I'm still alive and writing is my fighting
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. 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.