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Living with schizophrenia

Posted by (Service User Network) Sun Cornwall & Plymouth on 27 November, 2011 at 19:10

Living with schizophrenia

Amanda Mitchison

The Guardian, Saturday 5 February 2011

To Patrick Cockburn, it's an illness that has eaten away at his oldest child. To Henry, it has been a revelation. Father and son tell Amanda Mitchison how schizophrenia has changed them both

From the very beginning, Henry insisted there was nothing wrong with him. He believed in his visions and voices – just as he still, partially, does today. Photograph: Rob Murray

Henry Cockburn, 29, has a profound connection with nature. The wind and the trees speak to him. So, too, do birds and small mammals. And they all seem to give him lousy, life-threatening advice. Thorn bushes tell him to take off his clothes and climb barbed-wire fences. The wind ushers him towards railway lines. Trees have urged him to escape psychiatric hospitals and beckoned him into freezing ponds and rivers. It is a wonder, really, that he is still alive.

We meet in a pub in north London. I half expect Henry to arrive scantily dressed or barefoot, but the very bad days of his illness are thankfully over. Instead, he is muffled up in a woolly scarf and a baggy tweed jacket. Sitting opposite him is a quietly spoken, understated middle-aged man with a walking stick and a hessian bag containing one of Henry's angular, semi-abstract paintings.

This man is Henry's father, the war reporter Patrick Cockburn. For another measure of Henry's slow recovery is the fact that, with Patrick, he has co-written Henry's Demons, a quite extraordinary book about his schizophrenia. Father and son have taken it in turns to write the chapters. Patrick's contributions chronicle Henry's descent into the illness and tell of how Patrick, his wife Jan and their younger son Alex have coped, and tried to help him. Henry's chapters are quite different. They describe the world as seen by a schizophrenic and are written with a vivid, childlike truthfulness.

Today, Henry is hunched over his lunch, looking dishevelled and distracted. But his manner is warm and he's immediately very likable. He tells me he wants to be a rap artist and says that he is hoping, in the next few weeks, to move into a flat in a sheltered housing complex in Herne Bay, Kent. At the moment he's in a halfway house in Lewisham, but this will be his own place. He will be able to set up an art studio in the front room and, at long last, to smoke indoors.

Does he still hear voices in trees?

"Yeah," Henry says, a little warily. "Yeah."

And when he goes for a walk, do animals sometimes tell him where to go?

"It's more letters," he says. "Have you noticed those signs that say H? A black H on a yellow background and sometimes it's got numbers." He draws a sign with a capital H.

"Ahh," I say. "That's a fire hydrant."

"It's a sign," Henry says.

Patrick asks gently, "Henry, do you still feel that is a sign to you?"

"Definitely," Henry replies.

Patrick presses again: "You still feel that if you see a fire hydrant?"

"Yeah, I do. Or an FH says, 'Fuck Henry' – that means I am in the wrong place. Or D, that means there is a demon around."

Patrick looks down at his plate.

I ask Henry how his illness began and he tells me that 10 years ago, when he was an art student in Brighton, he stayed up the whole night. "As dawn came I walked out of the building. And I had changed. I walked towards the pier. I could hear the seagulls. It was like, 'You get a fresh start from here on.' That was what life was saying to me.

"And there was this vine – a sort of shrub – and I could hear a voice behind it saying, 'Henry, I have got something to show you.' I looked in the shrub and I saw a little bird's nest and it was made of little bits of plastic. I thought if I climbed up the vine at the top of the wall I would find the Hanging Gardens of Babylon."

"And that,'' Henry concedes, "is where I went a bit mad."

By his own admission, he had smoked a lot of marijuana. Was the experience like being stoned?

Henry shakes his head. "No, completely different. The opposite of being stoned. It was clearer." Then he adds, "I am not regretful – in certain ways it was a psychosis. But if I had my life back again, I wouldn't take it back."

In early February 2002, a few months after that first dawn walkabout, the skies finally fell in on Henry. Patrick was in Kabul reporting on the fall of the Taliban when Jan, who was at the family house in Canterbury, called him with the news; Henry had been rescued from Newhaven estuary after swimming fully clothed in the freezing water. The police had deemed him a danger to himself and he was confined in a psychiatric hospital in Brighton (he was later sectioned).

Patrick's account starts here – with him hurriedly setting off on a dangerous drive through Afghanistan to the Pakistan border. When he reached Britain, he spent weeks living in a hotel in Brighton visiting Henry in hospital every day and trying to boost his son's morale by taking him for walks along the sea front.

Patrick began to read up on schizophrenia. "Knowing nothing about mental illness, I then, to my horror, discovered that it was about 100 years behind the treatment of physical illness." It was clear that drugs could control or alleviate the symptoms, though it wasn't understood quite how or why – only that the best chances of recovery came from early diagnosis and treatment.

Patrick also looked into the causes of schizophrenia. What part did genes play? To what extent was it induced by stress or trauma? Inevitably he went back over possible pitfalls in his son's upbringing. Owing to their jobs – Jan Montefiore is a professor of English Literature at Kent University – Patrick and Jan had spent years living in separate countries. Could the strains caused by this have rebounded on Henry? And what about drugs? Henry had started smoking cannabis at the age of 14 and Patrick had never considered this a serious problem, partly because he hadn't thought his son smoked that much. "Now," Patrick says sadly, "I think it played a significant role."

There was to be one huge obstacle to Henry's recovery. A common symptom of schizophrenia is the patient's lack of insight into the nature of their illness. From the very beginning, Henry insisted there was nothing wrong with him. He believed in his visions and voices – just as he still, partially, does today. How could he not, when they were so real and so magical? As a result, Henry refused medication and, when forced to take it, often secretly spat it out.

For the next seven years, Henry spent most of his time in mental hospitals. From 2004 onwards he was in supposedly "secure" units, but somehow managed to escape more than 30 times. In total, he stayed in six different hospitals and rehabilitation units, yet for the first five years of his illness, no institution seems to have been able to contain him, or to get him to take his anti-psychotic drugs consistently. It was only in 2007, when Henry finally went to Cygnet hospital, in Beckton, east London, that nursing staff routinely gave him his medication not as a pill, but crushed up in water. He was then supervised for the next half hour to ensure he didn't throw it up. This was also the first hospital where he was not able to escape, and by the beginning of 2008 his condition had begun to improve.

You might expect his father to be spitting with fury over this catalogue of ineptitude, but Patrick is a tactful, gracious man. "There are reasons," he says diplomatically. "It's a real pain in the arse to get someone to take their medication if they don't want to and are concealing it or spitting it out. And secondly, it is very time-consuming. Thirdly, there may be a bit of an inhibition at any form of compulsion in mental hospitals. So they have this rather weird thing of having locked doors, but with rather weak locks. Somewhere in the back of their minds they are thinking, 'We are not running Bedlam. We are not keeping people chained up.' ''

So how did Henry hide his pills?

"Oh it's easy," Henry says. He takes a bit of bread, rolls it into a pill shape and pops it up under his upper lip. He then drinks some water and shows me a clean mouth. He beams endearingly.

Patrick says that Henry's charm and general niceness was part of the problem. "One of the reasons you could get out so much was that the doctors and nurses all tended to like you," he says to Henry. "And then the nurses and doctors were also very upset whenever you disappeared. You've gained weight now, but at the time you could run like a rabbit!"

"Yeah. I've got a rap about that," says Henry. "Shall I do it? Dad is going to grimace."

Henry recites his rap, which is fast and feverish and all about the excitement of escape. It begins:

"I feel tense/For the suspense/Of climbing the fence."

Patrick says it is almost impossible to describe the all-consuming terror he and his wife experienced every time Henry escaped from hospital. The book includes a diary kept by Jan during a cold spell in early 2004 when Henry went missing three times in rapid succession. At one point, after a call from the police, Jan finds Henry in hospital being treated for frostbite and hypothermia. A couple living in a cottage outside Canterbury had found him naked in their driveway. He had, it seems, spent two days sitting in the snow. When the ambulance arrived he was reciting poetry.

"Henry, I think you would have copped it if you went on doing that," Patrick says quietly. "Did you ever realise you nearly died?"

"I don't think I ever did nearly die," Henry says.

"You did spend two days sitting in the snow thinking you were not going to die. Up till the last moment you could be thinking you were not going to die." Patrick turns to me. "This psychosis affects the actual chemistry by which you detect heat and cold."

Henry protests: "When you have been in the snowdrift for a long time, your feet just go numb. It is not cold walking any more."

"That," says Patrick, "is frostbite!"

It's time to take photographs and we walk up Primrose Hill to where the camera has been set up. On the way up the path, I ask Patrick if he feels exasperated that Henry sees his schizophrenia not so much as an illness but as a revelatory gift.

"Well, in some ways it is exasperating, but the fact that Henry sees this as a valuable experience – and to some extent it is an experience of value, or we wouldn't have written a book about it – is protective. You don't have to think of years wasted. Years which have been unhappy. So it isn't entirely negative that Henry thinks that way. As long as he also thinks that it is necessary to take his medication."

And how has Henry's illness affected the family? "It tests every relationship. Mine with Henry, myself and Jan, Jan and Henry, Alex with Henry."

We continue on up the slope. We are walking very slowly as Patrick suffered from polio as a child and spent years with callipers, crutches and corsets. He can get about with the help of a stick, but he has a bad limp and cannot run. Those days walking around Brighton with Henry must have been a real struggle. Did Henry's illness bring back any echoes from his own childhood?

"Oh, it's a much shorter thing," he says a little dismissively. "You get polio. You die or you don't die. You are crippled or you aren't crippled. At the time, it put gigantic pressure on my parents, but it was over in a quite a short period. Of course, afterwards they had to help me, but they were both good at that and it was something they could do."

Patrick and Jan have done many things for Henry. They have visited him continually and brought him food and books. They've devised interesting outings and visits to restaurants. And even when he's been holed up in hotel rooms in Baghdad, Patrick has called Henry and tried to hold cheery conversations down a crackly satellite line – anything to sustain a sense of normal life.

But the most inspired project has been the writing of this book. The idea came to Patrick in 2008, when Henry had been at the Cygnet for a year and his condition had started to improve.

"I thought, 'What is Henry's future?' And one very obvious asset is that he knows what it's like to have a psychosis for a very long time and he knows what it is like to be in a mental hospital for a very long time. And I thought, it shouldn't be Henry telling me what happened to him. The only person who can really describe what it's like to have a psychosis is somebody who has got it, because it is so peculiar."

Henry required a huge amount of coaxing and encouraging. But when he got down to writing, he did so with great fluency and flair. "I knew he'd be able to describe it well, but it was more vivid than I could have imagined," Patrick says.

When I speak to Jan on the telephone, she says she's sure that writing the book has been good for Henry and that he is continuing to get better. Not only has the writing focused his mind and given him goals, he has now earned some money and gained recognition. Next week he's off to the US for more press interviews.

At the top of the hill I find Henry standing among a clump of bare trees. It's not quite a blasted heath, but it's surprisingly wild for central London. With a big grey sky as his backdrop, he recites two more of his poems in a quick, urgent rhythm. Do things feel different now that he's taking his medication?

"Everything goes a bit yellow, that's all I notice," he says.

What have been the hardest times?

"This girl I knew. I haven't seen her for eight years. She came to visit me [in hospital] and I went to get a wedding ring and just everything went wrong."

Is he still in love with her?

"Yeah. I tried to get in touch with her on Facebook, but she didn't answer. That is what is worst about me at the moment. I'm lonely. I don't like being alone."

He adds, "When I get the polka dots, that is pretty bad. I see rings everywhere. Every hollow, every piece of ivy turns into a ring and I feel like I am in a godless void."

But there are good times, too, he says. He hangs out in a coffee bar in Lewisham where he's picked up a smattering of Turkish from the proprietor and made friends with another regular who does cryptic crosswords while Henry talks. And he describes a wonderful visit to The Poetry Cafe in Covent Garden, where he recited one his raps and the audience applauded.

Then he turns to me and says, "The book. Having the book. It's really good, isn't it?"

• Henry's Demons: Living With Schizophrenia, A Father And Son's Story, by Patrick Cockburn and Henry Cockburn, is published by Simon & Schuster at £16.99. To order a copy for £13.59 (including UK mainland p&p), visit the Guardian Bookshop.


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