John McCarthy, who died this week at the age of just 61, as a result of motor neuron disease, brought the issue info focus for me many times in recent years. It was about five years ago when he first got in touch with a producer on The Last Word and persuaded my colleague that he would be a guest worth having on the programme. I was told that a self-declared madman wanted to come on the programme, to talk about his experiences, how they should be applied to others and how people with mental health issues should be treated by others in society.
As it happened I was interested, if only because I had grown up on the Lee Road in Cork, in the shadow of the since long closed Our Lady’s Hospital, a psychiatric institution that as good as incarcerated many of its patients. Some, however, were given “day release” and would wander along the road daily. Some were in a near comatose state, clearly drugged before release, or possibly worse as a result of electro-convulsive treatments (ECT). Others were hyper-active, talking gibberish. Sometimes, unfortunately and very sadly, there were occasions when patients took themselves down to the riverbank and threw themselves into the river; with other people rarely present to rescue them they didn’t survive.
I thought I recognised John McCarthy when he first arrived into our Dublin studio, not from the Lee Road, but from around the streets of Cork city. His appearance was distinctive. He had long grey hair, tied in a pony-tail. He bounced into the room. He was full of chat and passionate delivery. He described himself as mad. This was nothing to be ashamed of — he was proud of what he was. Hence the “Mad Pride” organisation he founded. McCarthy wanted to embrace life, not wallow in the misery and despair of it.
He told me his story on air a number of times, although he preferred to emphasise the positives, the way he had come to regard his health as something to be celebrated rather than endured. I had to press him on how he had come to be regarded as mad (and two of the interviews that I conducted with him in the last year are available on the todayfm website and as podcasts that can be downloaded). His story was that he had lost his good mental health during his late 30s and early 40s when financial problems arising from his business undermined him, almost costing him his family’s home and his business. It was the loss of self-confidence that dragged him into depression and sucked the life out of him. “I lost control of my emotional self,” he explained to me. “Life got too much for me and I broke down.”
He told me of the feelings of isolation and of loneliness, how he couldn’t face challenges and suffered panic attacks, even when it came to relatively mundane family issues. “I absolutely totally collapsed,” he said. As far as he was concerned his depression was caused by anger, but he became very aggressive with it as he failed to cope with his situation. He lost his self-respect and was unwilling to accept the love his family offered or to listen to them. He was abusive and disrespectful, he said. “You can’t accept love because you don’t have a proper love for myself,” he told me. “I never had self-respect. I worried about how others thought of me. I worried about the opinion of others.”
In another interview, the last I had with him, late last year, when he came into studio in his wheelchair, pushed by his son, to discuss his last campaign — to understand and combat loneliness — he remembered how when he was at his loneliest as a 19 year old in London, “going to my room after a day on the building sites and being on my own when surrounded by 8 million people”. John’s points about the cause of his breakdown were interesting because he regarded his mental health as being a response to the life situations that he found himself in, rather than as the result of some kind of chemical imbalance in his brain. “Madness is a disease of the spirit, mind and soul (not of the brain). It cannot be cured with a pill,” he said.
And that was central to the campaign he waged in later years against the medicated response into which he felt he was forced, wrongly. He had nearly a decade on heavy medication that he felt made things even worse for him during that period. He claimed to have been “over-medicated, over-drugged to an enormous extent”. As far as he was concerned it was all about making him “compliant”, which he said was equated with being “cured”. He told me how “I shuffled when I walked...you don’t wash or clean, you lose dignity. Your hands slump by your side...” He spoke of being left in a zombie state. As he described it the people of my childhood, as they walked up and down the Lee Road, came very much back to mind.
He took himself off the drugs and suffered nine months of withdrawal. “These drugs are more addictive than heroin.”
John decided that he would face what he calls “the challenge of life“, that he would embrace “the gift of madness”. He decided that he was living through depression, not suffering from it. He decided to reconcile himself with the “normality” of his madness. “You have to be mad to live life because madness is about emotion,” he said. Most importantly, he came to disregard his need to seek the approval of others.
This led to an interesting situation. It put him into conflict with the medical profession, yet members of it were supportive of elements of what he tried to do, especially in trying to change the language used in public discourse about the condition. Once John took me to task for saying that he “suffered” from depression: he was living with it he said and I needed to change my language. Professor Harry Kennedy of the Central Mental Hospital praised John very much for his positive approach to challenging prejudice and stigma but they did disagree about the circumstances of the use of medication and the benefits it brought.
This was something that I failed to tease out properly with John despite repeated attempts, the difference between what he saw as madness caused by depression about life and that which may be caused by chemical imbalances or illness, which he tended to dismiss. There would be seem to be plenty of evidence to suggest that some people do suffer because of issues beyond their control and that they can be a physical danger to themselves and to others: embracing the positives of life may not be a cure for them. Just because John always expressed his point of view passionately and with conviction does not mean he was always right, just as times when he bucked convention seemed to be correct.
In the end John succumbed to a cruel illness. He embraced whatever medical help was available to him for that but nothing could be done once motor neuron disease embraced him. The last time John and I spoke he told me that death was coming at him “at a rate of knots.” I asked him how he was coping with that knowledge. “In death I’ll miss life, I love life,” he said, choking somewhat as he said. While that comment filled me with sadness it was also inspirational. A man who went through so much of the difficult part of life could still love it and value it, as should we all.