Staying alive
An ALS death sentence gave me a new life — and more kids
I ’VE had ALS for four years. Myoriginal prognosis gave me three to four years to live, but since I chose to go on a home ventilator, against all prevailing medical advice, that has changed. I’m past the four years and back out into the unknown, just where I want to be.
And now 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 my wife, Ruth, and our boys like to hold my hand while I move it, ever so slightly. It is a physical connection, however small. My son 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 to add to our three sons. The ultimate expression of being alive.
We go into Dublin’s Holles Street Hospital for our first scan. Our eldest, Jack, was born here six years ago in the basement. 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.
Months later, 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. Crazy. Drives like a madwoman. I’m on my way to the hospital. Ruth’s Caesarean is taking place at 12. It’s 20 to 12.
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.
They are waiting for us at the doors. 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.
My extraordinary wife. I wouldn’t change ALS. 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.
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.
Excerpt from “It’s Not Yet Dark: A Memoir,” out August 1, by Simon Fitzmaurice. Used by permission of Houghton Mifflin Harcourt. All rights reserved.