An Irish man with motor neuron disease (MND) has revealed to the Irish Times how health professionals pressured him to refuse the ventilator that is keeping him alive.

Simon Fitzmaurice, a father of three was admitted to intensive care after contracting pneumonia. As a result he started receiving assisted breathing and a feeding tube.

Shortly after being admitted, a doctor informed him it was rare and expensive for patients with his condition to have a ventilator at home.

Fitzmaurice said the doctor told him, his wife, and his mother: “That it is time for me to make the hard choice. He tells me that there have only been two cases of invasive home ventilation, but in both cases the people were extremely wealthy.”

“He looks at me. ‘This is it now for you. It is time for you to make the hard choice, Simon.’ My mother and my wife are now holding each other, sobbing.”

“While he is looking at me, my life force, my soul, the part of me that feels like every part, is unequivocal. I want to live. It infuses my whole body to such an extent that I feel no fear in the face of this man.”

A mere two days later he and his family were notified that the ventilator he required was covered by the Ireland’s National Health Service, the Health Services Executive (HSE).

When asked by a neurologist why he wanted to live even though he had a degenerative disease, his answered: “Love for my wife. Love for my children. My friends, my family. Love for life in general. My love is undimmed, unbowed, unbroken. I want to live. Is that wrong?”

“Motor neurone disease is a killer. But so is life,” continued Fitzmaurice.

“Everybody dies. But just because you die, just because you will die at some point in the future, does that mean you should kill yourself now? For me, they were asking me to take my own life. Or to endorse euthanasia. I refused.”

Fitzmaurice writes: “I do not speak for all people with motor neurone disease. I only speak for myself. Perhaps others would question whether or not to ventilate. But I believe in being given the choice, not encouraged to follow the status quo.”

“I am not a tragedy,” he said. “I neither want nor need pity. I am full of hope. The word hope and MND do not go together in this country. Hope is not about looking for a cure to a disease. Hope is a way of living. We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That’s hope.”

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