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
