Seven years after her death, Marie Fleming's partner Tom Curran is still reminded of her every day. A picture of the two of them sits in the bedroom they shared. Her spirit infuses his campaigning on end-of-life issues and cannabis legalisation.
e becomes emotional when he recalls the moments after her death, when he met her daughter Corrinna.
But there is some consolation in the abiding knowledge that it wasn't all in vain. Their quest transformed Irish attitudes to assisted suicide and brought us to the point, last week, where a new law on the issue seems likely.
And yet perhaps, even now, there is still a way to go.
The irony of the new Dying with Dignity Bill, which proceeded to the committee stage of the Dáil last week, is that Marie would not have fallen under it.
Her terrible plight transformed attitudes to assisted dying in this country, but the multiple sclerosis (MS), which destroyed her life, would not be considered a terminal illness under the proposed new law.
"It doesn't go far enough in my opinion," Tom says.
"I'm wary of saying that because people will think we want the law changed again if this passes. But black and white doesn't solve every problem."
When Tom began campaigning on this issue, nearly a decade ago, he received a lot of abuse.
"Nobody abused Marie, because she was a disabled person, but a lot of people felt I was fair game," he says.
In December 2012, Marie took a High Court case challenging the ban on assisted suicide. She had wanted Tom to be able to assist her death without fear of prosecution.
When the High Court ruled against her, she appealed the decision to the Supreme Court. It upheld the original ruling but a national conversation had been started and public opinion, previously deeply opposed to assisted dying, began to shift.
"Us coming out and starting to talk about it got people thinking," Tom says.
"This was about getting a human right. The judge in the High Court case said that she was one of the most impressive witnesses who ever came before him, a highly intelligent woman who had simply said 'I don't want a bad death'."
Tom had met Marie while she was lecturing in UCD and a friend asked him to repair her computer.
"We connected over our sense of humour. She was very fiery. She was a very strong woman. She'd been through a difficult life that I knew nothing about until later."
Fleming grew up in Donegal and had left school early to care for her siblings after her mother left the family home following an affair with a local politician. She became pregnant herself at 16 and was sent to a mother and baby home in Belfast.
Despite intense pressure she kept her daughter, Corrinna, and she married the girl's father. She later split from him and, following her divorce, married Alan Fleming, with whom she had a son, Simon.
She was diagnosed with MS in 1987 after reporting feeling dizzy while on holidays in Gran Canaria, but hid her diagnosis and continued to work while studying for an MBA.
Her marriage broke down and she moved to Wicklow, where she lived with her son.
She met Tom in 1995. Within a few weeks she had told him about the MS.
"We both realised that it had the potential to be a serious relationship. She told me it's not going to get better and it may get worse. She said, 'I'm giving you an opportunity to walk.' I was bowled over by her honesty.
"There was never any question of wanting to get away but it was something I had no experience of.
"There are lots of people with MS who lead very good lives, but she was unlucky."
They had about two good years, he says, before she moved from the relapsing and remitting pattern into a progressive condition.
"It was frightening, we had no idea where it would go, nor did the neurologists. The drugs weren't very helpful.
"Because it was gradual we just dealt with each bit as it came along. One difficulty between us was that I am a person who plans ahead, whereas Marie wanted to deny that certain things might ever happen. She resisted using a wheelchair for so long and we fell out over it."
Marie told him that she didn't want to have the cottage they lived in modified for wheelchair access.
"She said, 'I don't want to be around if it gets to that stage.' The conversation began back that far.
"I gave it credence because I knew it wasn't a throwaway remark. There was always pain, a dull ache, but one of the biggest problems was fatigue. It's not tiredness, it's very difficult to understand unless you've had it.
"She was depressed but she was also angry that this damn thing had taken over her life."
Tom eventually gave up his job to care for Marie.
"We continued the programme of going to the neurologist," he recalls.
"There was always a hope that a wonder drug was around the corner. In the meantime we discovered cannabis and that was by far the best medication. It was the best at alleviating the pain, it dealt with spasms better than any pharmaceutical medication, and her mood was far better."
Marie asked Tom to research how she could end her own life.
He discovered that the only legal option was to travel to the Dignitas clinic in Switzerland. They had an appointment, but the method used at the clinic required swallowing a drug and Marie's swallow mechanism was already quite weak.
Tom ordered medication from Mexico which they intended to use in her assisted dying - nothing available on prescription here will reliably end one's life, he explains.
"We had our own safeguards built in such as 'come back to me in the morning'. If it was just a flash I'd ignore it, but at the same time I knew when she was serious."
In August 2013 she attended her son's wedding.
"The biggest problem was the amount of attention she got from other people," Tom recalls.
"Her own family was disbelieving of how bad it had got - one of them accused me of drugging her, but her close family knew that was not the case.
"She was very glad she was there, but we left in the middle of the ceremony because it was just too much for her. It was a huge achievement to get her there."
By December of 2013 Marie's situation had become even worse and she decided it was time to follow through with their plan.
She died peacefully, Tom explains.
"It was so lonely to be alone in that moment. I had never experienced it before and never want to again.
"We knew what the procedure to follow was, letting the doctor know, but I was like a zombie.
"It happened at Christmas and New Year's when I came home on my own, that was very tough."
He was questioned at Wicklow garda station on one occasion before Marie's death, but says that there has been no suggestion of a prosecution against him.
In the years since her death he has continued to campaign on issues around assisted dying and has counselled many people who have ended or are intending to end their own lives.
"I get approached every day of the week. They aren't all legitimate cases. There are some that need help and I try to push them towards that."
Amazingly he retains a sense of humour around the whole thing.
As part of his work with Exit International - a group that provides information and guidance on end-of-life matters - he brought a show to the Edinburgh Festival, which dealt with issues in assisted dying. The council tried to stop it going ahead but this only increased the audience numbers, he adds.
He laughingly recalls another moment when he was out socially here in Ireland and he became aware a group of women were talking about him.
"That's the man who killed his wife," one said as the music in the venue suddenly died, causing all eyes to turn to them.
Tom calmly looked up and said, "Hello."
He's heartened that public awareness of issues around assisted dying "seem to have shifted 180 degrees".
"Us coming out and starting to talk about it got people thinking. A lot of people would never have even considered the issues that we were dealing with.
"Marie gave the issue a face - it wasn't an abstract concept any more.
"It's heartening to me that everything we went through wasn't for nothing, that things are changing."
He says the new bill does not go far enough, but how far should it go? Should things like depression be included under the new law?
"That's also lacking in the Bill," he replies.
"People are afraid that people with mental illnesses will be pushed into ending their own life.
"For me the test should be: are they able to think rationally? There are lots of mental illnesses that don't affect a person's ability to think rationally. They should be included. But this Bill is a good start."
