Blissful.
This is from a post a few days later:
And here's a couple of pics that S took the other day, when we did our cross-country expedition. Me having a restorative herbal cigarette:
which turned out not to be the ideal preparation for downhill wheelchair chasing:
but here we are, safe and sound.
And this:
It's too hard with ED, not because of her physical limitations but her mind. She comes and goes, her mood mostly good, but with sudden dives into the middle of events that are over. For example today she was upset about an unpleasant exchange of texts she'd had with SIL several days ago and had forgotten that it had led on to the better communication they had this morning. She was back at the beginning, and I was confused at it starting up again in exactly the same form till I worked it out. Too hard, much too hard.
Meh xxx
12:22 a.m. - 31.05.17
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