To Florence yesterday, to speak to the Schizophrenia International Research Society – go on, how many of you knew there was one. Well, there is, and I was very pleased to speak to them with my mental health campaigner hat on, but mainly to talk about my brother Donald, who died in August 2016 after a lifetime coping with this horrible illness. Here is the text of the speech. Forgive the Brexit dig at the beginning. I promise it is the only mention (though it did get one of the loudest rounds of applause from the audience, drawn from 54 countries around the world).
Thanks for asking me to speak to you, here in one of the world’s most beautiful cities, inside the political and economic success story that is the European Union, which my fellow countrymen have voted to leave, a decision our government is determined to implement whatever the damage. I am in general opposed to mixing the language of mental illness and politics, but I do think Brexit shows that sometimes countries as well as people take leave of their senses, and indulge in dangerous self-harm.
Fear not, I am here not to deliver a political rant, but to express support for the Schizophrenia International Research Society, and urge you to keep working hard to improve the diagnosis, care and treatments for all who have what my brother Donald, who you saw in that brief film, called ‘this shitty illness.’
I talk a lot about mental health; mainly from the perspective of changing the way we think about mental illness, the need to eradicate discrimination, to end inequality of access, which means in the UK for example, only fifteen percent of those who would benefit from talking therapy get it; to deliver on the maximum waiting times which often exist in theory but just as often are not met; to make the words ‘parity between physical and mental health’ actually mean something; to stop mentally ill kids being locked up in police cells, to accept that prisons the world over are filled with people who should be in hospital not jail; to ask ourselves why mental illness is something of a research desert compared with physical illness; to urge governments to invest more in mental health today as a way of saving money tomorrow; to stop them using the anti-stigma campaigns as a way of avoiding rather than increasing the provision of services — so … quite enough to be going on with, for the Time to Change campaign of which I am ambassador.
I talk too from a personal perspective, my own issues of depression, drink and psychosis; and especially the life and death of my big brother Donald.
I hope you feel that in the 13 years since SIRS was founded, you have made real progress. Bringing together scientists from around the world to exchange the latest advances in research in schizophrenia is a good idea whose time had clearly come. I’m sure many of us wish it had come sooner, for in a globalised world surely it is only through the international collaboration you foster that we might discover the causes of, and better treatments for, schizophrenia and related disorders.
Looking at SIRS’ seven goals, I hope I can be of some help, at least on some of them … to take them one by one:
- Encourage the publication of research. I encourage you all to publish research.
- Support increased research funding for schizophrenia research around the world. I support you in this and will campaign for it.
- Facilitate international communication and collaboration in research. Well, I can do international communication for you, if not the research.
- Promote educational programmes to disseminate new research findings related to schizophrenia, both in the scientific community and the lay public. I can probably help a bit with that.
- Where I might be of little use is with these two – Exchange the latest advances in research and facilitate the application of these findings to clinical practice. And
- Promote the highest scientific and ethical standards in research and its application in clinical psychiatric practice
- But where I can be of most help, and I assume the reason I have been invited, is this one, Increase the public understanding of the personal, familial, and societal impact of schizophrenia.
So, my schizophrenia story. Well, the story is mine, but the schizophrenia was Donald’s. He would happily have told you his story himself, for he was very proud of the life he led, given the seriousness of the condition. Sadly, he can’t, as he is dead. So I will tell his story instead.
Born 1954. Didn’t do very well at school. The only one of four children in the family who didn’t go to university. He never made much money. He had a wife, but only briefly.
But to me, whatever successes I and other family members have had, Donald was the real star of Clan Campbell. Because his achievements were all made in defiance of the shitty illness.
A top musician, turning his lifelong love of bagpipes, which our father taught us to play as children, into a career, first in the Scots Guards, then as a performer, competitor, composer, teacher and as the official piper to the Principal of Glasgow University.
The University knew about his issues. They knew he might go haywire from time to time. Might cause the odd incident at work. Might need periods in hospital. But they did not define him by his illness. He was not, to them, a ‘schizophrenic.’ He was an employee who had schizophrenia. He worked there for 27 years.
That portrait you saw being unveiled in that brief introduction, which was commissioned by me and paid for by his nieces and nephews, stands alongside paintings of great academics and university leaders. He would like that. He liked ritual and status. He would like the fact we are talking about him here today. He didn’t mind being talked about, when it was real. It was when he wasn’t being talked about but thought he was, that was when things got tricky.
There are many academic institutions represented among the 1,800 people here, major employers among you. I believe employers are every bit as important as governments in tearing down the walls of stigma and taboo inside which mental illness has been trapped for so long.
Glasgow University was a model employer for someone with severe mental illness, while Donald’s role as piper, playing at dinners, ceremonies and graduations for tens of thousands of students, gave him a real sense of purpose. He had many friends, and if all the members of our large, extended family had a vote on favourite relative, Donald would have come top. That is an achievement too.
Born 1954. Died 2016. He was 62. Our father, also called Donald, had died some years earlier. 82. That 20-year differential is, I’m sure, something many of you are familiar with. It is also why the work you do is so important.
Our Prime Minister, Theresa May, has diabetes, for which she takes medication regularly to be able to live with her condition. I have asthma, and my inhalers help me deal with it. Imagine the outcry there would be if the medication for diabetics or asthmatics took two decades from their life span. I am not saying with certainty that the drugs killed Donald. I am saying that throughout his life, we were fairly sure he would be the first to go. Four decades on anti-psychotics takes its toll, so the gaps between the colds and flu and chest infections got shorter and the quantity of ‘normal’ drugs required to treat them got larger.
Added to which a change of his main medication for the schizophrenia – necessary to deal with the physical illness and weight increase – seemed to have crossed his wires mentally. In the end something had to give. His life. In the last few months his physical health deteriorated – years of smoking didn’t help – and as his breathing worsened he had to give up both his job and the pipes. The decline was pretty fast.
It is a source of real sadness that our last conversations were with the psychotic Donald, not the loving, giving, funny Donald who brought so much to our lives by making so much of his own.
I am not criticising those who manufacture the drugs, or those who prescribe them. Treatment – in Donald’s case, medication – can often help restore someone to the person they are supposed to be, unclouded by the illness. Medication helped give him long periods free of the voices in his head and the hallucinations before his eyes that could otherwise reduce him to a sometimes terrified and other times aggressive human being. So if the illness in many ways destroyed his quality of life, the drugs improved it. But the side effects were far from pretty, and I do think it is part of the global cultural bias against mental health that the cure for the illness can play a major role in the shortening of the patient’s life.
For just as mental health struggles for funding for services, amid all the other pressures on healthcare systems, so this Cinderella status that has bedevilled us for centuries, all part of the effects of stigma and taboo, affects research too.
When we think of medical research, we think cancer. We think AIDS. We do think diabetes. We do think asthma. I don’t minimise any of those illnesses. Indeed, though I am happy to be here, I am also sad because it has meant missing the funeral of a friend, Kath Ternent, a wonderful woman taken from us too young, proof that so much more needs to be done on cancer research too.
But cancer doesn’t face the same research and resource challenges as mental health. Also, asthma, look, here is my old inhaler. Here is my new one. Innovation through research. And my asthma much improved.
On the mental health front, the anti-depressants I take every morning for depression have not advanced much since the Prozac family, Fluoxetine having been discovered in 1972, and entered widespread medical use in 1986; and likewise Donald’s treatment varied between depot injections and clozapine, which was first made in 1958, when I was still in nappies, and sold commercially in 1972, around the time Donald joined the Army.
Research and treatment of those other illnesses have advanced hugely. And we should take hope from that. Because, cancer and AIDS, they too have had to combat stigma and ignorance. Remember the ‘gay plague?’ That was pretty stigmatising. It took a lot of campaigning to change attitudes which in turn led to a proper response from governments. As for cancer, that had its taboo era too, didn’t it? Remember when we called it ‘The Big C.’ I remember when I was about seven or eight, our Mother telling us our next door neighbour had cancer. ‘You mustn’t tell anyone,’ she said. That taboo has gone, and that has helped cancer research, helped charities, helped win the funding and the expertise to work for better treatments and preventions, and woe betide any government that puts cancer services under threat. Mental health on the other hand? Easy target, and amid the post-global financial crisis austerity many of our countries have seen, one all too easily aimed at when looking to trim budgets.
As for the educational side of your work, I wish I had been educated about schizophrenia back when Donald was diagnosed, a serving soldier, in his early 20s. Even though our father was a vet, and so in the medico-scientific world, we knew very little about the illness. Just as mental health trails physical health in medicational advance, the same can be said of education and awareness. A psychiatrist friend tells me that when he diagnoses a patient with schizophrenia, today, 2018, one of the hardest parts of his job is telling relatives, whose knowledge of mental illness is often based on ‘psycho killer’ tabloid headlines and One Flew Over The Cuckoo’s Nest, which came out in 1975, around the time Donald was taken ill. That it remains so defining suggests not just that it was a great film, but that however much progress we have made, it is not enough.
My friend says sometimes he has to spend the first meeting with families explaining what schizophrenia isn’t, before getting to what it is. Split personality. Jekyll and Hyde. No, don’t worry, he finds himself saying, it doesn’t mean he will become a murderer and go to prison … In fact, if he was telling them the whole truth, he might explain, as we know, that people with serious mental health conditions are far likelier to be victims than perpetrators of violence.
We all have moments, don’t we, that even as we live them, we know, they will define our lives. I knew that moment, when my Dad and I walked into the military hospital and saw Donald lying there, scared, paranoid, scribbling odd drawings on the wall, and telling us what Jesus had said when they chatted earlier, that moment was one of them. We just stood there, shocked to the core.
It was a tough place. That is no criticism of the doctors and nurses. They were operating at a time when servicemen and women who wanted to leave service early had to ‘buy their way out’ and so, I think there was a suspicion some were feigning mental illness as a way of getting out free. It was also a time when ECT was a favoured form of treatment and Donald had his fair share of that. I am aware of the potential benefits, but not least because of the context, he found it terrifying.
My mother often said that her life changed the second she got the phone call saying he was diagnosed with schizophrenia, and it never changed back again.
So for the patient, a shitty illness. For the family, a shitty illness. In some ways, the shittiest illness there is. No crutches. No bandages. No scars. No sudden baldness to signal what is going on. All in the mind. People who have it often pariahs, shunned in the workplace, derided and abused on the streets.
I have had one episode of psychosis in my life, aged 28. As the voices and music started in my head, yes bagpipes, but also brass bands and orchestras, as I imagined everyone walking by to be talking about me, I thought, shit, this is running in the family. I’m getting the shitty illness, just like Donald.
As the mind’s workings become separated from the reality around you, it can be terrifying. That cacophony of voices in your head, screaming, telling you to do things you normally know you shouldn’t. On TV, everyone talking about you. Road signs talking to you. Every word in a newspaper a coded message. For me, it was one episode, a fleeting though important moment in my life. For Donald, it was his life. He coped well enough for long periods, sometimes felt fine enough to take himself off the medication and became ill again, other times just fell ill even while on it. And with the side effects. The tiredness. The inability to get up. The drooling. The staring eyes. The weight gain.
My daughter Grace had begun to record interviews with Donald about the ups and downs in his life. So he would sit and tell her about the time he was in a waiting room, and the wall-plugs were talking to the lights about him while he was surrounded by people who were all discussing terrible things they were about to do to him. Then he would laugh and say ‘absolutely mad innit Grace? And look at me sitting here now. Normal or what?’ Here is a brief film of Donald in his own words…
So imagine the strength of character it takes to deal with that in a way that had so many people love him so much, not out of sympathy – he didn’t want sympathy – but out of an appreciation of the real him, unclouded by illness. That is an achievement of epic proportions.
After he died my sister Liz and I drew a little map of the UK, and tried to remember all the different places he had been hospitalised. There were plenty of them.
He never once complained; he had only good things to say of the Army, even though they had invalided him out. I never once heard him say ‘why me?’, or ‘it’s not fair.’ I said that, plenty of times. He didn’t.
His death makes me all the more determined to fight for better funding, services, treatments and understanding for mental illness. We all have physical health, some days good, some days bad. We all have mental health, some days good, some days bad. And some people have it really, really bad. Though Donald had a good life, and a lot of happiness, I do put schizophrenia at the ‘really bad’ end of the scale, which is why we need really good minds like yours to work on it.
For many years I didn’t talk publicly about Donald’s illness mainly because our Mum didn’t want me to. Not out of shame and stigma. She was proud of him. It was more that, not enjoying having one son in the media spotlight, she worried that if Donald’s head was above the parapet, it could have made him even more vulnerable.
Donald on the other hand was totally up for it. Like a lot of mentally ill people, when he was well he thought he ought to be famous. And when he was ill be thought he already was. In his prime, he saw Sean Connery as a suitable actor to play him in the movie of his life, though as 007 aged, he wondered if George Clooney could do a Scottish accent.
Our Mum having died four years ago, Donald and I were talking about making a film together – centred on him – on living with schizophrenia, and calling it The Happy Schizophrenic. That’s why Grace had started to record these interviews.
Donald was clever but not well educated (the reverse of a lot of people I know in politics). I have no idea when his mind first started to go wrong, but I do know he was the one who found schoolwork hardest. I’ve often wondered whether those times when he just couldn’t seem to get himself out of bed, which my parents saw as signs of teenage rebellion, were the first indications of illness, I don’t know.
The one thing he could always get motivated for, always, was his music….
Liz was the last person to visit him, shortly before the respiratory collapse which led to his death. He had become unusually violent as the voices became more and more unmanageable. He was refusing to take medication or even oxygen and was having to be restrained regularly. When he had been stabilised somewhat Liz took in some photos and also some of his own CDs. And though he had forgotten a lot about himself and the people in the photos, and was back to talking nonsense, when she turned on the CD of him playing, Donald’s eyes lit up and his fingers started to play along with the tunes on the bed rail.
He lost his mind from time to time. All too young, he lost his life. But right to the end of it, he never lost the music in his soul. And though the Donald who died was the sick Donald, the workings of his mind divorced from people and events around him, in there somewhere was the real Donald.
At his funeral, our nephew Jamie sang a song he had written, inspired by Donald, called MY MIND. I will read you the lyrics.
I’ve been in that place
Where the stars are all blue
When it rains all day
Though you don’t want it to
Nothing bright to see
No horizon to find
All alone in this world
A world that’s borne of my mind
My mind has taken over
Taken over my life
The voices so loud
Drown out all other sounds
My mind a beating drum,
Tells me evil’s ways have won
The crowds, they laugh at me
Codes in words are all I see
Can’t share a joke, a laugh, a smile
While the world is in denial
My mind has taken over
Taken over my life
So listen to me now
I’m a person, not a clown
This life is not a game
It’s a fight I choose each day
So pick me up when I am down
Dare to turn my world around
Fight the demons here with me
I could use the company
My mind has taken over
But my life, it isn’t over
Hello world, give me a shoulder
That I can cling to
One line in there best sums up Donald’s attitude to his illness. ‘My mind has taken over … but my life it isn’t over.’
One of his psychiatrists wrote this to me … ‘Donald is my star patient. Holds down his job. Owns his own flat. Drives himself around. Has a passion for his music. Has more friends than any of us. Has a positive attitude.’
That last bit was certainly true. ‘It is what it is, Ali,’ he used to say. ‘I got given a bit of a crap deal, but you’ve got to make the best of it, know what I mean?’
The staff on the Ward where he died – the violent, snarling Donald is the only Donald they ever knew. They were a new addition to his NHS map. But do you know what? When we went to collect his belongings the nurses sought us out, not just to offer condolences, but to tell us how much they liked him. And Donald having listened to his piping CDs in there – loudly – other patients had said they would never hear the bagpipes again without the hair standing on their necks and thinking of Donald. They knew that beneath the crazy stuff of the voices and the visions, was a great guy. The fact nurses could see it even as they had to restrain him, three staff members in his room round the clock, underlined that.
When we went to see the body, Liz stroked his hair and she said ‘you taught us more than anyone, Don.’ He did. Resilience. Fortitude. Courage. Kindness. Not letting even a horrible illness destroy zest for life and love of people. Thinking of others more than yourself, even when life is tough. And as he lay there, bruised, a bit discoloured, I felt as sad as I have ever felt in my life that his eyes would never open again, we would never again see our children in hysterics at his observations of other people; that I’d never see ‘Donald Mobile’ come up on my phone and I answer and say ‘Donald, you phoned me an hour ago. Why are you phoning me again?’ and he says ‘I just wanted to see how your hour’s been? You OK yeah?’ Sometimes his phoning drove me crazy. What I would give for it now.
But as he lay there, I also thought at least he never has to hear those wretched voices in his head again. He really was at peace.
‘My mind has taken over … but my life it isn’t over.’ It is now. But he continues to be a huge part of mine. He continues to inspire me to work harder in the fight for better understanding, services, better drugs, for those with serious mental illness.
We stay connected through my campaigning, through memories, and music. Since he has gone the pipes mean more to me than ever. I wonder often if his passion for them was the ability to create his own beautiful sounds, louder than the ones his illness gave him. Even then, sometimes the illness won out. I remember once, my sons Rory and Calum and I went to see Donald compete in a big tournament. He took it so seriously. But as he played this complicated piece, I could tell, he was losing it, eventually he just stopped, saluted the judges, and said ‘sorry, sir, I was away with the fucking fairies there.’
At the end of the presentation, in addition to the book signing, I have some of those CDs. Please take one. Pay whatever you like and I will donate it to Time to Change. But if you like Scottish music, you will enjoy it, I promise. And I will enjoy the fact that as you listen, Donald, through his music, is still here.
Thanks for listening. Thanks for helping me keep Donald’s memory alive. Thanks for everything you do. Please keep doing it. Help to spare people whose families may today be getting that call that we got, from some of the pain he and we and so many others have lived with thanks to the shittiest of shitty illnesses. Thank you.