Why Theatre Nemo was set up

Isabel's Story

This is my story as a mother. On the 9th July 1969 John was born, I looked at him and thought I had never seen anything so wonderful and beautiful; my heart was bursting with love. My son John was around 22 years old when we first noticed he was becoming very withdrawn around the family; he was not communicating and would stare out the window muttering to himself. John was a gentle soul, creative and talented in writing and singing beautiful songs, but his illness disguised the real John.

At this time my husband was dying of cancer and the stress of the situation was very difficult for the whole family. However the G.P. refused to do anything until John made an appointment to see her. I would sit up all night talking to John, trying to reassure him and to try and understand what he was feeling and why. There are no words to describe the panic and the fear and the helplessness I felt. The tension when he was in the house and the heart wrenching fear when he went out. What would he do, would he be safe?

John's mental health disintegrated further; he was convinced we were not his family. We had to call the emergency doctors out on three occasions within the one week. That got the G.P’s attention and for the first time she came out to see him. John was sectioned to be kept in for 48 hours observation but he walked out next morning. Staff tried to stop him but he said he was going to get a lawyer so they just let him go. That was the end of any medical intervention for about a year.John didn't come back to the house for about three days after this, when he did, he was dirty, hungry and angry, "Why was I spreading lies about him and trying to get him locked up". If I thought things were bad then they got ten times worse.

Over the next few years John was in and out of hospital and was put on a care plan. I went from day to day trying to find yet another method to cope. We were all living on the edge of a knife, dealing with my husband's death and John's terrible illness. We didn't understand about the voices or people coming in through the ceiling or trying to poison John. By now John was self medicating with drugs; it certainly wasn't for recreational purposes or for fun. John didn't have any fun in that eight years, everything he did was his own struggle. I went up to his flat one day he had boarded up all his windows, cut his wrist and with his own blood had written all over the walls. Hurt! Pain! Fear! Everything he possessed was smashed. "I can feel the pain of the whole world", he said.

About a year before John died he was really in a bad way, totally paranoid running about trying to save the world. He never stopped, sometimes not sleeping for days on end. He was not on any medication; care in the community was nonexistent his CPN didn't want to know. By this time I wanted to scream, shout, and I did, but the reaction to that was, "we can give you some medication."

One day I was getting my coat to go out when John came banging on the door which he did regularly. I just couldn't face it and stood rooted in the cupboard where I was getting my coat. He banged on the door and shouted through the letterbox. I didn't move in case the floor boards creaked and he knew I was there. I was in the cupboard for about an hour and I waited to make sure he was away, and then the door was chapped again and again and again. I was in a state of panic I wanted to scream, my back was aching my legs were going into a cramp. How could I explain not opening the door? Then the phone rang, I got such a fright and thought my heart had stopped beating. The phone stopped and I waited. Then I heard a voice shouting through the letterbox "Mum, mum are you alright?”. It was my younger son. I opened the door and just collapsed into his arms.What a state to be in and all that had happened was that my own lovely son who was very ill had come to the only place he knew, the only place he had left to turn to. As I write this tears are falling, I want to scream all over again "somebody help us."

So now we have John who by this time is totally confused. Left without any support or medication for nearly a year he became homeless, living in old derelict buildings, needing washed, needing medical care (by this time he didn't even have a G.P.). He had burned is hand very badly, stuck things in his eye, battered his head against walls, fell off buildings, fractured his skull, broken his jaw all to stop the voices that were telling him to hurt people. He was killing himself bit by bit.

At the last care planning meeting we ever had, I informed all the agencies of my fears that John was losing control and that something would happen if they didn't listen to me and get some help for John. I told the C.P.N, social work, homeless team, housing officers, I contacted my M.P. and Councillor and the Mental Welfare Commission. By the end of that week John was in Barlinnie. He had seen a man putting a young child into his car seat, the child was screaming and so John thought he was abducting the child and punched him (I often wonder if that man’s mental health has been affected by the incident). John was lifted by the police and spent six months in Barlinnie waiting for psychiatric reports, which were all different. It went on and on. Now John was not only mentally ill and on drugs he was also a criminal! John attempted suicide in prison. Shortly after this he was transferred to Leverndale Hospital where he spent five months. He walked out on the 12th May 2000, went across to the park and took his own life.

I felt abused, confused, terrorised, powerless, guilty, totally and utterly frustrated because I couldn't get my deep concerns and anxiety across to professionals. I didn't know the words to use and then suddenly it was too late: the system failed my son and it damaged my family and me.

I and others feel all (and more) of the emotions I have written. People are going through the same as we speak. Living with knowing it could and should be different, is the worst penalty and it haunts us all. What was missing in the services that could have helped John. Something he could relate to that wasn't clinical and taking control of him as John saw it.

Complaining and moaning was no good, we had to do something and so Theatre Nemo was born. This has been a great journey for all of us as a family. What John and others suffered through his illness hasn't been in vain, because of our knowledge and understanding of people’s need to be treated as people. We are helping others to understand that recovery is a journey everyone can take in their own time and in their own way.

We now work in the community, in psychiatric wards and in prisons with great success. The support from all the staff we have come into contact with has been fantastic, there are so many good people working to change things for the better. It is a great privilege and honour for me, my family, friends and all the wonderful members of Theatre Nemo to get this chance to help bring about change.

I am now very happy (sometimes sad) and content and love the work of Theatre Nemo.

Isabel McCue

Founder and Chief Executive of Theatre Nemo
and John's Mother always.