We had had frequent discussions about going on a holiday this year and given my deterioration decided that it was not possible. I have been bitterly jealous of happy holiday snaps on Facebook and all my friends plans. Having nothing but paralysis dad death to look forward to seriuouslly sucks so we thought we must do something given that I an still weak. Enter Mike and his new car a few drinks and a suggestion of a day trip and suddenly we are going to the west coast of Ireland which I’d wanted to visit since seeing Ryan’s daughter in 1970 . Sorry still weak should read still walk.
So we went ! Ferry to Ross Lair then b and b in Cork eat your heart Norman Bates!! Crazy ladeh who asked us how many rooms we’d booked!!! On to Killlkenny then Dingle where we saw the Dingle dolphin Fungie and then to Kilarney. A great holiday despite my terror and all thanks to dear Mike for all the driving!!
I started the week in a terribly bleak place. Going to a barbecue the previous Friday had started the descent into self pity. I m not blaming my friends of course normal people have to eat whet had I known I was going to have to watch people gorging on juicy sausages and kebabs I would not have gone. The pudding looked so enticing and then the chocolates were passed round whilst I sat typing out little phrases onto my I pad and getting gareth to syringe wine into me in the hope of dulling the pain. On Monday the stair lift people came to give us a quote.5000 pounds!!!! Tuesday was unexpectedly wonderful. My friend Helen who I have known since we were 16 came to see me and god how we laughed as she read my 1973 diary of a holiday 9 of us spent in a remote Welsh cottage where we mostly got drunk, stumbled around the mountainous terrain and argued. Happy carefree days with our lives stretching ahead of us. In the evening I went to see Twelfth Night at Hampstead Theatre which was fantastic. And then in the break a woman said to me ‘you look so pretty in our dress’ and given that I feel like a freak with my horrible collar and my drooling it made me feel pathetically pleased. I woke up on Wednesday in un usually positive mood to meet my carers who are starting with me next week. We all giggled through the peg training session that the district nurse took them through and I have taken an instant liking to both of them despite my resistance to being ‘cared for,’ Watching Dexer with my oldest son and a visit from my dear friend Mike ended my week.
Sorry for the lack of entries, typing is becoming challenging as we used to say about really difficult classes but I bought myself a wrist support thingy which helps. My legs are going now I can see the muscles wasting in them and discussions about stairlifts are frequent which is all very depressing. Tomorrow we are off to a disability showroom where I can try one out. Still I’ve lasted three years and compared to other people I’ve been lucky. One mnd friend is virtually paralysed land another the same age as me is going into an assisted living flat.
On a positive note a publisher has taken me on which still seems a bit unreal! I am still trying to live a normal life still going out to pubs still seeing friends, still running the book club. In fact I’m still amazed at how many of my old colleagues have contacted me and I have so many brilliant friends who keep me going. So to all of my wonderful friends, family and ex pupils, thank you so much.
I have been e passionate about Sylvia Plath since I first read The Bell Jar at 18. I wrote a special study about her, taught her poetry at A level and all my friends know what a Plath girl I am. So obviously an evening of her poetry at the South Bank was not an event I was going to miss. Gareth has always maintained living with a tortured woman was quite enough for a Welshman so it was down to my friend Keith to accompany me to a reading of Ariel read by a collection of various literary women to each read a poem. Her daughter Frieda Hughes introduced the evening and for two hours we were treated to the powerful, beautiful language of her finest work.
But for me the most magical moment of the evening was when Frieda Hughes turned round as we waited behind her for the lift and smiled at me.
Going away now is very much like going away with very young kids in that there is so much stuff to take for me and unlike years ago I m pretty useless now I can’t hold anything much so poor gareth has to do everything which meant he forgot part of the suction machine. I managed to quell my panic praying that I would not choke to death on my own mucus in Llundudno leaving gareth to cope wondering which film I d seen when a dead man is driven round as they don’t have time t deal with him. Trapped for hours in my own mind imaging my own death is a seriously scary thing. Will I know? Where will I be? But I must stop today I am alive. So despite the fact that it is still winter in Wales we walked on the pier had a few drinks and I bought a groovy pair of pink shoes! We drove past the cottage where me and 7 friends had spent two weeks in 1973 and remembered places we’d taken the boys to. We drove past Gareth’s old family home and went to the graveyard where Gareth’s dad Trevor had once said to us. You’ re a long Time dead. A bitter sweet trip.
I am sitting on in the garden enjoying the warm sunshine taking in the pink blossom the fresh green leaves and our newly landscaped garden. I shut my eyes and feel the hot sun caressing my cheeks when a bluebottle lands on me. Now you have to remember that I can’t raise my arms so I blow on it. It flies off and lands straight back in the trickle of slobber that has seeped out of my mouth and is slithering down my dress. I start thinking of an episode of Breaking Bad that I have just watched when Walt spends hours obsessed with a fly in his meth lab and feel a rush of empathy as this god dams fly will not get off me. Like Scrappy he seems to have taken a liking to my slobber. When my I pad over heats I decide that’s it and with one last attempt at blowing off fly I go inside. I am alone today and soon engulfed in my struggle to do anything. The house is boiling but I am unable to switch it off. I m boiling but cannot take my cardigan off. I feel tears of frustration not far away. Need my neighbour but I can’t reach her doorbell. I stand staring at it before staring at her through the window. She comes in to help me. An hour later I feel cold!!!!!!
My hands are turning into two disobedient little creatures particularly my left one whose fingers are refusing to straightsn out. But I m more concerned with my right one as this is how I communicate with the world. Not only that but hands do so much and it’s only when they start to malfunction that you realise what dear friends they have been to you. This morning I attempted to put some eye make up on but as my hands are at the end of even more useless arms this in involves some complicated moves. I stand in front of the fireplace and swing my arms like a mad monkey until they are resting on the mantelpiece. Then I hold the eye pencil and heave my elbows onto it and if I’m lucky I just about avoid poking my eye out and to think how east this used to be.
When you cannot talk you feel very vulnerable .if I am out I worry that someone might speak to me and though I have made a notebook of little phrases to use I am finding it hard to use my hands now so fumbling in a bag would only had to the stress. I have had a few terrifying taxi rides with the driver getting lost and me in the back seat getting hotter and more gripped by panic as we have driven round and round streets as I try not to cry with desperation. On one occasion my son strapped me into a taxi but didn’t free my hands so I felt as if I was being driven off to be sectioned unable to tell him that my poor arms were trapped. Once a taxi driver asked my friend if I knew where I lived and hysterical honking laughter did not put him at ease. “Don’t you know who I am?” I wanted to yell as I wondered if he would help to undo my seat belt at the other end because I can no longer do it myself. I know how toddlers feel and I have to admit to a fit of temper that resulted in me stamping on my husband’s foot when he insisted something was not in my bag when I knew it was.
On a cold dark January day Jan Ravens brought my book to life and it is now available as a CD! It was a strange experience hearing me only not me and there were tears from all of us huddled into the RNIB studio in Camden Sue Hollick kindly offered to pay for the production and her daughter Abby produced it. Keith, my editor, and I listened attentively offering advice when needed. So now I am speaking! so to speak and at least my dad can now hear my book.
Mildred has my hands now.They are weak and curling inwards…turning into two disobedient things which won’t obey me. At night thought I can talk and eat and live as I used to do…and each morning I wake up and yearn to be back in my old life so badly thinking the nightmare might have ended and I will be transformed back into a healthy person.
Having sunk to the depths of despair over Xmas I am trying to keep living in the world. I went to watch the rugby…have been to the cinema…. Played scrabble! Lost painfully…..and we have booked a cottage for a week…..
Well here I am going live and becoming a blogger which is a whole new experience for me it has to be said. The evenings are lighter and May approaches which is one year ago that I was given a year, roughly, to live. I am sitting here wondering if I will make it to May which seems a very strange thing to be writing. I suppose I should start thinking about my funeral just in case Mildred decides to finish me off in the next couple of months and then I will miss the third series of Homeland! Gutted!