“Oh God, that’s awful! Can you bear it? Is it really bad?

Do you want something for it?”

Another stupid string of questions he can’t answer. We continue in this way for several hours while the staff try to decide what to do. Finally, Hasso’s breathing difficulties become so bad that the doctors decide on a life-support machine. Numbly, I watch as tubes are attached and machinery is hitched up. His eyes are fixed steadily on mine, holding me and rooting me to the spot.

Hasso, just 42 years of age, had suffered a rare and massive stroke in his brainstem. This vibrant, funny, charming man — my husband for 20 years since we met in his native Germany, and father of our three children — was now immobile and incontinent, unable to speak, eat, drink or breathe properly. Yet, his mind, his senses, his clarity of perception remained untouched. Immured within the tomb of his otherwise perfectly healthy body, he was acutely aware of what had happened and conscious of the horror of it all. The medical term is “locked in”. He was, in effect, buried alive.

About 10 days after Hasso’s stroke one of the nurses handed me a book and said: “Have you seen this?” It was The Diving Bell and the Butterfly by the French journalist Jean-Dominique Bauby, who, like Hasso, had suffered a massive stroke, leaving him locked in. I sat down and read the book from cover to cover, feeling completely devastated. Bauby never regained any movement and died around 18 months after the stroke. I refused to think that this was going to be Hasso’s fate. I talked to him about the book, but I never read it to him. That would have been too painful for us both.

During the four years that followed, Hasso found himself face to face with a life as far removed from his own as it was humanly possible to imagine. But he burnt with a growing compulsion to tell the story of his experiences. Throughout the long days and nights of his confinement in hospital, he planned the ideas for a book in his head, storing up details and memories for the time when he could transform them into the first draft of a text.

We managed to get him home a year after his stroke and within days, to my astonishment, he used eye blinks to spell out a string of words to me. Although almost completely paralysed, with only a tiny residue of voluntary movement in his thumb and the ability to open and close his eyes, he “wrote” this account of his stroke and its consequences from his wheelchair.

At first he used a grid given to me at the hospital by a nurse. On it, letters are arranged in rows and columns so he didn’t have to go through the whole alphabet. Then he used a specially designed computer and ultra-sensitive switch system.

The process was grindingly slow. Each day he would insist on spending hours seated in his wheelchair in front of the computer, trying to articulate his thoughts and transfer them onto the screen. Letter by letter, his often unreliable flickering thumb movement would select options from the on-screen talking keyboard until words slowly formed. It gave him, finally, a sense of control and self-expression. He had found a way of translating himself, of revealing to anyone who might still doubt it that below the rigid, frozen surface of his locked-in body there ran the same deep, fast-flowing current as before.

Hasso: It all began with the dawn of what promised to be a perfect day. Catherine was visiting her family in Devon. We normally did everything like that as a family, but this once had decided that she should go alone for the weekend. Our eldest daughter, Lucia, was spending the night with a friend. Despite the other two children’s usual nocturnal activities, I was not tired and got up early. The sun was flooding through the house and I was eager to get out into the magic of the May morning.

I sent Sophia and Christian off to sort out breakfast and headed for the shower. I turned on the water. Halfway through, I suddenly heard a buzzing in my ears and realised I was starting to feel very strange.

Just like that. Absolutely fine, and then suddenly it felt as if the lifeblood was seeping out of me, which on reflection it probably was. I rapidly began to feel worse and worse. With trembling hands, I pulled down a towel and, willing my wobbly feet forward, I stumbled back to bed. This didn’t feel like anything I had ever experienced before.

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