Monday, July 19, 2010
I was tidying the house yesterday when I came across a notebook.
My house is full of them, all at the moment in huge disorder: some are more or less irregularly kept diaries, some are books in which I have written the rough first draft of plays. Some are both.
This one was mostly a diary.
September 2005: I happened to open it at an entry where Susie was in what I thought were the last stages of her illness.
Because death by brain tumour seems a largely unresearched process, and since we had been told in August she had only days, maybe weeks, left to live, we lived in daily fear, and had no means to understand what was happening to her.
I'd gone to sleep that night and was woken up by the sound of her waking up and heading unsteadily for the toilet. When I went through to make up her bed, I discovered she had shat in it. And hastily changed it, because I didn't want her to know. She was horribly humiliated by such things.
She came back before I had finished, and pushed past me like a sleep walker, and fell unconscious. Her breathing became hideously laboured, and she started convulsing.
I thought this was her dying, and phoned the doctor. But because his was the first night of NHS 24, the doctor's surgery was no longer accepting calls. And I couldn't remember the new nhs number, and I couldn't find pen or paper to write it down, and all the time I was in total terror of her dying.
But when I did get through, the woman at the other end was marvellous, and told me what to do, and kept me together with her calmness and her knowedge and her professionalism until the ambulance came.
Which was another crisis, because the gate into our yard was locked, and I was torn between Susie and the phone and trying to find the key, and out in the courtyard in my dressing gown and nightie trying to explain.
But the ambulance people were good, and I threw on some clothes, and they took us to the Western. Where a doctor explained Susie was in status epilepticus, and her survival was problematic, and they had put her on a ventilator.
I should bring in the family, the doctor said, and I also said Susie would not want to be on a ventilator, I think somehow in the midst of my distress, and she said: "Susie has a fifty percent chance" and I said, we must take it, and phoned my two daughters and Susie's mum, and they call came.
It must have been about 1am.
I don't know when it was the doctor came back, and said "She's breathing on her own". Some time later they had tidied her up, I guess, and let us see her, in the ressuscitation room, a terrible inhuman space littered with so much equipment Susie herself looked very small and insignificant beside it.
But there she was in the midst of it all, looking and breathing so peaceful, and we each kissed her and told her we loved her and went home.
I think it was about 5am, but I was up again to be at the hospital for 11, and she was in an assessment ward surrounded by men, but that's another story, with all the screens around her, and with a eing attached to her nose in a vaguely punkish kind of way, but the ring was attached to a terrifying, huge, steel tube that they'd shoved down her throat to open her airway, and left in, just in case, I suppose.
It was tormenting her in her semi-conscious state, and I had them remove it, and then there were the usual fraught discussions about where to dispose of her in a system that was completely overflowing.
She kept saying, "Ask me questions", and I didn't understand, "Ask me. Ask me" with a piteous kind of urgency and it was only later in the day that I understood, when all was calm again and she was in a side room in a cancer ward: she wanted us to ask her questions like: "What day of the week is it?" and "Where are you?" and "Who is Prime Minister?" so she could answer them and prove she had not completely lost her mind.
All this came flooding back yesterday, with my back sore, and the tears coming: because all of it has been stored in my body all this while.
Later we moved the trestle she used as a desk and had installed in the upstairs room right after it was built, in 200 or so, and which has not been moved since.
My desk was just beside it; I suffer from an allergy to dust, and have frequently been sneezing as I sit to work.
And no wonder: the trestle was thick with dust, layers and layers of it. Because I had not dusted the space at all.
And I was horrified by this evidence of self-neglect: the paralysing inheritance of grief.
My house is full of them, all at the moment in huge disorder: some are more or less irregularly kept diaries, some are books in which I have written the rough first draft of plays. Some are both.
This one was mostly a diary.
September 2005: I happened to open it at an entry where Susie was in what I thought were the last stages of her illness.
Because death by brain tumour seems a largely unresearched process, and since we had been told in August she had only days, maybe weeks, left to live, we lived in daily fear, and had no means to understand what was happening to her.
I'd gone to sleep that night and was woken up by the sound of her waking up and heading unsteadily for the toilet. When I went through to make up her bed, I discovered she had shat in it. And hastily changed it, because I didn't want her to know. She was horribly humiliated by such things.
She came back before I had finished, and pushed past me like a sleep walker, and fell unconscious. Her breathing became hideously laboured, and she started convulsing.
I thought this was her dying, and phoned the doctor. But because his was the first night of NHS 24, the doctor's surgery was no longer accepting calls. And I couldn't remember the new nhs number, and I couldn't find pen or paper to write it down, and all the time I was in total terror of her dying.
But when I did get through, the woman at the other end was marvellous, and told me what to do, and kept me together with her calmness and her knowedge and her professionalism until the ambulance came.
Which was another crisis, because the gate into our yard was locked, and I was torn between Susie and the phone and trying to find the key, and out in the courtyard in my dressing gown and nightie trying to explain.
But the ambulance people were good, and I threw on some clothes, and they took us to the Western. Where a doctor explained Susie was in status epilepticus, and her survival was problematic, and they had put her on a ventilator.
I should bring in the family, the doctor said, and I also said Susie would not want to be on a ventilator, I think somehow in the midst of my distress, and she said: "Susie has a fifty percent chance" and I said, we must take it, and phoned my two daughters and Susie's mum, and they call came.
It must have been about 1am.
I don't know when it was the doctor came back, and said "She's breathing on her own". Some time later they had tidied her up, I guess, and let us see her, in the ressuscitation room, a terrible inhuman space littered with so much equipment Susie herself looked very small and insignificant beside it.
But there she was in the midst of it all, looking and breathing so peaceful, and we each kissed her and told her we loved her and went home.
I think it was about 5am, but I was up again to be at the hospital for 11, and she was in an assessment ward surrounded by men, but that's another story, with all the screens around her, and with a eing attached to her nose in a vaguely punkish kind of way, but the ring was attached to a terrifying, huge, steel tube that they'd shoved down her throat to open her airway, and left in, just in case, I suppose.
It was tormenting her in her semi-conscious state, and I had them remove it, and then there were the usual fraught discussions about where to dispose of her in a system that was completely overflowing.
She kept saying, "Ask me questions", and I didn't understand, "Ask me. Ask me" with a piteous kind of urgency and it was only later in the day that I understood, when all was calm again and she was in a side room in a cancer ward: she wanted us to ask her questions like: "What day of the week is it?" and "Where are you?" and "Who is Prime Minister?" so she could answer them and prove she had not completely lost her mind.
All this came flooding back yesterday, with my back sore, and the tears coming: because all of it has been stored in my body all this while.
Later we moved the trestle she used as a desk and had installed in the upstairs room right after it was built, in 200 or so, and which has not been moved since.
My desk was just beside it; I suffer from an allergy to dust, and have frequently been sneezing as I sit to work.
And no wonder: the trestle was thick with dust, layers and layers of it. Because I had not dusted the space at all.
And I was horrified by this evidence of self-neglect: the paralysing inheritance of grief.
Labels: Self neglect in the face of grief
Subscribe to Posts [Atom]