All Marie has left is pain and the love of Tom and her children
The couple have been left devastated by the Supreme Court ruling on assisted suicide, writes Maeve Sheehan
AFTER last week's Supreme Court ruling upholding the ban on assisted suicide, Marie Fleming and her partner, Tom Curran, are reflecting this weekend on their limited options.
They will probably sit in the bank holiday sunshine in their 1.5-acre garden in Arklow, Co Wicklow, which they designed together, listening to birdsong, one of the few things that Marie still enjoys.
Their legal team must study the judgement before deciding if they can legally appeal to a European court. Or they can wait for death.
Not that Marie is suicidal. Nor does she have a "death wish", according to Tom. When Marie developed a chest infection around St Patrick's Day, he asked if she wanted to let the illness take its course. She said: "No". Right now, her goal is to be around for her son Simon's wedding in August.
"Marie wants to live. Unfortunately, living to Marie means constant pain, constant discomfort, constant indignity. But it's only her that can decide how much of that she is prepared to tolerate or not tolerate," he said.
In her witness statement to the High Court, Marie said the time may come when she can no longer tolerate the pain or when she becomes wholly dependent on others for basic feeding and hydration, so that someone has to put a sponge to her lips to give her water.
She has had MS since 1986 and her condition is now terminal. At the time she made the statement, she had maybe months or perhaps a year or two of life left.
She has lost the use of her hands, has no bladder control and often chokes when swallowing. Her speech is degenerating, she cannot wash, eat or dress alone. A shower takes two hours. Her only activities are listening to the radio, looking at her garden and short periods dictating her creative writing.
"I have lost what physical beauty I had. My body is like that of the walking dead," she said.
Marie has decided on the way in which she would like to die. Unable to swallow pills or oral medication, she could take the final step herself by moving her head to self-administer gas through a face mask or a lethal injection through a cannula.
She wants to die in her bed, in her house, in Tom's arms, with her children, Corrina and Simon and her grandchildren, and "without the fear that any person would be subjected to criminal prosecution".
Tom Curran is a private person, who by his own admission conceals his feelings behind a "front". The most overwhelming undercurrent during our hour-long conversation is the unshakable certainty of his love for Marie.
They met 18 years ago, when she was a lecturer in business studies at UCD and he worked in IT consultancy. Their relationship "got serious very quickly".
Just weeks into it, she told him she had MS. He didn't falter. "To me that was just part of life. If you want to be with someone, then you take the good and the bad."
When her condition became progressive 12 years ago, Tom gave up his job to become her carer. Three years ago, he agreed to go on radio to talk about assisted suicide. Neither of them were prepared for the response, which included complaints to gardai which came to nothing.
Both were shattered by last week's ruling. On The Late Late Show on Friday, Tom talked of his disappointment at the cold legalese of the Supreme Court ruling that seemed devoid of compassion for Marie's circumstances.
He broke down when he read a statement from Marie, which she had dictated to him. That night, he went back to his hotel room and cried.
The calm and unsentimental way in which he talks about their circumstances is a "front". "I developed what I call my wall to put blocks in front of anything that's coming at me. And that's a habit that I developed a long time ago. It works pretty well, but sometimes the wall falls down a bit, like last night," he said.
The crying is part of his "constant grieving" for Marie. "Unlike a lot of situations, we are constantly aware of Marie's death. There is a permanent grieving."
When he wakes during the night and first thing every morning, he checks that Marie is still breathing.
"I wake up in the middle of the night and listen. And if I can't hear anything, I will get up and come around to the side of the bed to make sure that Marie is still alive. It's every day, every night that this could happen."
They have discussed her death but he is careful in answering questions about it.
"The way I answer it in general is that we are intelligent people and any intelligent person would not talk about something like this without researching and planning," he said.
Marie's biggest fear is the concept of locked-in syndrome, that her voice will go and she will be unable to communicate. They have also discussed what will happen, in that eventuality.
For now, Tom wants to provide Marie with as "good a life as possible under the circumstances".
Nobody knows how much of life they have left. "What I hope to do is to make the best of what we have together."