Curved Graphic

Being a Parent and
Having a Mental Illness
Who Cares Conference, National Schizophrenia Fellowship, September 2001

 

Hello

As has been said my name is Graham Morgan. I am the Advocacy Development Worker with Highland Community Forum and work to help users of community care services develop their own voice within our society.

In effect this means that I work with the Highland Users Group also known as HUG. It is a group with 250 members and 14 branches across the Highlands. It represents people with a mental illness. I also work with a network of People First groups, which represents people with a learning disability and at a more general level in encouraging the promotion of advocacy.

I have had a diagnosis of schizophrenia for the last 8 years and before that I had the diagnosis of having a personality disorder. I also have a nine-year-old son who I love very much and it is this relationship and my illness that I will talk about. However, I will also talk about the views and experiences of other parents because we used the August round of HUG meetings to discuss this very subject.

Being a parent and having a mental illness is, to me, a terribly neglected subject, a hidden and painful subject, a subject that can be filled with horror and pain that will never diminish or be forgotten, but equally it can or, possibly should be, a non subject.

We did some mental health awareness raising in schools, as part of the work of the hug communications project last year and in the evaluation of our work one of the pupils described how surprised they were to hear that someone like me could have a diagnosis of schizophrenia, and still have a job, and still be a father and she or he had a right to her ignorance.

This is one of the basic messages that HUG members wanted to get across to the public, to professionals, to policy makers and our friends, such a simple message; just because we are mentally ill and just because we struggle does not mean that we do not love or care for our children. We, like everyone else, love and cherish our children. We want them to have the best of lives, to experience happiness, to grow strong and content, and yet many people are ignorant of this and do not realise that the pain that we go through which may hurt and damage our children was never willingly directed at them.

I will now tell you some of my story of developing an illness and how I feel about it in respect of my son.

I became ill all around a time of big change in my life. I came back from the Far East where I had been travelling and working as a yacht skipper. I got married and a month later I got my first proper job as a community development worker. Three days after that my wife realised that she was pregnant, 8 months later we moved into our first house and our son was born and five months later whilst he was still a little baby, I was in hospital being specialled by a procession of nurses.

It was the most awful time in my life and my wife's. I had started finding it very hard to sleep, my thoughts were whirring in my head and in my dreams and I began to wish more and more to harm myself, as I had done in the past.

As we began to make arrangements to see a psychologist, my thoughts gathered and veered and I began to think that I was evil, that all around me and inside me were evil spirits, they were stealing my thoughts, they were warping my thoughts -and -one evening, when my son was sleeping, I told my wife that I had to go to the woods where there was safe energy where I would cut my wrists and get rid of all the evil in me. I think that was the most awful thing that I have ever done.

I did not do much damage to myself but my wife had to sit at home and wait to see if I would come home at all. The next day with much waving of arms and hiding from the evil that burned out of the sky in the sunshine I was admitted to hospital where I stayed for the next few months.

My wife visited every day with my son in his pram and the other patients would hold and cuddle him while she was with me but I never touched him or her or any one else. I thought that I could infect those around me with my badness if I touched them. I desperately yearned to cuddle my son and my wife and yet I couldn't. They had to stay at arms length.

I thought that by doing this I would protect them from me. I felt so sad and alone. I couldn't understand what was happening, the world no longer made sense to me, the joy of being married and of having a young son had disappeared to be replaced by a world where I burnt patterns in my hands and cut myself with razor blades.

For the next couple of years I was quite often ill and self-harm was never far from my mind. I was on very high doses of drugs and between having my thoughts bewildered by the chemicals and having my motivation turned away by my illness, there were times when I played little part in helping bring up my son.

In fact there were times when my wife spent as much time dragging me back to reality as she did looking after our son. I didn't have the energy, and when I was ill I was not there at all for him. There is a photograph of one time when I was dressed up in my oilskins and heavy sweaters and bobble hats in the summer, inside, because that is how I kept safe from spirits and that is how my son saw me. This strange blank remote person called daddy.

There was a time when, all of a sudden, when drinking a pint down at the shore by the sea that I saw every refection in every wave as a spirit and we started all over again. I told my wife that to be safe I would go and live in the dark in the four-foot gap between the floorboards of our house and the rubble of its foundations. And there for a few weeks I stayed in the darkness and the mould, whilst my wife tried to persuade me to eat and to take my drugs and the psychiatrists supervised from a remote distance.

An abiding memory I have is that my son would crouch at the little trapdoor that led to the gap under the floorboards and point his fingers down and say "daddy." And in my mind is shame. Because although I know that it is not my fault, that I had not set out to bring such anguish to our dreams and family, I know that I was not there in the way I wanted to be and that maybe these events hurt my son too just as they scarred my wife despite him being so little and so young.

I am reading him "the Lord of the Rings" at the moment for his bedtime story and some of you may remember Aragorn or Strider. He likes them as much as I used too. I always wanted to be tall and handsome and heroic. I wanted to be a silent wise flint eyed man and I also wanted to be a fun amusing man. I also wanted to spend as much time as my wife did with my son and yet I didn't.

My dreams of who I wanted to be, my unattainable vision of being someone that my son would admire and love and find funny, clever, energetic and full of things to do shattered around me. My dream, my role and all the things that I wanted to be, I couldn't.

Perhaps, maybe, that is good because, as so many HUG members say, it is the striving to be perfect and to make others perfect that damages so many of us and so many of those around us.

Now I live a less than perfect life. A life with tinges of guilt, but with a son who I love and who loves, me but there are regrets. As I was recovering we wondered whether to have another child and thought no, we wouldn't because if I were to become ill in that way again it would be more than either of us could endure.

My fear is to become ill in that way. In that extreme uncontrollable way and in that way that you cannot hide. I cannot bear the thought of my son seeing me in that state. For me it is beyond thinking and I know my friends routinely suffer in this way and I know that there should be no shame, but I cannot let this happen to me and those around me again, but I know of no way of preventing it as it is a part of who I am.

That is a sad statement to make, to find an illness and aspect of yourself so bad that you cannot bear to countenance its return, but it is true for me. It is one of my deepest dreads. I do keep well most of the time. Nowadays I have bubbles of illness.

Sometimes I am very tired and sad and sometimes I think I catch people reading my thoughts. Sometimes I yearn for the safety a razor blade can give me but these are just reminders of what it was like and although they may affect us, may make me irritable or distant or too tired to bother with people, they are less of an interference than the tiredness that working too much gives me or the distance created that being away from home because of work creates.

All those irritations and compromises to our ability to be there for each other, modern life seems to have created.

Many of the members of HUG have talked about being parents and there are a huge variety of feelings. For some people illness, though horrible, is a part of the daily life that the whole family has got used to. It is a natural part of life that should no more be shunned than anything else is.

Yes its sad and it is hard but the children have grown up with it, they know it inside out and they have adapted. They help out when they have to as a family helps itself all the time. They shrug off the playground silliness, the irrelevant levity that children have about mental illness. They have maybe even grown into a maturity to envy, and in no way has it diminished the feelings that they have for their parents.

For a few people becoming a parent has symbolised and created a way out of the illness and life that they are trapped in. Sometimes, in the turmoil of lives that seem cast adrift, people can loose the will and the vision of a way into a better life. The chaos and aimlessness of life, where hope is distant can sometimes feel like warmth that we can wrap around us.

Finding someone who loves us and taking on the responsibility of looking after new and fragile life, can give us joy and direction and can make our own lives, which had once seemed valueless, something that we have to learn to treasure again now that our partners and children have made precious our own existence.

For other people it is hard, really hard. There are people who have grown up children that no longer speak to them. People, whose children feel so damaged by the effects of illness that they have rejected their own parents and that must be so hard to bear.

I have also met many people who grew up with a parent or relation with a mental illness who, seeing the trauma of such a life shuddered to think of any future connection with such experiences they deliberately avoided the subject of mental illness, and yet as they grew up they too became ill in their turn. For some people this led to a change in attitude and an understanding of what their parents had been through and for others it just reinforced the sadness.

There are others who wonder whether it would have been better if they had given up their children. Maybe their children would have suffered less and maybe there would have been less of a legacy to pass on. There is almost a catch in the voice when we talk about this because it has been so hard for some people.

Reasoned words about an illness do not help you when you have to explain to those that you love beyond anything that, even though you love them, that sometimes you want to die, to leave the world and those around you who you may feel that you have profoundly let down. It is unexplainable this, isn't it? This feeling of failure, this realisation that the one thing you think that you can do, to be there for your children, is not something that you can any longer guarantee to do.

In our round of HUG meetings we met members whose experiences are beyond my imagining. I remember one member, a quiet soft gentle woman talking of her bewilderment at finding her child put on the at risk register. There was a leap that couldn't be made, you looked at her, it was so obvious how deeply she loved her children, that she cared deeply for them and yet she felt that she had been labelled as bad, dangerous and as someone to be watched. It was so easy to see how wounded she felt how much her world had changed in its once familiar foundations and to see how easily despair now came to her.

Then there was a single mother who burned with rage. Not only did she suffer from mental illness, but her children also had problems, and her life was a long battle to get the very best for them. And yet despite her desperate struggle to keep going, her children are sometimes taken into care.

To her Social Work is the source of a series of impossible standards that she cannot live up to. The society of which she is a part seems to be aligned against her. She feels that she is fighting an impossible battle to keep her family together and she hates those that seem to prevent this happening and in her anger attitudes harden and the action she would do anything to avoid sometimes seems inevitable.

We have some members who have lost their children and it is beyond me to describe their loss. How do you ever come to terms with the fact that your baby has been taken away, that it has been put up for adoption, that this life that you created, that those eyes, those clutching hands are no longer reaching for you, that you are not considered capable of bringing up your child. Some of our members were wildly angry about this, others grateful for the assistance that they had been given to try to prevent this happening but so wounded, so lost and so sad.

As I write these words I feel that my experience is insignificant. My son has never been at risk in the eyes of other people, but a topic that I have struggled with over the years, has been how to tell him about my illness. As I said earlier I want to be perfect in his eyes. I want to be strong and caring and kind and to say that I am mentally ill, that I really am the weirdo or the psycho of his playground chatter, it turns worlds upside down. Stigma starts very young and affects our own children.

I gave an example of this at a conference a month ago. In two days of the summer holiday my son found his favourite lollipop featuring strawberry psycho and banana panic, my mother in law drank from a bottle of loony tunes water and I picked up a jar of insanity sauce from the supermarket. To ally myself with all these inaccurate, negative and laughable images means that we will have to see each other in a new and different and possibly frightening way.

Many members of HUG have no choice about their children knowing of their illness but for some of us it is a hard topic. One of our members told how she could never tell her child that the reason her husband died was because he committed suicide and how later she kept her own illness a secret. The trips to be sick in the bathroom were excused as a constantly upset tummy. It became a growing shame that eventually just couldn't be told and, as we talked in our meeting she wondered whether life would have been easier for both of them without the unsaid words floating around darkening the atmosphere, remaining forever unspoken now that her child has also died.

For me it is like this -"daddy has schizophrenia" used to be a little unspoken thing, something that just didn't get said. It wasn't the time or it wasn't relevant or he was too little. Now it grows, it is a wedge in my life with undue importance. I no longer know how to make it a little thing.

I no longer know how to make it a casual part of the conversation and yet my conversations with HUG members have now convinced me that I must. So many talked abut how much it helped their family that their children knew about mental illness and that they learnt about it. There was no awkwardness, it was no big thing to keep away from and that sounds great to me. That is the lesson that I have learnt from our members.

They are very keen that their children learn about it at an early age without the subject being made into a drama or a "we have to sit down and have a talk" sort of thing. They need people who will help explain. They need good quality fun tools that they can show their children to help them understand and once their children do gain an understanding, they need to know that their children can get their own support for dealing with their feelings when life with their parents becomes hard to cope with.

Earlier I talked about how my wife and I decided not to have more children after I got ill. Many members of HUG have said that the fact that they have an illness that may have a genetic component stops them having a family. I do not know what I would do if my son grew up to go through what I have gone through.

We all want "the world" for our children and dread the thought that they may have a life of struggle. The thought that we might be the cause of suffering in our children is a dreadful ache inside ourselves. However, by the time I give this talk my wife and I will have just met with the paediatrician, psychologist, head teacher, learning support teacher and occupational therapist to talk about how my son can cope better with life and school, and as I write this I feel my throat close on itself.

Is it possible that I or the material that makes me who I am have caused his sadness and anger? He is only nine years old and already he is getting labels, becoming part of the system, being the subject of professional debate and review. I fear what he is going through and hope with all my soul that it is not because of me. It is a cloud we are aware of that influences and saddens our family.

I am reaching the end of my talk and I'm aware that it is all about sadness and pain and I don't apologise for this because mental illness is about pain and the guilt and anguish that can occur when we bring up our children whilst dealing with illness is hard to bear, but as I said at the beginning it is also a non issue.

Being a parent is not a rosy garden and being a child is not a bright fairy tale. In Hug we are aware that we are not perfect, just as no-one else anywhere in the world is perfect, but we bring all the love and tenderness that we can do to our children just as every one else does and sometimes it is great and sometimes there is suffering, just as there is in all families, like I said - a non issue and yet despite this a very real issue.

Mental illness is regarded as a disability. To have your children taken away because you are disabled is very wrong even if it does have to happen, to be regarded as suspect parents because you are disabled is very wrong, to feel guilty because you have a disability and children is wrong.

Some of our members have had absolutely brilliant help with bringing up their children and in getting assistance with their children when they are in crisis.
There have been social workers and CPN's who have spent hours helping parents come to terms with what they are going through, making sure that any hospital admission makes the least impact on the family and arranging for the practical support that can keep a home functioning when we find it hard to function ourselves. But it feels as if we are just at the beginning of this. We need this to happen routinely. We need to be sure in our minds that the help we are given always reflects what we are going through and not the cultural perceptions that those who help us may have about our abilities to be parents when we have an illness.

As a last word, our psychiatric hospitals rarely have children in them. There are neither the facilities nor the will for us to bring our children to such places. When there are children running up and down the corridors of our hospitals, when it is totally accepted that children are taken to see their parents and relations when people are ill, then being a parent and also having a mental illness will really begin to be a non issue.

Thank you

 

 


Highland Users Group
Tel: (01463 723560) — Email: hug@hccf.org.uk

 

 

 

 

 

HUG Talks - Being a Parent