Sunday, August 26, 2007
26th August
Yesterday I got a letter from Cruse. They are a charity that provides a counselling service for people who have been bereaved.
I've been seeing one of their counsellors for the past few weeks? months? and on my lats appointment, rather to my surprise, found myself saying that I felt somehow that this process was over.
Perhaps i was being premature: two days later i was back in hospital.
Who knows. Anyway, yesterday came a letter asking for a donation, which as proper, the usual feedback, and a request for personal experiences. Sometime, apparently, they can help with fundraising.
I must have some weird writer's instinct that I cannot resist; because before I knew it I was at my desk writing the account that follows. God knows if it will help them raise any money; or whether, in a deep sense, it should be published in any form.
But I also understand that I cannot resist.
So here it is:
It was towards the end of June 2004 that Susie had her first attack.
She said it was like some hideous gargoyle landed on her shoulder.
Something evil, with intent to attack her.
She thought she’d brushed it off, somehow, and that the wound was slight.
We all believed her, and believed the doctors when they said that it was only a minor stroke, that she would recover from it, and that there was no reason for us not to go on holiday later that July.
And so we went, and Susie bought herself a stick, of the kind that hikers use, and walked each day up and down the beachfront to recover her strength.
It was towards the end of the holiday that she seemed to be losing it again. Or at least she got dizzy again sometimes. And couldn’t always find her way from the hotel foyer to our room.
And in August, back in Edinburgh for the Festival, I remember trying to help her negotiate the crowds on the Royal Mile with the greatest difficulty. She had lost half her peripheral vision. It had suddenly gone.
And then the headaches began.
Hideous, agonising headaches, and constant phone calls to the doctor to get stronger and stronger painkillers. That never seemed strong enough.
Until in the early hours of the Wednesday she gave a cry and I found her unconscious. Strangely spread-eagled on the bed.
And that night, in the hospital, a grave-faced doctor told me they had noticed a shadow on her brain-scan. That they would transfer her to the Western where they’d be able to take a better look.
And a doctor there told me she would have to drill a hole into the back of her skull to take a sample of what looked very like a tumour. Just so they would know for sure.
The computers can tell us very precisely where it is, she explained, and they can guide us to the best possible route. But once I’m working inside the skull I’m working blind. It may happen I hit a blood vessel.
It all sounded incredibly crude. I couldn’t help but be reminded of trepanning, which they did in the Middle Ages: drilling a hole in the skull to let out the evil spirits.
By now it was Friday. Friday the 13th. They told me the operation had gone well, technically: they had located the tumour and obtained a good sample.
But the tumour they had found was of the most invasive and malignant kind. It was growing close to the brain stem, and there was no way of removing it. Most likely days, the doctor said. Possibly weeks. Gather the family.
I had to tell them. Tell Susie’s widowed mother, in her eighties, that her daughter was going to die. Tell my two daughters, 19 and 24 years old, that their mum was going to die. Tell myself that my life long lover and companion, who I had known for 33 years, was going to die.
Try to understand.
Although on reflection trying to understand was all a bit beside the point.
It was more a question of simply trying to cope. Cope with the endless crises that the tumour used to throw us into with what felt sometimes like deliberate malice.
The utterly unpredictable changes of awareness and personality and mood.
Keep organising the circle of astonishing kind friends who would undertake to be with her. Because she needed someone to be with her all the time.
To keep buying the groceries, cooking the meals, doing the washing. Trying to keep the house clean. Trying to keep life going in the midst of it all.
It wasn’t just a time of grief and torment: at the beginning, especially, every new day of life felt like a gift.
There were times of wild joy and deep happiness.
But it was as if the shadow they found that night in the hospital grew larger and deeper and blacker. As the effort to organise the daily trip to the hospital for radiotherapy seemed to become more and more intense. Radiotherapy whose effects no-one could predict, that seemed more and more like a gesture to ward off hopelessness.
As she suddenly one night entered status epilepticus – one fit succeeding the other without any understanding of why or how they could ever be stopped.
The tumour, I read somewhere, did not so much destroy the cells of the brain itself as the connections between its various centres: and more and more her mind seemed to be like a giant wheel spinning out of connection and control.
There were days and nights too when it seemed she would never stop talking.
Until one day, just before Christmas, she fell unconscious.
She was unconscious right through Christmas and into New Year. It seemed to everyone that this had to be the end.
It was a dreadful sad time, but it seemed right, somehow, that she should go in the house she loved among us whom she loved.
And then in early January she suddenly recovered consciousness again.
Only by now she had lost all strength in her legs and there was no way we could continue to nurse her.
She resisted going to the hospice with all her strength.
I fooled myself into thinking that they might help her there recover some of her strength so she could come home again. But she knew better; and I guess that was why she so fiercely fought going.
But in the end there was no choice. We were all beyond the limits of exhaustion.
The truly terrible thing about a brain tumour is that it turns the person you love into a total stranger.
It was a kindness for her, I suppose, in a cruel kind of way, because it shielded her, I think, from total awareness of what was happening to her.
But for us it was torment.
And those last 7 weeks in the hospice we were all torn between our desire not to lose her and our wish for the torment to end.
The nights were worse, because she was afraid and would never want me to leave her. It was like trying to settle a child who’s afraid of the dark and won’t settle: and you are tired, so very very tired, you just feel desperate for her to sleep do you can tiptoe quietly away.
And then one night she gave me a clumsy hug. I left her listening to a Burns song.
“Ane fond kiss, and then we sever...”
The next morning the hospice phoned to say she was unconscious.
For several nights and days we camped in the hospice, watching her in turns.
And then one afternoon, when I was in Marks and Spencer stocking up on grapes and sandwiches, sticky buns and bottles of wine – on the provisions to help us through the long night ahead – the hospice nurse phoned me, in tears, to say she had gone.
I don’t know how you ever recover from an experience like that. Or how, after being lucky enough to love someone for most of your life, you manage to create a new life after they’ve gone.
Perhaps it’s just not possible: I am still in the process of finding out.
But what I do now is that when she comes to me in dreams, as she still does, the dreams are different. In the beginning, they were a torment. It was unbearable to wake up after them and remember, again, that she was gone.
But now, when she comes, and she is always young and full of joy and life, it is a comfort, somehow. It is as if it’s a reminder that in some ways she will always be with me: that the love we have felt, the love we have truly and deeply loved, never completely leaves us. Is never completely lost and gone.
I don’t understand that, and I don’t understand the process that has made it come about.
But I do know that being able to talk about it all and cry over it all with someone who listens and is there for you without being embarrassed or heart-broken or ashamed all helps somehow.
And it is true, I think, what they say: that time can heal. And that life does, in spite of everything, still go on.
Jo Clifford. Edinburgh, Sunday, 26 August 2007.
Yesterday I got a letter from Cruse. They are a charity that provides a counselling service for people who have been bereaved.
I've been seeing one of their counsellors for the past few weeks? months? and on my lats appointment, rather to my surprise, found myself saying that I felt somehow that this process was over.
Perhaps i was being premature: two days later i was back in hospital.
Who knows. Anyway, yesterday came a letter asking for a donation, which as proper, the usual feedback, and a request for personal experiences. Sometime, apparently, they can help with fundraising.
I must have some weird writer's instinct that I cannot resist; because before I knew it I was at my desk writing the account that follows. God knows if it will help them raise any money; or whether, in a deep sense, it should be published in any form.
But I also understand that I cannot resist.
So here it is:
It was towards the end of June 2004 that Susie had her first attack.
She said it was like some hideous gargoyle landed on her shoulder.
Something evil, with intent to attack her.
She thought she’d brushed it off, somehow, and that the wound was slight.
We all believed her, and believed the doctors when they said that it was only a minor stroke, that she would recover from it, and that there was no reason for us not to go on holiday later that July.
And so we went, and Susie bought herself a stick, of the kind that hikers use, and walked each day up and down the beachfront to recover her strength.
It was towards the end of the holiday that she seemed to be losing it again. Or at least she got dizzy again sometimes. And couldn’t always find her way from the hotel foyer to our room.
And in August, back in Edinburgh for the Festival, I remember trying to help her negotiate the crowds on the Royal Mile with the greatest difficulty. She had lost half her peripheral vision. It had suddenly gone.
And then the headaches began.
Hideous, agonising headaches, and constant phone calls to the doctor to get stronger and stronger painkillers. That never seemed strong enough.
Until in the early hours of the Wednesday she gave a cry and I found her unconscious. Strangely spread-eagled on the bed.
And that night, in the hospital, a grave-faced doctor told me they had noticed a shadow on her brain-scan. That they would transfer her to the Western where they’d be able to take a better look.
And a doctor there told me she would have to drill a hole into the back of her skull to take a sample of what looked very like a tumour. Just so they would know for sure.
The computers can tell us very precisely where it is, she explained, and they can guide us to the best possible route. But once I’m working inside the skull I’m working blind. It may happen I hit a blood vessel.
It all sounded incredibly crude. I couldn’t help but be reminded of trepanning, which they did in the Middle Ages: drilling a hole in the skull to let out the evil spirits.
By now it was Friday. Friday the 13th. They told me the operation had gone well, technically: they had located the tumour and obtained a good sample.
But the tumour they had found was of the most invasive and malignant kind. It was growing close to the brain stem, and there was no way of removing it. Most likely days, the doctor said. Possibly weeks. Gather the family.
I had to tell them. Tell Susie’s widowed mother, in her eighties, that her daughter was going to die. Tell my two daughters, 19 and 24 years old, that their mum was going to die. Tell myself that my life long lover and companion, who I had known for 33 years, was going to die.
Try to understand.
Although on reflection trying to understand was all a bit beside the point.
It was more a question of simply trying to cope. Cope with the endless crises that the tumour used to throw us into with what felt sometimes like deliberate malice.
The utterly unpredictable changes of awareness and personality and mood.
Keep organising the circle of astonishing kind friends who would undertake to be with her. Because she needed someone to be with her all the time.
To keep buying the groceries, cooking the meals, doing the washing. Trying to keep the house clean. Trying to keep life going in the midst of it all.
It wasn’t just a time of grief and torment: at the beginning, especially, every new day of life felt like a gift.
There were times of wild joy and deep happiness.
But it was as if the shadow they found that night in the hospital grew larger and deeper and blacker. As the effort to organise the daily trip to the hospital for radiotherapy seemed to become more and more intense. Radiotherapy whose effects no-one could predict, that seemed more and more like a gesture to ward off hopelessness.
As she suddenly one night entered status epilepticus – one fit succeeding the other without any understanding of why or how they could ever be stopped.
The tumour, I read somewhere, did not so much destroy the cells of the brain itself as the connections between its various centres: and more and more her mind seemed to be like a giant wheel spinning out of connection and control.
There were days and nights too when it seemed she would never stop talking.
Until one day, just before Christmas, she fell unconscious.
She was unconscious right through Christmas and into New Year. It seemed to everyone that this had to be the end.
It was a dreadful sad time, but it seemed right, somehow, that she should go in the house she loved among us whom she loved.
And then in early January she suddenly recovered consciousness again.
Only by now she had lost all strength in her legs and there was no way we could continue to nurse her.
She resisted going to the hospice with all her strength.
I fooled myself into thinking that they might help her there recover some of her strength so she could come home again. But she knew better; and I guess that was why she so fiercely fought going.
But in the end there was no choice. We were all beyond the limits of exhaustion.
The truly terrible thing about a brain tumour is that it turns the person you love into a total stranger.
It was a kindness for her, I suppose, in a cruel kind of way, because it shielded her, I think, from total awareness of what was happening to her.
But for us it was torment.
And those last 7 weeks in the hospice we were all torn between our desire not to lose her and our wish for the torment to end.
The nights were worse, because she was afraid and would never want me to leave her. It was like trying to settle a child who’s afraid of the dark and won’t settle: and you are tired, so very very tired, you just feel desperate for her to sleep do you can tiptoe quietly away.
And then one night she gave me a clumsy hug. I left her listening to a Burns song.
“Ane fond kiss, and then we sever...”
The next morning the hospice phoned to say she was unconscious.
For several nights and days we camped in the hospice, watching her in turns.
And then one afternoon, when I was in Marks and Spencer stocking up on grapes and sandwiches, sticky buns and bottles of wine – on the provisions to help us through the long night ahead – the hospice nurse phoned me, in tears, to say she had gone.
I don’t know how you ever recover from an experience like that. Or how, after being lucky enough to love someone for most of your life, you manage to create a new life after they’ve gone.
Perhaps it’s just not possible: I am still in the process of finding out.
But what I do now is that when she comes to me in dreams, as she still does, the dreams are different. In the beginning, they were a torment. It was unbearable to wake up after them and remember, again, that she was gone.
But now, when she comes, and she is always young and full of joy and life, it is a comfort, somehow. It is as if it’s a reminder that in some ways she will always be with me: that the love we have felt, the love we have truly and deeply loved, never completely leaves us. Is never completely lost and gone.
I don’t understand that, and I don’t understand the process that has made it come about.
But I do know that being able to talk about it all and cry over it all with someone who listens and is there for you without being embarrassed or heart-broken or ashamed all helps somehow.
And it is true, I think, what they say: that time can heal. And that life does, in spite of everything, still go on.
Jo Clifford. Edinburgh, Sunday, 26 August 2007.
Labels: a short account of Susie's death
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