Excerpt of It’s Not Yet Dark
You’re in a room in Dublin. A man walks in whom you’ve never met. He starts to talk to you. He asks you if you have any children. You say you do. He tells you not to go home tonight. That when you leave the building you must turn right instead of left, head north instead of south. That you must keep going in an unknown direction, knowing only that you will never see anyone from your life again.
The journey he is asking you to take is death.
I come from a different country from you. A different place. There are only a few of us there. My norm is very different from yours. You find it difficult to understand me. And, looking at me, you must think me quite strange. I have ALS.
I am in a bed in the Beacon Hospital. I went into respiratory failure, collapsed unconscious and was put on a ventilator.
I now have a tube up my nose and a tube down my throat. One for feeding, one for breathing. Both of which prevent me speaking. ALS prevents me moving my arms and legs. I communicate with my family through text messages on my phone.
A man has just walked in the door. I have never met him before and he starts to speak to me. He says his name is John Magner, consultant anaesthetist for the ICU. He tells me he has just got oﬀ the phone from Professor Orla Hardiman in Beaumont Hospital, after I requested that he ring them to ensure that I was getting the best care for ALS at the Beacon. He tells me that Professor Hardiman has said that they do not advocate ventilation in this country for ALS patients. That it is time for me to make the hard choice. He tells me that there have been only two cases of home ventilation but in both cases the people were extremely wealthy. Ruth and my mother start crying in the corner of the room. I look at him but I cannot reply. He looks at me.
Ruth and Mum 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. We find out two days later that the home ventilator is covered by the medical card.
A day later, my father and I are watching a movie on my laptop. Every movie watched after talking to that man feels like a vindication to me. Every moment lived is a moment lived. We are watching the movie and another man walks in the door whom I have never met. He introduces himself as Ronan Walsh, neurologist. He begins to ask me about the history of my ALS, despite my inability to speak due to the tubes. My father attempts to fill him in (medical details would not be his strong point). The man quickly gets down to the point. Why would you want to ventilate? he says. You have ALS and you are only going to get worse. At the moment you have use of your hands but the paralysis will grow, will get worse. Why would you want to ventilate?
For these people the questions Why would you want to ventilate? Why would you want to live, having ALS, not being able to move your arms and your legs? are rhetorical. But the irony is that they are asking the right questions.
Why would you want to ventilate? Why would you want to live? I have many reasons, if they are prepared to listen. But that is not why they are there. They are there because they have made a decision about my standard of living. To them it is inconceivable that I would want to live. But not for me. For me, it’s not about how long you live but about how you live.
They ask me why I want to live and the answer is the same as that given by ‘mostly dead’ Westley in The Princess Bride, when replying to the question posed by Miracle Max: ‘What’s so important? What you got here that’s worth living for?’
‘Truue loove’ is his response. That’s how I feel. 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? What gives a life meaning? What constitutes a meaningful life? What gives one life more value than another? Surely only the individual can hope to grasp the meaning of his or her life. If not asked if they want the choice to live, it negates that meaning.
You have ALS: why would you want to live? ALS is a killer. But so is life. Everybody dies. But 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 commit suicide. Or to endorse euthanasia. I refused. For days they stood around, scratching their heads and wondering what to do with me. In Ireland ALS patients are not routinely ventilated. They are sedated, counselled, eased into death. They are not given a choice. Not like in other countries, including the US. Not here. I was put on a ventilator in an emergency situation because the Beacon simply responded to my respiratory failure and saved my life. If I had been somewhere else, I might have been allowed to die. Imagine it. Something is deeply wrong here. I’m alive by mistake. They gave me my life and I wouldn’t give it up. I believe everyone should be given that choice.