My son Henry was diagnosed with schizophrenia when he was a 20-year-old art student in Brighton in 2002.
He had tried to swim across the estuary at Newhaven that February and was rescued from the freezing water by fishermen and taken to hospital, unconscious and suffering from hypothermia.
Henry was sectioned a year later and spent the next eight years confined in mental hospitals in the grip of a psychosis that ebbed and flowed but from which he could not escape.
He disappeared into a mental world where no barrier existed between dreams, nightmares and reality and the voices of trees and bushes spoke to him, became his friends and told him what to do. He hated being confined in hospital but could scarcely have survived outside it as he wandered through east Kent, sometimes walking naked along railway tracks or swimming lakes and rivers in mid-winter.
He ran away from hospitals some 30 times, but his very inability to look after himself meant that he usually, though not invariably, was found within a few days. It seemed all too likely to my wife Jan and myself that he would not live long and we were in dread of a final call from the police saying that it was all over.
In his more rational moments, Henry agreed with this, repeatedly saying: "I do not think I am going to live past 30."
In the event, Henry's strong underlying will to live, medical attention, family support and a fair measure of luck, meant that he did survive, unlike many of his friends in similar situations. From 2007 the impact of his disorder began to recede, mainly because he came under the care of a consultant who saw to it that he was no longer spitting out his medication, which controlled though did not cure his illness.
As he returned to a more rational view of the world, he spoke to me of a deep sense of failure and inadequacy, knowing that his friends from school were getting jobs, marrying and having children, while he sat wrapped in a blanket in the locked ward of a mental hospital.
In a bid to bring success and a sense of achievement into Henry's life, I suggested that he and I write a book about his horrible experiences as they affected him and his family. After all, he knew all too much from the inside about what it was like to suffer a psychosis and live for years in a mental hospital, things that most people regard with fear and know little about.
The book Henry's Demons: Living with Schizophrenia, a Father and Son's Story comprises alternate chapters by Henry and myself and a long excerpt from my wife Jan's diary. It was published in 2011 and became a bestseller.
Henry was then living in a halfway house in Lewisham and by no means fully recovered when he wrote his chapters. In the last lines of the book, much commented on by reviewers, he wrote that "it has been a very long road for me but I think I am entering the final straight. There is a tree I sit under in the garden in Lewisham which speaks to me and gives me hope." He still had quite a long way to go, moving first to a flat in Herne Bay where he lived largely independently, though there was a mental health nurse present during the day to assist or in case of emergencies. He decided to go back to art college in 2012 which gave essential structure to his life and where he got a good degree. He moved into his own flat in Canterbury in 2017 where he lives entirely independently, though still taking medication to which he sees no alternative.
Henry drew and painted with vigour and originality from an early age and always wanted to be a professional artist. The first real sign that something was going wrong in his mind, though I did not understand this at the time, came in the summer of 2001, six months before his breakdown when I took him and his younger brother Alex on holiday to Venice.
Henry was skilful at swiftly sketching people he met accidentally and, in this case, he drew two women travelling in the same boat as ourselves on the Grand Canal in China. Usually people were full of praise for Henry's work, but on this occasion the women looked perplexed by what he had drawn, and I could see why when I looked at his sketchpad which was covered with meandering lines. He continued to draw and paint in hospital over the coming years. This had a good effect on him, though his pictures were dark and menacing. It was only gradually that his talent fully returned and only this year that he felt distanced enough from hospital and psychosis to portray them in a series of 10 paintings published here for the first time in a three-part series.
The subject of the paintings, along with articles by Henry and myself, is what happened to him since the moment of his first breakdown and how he survived it. Our hope is that our experiences will be of practical use to others similarly afflicted and show that it is possible to struggle successfully against a psychosis and for a victim to regain a large measure of happiness.
Henry at his worst, was very mad indeed, yet against the odds, he did live through full-blown schizophrenia from which Jan and I despaired at times of him ever emerging with his personality intact and capacity to live a creative life restored. These 10 paintings take Henry from the day he hid in a tree, whose branches spoke to him, on a railway embankment while police searched for him in 2002 to rapping on stage to a cheering crowd 15 years later. Other pictures portray grim experiences: his near drowning in Newhaven estuary, solitary confinement in a locked room in hospital and his forcible sedation by hospital staff. These are depressing subjects but ones which Henry paints and writes about with surprising buoyancy and vivacity.
When Henry first became ill, I found that most of the population knows nothing about mental illness and its treatment, but a large minority knows all too much. At any one time in Britain, there are 220,000 people being treated for schizophrenia by the NHS. (Take undiagnosed cases into account, the true figure of sufferers may twice that.)
The effects of schizophrenia are devastating: some 5 to 10 per cent of those suffering from it kill themselves and only 13 per cent are able to work again. At the time Henry was rescued from Newhaven estuary, I was part of the ill-informed majority who believe that schizophrenia and bipolar depression are distinct diagnosable illnesses like typhoid or polio, though in fact they are a set of fluid symptoms that may change over time.
The asylums were supposed to be replaced by "care in the community" or as former Health Secretary Alan Milburn put it, what amounted to a "couldn't care less in the community" policy.
I remember returning from seeing Henry for the first time after his rescue in the former Brighton & Hove Priory clinic in 2002 and being horrified. I had looked up "schizophrenia" online to discover that a leading American doctor had described the condition as being to mental illness what cancer was to physical ailments. The average age of its onset is 18 for men and 25 for women. Genes may make some especially vulnerable to the disorder doctors are always asking if there is a family history of mental illness but most victims have no such history. Almost any personal or social adversity can contribute to producing "schizophrenia" which is not a distinct entity but is rather the severe end of psychosis.
The most useful advice about how not to deal with schizophrenia came to me early on from Marjorie Wallace, head of the mental health charity Sane, and heroic campaigner for the rights of sufferers of mental illness. She warned me against imagining that there was any cure-all magic bullet available.
She said one should not expect better treatment in the private sector than in the NHS or suppose that there is some super-drug or exotic therapy that can be obtained by spending a lot of money. "Unfortunately, they [such cures] don't exist," she said. "Whatever you do, stick to the NHS." The advice is worth repeating because some families, shocked and desperately seeking to save their children, ruin themselves in pursuit of non-existent cures.
A surprise in those early days was that when I mentioned what was happening to Henry to close friends, a high proportion of them replied that they had a parent, brother, sister or child who suffered from the same condition. None of them had ever mentioned this to me before, probably because of the pain involved and the fear of a relative being stigmatised or treated as a pariah. Whatever may be said about increased public sympathy for mentally illness, most people are secretly or openly terrified of real madness. (When people like Prince Harry call for greater openness about mental health they are generally speaking, though they may not realise it, talking about something less incapacitating than serious psychosis in which a person's whole personality is capsized.) Maintaining secrecy is damaging in a way that may not at first be obvious to those who are doing all they can to protect somebody close to them.
The disorder may be life sentence and the victim will have difficulty surviving it without continuing support from their family and close friends. Only they can provide the necessary physical and moral support, but they need to know what has gone wrong, the nature of the illness and what they can do to help. Their contribution is all the more necessary because of the disastrous rundown of the old system of mental hospitals in the US and UK so there are now more mentally ill people in prison in both countries than there are in hospitals.
The asylums were supposed to be replaced by "care in the community" or as former Health Secretary Alan Milburn put it, what amounted to a "couldn't care less in the community" policy. Government enthusiasm for closing places where people in real need of protection can get a bed was fuelled by the knowledge that it is 44 times cheaper to entrust them to largely non-existent communal care. The only real safety net is the family: Jan and I were fortunate in that we both come from large and supportive families. They visited him in hospital, called him up on his mobile and were there for him when he called them. They also sustained us with advice and sympathy which helped preserve our own physical and mental wellbeing.
It is too easy to exhaust oneself emotionally in dealing with the first onset of mental illness on a close relative. I made a mistake during the first year of Henry's illness of resigning from my job on The Independent in order to devote all my efforts to looking after him. But this was not a moment for dramatic gestures and my decision just added to our family's already excessive level of stress. It would have been far better to maintain established routines and not to further disrupt our lives.
I came to see combating Henry's psychosis not as a matter of eliminating it entirely, but of confining its influence to a smaller and smaller part of his mind. No counter-measure is a cure-all, but this did not mean that schizophrenia cannot be brought under a degree of control. The right medication is a necessity, but at best can only suppress the worst symptoms of the illness. People are often over-optimistic about therapies like CBT, but these only really work if mental ill health is a long way short of psychosis or a large measure of recovery has already occurred. Severe mental illness inflicts such miseries on sufferers a pariah status, joblessness, poverty, isolation that they can decide that life has nothing to offer them so drug or alcohol abuse and suicide become rational choices. Henry was able to escape this downward spiral because he had endurance, intelligence and education and was sustained by family and friends. Somebody without these advantages would have difficulty surviving, as this series should help explain.
Catch the next part of Patrick Cockburn's recollections in tomorrow's Daily Edition
The Independent