h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Hi dear friend,

I read your entry with much emotion and interest. Your solution was to build a shell from which you are slowly releasing yourself.

My solution to having a much loved son develop a chronic mental illness was to cry and weep - until I realised that this was only destroying us all. I found other solutions to cope with the incredible pain.

Now,I wonder if I am building my protective shell?

You have given me much to ponder over and think about.

With affection to you all,

AR1

Everyone finds their own way, I guess.
My experience came and went. It made permanent changes in all the family, sure, but we weren't even ready for Alex growing up when suddenly we didn't need to be.
Don't worry about crying. The only tears that need to be avoided, I think, are tears of self-pity.
If you're like me and others I know, you'll come to know when your progress is positive, when you're just treading water, when you're not coping. So will those close to you. Share it all; fears, despair, unspeakable emotions, everything. Face it all too. Denial only works as long as its incomplete, I think.
I don't want to preach. It's even a little bit dangerous to pretend special knowledge or experience. The support group for Alex's condition sometimes call on us as bereavement helpers, but never as dealing-with-life helpers. Very wise, I think. Whether we ever really coped, we're not coping any more. Not in that way.
Moving on and being strong are different things, as it says in a treasured letter from someone who really loved Alex.
I would never say my way of dealing with Alex's life and death was right. Or wrong. Or even in my control.
Still, like I said, there are huge numbers of people who'll help if you only accept them, and ease them through their awkwardness.
You've got one more now, yeah?
Take care and stay yourself
Pin

Thank you my dear friend,

I was wondering whether my way of coping now was indeed to feel the anger that you felt at the beginning.A Completely natural reaction I think. Also I think that each one of us tries to cope as best we can.

I feel however, that I am turning into a cantakerous, old biddy!!. Something I would not like to be remembered by. The problem however is that mental illness carries a stigma which is as old as civilisation itself, and that is the most difficult thing to cope with.

I have always believed that in order to remove the stigma I should always be upfront with it and have never tried to hide the nature of my son's illness. I often wonder whether I have not done him an enormous disservice as so many people are so judgemental about it and think that because he suffers from this illness he is all sorts of things. This naturally enrages me!!.

Regards

AR1

The stigma-thing does make it hard, I know.
The thing that helped me most in that respect was a bit perverse. I had a good soul-search one day and admitted to myself that I'd shunned people with behavioural difficulties as cynically as anyone else. That was before it happened to me, of course. That realisation gave me the strength to forgive others, and that was really when all the pent-up and pointless anger began to recede.
That and the recognition that people who were opinionated, undiplomatic and even hurtful often really did care even so. There's no book of etiquette for this kind of thing. The way people come across is secondary to the fact that they're there for you.
Rage? I read something the other day, attributed to Alistair Campbell of all people, that says it all. Before you lose your rag (paraphrasing), be sure that it stands a chance of changing something.

You're thinking; that's the main thing. As long as you fear being a cantankerous biddy, you're not one.
The first great trick of life is to become someone you yourself respects.
The second is to be true to that self in times of adversity.
It sounds like you'd achieved the first before all this.
You can pull off the second too.

Pin

Dear Pin

Oh dear!. I thought that I had!. Perhaps I haven't.

You see practically all my life I have worked with the chronically mentlaly ill. Well at least for forty five years. I have not had the good fortune to meet those opiniated people who were really there to help me!. In fact in the town where I lived in South Africa, and where I started an organisation which cared for people who had not only a psychotic illness but were also dependent on drugs and/or alchohol, I really did work in practical isolation. There were all sorts of reasons for that the principle one of which was the fact that I truly believe that if one has a mental illness it is incredibly difficult to stick to rules - more difficult I believe that for those who appear not to have.(a mental illness)
Therefore, if one of the residents broke a rule of the house I would invariably give them another chance. This the local mental health organisations found impossible to deal with. I thought that if I kicked the residents out because they had broken a rule then if they promised to try and do better the next time I HAD to believe them. and I did believe them - until the next time. But honestly, Pin, the next times did get less and less. When I left there were twelve men living in two houses where they had some semblance of comfort and independence and self respect which they had not experienced since falling ill.
I know one thing and that is that I am not a leader. I have ideas, I have the ability I believe of understanding and sharing people's problems. But put me in a leadership role and the whole thing goes pearshaped!. Still I have done my best - hopefully I have made some changes in the way people look at these particular problems. But I long for a leader who will understand what I am trying to do and take over the diplomatic, role or trying to make others understand what I am trying to achieve!. I wonder if that sounds lazy, or complacent. Perhaps it does, but I know that I do not have that talent. Happily now I do have respect for myself and do not agonise about not having the ability to persuade people that my particular way is A way of managing chronic mental illness.
Thanks for all your help and encouragement. I shall try and not build too secure a shell around myself!!. And I am so glad that you have found peace and happiness and have really triumphed over what was one of life's most difficult problems i.e. having a child with an illness which is virtually incurable.

With much warmth and affection to your family,.

AR1