Dignified and heroic to the last, that was the Marie I knew
I was privileged to have known Marie Fleming. Not very well, but enough for her to have left a huge impression.
The last time I met this brave and inspiring woman was in her home near Avoca, Co Wicklow, on October 16, a crisp, bright, autumn day. Marie was propped up in a wheelchair in her living room, facing out on to her beautiful garden. Before her devastating illness left her unable to move, she spent hours in that garden, tending to the plants, listening to the birds, and soaking up the stunning surrounds.
The day I visited, Marie had just recovered from another bad chest infection, but she was in good spirits and up for the chat. It was difficult to sit and see how multiple sclerosis had ravaged this intelligent, attractive, former university lecturer.
In the final stages of this cruel disease, she was in constant pain and lived a daily hell. She had no use of her arms or legs. She had no bladder control. She had serious difficulty swallowing, and choked constantly. Her voice was weak but firm. It was clear that she was not long for this world.
But there was nothing wrong with Marie Fleming's brain. It was still razor-sharp.
Through constant sips of water, which she took through a straw, Marie discussed the affairs of the world. There was not a trace of self-pity. She proudly told how she had just secured a deal for the publication next spring of a book on her life. Because she was physically unable to write, she dictated the book to a carer every day over the past several months, and she was looking forward to sharing her story with the world.
By Marie's side was a remarkable man, her loving and devoted partner Tom Curran. He was her protector, her spokesperson, her champion, her full-time carer -- a man who was prepared to do anything, even break the law, to release Marie from the nightmare she lived every minute of every hour of every day for the past few years.
In May, the Supreme Court rejected Marie's legal challenge to be allowed assistance in ending her life. She was too ill to attend court to hear seven senior judges rule that there are no grounds under Irish law to a right to die.
What Marie wanted was to be allowed to die peacefully at her home in the arms of Tom with her children, Corrinna and Simon, and Tom's son, David, close by -- at a time of her choosing, when the going became unbearable.
The legal action had been physically and emotionally draining. But Marie and Tom had accepted their fate and were continuing with their lives. Despite the disappointment there was no trace of bitterness. Tom was determined that despite the Supreme Court ruling he would do what he had to do, and face the consequences, if Marie came calling.
What Marie found impossible to accept was that a person with a disability in Ireland is deprived of something that is legally available to every able-bodied person: the ability to take their own life.
In her affidavit to the High Court, Marie said she did not wish to end her life immediately. But she wanted to have the choice if a time came when she could no longer go on.
"That time may, for example, be when I can no longer tolerate the pain in which I find myself; when I am wholly dependent on others for basic feeding or hydration so that someone has to put a sponge to my lips to give me water; when I have completely lost bowel or bladder control or both; when (as is possible with my condition) I lose my eyesight."
Tom and Marie's love for each other shone through. It was truly a powerful force. Tom's eyes were constantly focused on his partner. They laughed together and slagged each other. The afternoon I visited, he served tea and cake, and patiently fed Marie a few mouthfuls, which was all she could manage. She jokingly complained that he hadn't made the cake himself.
Despite Marie's illness, she liked to look well. She chided Tom for being no good at doing her hair. And as for putting on her lipstick? Forget it! She loved bright-coloured clothes, especially red. She was truly elegant.
Marie always maintained that taking the right-to-die case to the highest court in the land was not just about the act of dying. It was about giving her the peace of mind of a choice not to continue with suffering.
The 59-year-old fought her case with dignity, with her beloved Tom by her side all the way. They were both brave and articulate and a very unselfish couple. They felt strongly that the State neglects people in need of constant care by not providing better home care services. She said she would love to meet minister Joan Burton to tell her exactly what she thought!
Because home care is not available on weekends and bank holidays, there were times in recent years when Tom got little sleep and no break for periods of 72 hours at a time. He is on the board of the National Carers' Association. Every summer until this year (as she was too ill), Tom and Marie held a barbecue in their beautiful garden for the team of carers in Co Wicklow who made life a little more bearable.
In the end, thankfully, Marie did get her wish. She died peacefully at home yesterday with her loving Tom by her side. He texted at 6am with the very sad news that "Marie passed at 5.30 this morning".
She inspired everyone who came in contact with her -- from Supreme Court judges, to carers, to journalists, and friends and neighbours in Wicklow.
May she rest in peace.