The SA Law Commission has recommended the legalisation of euthanasia in South Africa, a move that could end the suffering of terminal or chronically ill patients
Euthanasia could have saved her mother from terrible suffering, writes Ellen Bartlett
TEN years ago, on April 10 my mother killed herself. On a sunny morning early in the northern spring, she swallowed 47 fiornal, an aspirin-based prescription painkiller. The autopsy found the direct cause of death was not an overdose of fiornal, as we had assumed, but of amitriptyline, an anti- depressant she had been taking. Combined with fiornal, and all the pain-dulling drugs she took as part of her daily routine, it caused respiratory failure.
But there would be no point in telling the story of her suicide in 1987 without addressing her first death, three years before. In January and February, 1984, she had two massive cerebral haemorrhages. Neurosurgeons operated, tied off an aneurysm on her middle cerebral artery, and removed a blood clot they described as the size of an orange.
She emerged from surgery swollen and angry, her head swathed in a white bandage like a turban, eyes open and glaring. And immediately retreated into a semi-coma, where she remained for many weeks.
Later she said she clung to her sleeping- waking state waiting to die, and it was only when she realised that she was not going to die that she roused herself. She recalled those weeks of semi-consciousness as pleasant and dreamy. She had not wanted to come back.
But one evening late as I snuggled against her in her hospital bed, I felt her left arm squeeze me. I looked up at her, and she was looking at me.
She graduated from the neurosurgical ward to “rehab,” where the disabled try to become able again, to learn to live with their loss. In the beginning, my mother seemed a straightforward stroke case, with global aphasia and right side hemiplegia. Her right limbs were dead weights; as she moved, they swung at her side with a slap, keeping her in a continual state of unbalance.
We would spend hours speculating on what aphasia was like: It’s like being buried up to your neck in a hole in China and surrounded by people trying to talk to you, and not understanding them or being able to make yourself understood, and having no other means to communicate, no gestures, no body language, no signs.
Or, she’s in a nightmare in which she can only speak Welsh, but she does not speak Welsh.
Much later, she would try to describe what it was like, being trapped in a world in which there was no language, no dialogue, no words. It came out in a kind of screwy understatement. “I can’t spell,” she said.
In time, she came home from hospital. She learned to walk with a half-walker and a leg brace, her dead arm dangling in a sling. She would do laps around the house: for hours, we could hear the shuffle-stop of her feet, the clack-clack of the walker. My brother would roll up her sleeve so that she could do the dishes one-handed. “It’s all I can do,” she said.
Able to read only for utility, no more for pleasure, she watched television, though she grew to hate it, would imitate it, stick her tongue out at it, roll her eyes. She was really only happy listening to music, Mozart’s Sinfonia Concertanta, Wagner’s Ring, and sleeping.
And that, as my father used to say, was the good news. Her neurosurgeon diagnosed the source of her pain. “Thalamic pain syndrome.”
A neurologist friend said, “Let us hope it is not.”
The syndrome is rare in stroke survivors, because it results from the kind of deep brain injury that few survive. Physicians know little about it. It is unpredictable, they said, indescribable, incurable, and likely to worsen over time. An array of pain killers and anti-depressants taken in ever-increasing doses could take the pain to a more indistinct level, but never took it away.
It was like a spell. “It’s coming,” she would say. “It’s coming.” And would cup her hand over her mouth, her eyes closed tight, tears squeezing out. She would cry four and five hours at a time, in starts and stops.
As soon as she could put words into semblances of sentences again, she said: “I want to die.”
“I want to go,” she would say. She would hold one hand up in prayer, close her eyes. She would talk about death with a casualness that numbed me.
“Maybe it’s better there,” she would say. “Who knows?”
“You want to die, don’t you?” my brother asked her one day.
“Yes,” she said.
“I think you’d regret it,” he said.
“So what?”
Sometimes she would lay herself down. “I’m coming,” she would say. “I’m ready.”
When she realised that she was not going to die by mind alone, she started to try other means. No doubt some of the attempts were cries for help, an expression of despair and anger at the awful state she found herself in. She launched herself down the basement steps from her wheelchair once, and my father, who was coming up the steps to stop her, caught her in mid-fall. She put a plastic bag from the dry cleaners over her head and held it there, refusing to let anyone remove it.
She would ask the doctors, “When? When am I going to get better. One year? Two years? Three years?”
It was a doctor who set the date for her. No doubt it was unintentional, an impatient response to her insistent questioning, to being pinned down, pressed. He said she would do all of the improving she would do in three years. “Okay!” she said, “Three years.” The deadline was set. She would be better in three years, or die.
On January 5, 1987, the day before the third anniversary of her first haemorrhage, she took 19 fiornal tablets and collapsed on to the kitchen floor, bruising herself. The next day, she took 32 and passed out on her bed. But she woke up.
“Why doesn’t this work?” she asked my father. “What do I have to do? How many?”
The next day I went home, straight to my mother’s room. She was lying on the bed. I lay down beside her, put my arms around her. She started to cry. “God tells me,” she said, pointing to heaven, to the stars, to God. “God tells me, I can die.”
“Please,” she said, turning and looking at me with her hazel eyes, red-rimmed and sad. “I want to die.”
That night, we met in the kitchen, my brother, my father and I, as my mother slept, or did not sleep.
“I’m thinking about cyanide,” my father said, looking at the floor.
I remember my brother, also looking at the floor, blinking, looking at me. “No,” he said.
We ruled it out. Cyanide was murder. In another place, at another time, she would be a candidate for euthanasia, but not here and not now. “We’re afraid to help her,” I said.
“It’s illegal to help her,” my brother said. “Though it’s the moral thing to do.”
The house was dark. It was unhappy and cold and sad, down to its timbers and slate. If she wanted to go, it was her right. We agreed that she should be told what to do, and be given the means to do it. It was easy to organise; she had the drugs at her disposal.
From that point, it should have been obvious to all of us that she would kill herself. But none of us believed it. The day came that she took 44 pills, rolled to the top of the basement steps in her wheelchair and called down to my father, who was working in his lab, “Bye bye.”
“Are you sure you want to do this?” he asked her. She seemed confused. “I don’t know,” she said.
“I’m going to stop you, then,” he said.
He gave her mustard water and stuck his finger down her throat. She vomited, and then slept.
The next day she was angry. She made him promise that if she did it again, he would not stop her.
Two days later, she rolled to the top of the basement steps again. “Bye bye,” she said.
He sat with her then; they talked, and prayed. He bathed her, and changed her pyjamas into the soft blue-plaid flannel ones that she liked. She named the people she loved. And then lay down on the bed, and curled up on her right side.
“Ellen,” he said when he phoned. “Your momma’s gone.”
I arrived home at dusk, and found the police. They crowded the house, their voices loud and intrusive. They had taken the medicines from the top of her dresser, poured the pills into plastic baggies, labeled them. They had questioned my father and brother separately.
My mother lay on her bed, still curled on her side, her hair over her face. Her body had stiffened. I stroked her cheek. It was cold, but soft, where it had been warm and soft. I sat on the bed, felt her fingers, patted her arm, smoothed her hair. My brother sat next to me. We stayed there a long time, but they were waiting, and we had to let them take her.
I do not regret her death. My regret is that I was not there for it, to tell her I loved her, to kiss her goodbye, to be with her as she died. Had there been less stigma attached to the “unnatural” means of dying, perhaps she would have invited us to be with her. But she chose to go alone, in her time, when she was ready. She had lost so much of herself in the last three years that only by doing what she had done, she had got some of herself back. By ending her life, she had taken control of it, had made herself whole again.
Months later, my brother had a dream. My mother was near him, she was in a car, enveloped in a kind of distant interior fog. He could not quite see her, or hear her. But they had a conversation.
She told him that she was fine, where she was.
“But Mom,” he said. “Mom, do you have any pain?”
“No,” she said, and she smiled. “No pain.”