I'm still alive and writing is my fighting

A year ago, film director SIMON FITZMAURICE, who has motor neuron disease, and his wife Ruth had just discovered they were expecting twins. Here, he writes of a new phase of his life

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 Caesarian is taking place at 12. It’s 20 to 12.

It’s all there for the taking

I believe in birthdays. I count forwards now not back. I look ahead to 40 and think yes. Yes please. When I hear someone’s age I subtract mine from theirs. 67. Thirty years more than me. Old people are the worst. 99. Sixty years more. Jesus. I look at older people with awe. You did it.

It’s easier looking back. Twenty five. I’ve lived 10 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 in 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 motor neuron disease (MND). The second World War lasted for six.

Hospital nerves

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: “Mum says did you know that Caesarian 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. Okay. The nerves in my stomach ease a little. We’re approaching Holles Street.

Important history

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 1970s-style and the window above the sink looked out on to a garden run round with flowering plants.

People stood in the garden. Ruth went out. I stood in the room alone. I opened a narrow press by the back door. On a shelf were 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.

In theatre

They are waiting for us at the doors of Holles Street. They whisk us upstairs. My amazing people dress me in a surgical gown and 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 – she 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 l start to cry.

More mystery than history

So much history. The days I’ve lived. The places that linger, the single moment that stays, like something from a book you once read. Glimpses that live within us. We are strange.

We want to know. But we don’t. If we knew how the body worked, there would be no disease. If we knew the mind, no pain. But there is too much to talk about. More mystery than history.

I write in bits and pieces. Live in bits and pieces. People live in my mind. People I’ve touched. A coffee and a cigarette at a small wooden table, with a girl sitting next to me. Knowing and not knowing. Love.

Pathways. Taken. Followed. And we end up having lived.

Leaning against a car, on a sloped German street. Waiting for someone. Cloud and sun. It’s cold when it goes in. I look up, the warmth on my face. I see an approaching cloud. How long before I’m in shadow? I follow its path towards the sun. I catch myself. Close my eyes. Feel the warmth on my face.

A bigger family

My extraordinary wife. I wouldn’t change MND. Those two babies in my arms. Their warmth against me. Rising and falling with my breath. I wouldn’t risk that for anything.

Eucharist means thanksgiving. That’s how I feel. Thank you. Caesar. Thank you all who watched over Ruth and Sadie and Hunter.

I send out a thank you. A beacon. Something. From as deep as you can go. To as far as you can reach. I will hold this day inside me for the rest of my life.

Balls of life

Six months now. Sadie and Hunter are fat, beautiful balls of life, with hands that reach to touch my face.

MND fought back these last few months, leaving me in terrified panic, drowning for air. Last week I bit the bullet and admitted myself into hospital for the first time since I left in March of last year.

It was St Vincent’s University Hospital in Dublin, and the week I spent there changed my mind about consultants. The warm, sincere individuals I encountered treated me with the dignity of being a person, not a disease.

I don’t know how other people handle MND but it sometimes lays me so low that I don’t know how I will go on. I feel like I’m being tortured, a thousand little jabs, that on their own I don’t notice but slowly over time they start to hurt, until suddenly I’m crying.

They’re tiny things I barely notice, little hurts I’ve grown used to. Someone I love not understanding me. One of the boys telling me about something I will never do again with them. The hundreds of urges that I have to do simple human things but cannot do, like sit on a couch with Jack and read a book and hold him, put my arm around him, tickle him. I think I’m doing fine and then realise I’m holding myself together with I don’t know what. Something unbreakable that pain keeps trying to break.

And then my boys pass the doorway on their scooters. Dot. Dot. Dash. Or wander into the room in their pyjamas, in the middle of some elaborate world of lizards and kings, the youngest watching his brothers with silent eyes of glass. Or one simply stands in the doorway, looks at me and says: “Hi Dadda.” And I remember.

And I write. Writing is my fighting.

A movie reel of memory

Some days you can just see clearly. Our meaning, what we value, is the most private part of us, it may just define us. It shapes everything we do, everything we say, everything we feel, everything we dream. It’s hidden, from others, from ourselves.

There is no mirror to show us what we value. So often it is only revealed to us after the fact, in the long movie reel of memory. And when we see it, our heart stops, aching with recognition. It is a beautiful thing to see yourself.

As much love as blood

I’m still alive.

On the way home from the hospital I see my reflection in my computer. I have a black strap across my head and a white one under my chin, a pipe coming out of my neck and going over my shoulder. I look like some crazy desert horseman racing along the dual carriageway.

I’m still alive. I seem to thrive on things trying to kill me. I’m still alive you bastard.

When I die, don’t say Simon loved films, say Simon had as much love in him as blood. That’s all. I’m racing towards a bridge.

Simon Fitzmaurice is currently working on his first feature-length film, in development with the Irish Film Board, and with his producer Kathryn Kennedy