BRIAN HARTNETT – PERSONAL RECOVERY STORY —
At a Schizophrenia Ireland (now Shine) conference in Dublin in 2004, Brian gave a presentation about his own recovery story to a large audience. Brian first started hearing voices in 1990. Since then his experience of voice hearing has developed steadily.
In 2003 he became the Midlands Regional Peer Advocate for the Irish Advocacy Network (IAN). In 2006 he became the Advocate for the Clare / Limerick / North Tipperary Region. He was based in Limerick. He visited hospitals and day centres on a regular basis providing support, encouragement and peer advocacy services for his clients.
In 2006 Brian also started Hearing Voices Ireland (HVI) for people like himself who hear voices. In 2009 Brian left IAN and since then has been lecturing to nursing and occupational therapy students in Trinity, NUIG and UCC. He has also facilitated hearing voices groups.
NOTE: If you would like to submit your story here for publication please send an email to Brian at email@example.com
At the conference in 2004 Brian described the beginnings of his experience of hearing voices and the disruption it caused in his life and then spoke about his recovery and where he saw himself at that time. The speech was well received by many in the audience who had encountered similar difficulties and in the question and answer session afterwards, many praised Brian’s courage and honesty in delivering such a personal account of his struggle with voice hearing. The speech is below.
Hello everyone. I have been asked to give a personal perspective on recovery and what follows is just that – a description of what it was like for me to descend into mental ill health and my on-going recovery. I am not a qualified expert or well-read in this area, I can only go on what I believe. I am not an authority on the subject but I am an authority on me.
What I will talk about is what happened specifically to me, it is not what happens to everyone with this experience although there are similarities. I will try to keep it as simple and straightforward as possible although it is difficult to describe in plain terms what my experience has been. Over the next 30 minutes I will run through the following:-
1. Personal background.
2. The beginnings of my health difficulties.
3. Delusions and hearing people’s voices.
5. The start of the recovery process.
6. Limerick SI group.
7. The Irish Advocacy Network.
8. Today and the future.
I was born in Limerick in 1964. I am the oldest of 5 children and I have been very lucky to come from a stable family background. I lived in Limerick until I was 17, when I moved to Dublin to go to college in the NCAD where I studied industrial design. In 1986 I qualified with an honours degree and soon after started work in a design consultancy in Ballsbridge. I worked there for 2 years and then I moved to London where I worked until 1991. I lived in London for another 5 years, returning to Limerick in 1996 where I have lived since.
Around 1991, at the same time as the company I worked for closed and I lost my job, I started to retreat into myself. I am not sure when I started hearing peoples voices and exhibiting signs of ill health. It crept into my life gradually. Thoughts began to become vocalised in my head and I began to hear voices in the babble of conversation in crowded places.
People often ask me what it’s like to hear voices. If you imagine somebody you know calling your name, you hear it in your mind not with your ears. Now imagine that voice taking on a life of its own seemingly independent from you. Also this voice is joined by others, mostly people you don’t know and they begin to talk to you in a very derogatory way as if they know everything about you as if they can hear your every thought. Now imagine that when you are talking to somebody in reality or listening to the radio or watching television that this layer of voices overlaps the real sound confusing and changing what you hear. That is what it is like to ‘hear voices’.
As this developed I began to get paranoid about being spied on and plotted against. I could not understand how this worked – were there hidden cameras? I wasn’t particularly religious but I began to think that this had a strong spiritual aspect to it and that maybe I was possessed by an evil spirit or spirits. Some of the voices I was hearing were people I knew, sometimes these people were in the same room. I began to talk back to them in my head but it was mostly conversations about very personal things and it was usually very negative and insulting. It was also very repetitive and it never stopped. If I was in a public place such as on a bus, in a restaurant or walking down the street, it seemed that everyone was talking about me.
I began to think I was involved with a secret cult that was planning to influence humanity with evil spirits and that I was in the middle of a spiritual war on a global scale. I was living in a constant state of crisis but I held on to my grip on reality nevertheless as a part of me questioned my sanity.
Over the next few years I retreated further and further into this inner world until I was convinced that everyone else including my partner, family and friends were also possessed by these evil spirits and that this spiritual war was coming closer to the day when the evil spirits would destroy the world.
I believed that I could communicate with anyone by talking too them in my head and that for safety sake I should not openly talk to anyone about this hugh spiritual crisis as I would expose myself as a traitor to the cult which would have unknown repercussions. I had to maintain my faith in myself and god while weaker people succumbed to the evil cult.
I was convinced that nearly everyone had capitulated to this evil army and that I was one of the few that held out against them. I began to feel different from everyone else and that I was powerless against the cult. I imagined that for my punishment I was cursed to remain half way between reality and this inner world.
I tried everything to reason my way out of this including giving into the force and denouncing god and my belief in humanity. This was also a failure as I wasn’t accepted and it just left me with a terrible guilt that I had given in and let this evil into my soul. I thought that despite my best intentions I was doomed.
This became a way of living. Everything revolved around this grand struggle between good and evil. The television, radio and every conversation referred to it. I struggled to maintain my faith and at times good would rise up against evil and sick and desperate people who had been sucked into evil doings would come to me for help and reassurance that evil had not yet won. At times like this I would be revered and applauded and treated like a hero. As a result I began to think that I was famous even feared inside this word. But evil would rise again and this just added to my sense of isolation and desperation.
Around the same time as I began conversing in my head with people I started seeing shadows and distorted faces out of the corner of my eyes. I began to look in to things seeing images of people, places, and objects. These visions followed the conversations in my head. It was like a spiritual TV and I would see it all around me. It was addictive and I would often stare at fluid objects like clouds, trees and in the end blank walls following the on-going events in my mind. Sometimes I would feel I was being physically attacked and I would flinch to avoid people swiping at me. I also suffered from sharp pains in my head.
I was effectively punch drunk from this constant onslaught of voices, visions and delusions. I was functioning on a very basic level living from one minute to the next. It followed me everywhere I went, even when I came home to Ireland from London on holidays. I accused my partner of lying to me when I confronted her about the evil cult that she and my family had succumbed to.
But this was a desperate outburst and I didn’t dare confront anyone else as I felt that events afterwards where my punishment for my betrayal. Nobody would risk admitting to me anyway that this was real because of the threat of reprisal that could even mean their death.
A simple trip to the shop became a nightmare as people seemed to know who I was and would insult me about my most private thoughts and fears. I was wide open to ridicule and being further cursed. It was bad enough at home but when I went out it was like running a gauntlet; consequently I avoided going out if at all possible.
This lasted for five years. It started first thing in the morning when I woke and continued all day long. At night I had intense nightmares about evil things. As I was afraid to even talk about this nobody knew what was going on in my head even though I thought everyone was in on it. I spent most of this time trying to maintain some kind of equilibrium in my mind between not appearing to be an enemy of the evil cult and at the same time not doing too much spiritual damage to myself by giving in to them.
In 1996 I finally returned home after the inevitable break up of my relationship with my partner. I had not worked in five years except for a few freelance jobs and I was penniless and desperate for an end to this living hell. My parents were good enough to take me in even though they must have noted my increasingly bizarre behaviour.
One morning my dad walked into my room and found me crying. I was at my wits end with the never ending suffering. My dad recognised that something was wrong and for the first time suggested I see a psychiatrist. There was no history of mental illness in my family and I knew nothing about it but when we did get to see the doctor he diagnosed me with schizophrenia.
This came as an enormous shock to me. I was also scared, angry and confused. For the first time ever I realised that everything going on in my head could possibly be attributed to an illness and that this illness might be treatable. But I was in denial – how could this convoluted experience which I had lived with for five years possibly have all happened in my head and no one else’s. It was almost scarier to believe I had suffered alone rather than believe it had been real in the sense that others had been involved.
It seemed impossible to me that what this doctor was telling me explained away the transformation in my live, but when he said he could prescribe medication that would stop this nightmare, a glimmer of hope appeared on the horizon. I was worried though about what this drug, would do to me. Would it turn me into a vegetable, would I be sedated to a state of numbness? He reassured me by saying it was a relatively new drug and that it was the best thing for me. He mentioned hospital saying I could go there but I agreed to be treated as an outpatient under my parents supervision. He also gave me a prescription for side effects.
The drive home with my dad was full of questions and talk of what this all meant but I still kept my voices to myself. I had always sworn revenge on them some day but it was early days yet. I took the first tablet when I got home and the next few days I was very drowsy and slept a lot.
Looking back now I find it hard to believe just how all pervasive this experience had been. The effect on my life had been profound. My career as a designer had faded away. My long term relationship had finished. I had lost contact with family and friends. I was penniless and I felt totally isolated from society and the people I cared about.
The effect of the medication was to subdue the voices and delusions to a state where I could function to a relatively normal degree, but I found that I also had to be careful to avoid stressful situations. I had to eat, sleep and exercise on a regular basis. I also had to take the medication twice a day every day. If I didn’t look after myself in this way the voices and delusions would rise up and start to interfere in my life again.
I had fallen behind in my career to such an extent that I was wasting my time applying for jobs and attending interviews when my portfolio had not been added to in five years. Computers had taken over in the design industry and I didn’t even know how to turn one on. There was a computer at home so I started to learn how to use it.
I did a FAS course in running a small business. After a few months I applied to the enterprise board for a grant to buy the equipment I needed to start up my own design business, which I did. My dad was in the business so he was able to send work my way. I moved into an apartment in Limerick city centre and worked from there. But, I had problems with staying motivated after being out of work for so long and the voices and delusions, even though reduced, were a constant problem.
When my dad retired the work dried up. I tried bringing in work myself but it wasn’t enough. I had more and more time on my hands and I began to slip back into myself. I never talked about my difficulties and I felt alone with the voices again. I got a fulltime job working in a call centre but I found it very stressful. I felt I had failed as a designer and I was going to be stuck in jobs with no future. I had however developed a great interest in the internet and computers so I applied to do a masters in multimedia in the university of Limerick. Much to my delight I was accepted and I started the year long course and in the end qualified with honours.
I hoped that with this qualification I could expand my repertoire of design skills to include website design for the internet. But as luck would have it while I was doing the course the market for website design and hopes for an internet boom took a serious downturn and I found that I just couldn’t get the work I hoped for.
After six months of trying to make the masters work for me I took a job as a security guard to bring in some money. This was meant to be a short term measure but a year later I was still doing it. My voices and delusions got worse and I began to exist again on a very basic level. I still kept my illness to myself. I had learnt that people were confused and even scared when I spoke of it so I kept it in the closet.
I knew very little about it but I did want to meet other people with similar experiences. Through the internet I became aware of SI and I emailed them to see if they ran self-help groups. As it turned out they set up a group in Limerick and I attended from the start. It was a great thing for me to finally meet people with similar experiences but I was surprised that none of the group heard voices. I thought that hearing voices was part of the experience but I soon learnt that was not necessarily the case.
I also realised that I had other things in common with members of the group. The feelings of isolation, frustration and fear were prevalent. It was such a relief to talk openly about these things and my sense of isolation began to ease. I also found I had a whole new set of friends and confidants.
On another front, I had always had a great interest in music and I had made contacts in Limerick who wanted to start a club so I became involved with DJing in Limerick and around the country. While this was another great outlet I never talked about the voices and delusions with these friends. I was still afraid of the stigma associated with people with mental health diagnoses. In the end I started up my own club night called HusH which happens once a month and it’s now in its third year. I also have a radio show which I really enjoy doing once a week in county Limerick.
One night at the SI group Paddy McGowan, then Director of Advocacy with The Irish advocacy Network, attended to speak about peer advocacy. I had never heard of it but I was very interested in what Paddy had to say. He told us that training in advocacy was coming up and asked if we would be interested.
I started the training in Dublin at the beginning of 2003 and received my accreditation soon after. I had been working as a security guard for over a year now and had had as much as I could stand. A position for a regional peer advocate in the midlands became available and I did an interview for the job. A week later I got the call – I had the job! I was over the moon not just because I finally had a decent job with a future but also because I felt it would be interesting, challenging and productive work. I made a call to the security firm that I had wanted to make for a long time.
The Irish advocacy Network is an island wide, service user led, organisation that provides peer advocacy services to people with mental health difficulties. As a regional advocate I visit day hospitals and psychiatric hospitals throughout the midlands providing listening ear and advocacy services.
When I started the job I found that I received a warm welcome in the places I visited. Staff were happy that I was taking a certain amount of pressure off them by spending time with clients, an clients were relieved to have an independent listening ear from someone who had similar experiences with mental health issues. Sometimes specific problems that clients had would lead to direct advocacy work but more often than not simply having the time to listen to a client was sufficient to support them in sorting out their problems. We don’t advise people, we try to help them take back control over their lives by recognising what their real needs are. We also signpost people by provision of information such as phone numbers or names and addresses that they may need.
Around the same time as I started the advocacy work I met a girl who has become very special to me. I had been in many relationships since I become ill but most of them fizzled out when it became obvious to the person that I had a mental health difficulty. This I felt was due to a lack of understanding of what I was experiencing.
I met my partner at a conference. She has a diagnosis of a mental health difficulty and for the first time I could share with my partner the daily struggle with voices and paranoid delusions without the worry of instilling fear and misunderstanding. She was able to reassure me from the beginning that somebody we met had not insulted me or said strange things when we were going through the day. In turn I was able to reassure her in a similar way. But it wasn’t just our shared experience of mental health difficulties we also had other things in common and a year and a half later we are very happy together.
Another event I was involved with at the time was the Phrenz of the Media Project. This brought the Limerick and Ennis SI groups together to develop an idea to use the media to help reduce the stigma associated with people with mental health issues. The idea developed into a website with an animated piece depicting a person’s suffering from stigma attached to their mental health difficulty and also an audio piece which is an edited conversation held between the members of the Limerick and Ennis groups. The finished project was a great success and I am proud to have been involved with it.
Early this year another piece of my recovery jigsaw fell into place. I started receiving counselling from a psychotherapist on a regular basis. This has helped me to come to terms with myself on a practical level and even though I believe it is early days in this therapy I am hopeful that a lot of damage done to myself and others will eventually be resolved.
Medication had a role to play in my recovery and I still take it today but I feel my real recovery begun last year when I started working in a job that values my lived experience. As a peer advocate my ability to talk openly about my experiences is a great help to people that may not have the confidence to do so. It is rewarding to have people who are suffering terrible anguish put their trust in you and share so much of themselves especially when you can see the results of helping them on a practical level. A little human warmth goes a long way.
The job has given me a sense of worth I had not had since my days of working as a designer. Another plus is the fact that I am able to make use of my qualifications and experiences as a designer by looking after The Irish Advocacy Network website and other IT work.
More recently I have begun to develop a hearing voices network in Ireland for people who hear voices. At the moment we are sorting out some legal aspects but we can be contacted through our website http://www.voicesireland.com/
I still hear people talking to me that I cannot see and I still get confused about what reality should be like but the improvements in my life have helped me with this inner world. The people I hear are more supportive now. I hear the voices of and feel the presence of men women and children. Sometimes I feel its people I know some of who have died, mostly its people I have never met who come and go.
These people can be from can be from anywhere in the world, any religion, race, political persuasion or sexual preference. So it’s like an open door in my mind that is open to the world both physical and spiritual. I have four theories on what it is that I am experiencing:-
1. The people in my life that I hear and feel and sometimes see are real people somewhere in the world who have the same gift as me, that is, an ability to communicate without physical means over geographical or spatial boundaries.
2. I am in touch with the spirit world.
3. These are voices and experiences generated by my brain caused by physical or psychological change to my brain and mind.
4. A mixture of the above.
Some of these people have been with me for ten years or more and I have a relationship with them something like one you would have with a member of your family – they drive you up the wall sometimes but they will always be there if you need them. They have been through a lot with me and we often have a laugh about the good side of this experience so I would like to thank them.
The support of my family and friends, the help I have received from the health services, the boost in confidence my job has given me, my relationship with my girlfriend, the projects I am involved with and indeed being asked to speak here today – all have been part of my recovery and I would like to sincerely thank everyone concerned.
I am not sure if the war between good and evil rages on inside, it certainly seems like it does in the physical world but I keep an open mind on what this inner world is because sometimes it’s impossible to ignore certain experiences. One thing is for sure I am still learning to come to terms with who I am – Brian Hartnett!
OCTOBER 2013 UPDATE
Reading back over this now I can see how far I have come in my understanding of my voice hearing experience. Even though I was diagnosed with Schizophrenia in 1996 and started on medication it took me sometime to realise that rather than simply seeing myself as having an illness I came to understand the need to explore on a personal basis why I was hearing voices.
I was suffering from a certain amount of post traumatic shock from when things were at their worst in London and it took many years before the nature of my voices changed from being simply aggressive and domineering to more supportive and friendly. I realised that my voices were messengers of my subconscious and that I had an active role in the relationship I had with my voices. As my life improved in real terms so did the nature of my voice hearing.
Working with people as an advocate with IAN helped a lot. I met a lot of voice hearers and together we explored individual experiences. Also when I started meeting people from around the world who heard voices and started reading books and seeing websites on the subject I learnt about the alternative viewpoints to the psychiatric illness model. Starting HVI in 2006 also made a difference as I met even more voice hearers from around Ireland. All the media interviews I did over the years also gave me a chance to redefine my thinking.
I still hear voices today but I would say the nature of it is what I would call normal voice hearing in the respect that I see it as an internal dialogue with my subconscious. It’s something I mostly enjoy as I have learnt the value of listening to myself and not being afraid to explore some of the more difficult aspects of my life.
NOTE: If you would like to submit your story here for publication please send an email to Brian at firstname.lastname@example.org