Headlights, dazzling

Headlights, dazzling. Suddenly moving quickly away from home, wide-eyed in the early morning. Seven am. Endless blue sky over Rutland Water. Delicate. Delicious. Dashboard, lit up, orange, red, white. Energy, light, icicle emotion. Azure canopy, lake three miles wide, sheer, glinting, rippling silver in the blinding sunlight. We have to close our eyes momentarily, the sight is almost too much to take in. Beauty is sometimes spiky painful. We like the way it hurts now.

Our sweet old cottage on the hill, on the peninsular to the right, surrounded by waves. Love sleeps there forever. We travel past like a bullet. Ford Focus red leaving a trail of poster paint in its wake against the pure white snowscape on the hill. Ice under our wheels. We drive by, slide by, riding at sixty miles an hour, with the Ospreys wheeling slowly above, warm under all their feathers, hanging in the freezing air, looking down, laughing. How far is it to London?

Switch on sense. It’s the end of the first week in December, such an important time for Nic and I. It was exactly at this time of year that Sepsis came so close to killing me, at the very end of the last millennium. Killing me. Since then, for seventeen years, we’ve worked so closely together to rebuild our lives, step by step, day by day. We always knew it would be hard, gruelling, gruesome, humbling, shocking, full of sacrifice, heavy with tears. Truly, it’s been all those things and much, much more.

There are things I can’t write about. I’ve crawled, I’ve cried, I’ve crumbled. I’ve walked on bleeding stumps and withstood pain so bad, so searing, so profound that I thought (hoped) I would pass right out of consciousness. Through all of this, Nic has been my light and my guide, smiling back at me, every day, for every waking minute, reassuring me, patching me up, fixing my body, restoring my soul. She has been, and she is, the reason why. Although I have no longer have hands, she has held both of mine all along the way. Led me. Back to life, back to reality. Her smile, her unselfish love, her everyday warmth, these things have fixed me. Believe this, if you believe anything. Never in the history of the world has there been a luckier man than me.

To London, then. To the Queen Elizabeth Olympic Park, where we are to speak at the NHS Commitment To Carers conference. Big thing, big deal, big day. It’s an absolutely awesome venue – yes, it’s the stadium where those incredible London Olympics were held in 2012, and where my old team West Ham United now play their premier league football. It’s huge, and architecturally speaking, it’s both a beauty and a beast. It’s a thing from space, a perfect kind of meteorite, mighty and oval, over-sized like a bully, neat and gleaming like a brand new car. Looking out over the pitch inside, from on high, the scale is simply monstrous, at the same time, the proportions inspire a sense of wondrous order.

My mouth opens and words beginning with the letter ‘a’ land in my mind like soccer balls into the back of a net. The sight of the empty stadium imbues me with powerful emotions of arrival, ambition, aspiration, achievement, awe.

To the speaking. I love to talk. It makes me happy, it pumps me up, I want to be good at it. Oh, and we have quite a story to tell. Our audience today. Nurses, doctors, hospital managers, caring organisations, carers, patients, politicians. Waiters, waitresses, cleaners, their backs to the wall, holding on to trays, checking their phones, wondering who we are. There’s a bright, unsettled, constructive, creative atmosphere. I love that feeling you get in an auditorium before an event, when it feels like anything could happen. Lights, camera, action. The seating is shallow, wide in the room, so we have to project forward, but mostly side to side: straightaway, I’m engaging all my actor’s training to reach everyone who’s listening. Showtime.

The trailer for Bill Clark’s film ‘Starfish’ plays, setting the tone, laying down our marker. It’s such a powerful introduction, with Tom Riley and Joanne Froggatt expertly and quickly depicting the panic of the onset of Sepsis. From a perfect romance to sheer physical terror in twenty five seconds (and that’s the way it was, the way it is in my mind, every time I try to go to sleep). The overhead drone shots showing the wild landscape of Rutland Water, the lake three lifetimes wide and glittering, in all its epic and indifferent beauty. The way the majestic natural setting seems to mock my damaged, amputated body and soul. Then finally, our daughter Grace, in the film, seeing me for the first time in hospital and calmly delivering the line:

“That’s not my Daddy.”

That’s our cue to speak, our time to shine, and away we go.

Lately, Nic and I have adopted a Q&A style to structure our speaking events, with me playing the Jeremy Paxman role, eliciting information from Nic in a series of frank, no holds barred questions. It works well, especially in today’s context, where the focus is very much on the caring experience.

We know the story, how it started, how the neglect set in at A&E, how the blood tests were delayed, how Nic suffered too because of the terror of my Sepsis and the late term of her pregnancy. We go through it, stage by stage, and I ask questions like, ‘How did that make you feel, when they told you I would probably die?’ and ‘How on earth did you hold it all together?’

We’re honest with each other, whether we’re speaking in private, or in public. There’s a lot of trust, a very creative partnership, because deep down Nic and I both know we’re pretty much unbreakable as individuals and as a couple. It didn’t faze me that time she told an audience about the day she actually left me, post Sepsis, for an afternoon, with no plans to come back home. I never knew it, until she spoke about it publicly. And today, as I probe her about the immediate pressure she was under as a carer, I can sense this is sensitive ground we’re treading on.

Imagine what she went through. Put yourself in Nic’s situation. The man you have changed everything in your life for, the man you love, the father of your children, suddenly at the point of dying. Or, perhaps living on, but horribly disabled. You are days away from giving birth to his son, he’s in a coma, his whole body is turning black.

Resilience. From second to second, from minute to minute, from hour to hour, day to day, she carried on and found her way through the crisis. Walked through a hundred miles of a burning cornfield.

“You take one day at a time, praying the next one won’t be as bad as the last. You look for positive signs. It seemed to me, if Tom was still clinging to life, doing everything he could in his coma to survive, and beat Sepsis, then why shouldn’t I? In that way, even though he was unconscious, we gained a lot of strength from each other.”

I like to tell our audiences that Nic drove over 10,000 miles visiting me in hospital during the period of my illness and recovery. That’s ten thousand miles. It reminds me that she must have thought I was worth saving, that I have a lot to live up to, that I mustn’t waste a second of the gift she has given me – which is the life I have left. As damaged and disabled as I am, I find joy, reassurance and a rewarding sense of perfection in this relationship I have with this other person. It sustains me.

Applause. I’m the one clapping loudest with my false hands.

We drive back to Rutland through the snow, through the night. Headlights, dazzling. Traffic jams, motorway stop, motorway go. The soothing banality of the service station, the familiar emptiness in the sound of BBC Radio 4. Life is a cleverly formatted half-hour comedy drama extended over seventy years. This romance is forever. A million cars go by, a billion different lives, a trillion breaths drawn in the darkness all around. Every one of us, hoping for a happy ending.

As we pass by the shore of Rutland Water, on the way home, the same Ospreys looking down, at our insignificant little red car. They move swiftly to their nest, high in the trees, disappearing into winter darkness.

Snow. Ice. A black and bitter midnight laid out on Rutland Water. Asleep now, in a frozen landscape. Nature understands. Two hearts beating. Beating on.

Then, there are no more words.