Ruth Fitzmaurice watched as the consultant, a man they had never met before, entered the hospital room and made his way towards her husband’s bed.
Simon, a talented filmmaker and the father of three small boys, lay there with a tube going down his throat, pushing air into his lungs, allowing him to breathe but preventing him from being able to talk.
They listened as the medic spelled out in no uncertain terms what he expected them to do.
'He basically announced that this was the end of the road,’ explains Ruth. ‘That was it, they had done all they could - that he had phoned Simon’s own consultant in Beaumont Hospital who agreed that ventilation for Motor Neurone Disease (MND) is not advocated in Ireland.’
The consultant continued, telling Simon that it was now time for him to make ‘the hard choice’ - to agree to come off the ventilator.But Simon was not going to give up that easily.
Despite the consultant’s stark and very clear recommendation, Simon refused to grant permission to take him off the machine that was keeping him alive.
‘Simon’s family very much think for themselves, and Simon in particular is a very strong character,’ smiles Ruth. ‘He wouldn’t be fazed by being told what to do by a doctor, he would question things and say: “Hang on a second.”
‘The consultant told us if he stayed on the ventilator that he wouldn’t get out of the hospital. With MND [a degenerative condition that destroys the cells that control voluntary muscles and can affect speaking, walking, breathing, swallowing and general movement] it’s like, “where do you think this is going? You’re only going to get worse. Why would you choose to ventilate?” So that’s when we decided to fight.’Not only did they decide not to take Simon off the ventilator they went a step further by deciding to have more children (they already had three when they received his diagnosis). They ended up having twins.
‘Everyone thought we were a bit mad,’ laughs Ruth. ‘But we felt in the face of death and with everything that had happened, well, kids are the ultimate opposite of all that, they’re life-affirming.’
But that's not all. Simon also went on to finish a script that he had been working on for a movie he will direct starting next year.
Rather than accepting a death sentence, Simon has chosen to go on living life to the fullest possible. It's a beautiful picture of what it truly means to choose life. Be sure to read his entire story.