I would not be just a nothin',
My head all full of stuffin',
My heart all full of pain.
I would dance and be merry,
Life would be a ding-a-derry,
If I only had a brain...
Lyric by EY Harburg

When snow lay heavy on the land, and January winds sang in the trees and beat at the plastic we'd hung in the cold door to keep the oil bill down, when Christmas trees shed their needles: that's when I died.

Stuck with other needles. Morphine and glucose. Twelve years old in a white room. Shapes and movement, the sound of machines, the coloured lights. Kingston, New York. 1989.

Apparently, when you die, they call for a priest. My mother, Patti, wouldn't let him in, kept him at the door with a look, a red palm held out: "You can't have him."

The beat of his black sneakers fading down the hall. No last rites that winter day, no good book. Just a cold line on the computer screen by the bed, flat, then back alive, God's own Atari game.

Chance? Fate? Medical science? Love? I pick the last. Call me a romantic. It was love that kept me here. It must have been. And stubbornness, to be fair. My family. My Pop and Nan, sister Clare, brother Ian and many others. Patti most of all. They wouldn't let me leave. Love. That's what's saved me, time and again.

Much later, after I'd learned what had happened, I found myself piecing together the story in my mind's eye, trying to make it fit – smudged pictures conjured through cracked memory and hearsay: I'd gone to school, collapsed in the hallway, been wheeled off to the nurse's office, where she took my temperature, found it high, and called my mum to come fetch me.

Once home, they drew a cool bath and put me in, hoping to cut the fever. It was there the hallucinations began. I thought my stepdad was trying to drown me. I beat the water and screamed. Frightened now, Patti got in the car and sped the half-hour down the mountain to the closest medical centre, Benedictine hospital. With a squeal of brakes, she pulled up in front of the emergency room doors, left the engine running and "ran in carrying you in my arms like you were on fire".

Inside, they told her it might be spinal meningitis, a swelling of the membranes that surround the brain and spinal cord. All the signs were there: crippling pain, fever, hallucination. They called for a spinal tap, but the room where they did the procedure was in use. The neurologist on the scene, Dr Frontera, wouldn't wait for the room to be free. He wanted a closer look at the brain. So he had them wheel me to another floor and send me through the bright sci-fi tunnel of the then newly developed Cat scan to find the early diagnosis of spinal meningitis was off the mark. I had suffered a massive brain haemorrhage.

They called it a cerebral aneurism, a weakness in a blood vessel that had ruptured, bled out and filled the space between my skull and brain with fluid and blood. The pressure was causing the brain to swell and the swelling was killing me.

It was in a new room on a new floor in a different wing where I suffered the seizure. They had begun to prep me for emergency brain surgery when it happened. The smell of laundered sheets and sterilisation. The omnipotent hum of base technologies.

This is the first time I've written any of this down. Yesterday I sat with my mum, sunlight falling through the screened door on her kitchen table, our hands, my notebook, and asked her to tell what she remembers. Tears, mine and Patti's, mingled on the tablecloth for the child she'd clung to. Here was the part of the story we never talked about. The missing piece.

My mother tells it like this: the seizure made you arch your spine. You bit your tongue. Your eyes rolled back in your head. When the seizure was over, I held your hand and you looked at me and said: Mum, I'm gonna die. I told you: No, you're not going to die. But then you did. Just like that. You knew. Somehow you knew. The screen flatlined and all the bells started ringing. When the doctors came running, I thought they were going to ask me out of the room, but instead they told me to climb up on your bed and talk to you, tell you you can't die. They shocked your chest. They shot you full of adrenaline. And I held your face and told you you couldn't die.

There was an ice storm that night. The worst in a century. The roads were closed, so they had to send a police four-by-four to gather the neurosurgeon and nurses, and bring them all to Benedictine. The surgery lasted hours. Afterwards, the doctors came and said you were alive. But not to get our hopes too high. If you survived the first 24 hours, you'd have a 50/50 chance of living. If you lived, you would likely have some degree of brain damage. If you lived, there was a good chance you'd be blind.

"Does he play the piano?" someone asked.

"No. Why?"

"The area of his brain that's been affected, some of which we've removed, is the area associated with music, art, creativity. If he played piano before, he may not play again."

After I made it past the initial 24 hours, touch and go, the neurosurgeon, Dr Gabriel Aguilar, told my mother the physical pain I'd been through was a close second to what it might feel like to burn alive.

The nurses took to calling me the Miracle Boy, and did not hide the nickname from Patti. I don't think I had any clue what the word miracle really meant until I watched my own daughter come into the world. But Pearl was still a universe away.

That summer, after they brought me back from the dead, I got my first guitar. A cheap affair, hardly ever in tune, same as the years that followed. But I spent them nonetheless, all 20-odd, in pursuit of the great rock'n'roll delusion. And still climbing its greasy ladder. Did Lazarus have a green room? Was there scotch on his rider? Was he met with fevered applause when he rose for his greatest show?

When I was a kid, I swore I'd be a marine like my Pop. Rattlesnake dreams. Black sands of Iwo Jima. The Frozen Chosin. The Perfume river. That's when Patti took me aside and told me: "The pen is mightier than the sword."

I was in Italy. Last show of a month's tour. Creepy hotel. Broken elevator. I climbed seven flights of stairs to my room, lost my breath, went pale and collapsed on the floor in the hall. When I came to, I touched the key-card to the door, went to the bedside and called Patti. Thirty-three years old.

"Hello."

"Mum?"

"Hi honey? Are you OK?"

"Mum, there's something wrong with my heart."

I did the gig that night and flew home the next morning. My wife, Jessie, eight months pregnant with our child, drove me up to a cardiologist in Albany. I have no health insurance, but my cousin Kelly is a nurse there and pulled in a favour.

They looked at my heart on a big screen and told us I had developed aortic stenosis, a calcification of the main artery, an anomaly brought on by some childhood trauma, and that there was no medical explanation why I was still alive. I might've died on the plane. Might've died on stage.

So there I was back in the white room. I kissed Jessie's belly. They wheeled me away and ran a tube down my throat. Emergency open-heart surgery. Aortic valve replacement.

When I woke in the recovery room, I could hear the faint, steady tick, tick of the mechanical valve they sewed inside me. Then I heard the glad, hushed whispers of my family in the hallway, just outside the door. I was drugged and thirsty. I asked the nurse for a drink of water and to please tell everybody they could come in from the hall.

"Mister Felice?"

"Yeah."

"It's three in the morning. There's nobody here."

Tick. Tick. Tick.

A month later, our daughter was born at home in a summer thunderstorm. Pearl Simone. Her father has an eight-inch scar on the backside of his skull that runs from the crown to behind his left ear. If my hair is shorn close, you can see it a block away. You might even think me a soldier. Made it home by the skin of his teeth. Luck of the Irish.

And if you see me on a summer's day, down by the river's edge, no big plans, no shirt, you'll see the long, pink seam that runs down the length of my chest like an angry zipper. Put your ear there and you'll hear me tick out the time.

I am the tin woodsman, hunting a heart. I'm the scarecrow, please deliver my brain. I'm the crocodile who swallowed the pocket watch. I haven't learned as much as I imagined I would by now. But I do believe we pass in and out of this world like a song on the wind. And that most of what we see and do in this life is grossly out of tune, behind or ahead of the beat.

But there are moments. You've known them. A kiss in a parked car. A melody in the dark. A meeting of eyes. A babe come in a thunderstorm.

She's got her father's swagger. And her mother's goodness. And Patti's strength of spirit. Go on, boy, write her a song. Read a story by lamplight. Sleep near and greet the pale sun together. Dance in the wet grass, round and round. When she's old enough to understand, tell her how her Grammy loved you back to life long ago. Love her like it's your last morning on earth. Love her more than yourself.

• Simone Felice's first novel, Black Jesus, is published by Allen & Unwin.