It's Not Yet Dark Page 3

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  We are orphans of the universe. Our species is defined by asking questions, out into the dark, without anyone to guide us except each other.

  Time is a trick. From an outside vantage point we live a certain length of time, one that we measure in minutes, hours and seconds, birthdays and anniversaries. But we don’t live at a vantage point to ourselves: we are immersed. We live in fits and starts and jumps, like dreams. And the lives we inhabit are measured in moments, irrespective of time. How we live is strange and uncertain and not written on any map.

  In a movie, when a doctor tells a patient they have a certain time left to live, it sparks a voyage of discovery, a quest for authenticity and redemption. In Joe Versus the Volcano, one of my favourites, Joe Banks, when told he has a ‘brain cloud’, goes outside and hugs a large dog, then goes on to do what he’s wanted to be doing for years: he lives his life.

  I think of him often in those first days after. How that moment I had always laughed at had become my life. What now? What do I do? And it comes to me very quickly. I suddenly know what is different between me and Joe Banks, between all the stories and my life. I am happy. I am exactly where I want to be, doing exactly what I want to be doing, with exactly who I want to be with. It’s quite a realisation to discover beyond doubt that you’re happy. And death had brought me there.

  Death. On my shoulder. In my head. In the garden. At the door of my office. In every glance with my wife. My new companion: the end of my life.

  We are living in North Cottage, with our two little boys, Jack and Raife. We moved here so we could afford to live the life we wanted to live. I was working on my films, Ruth was writing her first novel and the boys had a garden ten times the size of the one at our previous house. We had a plan. And it was working. We were happy.

  But that was before. This is after. Never before had I felt that split, but now a fault line has opened between our past and present, and there is no going back. Death, which before had lived on some distant horizon, is now in our living room. We are lost, within the familiar surroundings of our lives. Ruth and I cry a lot, at night, in bed.

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  Human time is not measured by clocks and watches. Time slows down, time speeds up and the mystery of how we live is ever present, despite our will for it to be otherwise. Our lives are not the legacy we leave behind, or the value of the work that we do. Our lives happen in between the deeds and ideas that define us. Each of us feels it, the mystery, the strangeness of life on earth. Of life and death. We feel it when we travel, we feel it when we stay at home. We feel it when a loved one dies or when a loved one is born. I’m sure we all crave more certainty than we have but that is not human life. That is the ticking of a clock.

  When you are told you will die within a certain period, time slows down. Life becomes dominated by the last time. Is this the last time I will read a book to one of my boys? If not the last, how many more? How many? Everything is heightened. I stand outside in the darkness and watch my son playing in the window of the cottage. I stand until the cold is in my bones and wonder, Is this the last time that I’ll stand? I’m in my life and outside it, in the moment and conscious of the significance of every moment.

  It’s lucky. In this heightened state, experience is burned into my memory. I’m running after Raife and I’m thinking, Is this the last time I’ll be running? So I speed up. I’m running with a limp, and so running full tilt becomes a series of long hops and strides. But I’m running, across the grass, after my son, who is laughing uncontrollably, in the half-fright ecstasy of pursuit. And I’m remembering it. Fear of the last time is recording every second. Which is lucky, because it is the last time. And when you lose something central in your life it’s important to have a memory of it, so you don’t feel insane, so the pain you feel has a corresponding shape, something that says definitively, ‘That was real.’ Then, happy or sad about it, I have that for ever.

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  The hopeful and the desperate

  I and my family are determined to prove the diagnosis wrong or find a treatment. So we pursue every thread. Every possible mimicking illness, every alternative blood test, every experimental trial. It is a long road, but it gives us hope, a focal point to lift our eyes from the life that lies in tatters all around us. Because that’s the thing about your death, and the threat of your death: it’s not just about you, it pulls in all your loved ones. Everybody’s life has stopped.

  I pursue treatment with everything I have. I’m not going to die like this. This isn’t my life. I visit healers up and down the country, down bumpy side roads to mobile homes on breeze blocks, where the hopeful and the desperate sit outside in their cars looking self-consciously into the drizzle, waiting for their turn to step into the musty blend of Catholicism and mysticism, and the exchange of cash for hands that heal and a strange typed bit of paper with further instructions involving home remedies and prayer.

  Ruth and I drive up to Letterkenny to see a healer my mother has found. We see him in a hotel. Queue up with others in the hall. A mother with a young son. A man. Inside the room the healer has stuck up yellowing news clippings all over the wall and the TV plays a scratchy documentary from an old VHS. All attest to the healing powers of this man. All show a much younger man.

  A nice old gent, he performs his jiggery-pokery, touching my head with holy water, and we leave, no worse off, and have lunch in a little vegetarian café on the hill.

  Ruth and I love weirdness: it’s a part of who we are, the sense of humour we share. We seek it out, in life, in movies and books, that unique tilt on things that just tickles us. And this is grade-A weirdness. But we don’t laugh. We don’t talk about the truth of it. We’re searching for hope and we’re desperate.

  The healer says it’s better if I see him again (scam), and Ruth and I are more than happy to drive on to Galway for the next appointment in a day’s time. We book into the hotel where he will be and go out for dinner with my sister and her husband, Kate and Pierre-Yves, who live there. It’s a holiday.

  In the morning I get the lift upstairs and find the room where the healer is staying. He does his routine and I give him money, thank him and leave. He brings a mustiness to the room and a loneliness. Travelling around like a broken bit of Ireland, a suitcase full of dogma, as desperate for belief as the people who come to see him.

  I do reiki three times a week with an accountant outside Drogheda. She does parttime sessions out of her home. I have a secondhand convertible Golf and I drive with the top down through the long roads of trees by the water three times a week. It is amazing. It is so good, in fact, that I find myself thinking that I would not be without these experiences, that I would not choose otherwise. I come out after a session and the world is alive and green and full of hope. It is a start.

  I read books about people who had cured themselves of cancers the size of basketballs, of how sickness is repressed emotion expressing itself on a cellular level. And in all the books the same refrain: you are the cause, you are the cure. I determine immediately that if I am in any way causing this I must take it on. I start seeing a psychiatrist.

  Old-school Freudian, lying on my back, the psychiatrist sitting behind me in the half-darkness with a notepad and pen. I go for it, give it everything I have, determined to uncover any emotionally damaging activity. I mortify myself. Probe every private and emotionally embarrassing corner of my mind and speak it aloud in the hope that it will do some good. Fear of death leaves me fearless of anything else. I raise the roof.

  I go once a week but the going is slow. Too slow. I push myself to talk, to let it all out in the hope of a Good Will Hunting breakthrough. But it doesn’t work. It is good but I can’t escape my voice. So I quit. My psychiatrist doesn’t take it very well. Apparently I am the first person ever to leave and she isn’t very happy. I told her that I felt it was moving too slowly, that I needed something that would work a bit quicker. I told her it wasn’t her it was me. What I really wanted to say was that if I had
ten years I’m sure it would work fine but I didn’t.

  I go to the house of a woman who does a course based on one of the books I’d read. It’s called The Journey. The author claims to have healed herself of a tumour the size of a basketball. I felt embarrassed in the bookshop buying it, maybe because I doubt a lot of these books, but out of all the books it spoke to me.

  The house is a bungalow in the forest. I sit in her living room and she puts a blanket over my lap. I close my eyes, listening to the sound of her voice. Within a few minutes I am crying, then sobbing. Moments from my past crystallise before me, moments of hurt, of humiliation, of despair, and all the time her voice, pushing me to go on, go deeper. When I was a child I made myself walk into a pitch-black field because I was so afraid. I went into the darkness and found a field full of stars. And so I sit in this woman’s armchair and cry like a child and afterwards she gives me soup.

  In the driveway as I get into my car, she stands in the doorway and says, You watch those doctors’ faces now, when they do their tests and see.

  I had done it. I had freed myself of any damaging emotion.

  At reiki the following day my lady puts her hands on me and says, What did you do?

  I am on fire.

  The result of all this is that, emotionally and spiritually, I am about the healthiest person with ALS you are ever likely to meet. But to the progression of the disease it does nothing. It progresses, does its own thing, works on its own timeline.

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  Arden

  I have a bad limp now. Everything is in the shadow of my health. And yet we live. It is a shadow, a foreboding. Physically nothing really has changed except I have a limp. And everything has changed.

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  I work on the studio. I have men in to brick up the garage door, to plaster, to put the bathroom in. I’m buying the cinema gear from Richer Sounds in Belfast, the nicest guys you’re ever likely to deal with. I’m in among the builders’ cables and machinery measuring for speakers. Mathematics has never been my thing, but I’m in the studio at night, on my hands and knees, drawing chalk lines on the floor, working out the exact triangulation between the sitting position and the screen. The reason children sit so close to the TV is so the screen fills their peripheral vision and is totally immersive. Same principle. It is a labour of love.

  I’m stepping among the coils of wires and men with my measuring tape when the voice of the contractor sounds beside me: That’s an awful limp you have there.

  I’m embarrassed. In the heat of the moment I’d forgotten I’m limping like Quasimodo. I hurt my back, I mumble.

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  I get the call. I drive beyond all reason through the city. It’s the middle of the night. I find a space in the car park of the Coombe Hospital. I brace myself and get out of the car. The distance across the car park is longer than I’d thought. I look at the building ahead, at the metal railing of the walkway. I can make it. I have to make it. I cannot fall. If I fall I may not be able to get back up. Ruth is up there.

  I make it. I’m sweating. People are looking at me, the smokers outside, as I cling to the rail, moving up the ramp to the double doors of the entrance. I have to let go. Another distance from the door to the elevator. Jesus. I move. My leg feels weak beneath me. I’m sweating heavily now. I see the guard behind the desk in front of me. I know if he stops me I won’t make it. He’s looking at me. I walk past him, dragging my foot into steps, my eyes locked on the lift door.

  I make it. I make it down the corridor to Ruth’s room. I brace myself, try to wipe the sweat and the crazed look from my face. I go in. Ruth smiles in the breathlessness of a contraction. I sit in a chair beside the bed, take her hand, smile. I feel like I’ve climbed a mountain.

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  Arden is born. A perfect, beautiful little boy. A war baby, Ruth and I call him.

  I hold him on the couch and give him his bottle.

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  My brother-in-law’s father, Claude, is a master craftsman. His work is in the Louvre. I admired a bookcase he had done for my sister’s home in Galway, and he offered to do the same for us in North Cottage. Our books were sitting in boxes and there was a perfect wall in the living room. He arrives in a truck from Brittany.

  Claude and his wife Véronique know of my diagnosis, and their response is in their eyes, heartache, love, despair. I love these people. Claude is a magical creature. His eyes are dark caves of light. Difficult to look into. Easy to get lost. He is here to work. I had expected shelves of some sort. What came out of his truck was eighteenth-century wood from the library of a château in Brittany.

  For four days I watch them work. Father and son, Claude and Pierre-Yves. Now I knew why Pierre-Yves had been calling down for months, taking detailed dimensions and complaining about the complexity of the mathematical equations his father required. Claude had been preparing the wood for weeks in his workshop in France. Now I watch as they fit it to the space, creating something organic with this wood from far away that has always been there. This is wood as architecture, a structure of the simplest beauty. An art.

  Claude will not accept money. So I give him a case of Guinness and Ruth gives Véronique Irish pottery we like. We are standing in our kitchen, all sharing a bottle of wine to celebrate the completion of the bookcase, when my legs give way. I collapse onto the tile floor. Everyone jumps, reaches out. I quickly haul myself up on the counter. It brings up the unspoken in everyone’s eyes. But it remains there, unsaid, and we struggle back into trying to enjoy the moment.

  Long after they’re gone, I sit at night with the bookcase. Aged wood filled with all the books Ruth and I have collected over our lives. It makes me feel calm.

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  Ruth and I grow more haunted by the day.

  I fall. I have been making myself walk up and down the hall with a walker twice a day. Fighting to stay on my feet. And one day I fall, badly. My body folds beneath me, my back bending to meet my legs. Our hall is tiled and I must have made quite a noise because Ruth comes running. When I see her face I know it is bad. I never walk after that.

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  I finish the studio. Put a wall of bookshelves and a desk under the window looking out to the garden. It’s perfect. I have a red carpet put in and a local company builds a nine-foot couch. When it comes in the door it just keeps coming and coming. I import the screen from Japan. It’s a third of the price of a flat-screen TV. It arrives in a box and my brother-in-law and I put it up. It’s nine feet long and six feet high. The studio is finished.

  It becomes a place for Ruth and me. When the children are asleep, we come out from the cottage to this adult space. I’m in a wheelchair we bought from Argos and we have ramps around the cottage leading down to the studio. In the dark, in the evening, we come outside, Ruth helps me out of the chair and we sit on the ridiculously long couch and watch a film in our private cinema. We invite friends and family and have Indian food and music before a movie. It is a happy place for us.

  I wheel into this space I have created, slide across into my office chair and sit at the desk under the window. The smell of this room. The boys are playing in the garden. I start writing my new film.

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  But ALS does not let you rest. It does not let you adapt. It does not give you space. ALS takes and keeps taking. Or, rather, I keep losing more and more of my life. Every time Ruth and I take a moment to breathe, we are knocked back by this relentless ebbing death. And doom. The sense that all our dreams have already died.

  This is what living with ALS is like. The battle between life and death. While I attempt to have a life, to build a life, it takes parts of me away. Death is a part of life and with ALS I am in a state of mourning. I mourn the loss of my legs and all that takes from my life. And my family mourns. But there is no resting. Never any resting.

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  My family is a force, a power of people. They rally. They find a clinic in England that is offering experimental treatment for ALS. I go over with my mum and sister Kate, who le
aves her new husband alone to dedicate her time to me. We rent a little house by a forest in the snow. Dad is working in Ukraine. He flies here instead of home. I miss my wife, my children. After a month they come to join us in this quaint little house in the woods. A house called hope.

  It’s weird all living together. But it is my mum’s chance to mother me in the face of this catastrophe. To feed me. To be a mother to her sick son.

  Dad comes and we all eat dinner together. We watch game shows in the evening and play cards. We are a family.

  The clinic is a strange place, run like a hospital but completely unapproved by conventional medicine. It is, again, populated by the desperate and the hopeful, I among them. Heavy use of intravenous antibiotics is the treatment of preference. It is a clinic born of market demand. Every conceivable alternative treatment is available. At a price.

  We are all trying to believe it’s not another scam. The most elaborate of them. It is my family’s biggest effort. This has to work.

  It doesn’t.

  I am getting worse and, after a while, we pack up and go home.

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  I hit rock bottom. We are trapped in North Cottage, our little house in the middle of nowhere, and every day it seems to grow smaller as our despair grows larger. Ruth, the boys and I are trapped in this fog that seems to permeate everything, to confound every effort. In the end, it is Ruth who saves us. Despite my fears and those of my family, Ruth takes us off to Australia. My family and I are locked in the fear of change. Ruth is not. She tells me we are going or we will go mad in this house. I believe her. I trust her. We go. Ruth, the two boys, our baby and me in the wheelchair.

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  Sunshine in our lives

  They bring me onto the flight first. The plane is empty. They put me in this freaky contraption that strains the definition of chair, though it’s called an aisle seat. It’s a wheelchair the exact width of the aisle, which is bloody small. Two men lift me into it and wheel me down the aisle. They lift me into my seat and take the contraption away. I’m quite comfortable.