The extraordinary story of Dr Rufus May
Published: Independent, 18 March 2007
At the age of 18, Rufus May was diagnosed as an incurable schizophrenic and locked up in a psychiatric hospital. Now, he is a respected psychologist and a passionate campaigner on mental health issues. He is also the guest editor of this special issue. Here, he tells his extraordinary tale
When I was aged 18, I witnessed first hand how society’s approach to mental health wasn’t working. I was admitted to Hackney hospital – a psychiatric hospital – and told that I could not leave. On the verge of adulthood, and feeling lost after my girlfriend had left me, I had invested in a spiritual search for guidance. The messages I picked up from the Bible convinced me I had a mission. Seeking to discover what my mission was, I slowly deduced that I was quite possibly an apprentice spy for the British secret service. I was eventually admitted to hospital when I became convinced that I had a gadget in my chest that was being used to control my actions.
Psychiatric hospital was like another world entirely. Queues for the medication trolley punctuated the boredom and general sense of hopelessness. Any resistance to the regime was quashed by forcible restraints and powerful injections. Many friends felt too scared to visit me.
That experience coupled with being given a diagnosis of schizophrenia made me feel like a social outcast. When my parents were told my condition was probably genetically inherited, the die seemed irrevocably cast. Ward rounds felt like elaborate religious rituals conducted by the consultant psychiatrist, with an audience of medical students and student nurses observing, while my insanity was confirmed and long-term drug treatment prophesied. I found the medication made me feel empty and soulless; I could not think past considering my basic needs. The drugs made me physically weaker and affected my hormones so I became impotent.
I was concerned about this. However, to the outside world, because of the mind-numbing effects of the drugs, I was less focussed on my spy and spiritual beliefs. The doctors pronounced that I was responding well to the medication. I was determined to stop taking the tablets and injections as soon as I could find other ways of staying calm and centred.
The majority of fellow patients were revolving-door patients. I myself was told I’d be back. It was true: I was readmitted twice before I managed to escape the role of mentally ill regular customer. But I was luckier than most: as well as my parents visiting me daily, a close friend came back from selling pots and pans to US servicemen in Germany and began visiting me daily too. I started to pick up on her belief that this breakdown, or whatever it was I was having, was something I could get over.
When I was 12 years old, I had witnessed my mother make a strong recovery from a disabling brain haemorrhage, so instinctively I knew that I could turn my life around with the right support. So I decided not to believe in the doctor’s wisdom and planned to get a job as soon as I left hospital. While I was still in hospital, I started going to churches and community centres offering to do voluntary work. Although I must have seemed a bit odd, I found many kind people who were willing to give me tasks to do and slowly I started to rebuild some social skills.
When a friend and fellow patient, Celine, took her own life after being heavily over-medicated, it became a turning point for me. It was a Caribbean funeral and hundreds of people turned up for it. It contrasted strongly with the absence of support she had had when she had been alive and hearing abusive voices from her past.
I realised then that I had found a cause that needed no delusions to support it. Like Celine, I had gone through the strange process of being talked to as if I was not there, of professionals trying to suppress my odd and disturbing behaviour with drugs without trying to understand why I was acting as I was. No one seemed willing to think what was it like to walk in my shoes.
We, as a society, were making people madder and maybe I could do something about changing that. What if I could make a different kind of come-back to the psychiatric ward, as a mental health professional? Then perhaps, in Trojan horse style, I could help dismantle the myths of the psychiatric hierarchy. The more I thought about this, the more I realised I would have to keep my former identity as a psychiatric patient strictly under-cover.
When a junior psychologist informally questioned my diagnosis of schizophrenia, suggesting I had had a temporary psychotic episode instead, it made me think maybe psychology was a way of doing things differently. So my mission was becoming clearer: I would train as a psychologist. I knew I needed to sort myself out to some extent before attempting this journey.
My first job, straight out of psychiatric hospital, was working as a night security guard in north London’s Highgate Cemetery. I now think that patrolling the heavily wooded grounds in the dark was a deeply therapeutic activity. With no time to daydream, I had to stay aware and face my fears of the dark and the unknown. I also think just walking in close proximity to nature was a very healing process.
It was during this time that I successfully came off my psychiatric medication, against doctors’ advice. I then spent several years doing a range of jobs and learning creative ways to express myself, using dance and drama. I shifted my focus from thinking about myself to trying to help others, while making sure I looked after my mind and body. I used the outdoor gym on Parliament Hill, sport and breathing exercises as natural ways to manage my moods. I was careful to avoid unreliable or abusive friends and stick with people who had stuck by me. Studying sociology helped me understand the wider structures of society, demystifying such things as the class system and power relations between men and women.
I was reminded of the prejudice against the subject of mental illness when a right-on community centre refused to support me and a group of amateur drama students putting on a play about a nervous breakdown. Nevertheless, from drama classes I learnt the art of re-inventing oneself through improvisation. I will always remember how one of my drama teachers impressed upon us all the message that “this life is not a rehearsal”. My confidence in acting was to become useful over the next 10 years of carework and psychology training, where I chose to keep quiet about my previous role as a psychiatric patient, to avoid the possibility of discrimination.
For me, the dividing line between the mentally ill and the sane was more a question of social boundaries than actuality. I had found some very mad people in hospital very helpful and some of the so-called “well” nurses quite bullying and hostile, it suggested to me that to some extent madness was in eyes of the beholder. I also knew that my own madness had been meaningful; for example, my fantasies about being a spy had given my life meaning and my search for a spying mission was a metaphoric search for a meaningful quest in my life.
My training as a psychologist in the early 1990s, coincided with a time when psychology as a profession was beginning to interest itself in trying to understand and work with madness, an area which was usually associated with the more medical, drug-prescribing profession of psychiatry. For the past 10 years I have been working as a psychologist covering a broad range of mental-health problems. I know that to really help someone who is deeply suffering or confused, we need to be very creative and offer a wide range of resources.
In Bradford we have self-help groups where people are encouraged to help others as well as themselves. We also create spaces where for example art, spirituality and physical relaxation can be explored in a number of different ways. We have Tai Chi classes, dance classes and African art classes, as well as political and cultural discussion groups. If people hear troubling voices, I want to understand these beings that haunt them. I will sometimes communicate directly with the voices and try to facilitate a peace process between the voices and the person hearing them.
I must be living proof that people can resist so-called command hallucinations, because initially many voices feel threatened by me and tell the voice hearer to attack me. I am still unscathed, which is a strong testimony to the fact that people who hear voices can learn to resist the most bullying and aggressive of them. So instead of encouraging people to suppress their experiences, which I think generally makes them worse, I try to assist people to face their demons in their own time.
Is society any madder than 20 years ago when I was in hospital? It seems to me that some things are getting worse and some things are getting better. People are getting bolder in talking about their experiences of distress and madness. This is refreshing; the status quo, in which well-meaning professionals and charity heads are the only experts, is starting to be challenged. Britain is a leading light in this consciousness raising, where people are coming out more and more about their experiences of emotional distress. Consequently, a broader range of ideas and approaches to what helps us heal troubled minds is being listened to.
At the same time, the might of the pharmaceutical industry is stronger than ever before; drug companies are ruthlessly promoting the simplistic and misleading “chemical imbalance” theory of mental distress, while marketing our discontent as diagnosable medical illnesses. In the US, they have been very successful, with roughly 10 per cent of women taking anti-depressants and an astonishing 10 per cent of children being treated for ADHD with the amphetamine derivative Ritalin. Each year in this country, prescription rates rise for psychiatric medication.
While I am not against all use of mind-altering drugs, this trend is worrying. I think that when drugs appear to work, the main effect is that of masking a patient’s problems, but as soon as you remove them the problems bounce back, often with a little more oomph due to the fact they have been artificially suppressed. You also need more and more of the drug to achieve the same effect, because our brains build up a resistance to all mood-altering substances. We are then likely to experience the more negative effects of the medication and develop a dependence.
So drugs are limited in their usefulness and are perhaps best used as a last resort and for short periods of time. This is not going to be popular in the board rooms of Big Pharma, the Big Brother of mental health. But if we are going to make progress in our quest for healthier communities, we are going to have to limit the pharmaceutical industry’s influence on how we understand our minds and approach the recovery process.