Alexander Cockburn writes: In 2002 my nephew Henry was diagnosed with schizophrenia at the age of 20. Harrowing times for Henry, his parents ? Patrick Cockburn and Jan Montefiore ? and his younger brother Alexander followed. Henry was expert at escaping from the various institutions in which he was supposedly secured. He would flee into the countryside around Canterbury east of London, often naked in the depth of winter (as described below in one of his closest brushes with death) and our whole family would wait bleakly for news, as the police searched for him and the snow fell.
After five years Henry started to recover. Patrick, as he writes in the preface to “Henry’s Demons”, “began to think he and I should write about our experiences. 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 to plunge into icy water where he might drown. I believed that Henry and I could serve a broader public purpose by making schizophrenia and illness in general less of a mystery which people are embarrassed to discuss.”
Henry liked the plan. As he overcame bouts of self-doubt the words flowed and as Patrick rightly says, “his style had a sort of radiant simplicity and truthfulness about his actions.” Earlier this year “Henry’s Demons” was published, to great acclaim, on both sides of the Atlantic. There were chapters by Henry and by Patrick , also a long, striking excerpt from his mother Jan’s journal.
Beyond the raw immediacy of the family’s recollected experiences “Henry’s Demons” raises serious issues about the treatment of schizophrenia, whether by therapy or drugs. In the first of three excerpts we start here with Henry’s account of his escape into the winter countryside and his experiences in some of the institutions where he was locked up.
Henry recovered rapidly from nearly freezing to death during his disappearances in January and February of 2004. In the following months, there were other, less dramatic escapes and attempts to escape from St. Martin’s. After one of these in May, he was moved to the supposedly secure ward called Dudley Venables House, which Henry, Jan, and I feared because it would be more prisonlike than the rest of the hospital. Patients regarded as a danger to themselves or to others were confined there. A single-story building, it did not look very different from the outside than the other wards.
The first time we went there to see Henry, a nurse asked cautiously over an intercom who we were before she opened one door, allowed us through, locked it again, and then opened an inner door which led into the main room. In front of me, I saw Henry lying half asleep on the floor, wrapped in his multicoloured Peruvian blanket. The other patients sat, mostly in silence, on the floor or on chairs in the main room. There was the sound of a television in the background. Henry said he was all right in a weak voice, but DVH struck me in those first moments as one of the most deeply depressing places I had ever been in. The place where patients socialized was a grubby smoking room, the air so full of smoke that it was difficult to breathe, the ashtrays overflowing with cigarette butts. I had been warned that violent patients were sent to DVH and looked around me with some nervousness, but then and later, I found them gentle and friendly or sometimes wholly silent, as if caught up in their own dreams. Next door to the smoking room was an “art room” where patients painted or drew and the place where Jan and I, singly or together, would normally go to talk to Henry.
Jan saw him three times a week, and Alex, despite being in a fragile emotional state himself, selflessly went to the hospital once a week. When I was in England, I could not endure sitting at home in Canterbury, thinking of him alone in that grim building, and I tried to visit him every day. We played chess and Scrabble. I asked him to teach me drawing, and he was full of praise for my awkward scrawls. I went back to Iraq thinking?wrongly, as it turned out?that at least Henry would be safer in DVH than in previous wards, and I was easier in my mind about leaving him behind. When abroad, I called him almost every day on the satellite phone and tried to say cheering things to raise his morale. Cheerfulness did not come easily, since he was in a locked mental hospital ward and I was usually inside a heavily guarded hotel in Baghdad, where there were daily bombings and shooting. Jan often had a more difficult time because Henry could sometimes be hostile to her in a way that he never was to me. He blamed her for sectioning him in 2003, though it was a joint decision, and when he was at his most psychotic, he would refuse to talk to her or would shout at her. With me, he was almost always friendly, and if he was silent at the beginning of my visit, he would start talking more or less cheerfully before the end.
We were not his only visitors. Friends and relatives from Canterbury, London, and even Ireland would go to see Henry, and he was delighted to find he was not forgotten, though he also felt bored and lonely. His mood changed unpredictably, and sometimes he sounded worryingly like a young adolescent or a child and less and less like the intelligent, quick-witted, humorous young man he had once been. We feared that his old personality was disintegrating, as we had heard from doctors could happen to people suffering from schizophrenia, symptoms including incoherence in speech and thought and inability to respond to others. But the news was not always bad. Just as we would be beginning to despair, Henry would surprise us with a flash of humor or an intelligent remark.
Conditions at DVH were particularly bad at the time Henry first went there because two patients had recently killed themselves in their rooms. Drastic measures were introduced to prevent this from happening again by making sure that, so far as was possible, the nursing staff could always observe the patients and know what they were doing. This meant that they were locked out of their bedrooms from nine a.m. until well into the evening. The rule was vigorously enforced all the time Henry was there. On being moved into DVH, he began to take risperidone, an anti-psychotic drug that could be administered via injection, so it was certain that he was receiving his medication. The risperidone was given as a so-called depot injection so it would be ingested by the patient over a period of days. Unfortunately, clozapine could not be given via injection, though the drug was demonstrably more effective than risperidone.In 1 percent of cases when clozapine is given, patients can have an adverse reaction requiring an immediate end to treatment, which cannot be done with a depot injection. As a result, clozapine can be taken only orally, making the likelihood of noncompliance with medication much higher.
Jan and I went to see Henry a week after he had arrived at DVH and found him responding badly to the first injection. He was prone on the floor in the hallway, very woozy and in pain from muscle contractions. He clearly needed to be in bed, but when we asked, we were told he was classified as Observation 2, presumably meaning that he had to be watched by staff all the time and would not be allowed to go to bed until ten p.m. when the night staff arrived. We asked that he be allowed to go into the little garden, which was sealed off by a twelve-foot fence, but were told that the staff did not want to risk him climbing out and escaping. The distrust was mutual. Henry was not talking much to the nurses, whom he blamed for his incarceration. He looked miserable, trapped and restless, but at least he was alive and receiving treatment.
The dilemma facing us was very real. Henry was in DVH to protect him from the consequences of his psychosis. But this solution had a massive downside in that the prolonged confinement made him acutely unhappy, and this in turn exacerbated his psychosis. I sometimes used to wonder if he would not be better off wandering the countryside than being stuck in DVH, but I soon realized that if he did this, he would soon be dead. He could display great ingenuity in not taking his medication and escaping from different closed wards, but he showed little ability to survive on his own once he was free. We knew that medication would not cure Henry, but if he took the cocktail of drugs prescribed, they would keep his psychosis under control and give him a chance of returning to full sanity. His worst breakdowns and brainstorms?which he later nicknamed his “polka-dot days,” though the phrase does not quite convey the terrors which then seemed to possess him?mostly struck him when he was secretly not taking the clozapine.This appeared to be the only drug strong enough to act as a barrier to bouts of madness. Jan and I found in the coming months that the injections ofrisperidone,in which I had originally put great faith, either lost their effectiveness over time or were never strong enough to calm Henry’s mind when his mental turmoil was at its worst. During the two years he was in DVH, he switched between risperidone and clozapine without any long-term positive result. Unfortunately, Henry took a perverse pleasure in avoiding his medication, and while I suspected this, I did not realise how successful he was. The only way to get him to take the clozapine was to sit with him until he did so, which might be a matter of hours. He was able to devote more time to not taking his medication than the doctors and nurses had available to get him to take it. He was friendly to the medical staff and they liked him, but since he did not believe there was anything wrong with him or that he should be confined in a mental hospital, he saw them, at least in part, as prison wardens to be outwitted at every opportunity. I noticed that they had always won his trust rather less than they imagined, and they later felt that he had manipulated their fondness for him by covertly not taking medication, absconding, or occasionally taking cannabis. All the hospitals where Henry spent time fought hard to keep out drugs, but none wholly succeeded.
Overall, the doctors and nurses who treated Henry, and the British National Health Service (NHS), did very well by him. Aside from a few weeks at the Priory, the NHS paid for all his vastly expensive treatment, even when he was in a private hospital. Burdened though Jan and I were with coping with Henry’s psychosis, we did not, like American friends with similar problems, have to worry about insurance companies or what they would or would not pay for. At St. Martin’s, facilities were inadequate when it came to specially designed buildings for the mentally ill, especially the insecure yard, but in DVH, the doctors and most of the nurses were very good. Whatever the failings of the NHS in terms of inadequate resources or poor organization, these problems were offset by the significant number of able and energetic staff who saw it as their vocation to look after mental patients. There were more of these admirable and committed people in DVH than in other wards because the hospital, sensibly enough, had concentrated its best human resources to deal with emergency or very difficult cases.
The two psychiatric consultants looking after Henry were Professor Tony Hale and Dr. Bill Plummer, who wrestled tirelessly to bring Henry’s treatment-resistant schizophrenia under control and were undismayed by repeated setbacks. They said they found Henry “a delightful young man” who was no danger to others but had to be confined to DVH because of “his tendency when psychotic to abscond from the ward, wander around barefoot, swim rivers and otherwise commune with nature, but unfortunately thereby endanger himself from exposure.”
From almost the first moment he was ill, Jan and I had made repeated pleas for Henry to see a psychotherapist on a regular basis. We knew that in general terms, psychotherapy had been downgraded as a treatment in British and American mental hospitals over the previous twenty years and displaced by greater reliance on medication because the utility of such therapy was difficult to prove, and it was both labor-intensive and highly expensive. The discrediting of R. D. Laing’s theories had further undermined the role of psychotherapy. Jan and I felt that the very real benefits of medication had been overstated; while they muted the most dramatic symptoms of schizophrenia, they did not cure the underlying illness. Over the last ten years, this has become a widely accepted view among psychiatrists. Casting around desperately for anything that would help Henry, Jan and I were probably overoptimistic in imagining that anybody could really talk to him until he had been stabilized by medication. Dr. Plummer gently but trenchantly made the point to us that Henry simply was not well enough to benefit from therapy because he was too distracted and tormented by his hallucinations. These abated at times at DVH, but they never disappeared. He was not able to describe the forces at work in his internal world to anybody, however sympathetic. Dr. Plummer said that the only time Henry seemed to be able to think clearly was when he was doing something that required mental and physical action, such as making pottery, painting, or yoga. At such times he could hold an intelligent conversation, while at his worst he had difficulty concentrating or answering a direct question. We had suggested he receive cognitive behavioral therapy (CBT), the effectiveness of which was being increasingly recognized, but this primarily teaches people to live with their schizophrenia, and Henry’s doctors said there was no evidence that it would work with somebody so acutely ill.
By the summer of 2004, Henry was as ill as he had ever been. His brainstorms seemed to come in waves, following a period when his mental clarity had improved. Neither his doctors nor we ever really understood what lay behind these surges in his psychosis.
They often followed or accompanied his escapes from DVH, which he did with great frequency despite all the efforts of the staff to stop him. If a door was left open for a minute or he was given a few moments to scale the fence in the yard, he would immediately take advantage of it. A fire door left open, keys left in the lock, or a few seconds’ inattention by the nurses, and he was gone. By his own count, he ran away from DVH some seventeen times over two years. Jan and I lived in fear of unexpected calls from the hospital telling us that he had disappeared. Yet again we tried to reassure ourselves by recalling that he had survived so far, and if he got into danger, he often sought help at the last moment. The reassurance was less than complete because I was convinced that Henry had survived only because of good luck.
We had moved in 2003 from our small house on Castle Street to a larger and even older house in Canterbury, at the other end of a street from Westgate, a medieval gateway in the city walls with massive twin towers. Sometimes after Henry had run away, he would come to the door late at night. Knowing this, I often sat or dozed on the sofa downstairs, hoping I would hear him knock. Several times he did turn up, and once or twice he left a note. One, which I kept in my wallet for years afterwards, read in Henry’s astonishingly clear handwriting, “hope that you are not worried about me. I am eating and staying well and will stay in touch XXX Henry.” Mostly, there was just a silence lasting days, until the police or the hospital called to say he had been found alive. The Kent police expressed occasional irritation that so much of their time was spent looking for Henry, but usually, they were helpful, efficient, and uncomplaining.
Our hope was that Henry was not out in the fields or woods but had taken refuge with a network of friends in Canterbury, often street people, with whom he was still in contact. Sometimes this was true and his friends had fed him and given him somewhere to sleep, but too often he would be found in the countryside?cold, scratched, and half starved. But keeping him locked up was an almost equally dire alternative. In the winter of 2005?6, he spent six months without being allowed outside, even into DVH’s tiny yard. This meant Henry felt he was getting less fresh air and exercise than if he had been a convicted criminal. Inadequate and insecure buildings do not excuse this. In his last months at DVH in the spring of 2006, the hospital started to rebuild the ward.
One way of satisfying Henry’s understandable urge to get out of DVH was to allow him out accompanied by nurses or with us. But he wanted freedom to do what he wished without hospital or even parental supervision. He wanted to go farther than the grounds of the hospital. Henry says now that he was drawn to run away by the voices of trees and bushes, but what they told him probably reflected his own rebellious spirit and hatred for being confined. Even with a nurse on either side of him, he would suddenly take off; he disappeared so frequently that the staff at DVH refused to accompany him. Several said they could not take the responsibility or sleep at night because of worry that he would get away from them and later die in the woods or rivers around Canterbury. We thought that if he had regular visits home, he would be less likely to take off on his own. Once when Jan came to DVH to pick him up, he accompanied her through the door, made for some bushes, and stood there for two or three minutes. Jan suspected he was listening to the trees telling him what to do, because he then said, “See you later, Mum,” and disappeared into Canterbury, where he was spotted by the police the same night and brought back to the hospital. Very occasionally, he would show that he retained some instinct for survival, on one occasion phoning Jan because he was having a brainstorm and had taken off his shirt outside a pub. Such moments of self-awareness were encouraging but were counterbalanced by times when he consciously or unconsciously courted danger or death.
Henry showed a dogged and touching determination to prove that he was not ill and his experience of voices and visions was real. He was entitled legally to appeal against his sectioning before a mental health review tribunal, established to prevent people from being unfairly incarcerated or persecuted. There was never any doubt what the tribunal would decide, but Jan and I came to fear these appeals, which took place every six months, because Henry was so angry and depressed after he was turned down. He himself was wholly truthful in his evidence, even when it was not in his own interest to be so frank. For instance, the proceedings of the tribunal held on September 29, 2004, record that “in giving evidence Mr Cockburn told the Tribunal that he has heard voices the previous day, the voices come from trees.” Henry knew that it would be wise to keep quiet about talking trees if he wanted to persuade the tribunal to release him, but he was determined to assert the reality of his visions and voices. The tribunal members heard how he had been walking backwards, had run away three times that month, and had no insight into his illness. When his sectioning was renewed, Henry would scratch his arms, bang his head against the wall, go barefoot, refuse to wear underclothes, and then, just as we were despairing, he would rally and become calmer and more rational. When he was at his best, he produced many paintings, and some of these were exhibited at a shop in Canterbury. This was encouraging, though at first Henry had grandiose and unrealistic plans to sell them for four hundred pounds each.
We became all too familiar with these alarming mood swings, and it was clear that, after eighteen months in DVH, Henry was not getting better. On one occasion when Jan visited him at the end of 2005, she was shocked at the deterioration in his condition. He was twitching, dancing, talking gibberish, barely seemed to recognize her, and when he did so, he angrily shouted about her “getting into his head.”
Jan and I tried to think of ways by which we could break the vicious circle of partial recovery and acute relapse. By the end of 2005, we estimated that Henry had been through this cycle five times since his first breakdown, getting worse each time. The pattern was for a serious psychotic episode to be followed by slow improvement under medication over four or five months, during which we saw a gradual resurgence of concentration and creativity. And then, just at the point when his return to some sort of normal life under super-vision seemed feasible, he would relapse into acute illness. We were never wholly sure what caused these relapses. It could not have been solely that he was secretly not taking his medication, because sometimes a relapse happened when he was receiving it by injection. We suspected that one cause might be that as his mind stabilized, he could see all the more clearly the misery of his own situation, his life passing him by while he was effectively imprisoned. His school friends and fellow students fell in love, had girlfriends and boyfriends, got married, and had children, while he sat on his blanket on the squalid floor of a mental hospital. The mental health tribunal had judged that one symptom of Henry’s mental disorder was that he did not show insight into his illness. But its members may not have appreciated that for him, acquiring such insight was likely to be agonizingly painful. He would then see himself as living in a world that thought him mad and in which he had no prospect of happiness. No wonder he found this knowledge so unbearable that he retreated into daydreams and fantasy.
Eventually, our desire that Henry receive psychotherapy was met towards the end of 2005, though this happened only about once a month. He was seeing an excellent consultant family psychotherapist, Dr. John Hills, an intelligent, realistic, and sympathetic man. Henry was probably too ill for the psychotherapy to be of much use, but Dr. Hills convened meetings of all involved with Henry, mostly doctors and nurses from DVH but also his social worker, occupational therapist, and Jan and me. The aim was to develop a realistic strategy for helping him. A summary of the positive and negative aspects of his condition recognized that he was very psychotic, confused, and unable to think coherently at almost any level. On the positive side, these meetings found that he was a very engaging, courteous, gentle person whose sensitivities made him more respectful than rebellious. They thought he had a mind of high creativity and resourcefulness that, when not crossing the line into psychosis, was sharp, adroit, and original. The only part of this description of Henry’s character that I doubted was the belief that he was not rebellious. On the contrary, I thought his politeness concealed a bitter sense of grievance about his incarceration, which he saw as unfair and unnecessary.
It was becoming clear by the final months of 2005 that keeping Henry pent up in DVH was creating almost as many dangers for him as it was protecting him from. He was there to keep him safe and to receive treatment, but, since he frequently ran away and spat out the most effective medication, this was not working. In addition, we did not realize at the time how much cannabis Henry was taking both inside and outside DVH. Attempts by hospital staff to isolate him only made it more likely that he would retreat into psychosis. Jan and I felt a growing sense of anger and frustration. It was decided by doctors, hospital staff, and Jan and I that Henry should be allowed out on his own with a mobile phone and under a pledge to return at a stated time. This worked, but only to a degree. I would meet Henry in town, and we would walk around Canterbury as we had once done in Brighton, often with Henry going a little faster than I could walk. I trailed behind him, frequently telling him to slow down. Being allowed out on his own made Henry a little happier, but it was nerve-racking for everybody else. Once when he was late back, a nurse rang him up, and he said he was walking along the railway tracks near a village south of Canterbury. She persuaded him to return. In another heartrending episode in early 2006, Elisa, the girl to whom he had a romantic attachment four years earlier in Brighton, came to see him at DVH. Henry had said he wanted to see her again, and Jan had located her. But when she came, Henry had gone into town to buy her a ring and had a breakdown. By the time he got back to DVH, she had gone back to London and never returned.
Letting Henry walk about by himself in Canterbury made him happier but did not do anything to reduce his underlying psychosis. By the fall of 2005, the doctors at DVH were saying they were making little progress in treating him, and they suggested he go to the National Psychosis Unit (NPU) in south London. This was said to have the best facilities in Britain for treating people with mental disorders. Because Jan and I were near despair about Henry’s future, we probably had exaggerated expectations of what the NPU could achieve, but our hopes were not unreasonable, and we were not asking for very much. We knew that the NPU, in the Bethlem Royal Hospital in Beckenham, had far more resources than DVH. Henry’s living conditions would improve, more therapy would be available, and there would be specialized staff with time to make sure that he took the medication?clozapine?that did him the most good. We had heard the head of the NPU, Zerrin Atakan, praised as one of the best psychiatrists in Britain.
The failings of DVH were very evident though not the fault of the staff. Among other things, Henry was the only long-stay patient who was there for his own protection and not to protect others. I always found the other patients either friendly and shy or friendly and garrulous, but they were not always so. One night a frightened Henry rang up to say he had been attacked and punched. His doctors agreed that DVH was not the place for him. He said he would like to go to the Bethlem Royal, though not with great enthusiasm, since he still did not think he should be in any mental hospital. We had looked at some other clinics and halfway houses where psychotherapy played a larger role in treatment, but concluded that these were suitable only for those who were less ill than our son. Institutions which believed strongly in therapeutic help were not those that would keep him safe behind locked doors and insist that he take his medication.
Getting Henry into Bethlem Royal turned out to be as difficult as entering him into an elite school. He had to be assessed by psychiatrists from the NPU, and they normally suggested changes in treatment before a patient was admitted. Finally, the NPU agreed in general terms to take Henry, and we expected a carefully organised transition period. Instead?rather bizarrely, given his delicate mental state?he was transferred there with only a few hours’ notice in May 2006. Jan was all in favor of Henry being moved but had forebodings that the move was all too swift, disorienting for him, and he would feel more isolated away from Canterbury, where, even at his most psychotic, he had a circle of friends. He himself had doubts at the last minute. When Jan came to see him at the Bethlem Royal on the evening of the day he arrived there, he confided, “I shouldn’t have come here. The trees were angry with me when I left.”
Excerpted from HENRY’S DEMONS