It's Not Yet Dark Read online

  We take up the row, the two boys between Ruth and me, and Arden in a cot on the wall in front of Ruth. He is huge, he barely fits. Going to the loo on this long-haul flight involves peeing discreetly under a blanket into a bottle. No one notices. Luckily I don’t have to go to the bathroom as that would involve the dreaded aisle seat. Ruth has her hands full between minding Arden and ferrying the boys to and from the toilet. A woman across from me stares me out of it for just sitting there, the archetypal patriarch, while Ruth does all the running around. I sip my drink.

  When the flight lands they come and lift me out of the seat. The woman comes over and says, Sorry, I didn’t know. That’s ok, I tell her. You have beautiful children, she says, and nearly runs from the plane.

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  Sunshine in our lives. We go for six weeks and stay for six months. It is one of the best times of our lives and it changes everything. Two of our closest friends are there and they adapt their lives to make ours easier. We rent a house with a swimming-pool, and start writing full time again, me for the Irish Film Board, Ruth on her novel. We see a psychotherapist once a week, a lovely woman who talks with you face to face, and we go to the cinema and eat a lot of good food. We are happy.

  I realise that I have a simple choice: I can accept that I have ALS or I can give up. I realise that I have been carrying around the burden of responsibility for having ALS. That I was the cause but, through some failing of my own, I was not the cure. I had experienced first-hand the benefits of new-age therapy but, like so many systems of belief, genuine origins can often turn to dogmatic pronouncements of panacea. They can condescend to the sick, who are desperate to believe that the power to be better is within their grasp. But it is an unfair responsibility. People get sick. I wish that all things happened for a reason and that all things are in my power to change, but I don’t believe it. And it’s arrogance and a burden to tell someone who’s sick that it’s their fault if it’s not.

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  At the weekends we go to a café called Voyage, right down by the sea, with our friends Daragh and Cath and their son Theo. It does the nicest breakfast I’ve ever tasted, involving poached eggs, avocado and feta cheese. And good coffee.

  Lifting the coffee to my lips, I feel, with sickening familiarity, the seesaw balance of strength and weakness. The question mark of whether I can hold the cup or let it fall. My arms. I try to hide it. But Ruth sees and feels everything.

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  We haven’t outrun our problems but it feels like we’re keeping pace here. Life is just too good to be buried for long. We go on outings with the kids, to museums, railways. Even the pleasure of the simplest playground is amplified by the weather. Days in the pool. At night we go to a cinema in a small forest, the roof a sea of stars. My friends haven’t seen my latest short film, and I think, What if I could screen it here? So I send it into the cinema office and the next day get a call to say that they agree. It plays as part of an arts festival, and a journalist interviews me in front of the cinema crowd. It’s my first time speaking in public from a wheelchair. It goes fine and my film plays among the trees.

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  We bring the boys to the lovely library up the road. We go to the ballet. We get a sixteen-year-old babysitter we can trust and Ruth and I go out for regular meals and to the cinema alone. What can I say? Australia.

  ALS still lives in our lives. Every time Ruth helps me in the shower. Or we fight out of sadness and frustration. But the simple truth is that a better life helps all of us.

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  Pizza

  I am getting weaker.

  I’m sitting in the jeep in the darkness. The light from the pizza parlour is a white box with people inside. I see Ruth, her back against the window, sitting on a bench, reading a magazine. Jack and Raife dance around her seat, press their hands on the glass and stare into the fridge of chilled cans.

  I cannot leave the car. I cannot walk. And it’s too much hassle to use the sliding board to get into the chair just to pick up the pizza. So I sit in the darkness.

  There is a restaurant adjoining the pizza joint. A very beautiful restaurant, which is why we come here for the pizza. It is dark and wooded and full of little lights. Men in crisp shirts smile as they enter with ladies brown from all day at the beach. Two older men sit in the outside section, facing the sea, their glasses of wine bright and clear in the evening light. Girls in white shirts move among the tables.

  I watch the people as they enter. Their faces. Something on their faces. And then I realise. It’s on everyone’s face here. In the restaurant. In the pizza place.

  Ease. Simple human ease.

  It’s evening, and between the stresses and strains, loss and pains, these people have found momentary reprieve. I don’t know any of these people, but it’s written on their faces. Something I have lost.

  I have been told I am going to die. Very soon. And ease has left me.

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  Love. It’s all it’s ever been about. No one’s story is more important than anyone else’s. And only one thing scares me. Distance. From Ruth. From my children. Daily distance. And death. The real distance. I can imagine it easily. Life without me. Ruth’s loneliness. It’s not difficult. It’s easy. The stark strangeness of this life.

  How to reconcile myself with my death. With my children standing by my bedside, crying, attempting to say goodbye. I do not know when that day will come.

  I am not brave in the face of death. I am terrified.

  Ruth said that surviving itself is a bravery. I don’t know. I don’t think I’m brave at all. Or that I handle my suffering with dignity and selflessness, as the books say. I try, and sometimes I succeed and sometimes I fail. Sometimes ALS buries me until I cannot see. Or if I do, I look out of a turtle shell and see a gaunt reflection looking back.

  Other times, I touch what I once held. Arden asleep on my chest. Jack holding my hand in my wheelchair while we walk. Raife sitting on my lap. Ruth across a table from me in a restaurant.

  Or being alone. Having pushed myself out of the house, down to the sea. Sitting under dusty palms, the wind in my face.

  In Voyage, the awning flapping in the breeze. Sitting after breakfast over coffee and working on my film in my little notebook. Blissfully alone.

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  Time to leave

  We go back. At Dublin airport both our families are there. We go into the bar before heading our separate ways. Everyone is jubilant, happy that our trip was a success, happy to see us. Our parents’ faces are worn with worry. I lift my arm to shake hands with Ruth’s dad and everyone notices the strain, the weakness. Everyone notices but no one sees.

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  We have a blissful summer in North Cottage. I now have an electric wheelchair as I no longer have the strength to push the manual one. I race around the garden with the boys. Through the apple trees. Along the path behind the herb garden. The sun is beating down and we play games for hours. In the evening we watch films in the studio. I introduce my boys to my love of cinema, as my father passed his to me.

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  We have decided to move. As much as we love North Cottage, the more ALS progresses, the more living in isolation becomes difficult. This wasn’t part of our plan. A simple thing like driving down the road becomes a burden because I’m thrown around like a rag doll on the Irish country roads. Australia has shown us the benefits of living close to everything, to friends. Jack is about to start school. It’s time to choose. Time to leave.

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  Fear

  I get pneumonia in September. It’s the first sign that ALS is affecting my breathing. Most people with ALS die of respiratory failure. I spend a week in hospital.

  We’re living in my parents’ house while we look for a home in Greystones. There is a For Sale sign in front of North Cottage.

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  I take Jack or Raife out for spins in my power chair to Greystones town. It’s a sudden independence. One at a time I take them on my lap, and we leave my parents’ house, alone, just
the two of us. We call it going on an adventure. We go to the sea, the bookshop, the library, the supermarket but, above all, the video shop. It is our favourite place.

  We take the back road from the house, a road from my childhood. Quiet, bumpy, full of memory. It’s the quietness that matters, the solitude for me and my boy. The chance to be a father.

  The weight of him on my lap. The shared silence of experience. The road. The trees. The half-hidden house we talk about. Then other people. We navigate. I cross the road like someone who is above the law. Abusing people’s kindness, pity, fear. I don’t know what they’re thinking in their cars. I used to. I don’t now. I’m different. And death is my VIP card. People stay back so I might as well play it. So I cross the road and everyone stops. Listens. Sees. I feel the weight of thought all around me. Some people thinking about me, others doing everything they can not to think. A man in a wheelchair with his son. So we cross, me and my boy, visible, invisible.

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  This is life in Greystones, the freedom to do things alone. In the video shop I can’t reach up to the counter so Jack or Raife stands on my lap and pays the man. One movie for me and one for them.

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  We find a house in Greystones. It just feels right. We move a few doors, a wall. Home. We experiment with names but in the end stick with the number. It’s a quiet little estate filled with children and you can see the sea from the back garden. Jack starts in a local school that my sisters attended.

  North Cottage is sold. We have to say goodbye. To our library. To the studio. To the trees. It’s not easy. We have lived here. I have to include all the cinema equipment to close the deal. They want the cinema. That makes me happy. Before we leave, I watch Blade Runner in the studio with my friend Phil. We turn the volume up to nine. It is sublime.

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  My breathing is getting worse. My voice has fallen to a whisper. We go for a family portrait in Dalkey with my family, my parents and my sisters’ families. They lift me out of my power chair into a seat for the photograph. No one wants to see a wheelchair in the photo. Including me, I suppose. To everyone else it symbolises sickness. But when you are using a wheelchair, the negative symbolism is quickly replaced by the fact that this device is empowering you. My wheelchair is my friend. But this family portrait is about everyone else’s point of view. And I am not immune. No one wants to see sickness. This is a portrait of the other parts of us. So we use another human symbol to represent our values. We smile.

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  In the pub after the photograph is taken, no one can hear my voice above the crowd. They lean in close but cannot hear.

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  I get pneumonia again. A double pneumonia, they say. I go into the Beacon Hospital. Ruth sleeps on the couch in my room. I’m terrified. I can hardly breathe and don’t sleep for three days.

  It escalates. We call the nurse. I tell him I cannot breathe. He looks at a monitor. Your stats are fine, he says. I cannot breathe. He just looks at me. I have twelve other patients, he says, and makes to leave. My brother-in-law, Chris, who is in the room, says, If Simon says he can’t breathe, he can’t breathe. He is six foot three. The nurse looks up at him.

  I’m moved to Intensive Care. I can’t breathe. I feel sheer panic now. I can’t breathe, I tell the two nurses in the room.

  They don’t turn from the monitors high up on the wall at which they’re staring. Your stats are fine, one of them says.

  I’m drowning. I turn to Ruth, who is kneeling on the bed, one hand behind me, one in front, pumping my chest like an old squeezebox, helping me breathe. Don’t stop, I say, raw panic in my voice. She meets my eyes and we share a moment of perfect fear. Ruth, help me, I say, and see utter helplessness in her eyes. She pumps my chest. Help me, I say, and the world tilts.

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  My country

  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.

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  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.

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  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.

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  I am in the hospital over Christmas. During a snowstorm that stopped Ireland. I have got to know all the nurses. One girl, Bridget, from Cork, is pure heart. She walks across the road to the pub, buys a pint of Guinness and carries it back without spilling a drop. It’s New Year’s Eve, I think. I’m not sure. I’m on a lot of morphine. I manage a few sips of the Guinness. Another morning she comes into my room with a lunch box full of freshly fallen snow. Gently, she lifts my hand into the cool iciness.

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  I take it. I don’t need it. I want it.

  I take the morphine. I have no pain. I don’t take it for pain. I take it until Clint Eastwood’s Heartbreak Ridge becomes a love story. I take it because it feels good. I take it and I love everyone.

  The next day I cry for no reason. I take it again. I take it until a canny nurse cops on.

  I take it until the line is taken out.

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  We crave happiness. We are desperate for happiness. Advertising shows us epiphany after epiphany but we can’t live up to that. We want to. We want to feel that in our lives. No one is exempt.