The story of Marie Fleming became a national and global concern in 2013 when she took a case against the Irish State to lift the ban on assisted suicide.
It also became of great interest personally because, like me, Marie had Multiple Sclerosis (MS).
I watched as she took her case for the ‘right to die’ to the Supreme Court, all the while praising her courage.
And I cried silently when ultimately, she lost her case.
Yet, I really didn’t know much about the woman behind the headlines.
An Act of Love rectifies this, as Marie tells the story of her life, and the long hard battle she fought against MS.
Starting with a harrowing account of her daily life, Marie gets across in the pages how tough her life had become; endless tablets, carers looking after her most intimate needs and how her ‘dignity has definitely suffered’.
Yet it’s her early days that take me by surprise. In those chapters Marie tells of how her mother abandoned the family when she was just 14, leaving her to bring up her siblings and look after the house. The days were long and the task thankless as she washed clothes, prepared meals with little money and desperately wished for someone to help out.
She found some respite when she met a local boy, Jumbo, and the two enjoyed a courtship. However, a fumble with her first boyfriend resulted in a pregnancy outside of wedlock when Marie was 16.
Given that this was 1970, it’s no surprise to hear she had a fight on her hands in order to keep her precious baby, both against the authorities and the church.
In fact, she was sent to a mother and baby home in Belfast, but Jumbo pledged to marry her and with her beloved daddy’s permission, she didn’t stay long.
She surmises: ‘It seems extraordinary that we weren’t aware of the Magdelene laundry. It turned out to be one of the other buildings in the complex.’
Jumbo did marry Marie but the relationship did not last.
However, her strong and unwavering relationship with her daughter Corrinna is evident throughout.
They are close in the early days and Corrinna supported her mother without a second thought throughout the court case.
Marie was never alone long either, and her second marriage to Alan resulted in a move to Derry.
It is here that she began to thrive, getting a job at the University of Ulster at Magee and forging ahead with her education.
Her tenacity is unbelievable and when she had her second child Simon, she took just three weeks off to have him.
Working full-time, with two young children and undertaking a BA in Business life was hectic and it was around this time that Marie began to feel unwell.
She talks of heavy limbs, extreme tiredness, numbness and dizziness. Putting them down to a ‘hectic lifestyle’ she battles on, and the family eventually move to Wales.
It’s there that the final diagnosis of MS comes, with her doctor explicitly telling her ‘Get on with your life. Don’t put your life on hold.’
Marie says, ‘It was a terrible diagnosis but I tried hard to stop it from spoiling my life. Some would say I was in denial in those early days.’
After telling her daughter Corrinna, who she swore to secrecy, Marie went on to make a new life for her family near Swansea.
They had a happy few years here, and Marie went on to secure a prominent post at the University of Wales. But she concedes, ‘It became harder to hide the illness and carry on with my job regardless. Even between attacks I would get desperately fatigued.’
The next blow came in 1992 when her second husband Alan left the family home. The breakdown of her marriage came as a shock and soon a severe MS attack took hold, and she could barely move. ‘Whether it was the situation with Alan that triggered it, or just coincidence, I don’t know, but my body decided to let me down.’
She continues, ‘My marriage breakdown made me review and rethink the effect that the MS was having on me’ and despite her colleagues now knowing, and being incredibly suppportive, Marie decides to move back to Ireland in 1994.
It’s a move which she relishes, but it’s not long before she gives up her full-time post at University College Dublin. But her role in some smaller projects leads to a chance encounter with Tom Curran - the man everyone now knows to be the partner Marie wished to protect if he helped her carry out her ‘right to die’.
He features prominently throughout the rest of the book, as Marie recognises the support he gives her daily, and how he encourages her to take her case to the High Court.
The court case is recounted blow for blow and it’s hard to hear Marie so eloquently presenting her case, even more so when she declares, ‘My children have been grieving for me for over twenty years.’
The outcome is common knowledge but Marie’s words are hard reading. ‘I am left with the legal right to live but not to die. That makes me feel as if I have no rights at all. Now that I am in a stage of terminal illness I have no right to an easy death.....The court case was not easy to live through and the result was disappointing. I feel bad that the court didn’t listen but I don’t regret taking it.’
Yet she finishes the book with the following words, ‘All people see now is a woman in a wheelchair who can’t speak very well, who can’t move at all. But I lived. I loved. I am somebody.’
That she certainly is. Marie Fleming is an extraordinary woman and her story is one you won’t regret reading.
She passed away in December 2013.
An Act of Love is available now at all good bookshops priced £13.99.