It's Not Yet Dark Read online

  I am jealous. Of the movement of bodies like a drug. What is happiness anyway? I knew it once. The balance of elements tipped in one direction. I know it now in moments struggling to let myself be happy. It’s difficult, when the elements are tipped the other way. Happiness is a moment above water.

  Listen to me because I’m drowning.

  {

  I’m not a part of the world outside. The news doesn’t talk to me. The weather is different light in the corridor. I wake up exhausted from a dream. Of running, of fighting on a bridge. What to do? To force myself awake. To summon all the effort just to move.

  {

  I’ve lost one sense and another is going. Smell is gone. I’m breathing through my neck now, not my nose. Taste is next. I’ve been eating boiled eggs for breakfast but that is becoming harder and harder.

  I have a random urge for a Big Mac meal even though I’m vegetarian. It’s bizarre. I mention it to my friend Kevin. The next day he arrives with a Big Mac meal without the meat. He takes out two veggie burgers, wrapped in tin foil, which he cooked at home, and puts them in the burger. I take bites of my veggie Big Mac, with fries and a strawberry milkshake. Taste.

  My mum brings me in delicious home-cooked meals but a few choking episodes put an end to that. I no longer eat with my mouth, but by a small tube in my stomach, with nutritionally designed liquid foods.

  Two senses gone. Three remain. I feel the slightest touch anywhere on my body.

  Touch me. I see you. I hear you.

  {

  What have I become? To my children? I am still their father, always their father. But so different from everyone else. Everyone is different but some are more different than others. I feel for them, being in places where everybody’s body works. Rooms full of people whose bodies work.

  {

  My family visit every day. Either they are visiting or they are minding my children so Ruth can come in. Or both. I cry every time my boys come in.

  My sister Ruth dedicates all her time to getting me home. Kate knows every ALS website on the planet. My uncle Bobby arrives weekly with armfuls of films. My parents are exhausted.

  My friend Phil visits me almost every day. He is a bedrock to me in this white world.

  {

  I don’t know. I feel different today. Happy. It is a different feeling from anything else. Last night I dreamed I turned into the wind and flew. Round and round in cirrus spirals. So high it was beyond height. I woke up and felt like a king.

  {

  The days. They are our lives. I’ve forgotten what it is like to be the person I was. Those days. Sometimes it’s so simple. I look at my father and see the same forces throughout his life. Family and his work. In that order. For ever. I’m that simple. We’re cut from the same cloth. He has the soul of a cowboy.

  {

  I have been in this hospital now for four months and I am going home on a home ventilator. I am one of the first people with ALS to go home ventilated in Ireland with the support of the HSE. The HSE seems to get nothing but bad press yet they have been exemplary in their support of my move home. The nurses in the Beacon have been inspirational, guiding me through the terror of respiratory failure and the panic of recovery. I have been educated here in the vocation of caring. And the Irish Motor Neurone Disease Association has been unendingly supportive. For those two consultants, who, I have no doubt, believed that they were doing the right thing, believed that they were delivering the hard truth, I have nothing against them. But I do wish they would open their eyes. There is no hard truth, only truth on a given day by a given person. It is people who are hard or soft. And for every moment of hardness there has been an equal moment of kindness from a nurse or a different doctor, and I had many. A moment of kindness to a panicked, terrified patient, to the most vulnerable of people, allows the part of me that feels like every part to take a breath.

  A consultant anaesthetist, Silvio Gligor, whom I have got to know over the long days here, comes into the room. He wants to say goodbye as I am going home in two days’ time. He stands there, wrestling with his emotions, clearly wanting to say something of meaning to me, not just platitudes or farewells. The silence hangs about him as he tries to work out what it is. It is an emotional moment, rarely found between two men. When he finally does speak, this is what he says: Go home and teach your children many things.

  {

  I do not speak for all people with ALS. I speak only 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.

  Change is possible. John Magner, the consultant who told me I would have to switch off the ventilator, came in to see me after four months and told me I had come a long way and that he had learned a lot.

  I am not a tragedy. I neither want nor need pity. I am full of hope. The word hope and ALS 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.

  {

  It’s not important that you know everything about where I come from. About who I am. It’s not important you know everything about ALS, about the specifics of the disease, about what it’s like to have it. It’s only important that you remember that behind every disease is a person. Remember that and you have everything you need to travel through my country.

  A life

  The nurses are crying. This is the goodness of people. They have come out with me in the ambulance home and they are crying because they are saying goodbye after four months together. I’m crying, of course. Four months is a long time in a room with no windows. They leave and I’m home. In my bed. In my bedroom. I can’t take it in. It’s all wood and colour where my world has been white. It’s like butterscotch to my eyes. An orgy to my senses. I take it in.

  {

  I recover, but everything is changed once more. My hands are very weak. I use my touch phone as a mouse for my laptop so I can write. My voice is low and difficult to understand but I can still speak. I’m on a ventilator. The biggest change of all. The defining change. I now have a little box beside me that generates my breath, fills my lungs with the air my weakened muscles can no longer provide.

  That little box has saved my life.

  {

  In the hospital I became aware that writing with my hands was becoming more and more difficult. An inspirational occupational therapist, Sarah Boyle, organises for a rep from a computer company, Nick Ward, to fly over from England to demonstrate an eye-gaze computer with me. It is extraordinary. A revelation to me. Freedom. My hands back, with the movement of my eyes.

  Nick comes out to Greystones with my computer, funded by the incredible Irish Motor Neurone Disease Association. He is a gentleman with a droll British wit. He sets me up. A friendship is born. The computer enables everything: writing, internet, phone, text, TV. I’m driving my chair with a switch operated by my head. Try and stop me.

  {

  Our lives have changed again. I now have a nurse day and night. A stranger in our home. Footsteps at night in the hall. But help, where before my wife and my family were struggling to survive. I no longer have to wake Ruth throughout the night. Independence during the day. Ruth starts to sleep, leave the house without fear. A life.

  {

  I watch an Irish documentary about ALS and am struck by an element at odds with my experience. It concerns Professor Orla Hardiman, head of ALS research and care in Ireland. In the documentary she is introduced as ‘a tireless patient advocate’.

  When I collapsed and blacked out in the Beacon Hospital, they put me on a ventilator to keep me alive. I woke up terrified and disoriented. When I gathered myself and realised the situation, my first thought was: I’m in the wrong hospital. I should be in Beaumont, under Orla Hardiman’s care. But her response was: ‘We do not advocate ventilation for patients with ALS.’
/>   I and my family were beyond stunned. ‘Do not advocate.’

  My sister Ruth is a powerhouse and she gathers every piece of information about home ventilation and we forge our own path. But I think of those who don’t have that support.

  Ventilation and ALS is a sensitive topic. I write an article in the newspaper about my experience in hospital, and the paper gives Orla the right to reply.

  In reply to my article, Orla and her team state that mechanical ventilation is discussed with all her patients, and that most don’t want it (when they hear the details about it). She also points out that the resources simply aren’t there to support ventilation for patients with ALS.

  The other point she makes is that the problem for a person with ALS being on a ventilator is that it may be difficult for that person to communicate when they would like to come off the ventilator.

  Communication is key with ALS because the disease takes your ability to speak. But it need not take your voice. Living in Ireland, with the support of extraordinary people, individuals with ALS can avail themselves of an incredible amount of technology that enables communication. Eyes, eyebrows, even the twitch of a muscle, can be utilised to give you back your voice. And while ALS can strip you of all such means of communication (the ‘locked-in’ state), though it’s rare, this takes time, and you can communicate your wishes in terms of ventilation before that occurs.

  To me, advocating for patients means fighting on their behalf, for their wishes.

  Life on a ventilator with ALS isn’t something everyone with ALS would choose. But for those of us who choose that life, I believe we need real advocates to support our choice.

  {

  Christmas

  I start to write full time again with my eyes, using my new computer, as I start to recover, as my body grows stronger every day out of hospital.

  I’m working on my feature script, and my sister Kate comes over in the afternoons and we talk about scenes. I print out drafts and poor Ruth knows the script verbatim.

  We are struggling with the new routine, the constant presence of strangers.

  My hands have stopped moving. My voice has become unintelligible. A slurring mockery of what it was. I use my computer voice for the first time, nervously, self-consciously. It quickly becomes my voice.

  {

  The principal of Jack’s school asks me to write the nativity play for the Christmas Carol Mass in the local church. I accept, of course, and it becomes a strangely fulfilling task. The story of birth and love.

  {

  I have ALS. It is a part of who I am, evolving, influencing and living with all the other parts of me. The greatest achievement of my life is that somehow I managed to be the person that Ruth fell in love with. That’s it. And our boys save our lives every day.

  {

  It’s now four years that I’ve had ALS. The prognosis of three to four years to live did not factor in the ventilator. I’m past the four years and back out into the unknown, just where I want to be.

  {

  It’s cold and autumn is turning into winter. The leaves move across the road, bright with the sun. We visited my parents today. My mother lit the fire in the kitchen and we talked of Christmas. And for the first time since I’ve had ALS I felt it. A fluttering, an anticipation, a dream of childhood Christmas. When we leave, the sun is shining and my soul is shining, like the winter sun.

  {

  Society is predicated on the idea that we all have the same wants and needs. But that’s only when you reduce us to the same. What’s different about us is just as important. The mystery of each of us. When we’ve read all the books our parents read, and missed a few, and read a few they never read, we still won’t know what that person sitting opposite us on the train is thinking, feeling, remembering or dreaming. Never. Not for sure. Isn’t it wonderful?

  I’m sitting in a café. I have a pipe over my shoulder for air. The place is full of people sitting in twos and threes, talking over lunch. Two girls sit opposite me, leaning in across the table, deep in conversation. What are they talking about? I look around. What is anyone talking about in this sea of voices?

  Truth does not endure. If it did, a great silence would hang over the earth. We take what we can from the past and make the rest up between us as we go along. It’s wonderful. It means, at any given moment, anything is possible. Ruth walks back towards our table, carrying our coffee. She is pregnant with our fourth child. And our fifth.

  {

  The love of my life is pregnant. We are alive.

  {

  My willy works. It’s that simple.

  The day I found out that ALS didn’t affect my penis was a red-letter day. Unlike a spinal injury or condition, ALS does not take away any feeling from my body. It removes my ability to send messages to my muscles to move. But as the penis is not a muscle, it is unaffected.

  Other things remain. My eyes. Some of my facial muscles. I can still move a tiny muscle in my left hand. Just a twitch. But Ruth and the boys like to hold my hand while I move it, ever so slightly. It is a physical connection, however small. Raife calls it my imping.

  Ruth and I treasure the physical connection we still have. And we had decided, privately, to try for another child. The ultimate expression of being alive.

  {

  We go into Holles Street Hospital for our first scan. Jack was born here, in the basement, six years ago. He came out blue and big. I will never forget. People’s feet passing in the window. My first born.

  We are in the room, the midwife, Ruth and I. Ruth’s stomach being rubbed with jelly and the ultrasound. So you know it’s twins, she says. You’re joking, Ruth says. The woman looks a bit put out, as if the idea that she would joke while doing her job offends her. No, she says. Ruth and I look at each other, eyes wide, incredulous. No, we didn’t know, Ruth says. She and I are screaming inside. Would you like to know the sex? Yes. I think I say it through my computer or it might have been Ruth or I might just have thought it. Well, twin number one is a girl. Ruth and I start crying.

  {

  Ruth is gloriously big. Rest-a-cup-of-tea-on-her-bump big. It’s cold. It’s Christmas. We go down for the Carol Mass. I’m all wrapped up. As we move in the darkness, the cold crispness, moving with the people towards the yellow light of the church, I realise I’m as far from hospital as I can possibly get. I’ve made it. Out.

  I’ve written a number of short poems to tell the story of the nativity, interspersed with carols. Sitting there, in the coolness of the marble, as the children give life to the poems, I am truly happy.

  {

  This day

  People are amazing. I’m in the back of the car. We’re moving fast. Riding bumps like waves. My chair lifting off the floor. In the back with me is my friend Cait from Limerick. Crazy. Has me in stitches most of the time. In the front is my brother-in-law, Pierre-Yves. French. Crazy. Drives like a madman. But he’s not driving today. He’s on the phone to his mother, speaking in a rapid rush of French. It’s her birthday. My mother is driving. Bray. Crazy. Drives like a madwoman. I’m on my way to the hospital. Ruth’s Caesarean is taking place at twelve. It’s twenty to twelve.

  {

  I believe in birthdays. I count forwards now, not back. I look ahead at forty and think, Yes. Yes, please. When I hear someone’s age I subtract mine from theirs. Sixty-seven. Thirty years more than me. Old people are the worst. Ninety-nine. Sixty years more. Jesus. I look at older people with awe. You did it.

  It’s easier looking back. Twenty-five. I’ve lived twelve years more. Yes.

  Then I look at my children, six, four and three, and I see how much they’ve lived in their lives, how much they’ve become, and I say, Wake up, learn something. It’s all there for the taking.

  Quite often, people who haven’t seen me in the last four or five years find it almost impossible to reconcile the difference in me over that time. I don’t blame them. I often find it hard myself. One way, for me, is to think I’m in my fifth year of ALS.
The Second World War was six.

  {

  I’m nervous. In my stomach. I’ve been on this road before but nothing changes. Pierre-Yves turns from the front, his phone still pressed to his ear, and says, Mum says, did you know that Caesarean got its name because Caesar was the first child to be born that way?

  No, I didn’t know that. He slips back into the silk of spoken French. Caesar, I think. Caesar was born that way. Ok. The nerves in my stomach ease a little. We’re approaching Holles Street.

  {

  History. All around us. Buildings older than any of us. The news telling us what’s important every day. Yet there is a more important history. The things we gather. The photographs we hang. The things we use. Our living memory. The wake we leave behind.

  When Ruth and I were searching for our first home, we walked into a bungalow we could not afford. Other people were walking around the house, in and out of doors. It was inviting, old-fashioned but immediately warm. The kitchen presses were simple seventies and the window above the sink looked out onto a garden run round with flowering plants. People stood in the garden. Ruth went on out. I stood in the room alone. I opened a narrow press by the back door. On a little shelf was a pair of gardening gloves, fresh dark earth still crumbling on the fingertips. I am transfixed. Embarrassed. Suddenly aware of doing something wrong. Why did I open the press? I shouldn’t be here. I close it quickly and hurry out after Ruth.

  When we go to leave I ask the estate agent. Yes, he tells me, the owner only passed away last week, an older lady, living by herself. The family are hoping for a quick sale. He smiles. I want to run from the house.

  {

  They are waiting for us at the doors of Holles Street. Whisk us upstairs. My amazing people dress me in surgical gown, hat. Time has stopped. I enter the room.

  Ruth is on the table. The medical team are beyond amazing, ushering me in, helping me get into the best possible position beside Ruth (Ruth later tells me if I had moved back and forth once more she was going to kill me [I was nervous]). They start. Ruth holds my hand. I watch everything. Sadie comes out feet first, screaming, blue. Then Hunter, bum high in the air but silent. Ruth and I look at each other. They lay him beside Sadie and he lets out a roar. Ruth and I start to cry.