Barrie kindly contributed his experiences from an article written on his own site. Click here to read more from Barrie.
I came to be at Intervoice after my last hospital admission … leaving again with another diagnosis and hearing a voice in a foreign language 24 hours a day which I still hear to this day..
On leaving hospital I was in an agonised at confused state, told it would never go away, that it was world salad/neologism, heavily medicated and unable to fend for myself much at this period i was under the care of a support team 3 days per week and weekly CPN visits.
Throughout all of my time visiting hospitals I always felt my feelings were being misinterpreted, everything I said was seen as a sign of illness .. everything.
In my heart of hearts I always knew that not everything I said was madness, that it made perfect sense only not to those that I was seeking help from or venting my thoughts too. Again I was under the label of Schizophrenia and Bpd. I was ill, how could I possibly be right or make sense .. surely everything i said just had to be illogical and a sign of madness?
This always internally angered me. Why because I didn’t think the same as everyone else I had to be mad? I was very alone with this for years in and out of hospital medicated more and more the more I complained about the effects of my medications and also trying to express my thoughts and tell them of the experiences going on in my head. No one wanted to know I was ‘Schizophrenic’ after all.
I always would be i would need medication and would never be able to manage alone.
That is always how it felt and for a long time how it was!
I couldn’t stand for this I was heavily medicated and in a a zombie world I struggled and pushed to the point of wanting to cry though I couldn’t cry at this point in time as I had no emotions I was numb, completely numb!
I could see the world going on around me from inside, I can only describe it the way it felt and it felt like I was in a comma but had my eyes open. I could see but I could not participate, I could hear but i could not respond.
It sure it ain’t nice being trapped inside your head before learning about voices and medications and getting help and support. Voices can be angry, hostile, frightening and hard to control. My voices were evil a lot of the time really evil. I also had lots of nice voices but a demon as I thought had came home to roost in my brain for a while and it was a hard one to shake but of course we can overcome these voices as my good friend Peter Hawes Glass Artist shows here in his film. Peter also runs voices Inc.
For Peter’s film. CLICK HERE
This feeling of being trapped and locked down I guess was what in the most made me want to get to my feet and make them see that this did not have to be the case. I managed to do it mostly thanks to Shirley Coffey (pictured – left) my support worker at the time and also thanks to an understanding CPN a great man to be honest. When I voiced my feelings to him he fought my corner and went out his way to make sure I got what I needed to help me on the road to recovery. Also my support workers managed to locate and get in touch with CAPS in Edinburgh an advocacy service and also they had psychologists and other mental health workers doing research on hearing voices and were looking for patients to give an insider perspective on how it felt to be in hospital have a label and how this affected us … this was perfect for me ,, a chance to be heard.
After attending these meetings for a couple of weeks at CAPS they told me of INTERVOICE THE INTERNATIONAL HEARING VOICES MOVEMENT.
My support worker Shirley Coffey around the same period had been desperately trying to find me someone who could help me, someone who would understand my voices especially the one in my head 24/7 that speaks in the ‘foreign tongue’. It shouted and ranted in my head 24/7 it never ever ceased. I was writing constantly in this language ( I still can) even after discharge & when agitated I would speak in it. At the time I believed i was ‘POSSESSED’. I had to be surely. How could this new language just get inside my head?
It wasn’t long till one day Shirley came in and handed me a book.
It was called “RECOVERY AN ALIEN CONCEPT” this book let alone it’s title was something i had never heard of. Ron Coleman, again someone I had never heard of. Though in finding out changed my entire life.
For Ron’s book and to view his site at Working to Recovery CLICK HERE
RECOVERY what was this, no one told me about this??
Even though I always inside being stubborn like I am at times thought I will f****** beat this no matter what it takes but I just didn’t know how. The answer to this was being handed to me for the first time ever at this period in my life.
I didn’t want to be like this anymore I wanted out of my head wanted away from these voices, they were mentally eating me alive and deafening me to the world in the process & blinding my vision through the intensity of their noise, it was like I was under constant attack I had hundreds of voices!
Shirley my support worker came into me one day at home and said Ron Coleman is going to phone you today at home, while I am here at lunchtime.
I could hear this inside my trapped medicated mind but at that moment in time I didn’t hold out much hope for anything helping. I heard voices I was mad and medicated and labelled, who could possibly help? Not possible I would think and this thought of course was laughed at by my voices who would say things like “haha do you think we are going to let anyone help you? No one can save you” only with extra added cursing and swearing and intensity.
Then the phone rang and it was Ron.
Even as we spoke on the phone my voices were laughing at me “haha you really think he can save you, you f****** idiot”
Voice can be like that, a lot.
Though much to their later disappointment it turned out he could.
He said to me after a brief introduction and a chat,
“Barrie, YOUR VOICES ARE REAL ” .
I can remember that feeling & i will never ever forget it. Someone just accepted that my voices were real. This had never happened to me before ever … and for the first time I felt something long gone in my life .. something called HOPE ….
I had just been released from a 7 week stint in hospital, 3 of which in were in private room which is no different to a cell, it had a mattress a caged window and nothing else bar a small sink and a mirror that I would speak into everyday, after all that’s where my voices were coming from wasn’t it, they often did.
That feeling of seclusion as I have talked about many times not only in the hospital setting but in society because of our labels, simply hurts and serves no positive purpose. It merely intensifies our thoughts and fears and I describe it simply as a torturous confined lonely Hell.
This also another amazing book by yet another inspirational psychiatric survivor Egan Bidois, the very first man to answer me when i joined intervoice begging & calling out for help and it amazes me to this very day that i was answered by Shamanic Healer such as he, would i be mad to say i think he heard my call? I,ll leave that up to you. We are still great friends to this day and we speak all the time. This man as well as his book and his journey are an inspiration to all.
Link for Egan’s book here. I can highly recommend it to all.
Aye, so Ron and myself talked for a short time and he told me how to go about making time to speak with my voices .. where I take control and they speak to me when I wanted to. It took me a fair while to grasp this concept but through time and a lot of internal effort and battles it began to work. I was beginning to understand my voices only had the power I gave over to them, they could tell me to do what they wanted, but I had the CHOICE whether to act on their suggestions, something I had done many many times in the past.
For a blog by Kevin Healey featuring Ron Coleman above CLICK HERE
Between Ron calling me, joining the Intervoice support group on facebook and the amazing support knowledge and acceptance I received there my recovery began in a way i could never have dreamed possible.
Not only did I meet some of the worlds most amazing mental health workers but also other voice hearers and another thing I met there was something else I had never experienced & most importantly was a thing called ACCEPTANCE, people were making me feel like a human they cared about me they knew what I had to say was real, they were supportive beyond belief and still are to this day .. for the first time ever I was made to feel a part of something I felt INCLUDED for the first time ever in my life, hearing voices and being the way I was was something I had always done alone since my childhood, now I was no longer the OUTCAST I was part of something, something wonderful, something life changing.
I could feel the positivity of it all and this was it for me an opportunity to grow and recover one which i grabbed with both hands. I felt for the first time in my life I had found my clan, my tribe. It was almost like I had found a home.
So with the information I was receiving at intervoice and the advice I began to read and read I began to ask questions and I would take from this the things that rang true to me, things that I knew would help me to take ownership of my life, things that would help me to recover in my own way as an individual and with that i began to learn accept my voices & diagnosis and move forward.
The next big thing I did again whilst medicated and hearing voices was attend the Worldwide Voice Hearing Congress in Cardiff, where i met personally with Ron Coleman and Professor Marius Romme they were both even kind enough to sign books for me.
Ron signed mine saying “ENJOY YOUR JOURNEY ” i had no idea how much I was going to do just that!
I even got to star in the video as from 9.18secs to 9.23secs i am filmed walking past doing what I do best, drinking a cup of coffee.
I met also with Eleanor Longden as she Ron and Karen Taylor signed me into the congress and they laughed that I didn’t look like Ozzy Osbourne as Ozzy Osbourne had been my profile picture for the whole time I was on facebook at intervoice as again I was too scared to come out of myself and get out of my own head, so I hid behind this profile picture until my confidence grew enough for me to be seen. I was a massive Black Sabbath fan I still am so it seemed fitting at the time. But I had no self-esteem at all and I couldn’t show myself to anyone I rarely left the house, I couldn’t.
Eleanor Longden below whom I am friends with to this day and also one of my main inspirations. See her TED Talk here.
I met with so many other amazing people,, people came from everywhere at the congress to show their support it was overwhelming and again that feeling of acceptance and support kindness and hope was there and again i learned much and took home with me a huge desire to change not only my life but the lives of others but most importantly the minds of my psychiatrists. This quote by Eleanor was what grasped their attention most.
I came home after telling Ivan Barry at the congress that I needed to turn my life to the positive and do something positive when i got back to Scotland, in a strange twist of fate I did just that. The other strange thing was I met Ivan who is from Coventry down in Wales it turned out he lived 5 minutes away from me in Edinburgh, so we met up for coffees and chats.
Within about two months of being home Lilly Rush had given me the Positive group a group that wasn’t being used and had just 20 members in it I now have it at 3678 members at this precise moment in time and it’s growing everyday.
So it began there with Kevin Healey taking a statement i made whilst speaking with Egan Bidois, both of these two men who also had a massive positive impact on my recovery, in doing this Kevin not only promoted the group, he promoted something long lost, my self esteem my sense of worth,,here i was suddenly after years of nothing, here I was with something to do, a purpose and positive began.
This was the blog the excellent Kevin put together for the group and again. CLICK HERE
As time went by I met more and more people and organisations who wanted to help me joined and I was given other groups to admin such as Mad Pride International.
This is the Genius Kevin Healey here in this fantastic film about ‘Hearing Voices’ Kevin is the GENIUS between of the two of us, me i’m the GURU, I do the GURUING lol, it’s just how it turned out to be. Like I said Kevin was one of my main inspirations also and he became a great friend who supports me to this day.
I was also given an Epilepsy Group in which i was admin along side Lilly my partner who has Temporal Lobe Epilepsy herself and also an online Schizophrenia group, then I was given Saude Mental Positiva and Esquisofrenia to admin also the stop the psychiatric drugging of the elderly group and a Hearing Voices online group, and i loved working in them all, still learning for myself and most importantly trying to help others and prevent others remaining stuck in the trap of the system and to promote the fact we can and do recover.. From this alone i get the most satisfaction and again it gives me purpose.
So thanks to LILLY RUSH who without doubt was the most important in my recovery. She was and still is the pure backbone of my recovery.
Lilly was on that first thread on intervoice where we met for the first time with Peter, Egan, Kevin etc
We lived in different countries but she was there for me day and night as we spoke almost 24/7 it was 1 year and 4 months before we actually met in person and we had been in love all of that time and of course we still are, we phoned and mailed day and night but I was trapped in the system and she worked here as a nurse full time so it was impossible for us to be together but we got their in the end and thanks to all her dedicated love and support since we met on facebook I found the strength to fight through, I had a reason and she is and always will be that reason she is the love of my life and the mother of our baby to be my fiancee my wife to be my world, my soulmate, my universe my thanks and gratitude will always be with her I’m honoured and blessed to have met this outstanding woman.
We have since had a beautiful baby boy together born on 25/1014 …
I Love you Lilly i thank you, i thank all you great guys at Intervoice and in all my own groups and also all groups in which i have been in or am still in hanks to all you i now have a life again a whole new life.
So i decided f*** it i am going to take this to my psychiatrists, so I took information on the concept of recovery and the HVM to them, we would have meetings and talks, student psychiatrists, psychologists, consultants, support workers, managers etc would come to my home and we would watch videos etc together about hearing voices and recovery. It was fantastic for me to see how interested they actually were, and I could see they were welcoming not only this information but they were really pleased to see the effect it was having on my recovery, they began to take me off heavy meds.
Psychiatry was working with me they were eagerly promoting and working with me to recover for the first time ever i saw them as friends something to get along with and not to dislike, i saw them through whole new eyes and well i like a challenge lol.
I was starting to feel like a person and not stigmatised against, i was beginning to feel equal.
For the first time in years i was starting to feel like myself again i was starting to feel and do things which were ‘NORMAL it was great to be back.
Although there is a lot of things i believe need to be modernised in psychiatry they are not all bad and they can only work with the tools they have i suppose, lack of time and money doesn’t help them and i suppose that is not always their fault, I had an fantastic consultant in the end up and my CPN always went out of his way to help me they were very modern thinkers and believed entirely people can hear voices and live fulfilling independent lives.
Their attitude was life changing for me and together we watched each other grow as we learned from one another. I took great satisfaction on proving to them I would beat this ‘illness’ to the degree I could manage on my own and I took pride in the fact they were understanding and working with me onside as a team as opposed to making me me feel they were the enemy which is how I had been made to feel in the past & in truth how I saw them. I started to see they were not an enemy and I no longer feel that way about them. I just feel a lot more has to be done for psychiatry and voice hearers to work together that is in itself key to me, cos it makes a whole world of difference when it comes to trying to recover successfully.
So after learning to take ownership of my life my voices and working together with my support team mainly Shirley Coffey who ultimately saved my life by letting me know of Ron Coleman.
Also by working along side my MHT and also by meeting everyone at Intervoice and working away in my groups to create awareness and give out a message of hope to others, i am at peace with myself for the first time in my life, i feel alive and free and well i suppose lol now ’I AM ’ .
It was two years ago i joined Intervoice just two years.
I met my fiance on the very first thread i posted on there to seek help.
About a year after joining Intervoice i got fully discharged from psychiatric services leaving them the gift of a hearing voices resource pack as i left. I shook hands with them and i received all their thanks and congratulations that to me was a huge moment and gave me a massive sense of pride & acheivment in itself.
I now am living a whole new life in a new country, engaged to my beautiful fiance. I have a home now, a family and love and best of all in the world a baby son on the way due to be born in about 6 weeks time.
I have all these groups and am now getting involved in even more projects and i have something i had never seen before ‘A FUTURE’ .
I am free. i hear voices, I have been accepted and my voices are now my best friends, friends that are taking me to a whole new future, a future where I am loved and accepted and included in life, and for that alone it was all worth it & for this feeling I would turn around and do it all again.
I would love to see stigma and labels removed they cause so much pain and misunderstanding, Labels can be useful in terms of insurance coverage, getting benefits and sometimes as a shorthand for other people. But since all of us have such unique and individual experiences – my saying I have ‘Shitsophrenia’ doesn’t really tell you a whole heck of a feckin lot. It can actually result in you making a whole lot of assumptions about me that most probably are not accurate.
I believe we were born to live and not to be labelled .
So i guess it,s please remember –
“PEOPLE CAN AND DO RECOVER FROM THE MOST SERIOUS MENTAL ILLNESSES ”
My love and appreciation to all you guys shall be eternal as it was the combination of the love care and support i received from each and everyone of you that made this possible & giving myself a “swift kick up the erse ” as my support worker Shirley Coffey often told me I needed that made it happen. So here kick my ass haha.
Thanks to each and everyone of you, I’m blessed to have met you all.
Then of course another amazing part of my Recovery was just a couple of weeks ago in October 2014 Karen Taylor flew to Ireland to meet with me and asked if I would do a workshop on Recovery at the Mental Health RECOVERY Summer Camp in Scotland 2015 alongside Ron Coleman whom I spoke to again on the phone this day only this time as a free man just two years later. NOW THAT’S BOTH A RECOVERY AND AN HONOUR!! HAPPY DAYS!!
Love to you all always