Henry's demons: Why my son's story needed to be told

In January 2002 my son Henry nearly died when he tried to swim the estuary at Newhaven. He was rescued from the freezing water by fishermen and taken to hospital. He had started off that morning from Brighton, where he was an at art student, intending to walk along the coast to his home in Canterbury. As he walked, he felt brambles, trees and wild animals urging him on. He believed there were prisoners hidden behind the high sea-wall and he sang to them. When he reached Newhaven he first hid under a heap of ladders before entering the water.

I was in Kabul reporting on the fall of the Taliban when I called my wife Jan on a satellite phone and she told me what had happened. It came as a total surprise. I had seen Henry, who was then 19, at Christmas and he seemed his usual charming, humorous, intelligent self. He had told me that during his first term at art college in Brighton he had been happier than ever before. Jan had told me a week earlier that Henry had behaved peculiarly when she visited him in Brighton and I was a little mystified by this, but I thought this might be student eccentricity and I certainly did not take on board the ominous implications of his behaviour.

Within days of Henry entering hospital, doctors diagnosed him as suffering from paranoid schizophrenia. With difficulty, he was persuaded to take medication, but he kept secretly spitting it out. My initial hope that he would have only one psychotic breakdown was soon disappointed. He was sectioned in early 2003 and spent most of the following seven years in mental hospitals. He escaped 30 times by his own account and several occasions almost died, once sitting naked under a tree in the snow for two days.

He showed disastrous ingenuity in avoiding taking his medication which could control but not cure his psychosis. Only when he moved to Cygnet hospital in Beckton in east London in 2007 did he start to improve, because it was difficult to escape from there and the staff had succeeded in getting him to take his medication. As he started to recover – and this recovery is by no means complete – about three years ago I began to think that he and I should write about our experiences.

I felt that we might turn everything he had suffered into an asset. He was ideally placed to write from the inside about what it was like to have an acute mental illness in which trees and bushes spoke and voices called him to flee into the night or plunge into icy water where he might drown. He knew what it was like to live in mental hospitals, places that most people regard with ignorance and dread. I believed that Henry and I could serve a broader public purpose by making schizophrenia and mental illness less of a mystery people are embarrassed to discuss. I began to think about a book with Henry about what he, along with the rest of his family, had been through. I thought what was really needed was a book which would not only be different from others but unique in its description of mental illness.

It would definitely not be just a book with a joint byline by Henry and me, which in fact would be an account by me of Henry's ordeal, like the best-selling but ghost-written memoirs of so many sportsmen, generals and politicians. I believed this would not do, even if I faithfully tried to report everything which had happened to my son.

The mental world in which he had been living was so different from my own that his first-hand testimony alone could convey what it is like to hear voices and see visions, to be tormented by waves of unexplained guilt and to lose all sense of the difference between what is imaginary and what is real. Only Henry himself could describe the landscape of this hidden planet on which he lived along with so many others suffering from schizophrenia.

I ran my idea for the book past him and he liked it, though when we spoke of his "hallucinations", he objected to the word since to him they remain genuine events. I thought the way in which he defended the reality of his experiences would be an advantage because, though people with mental disorders have written books, they commonly do so after they are largely recovered. This is not good enough, because I know, having reported many wars, how difficult it is to recapture intense emotions like fear of death, even seconds after the reason for one's terror has disappeared. I remembered the question asked by Alexander Solzhenitsyn in One Day in the Life of Ivan Denisovitch: "Can a man who is warm understand a man who is freezing?" I do not believe that somebody who does not have schizophrenia, or has recovered from it, can fully understand and describe what it is like for somebody who still has it. Henry could do so because he is well enough to write but not so distant from his psychosis that it had become ancient history in his own mind. I worried at first about subjecting Henry to extra stress by asking him to write about what had happened to him. I knew he could recall in detail all that had occurred because he told me that, surprisingly, his memory had improved during his years in hospital.

At first, I was incredulous, but when I tested him with a few questions I found he was right and he could remember the names of people whom he had met fleetingly five years earlier. I had not expected this because I had read somewhere that the memories of people with schizophrenia get poorer not better. I knew Henry could write fluently because he was highly educated and had done well in school exams, though these were often preceded by spasms of doubt about his own abilities. This lack of self-confidence persisted. It took a lot of coaxing and encouragement to get him to write, but once he did his style had a sort of radiant simplicity and truthfulness about his own actions. What he wrote was also full of surprises for me, though I thought I knew him so well, showing that only somebody suffering from this strange and terrible illness can describe what it is really like.

Our book, Henry's Demons: Living with Schizophrenia, a Father and Son's Story, is published next week. I had hoped that writing about his disorder might do Henry a lot of good, making it easier for him to admit that he had an illness and open the door for him to take his medication voluntarily. Previously, when he met old school friends he was clearly embarrassed when they told him they had jobs, were married, and had children, while all he could reply was that he had spent years in mental hospitals. But if he could add that he was writing a book about his experiences this would boost his morale and self-confidence.

The project worked better than I expected. At first Henry was shy about writing, and I bought him a copy of Günter Grass's The Tin Drum, the opening words of which famously read "Granted: I am an inmate of a mental hospital ..." I thought we should have a trial run of our twin narratives in a newspaper. Our article appeared in September 2008 in a supplement of The Independent and was highly praised.

All the time, Henry's mental balance seemed to be improving, and working on the book seemed to give him a sense of purpose and accomplishment. But he still had times of acute mental distress, which he called his "polka-dot days" when he would hear voices, see visions and be engulfed by waves of irrational guilt.

He had moved to a halfway house in Lewisham where he could go out when he wanted to. His mind was clearer. At the beginning of his illness he had regarded mechanical and electronic objects with fear and suspicion, but now he has started to use a mobile phone and a laptop again. This year, Henry is moving into an apartment in Herne Bay where he will live independently, but members of a medical health team will be in the building to help when he needs it.

His psychosis has not wholly disappeared. Once, last year, when I went to take him out to supper, I found him incoherent, shaking with fear, and in the midst of one of his brainstorms. He deals with these by going to bed and not getting up until he feels better. He came so close to death so many times in the past that exaggerated fear for his life and safety will never leave me. When Henry told me recently he was going to see a friend in north London, I had visions of him again lost and wandering the streets until he pointed out that he was quite capable of using an A-Z. Henry has fought his demons successfully and they have retreated, but they will never go away entirely.

'Henry's Demons: Living with Schizophrenia, a Father and Son's Story' is published by Simon & Schuster (£16.99). To order a copy for the special price of £15.29 (free P&P) call Independent Books Direct on 08430 600 030, or visit www.independentbooksdirect.co.uk