'Dear Stella': An award winning Remembrance letter IN Remembrance Week, it is fitting for Support in Mind Scotland to publish a poignant letter about schizophrenia entitled 'Dear Stella' by member and author Jenny Robertson, featured in a book which won an award in the category of World War 1 remembrance in a UK-German writing competition. Jenny (pictured above) who also wrote the book 'Uninvited Guest - A Family's Journey Into Schizophrenia', explained: "The piece I wrote about schizophrenia to a fictitious great great grand-daughter in 2114 won a UK/German writing competition, and is published in The Book of Plans, Hopes and Dreams. "This project was the idea of Dr Rebecca Bilkau and Dr Michael Bilkau and was funded by the European Association for the Education of Adults who awarded it the Grundtvig Award in the category World War 1 remembrance. "The brief was to write two letters, to someone who was alive in 1914 - with proof that they actually lived - and this letter into the future." Jenny's letter is one of 52 very personal and touching texts of people from Britain, Germany, and as far afield as Australia, India and Iran. The Book of Plans, Hopes and Dreams is available now at the project’s homepage (as a pdf, free of charge) by clicking here Original copies of the book are open to the public and can be read in Blackburn Cathedral, and in Dom Braunschweig, Germany. Here is Jenny's letter... Dear Stella, Perhaps this isn’t your real name, but because it means “star” I have chosen it for you, my unknown, ever so many greats granddaughter. In 1914, you might have been called Ethel, or Mary, or Primrose, or Eliza while in 2014 names of semi-precious stones have become popular for girls: Amber, Jade, Ruby… I don’t know which names are most popular in 2114, but I am calling you Stella because you are a star of hope that life on dear Mother Earth is still shining bright with amazing possibilities. You may even know what life is like on distant stars! I wonder what kind of house you live in? How do you heat your home? What kind of clothes do you wear? How do you style your hair? Do you read books, watch films? I am sure you have amazing new technologies that I can’t even begin to imagine. What are your hopes and dreams, my dear many greats grand-daughter? I am imagining you as a girl of fourteen, born at the beginning of the twenty-second century. Writing to you from 2014, there is so much to hope for and dream about: freedom from killer illnesses like cancer, for a start; no more dreadful car accidents that wipe out young people; peace in the world and enough food and clean water for everyone… Oh, so much! But I shall choose only one thing. No more schizophrenia! I hope you will reply, “What’s that?” Well, the name was made up in 1911. It comes from two Greek words which mean “splitting” and “the brain”. It’s an utterly stupid name which no one can spell and it causes huge misunderstanding. People talk nonsense about having a “split personality”, “being in two minds”, “living a schizophrenic life-style”, things that have nothing to do with the reality of this illness which is like living in a horror film which doesn’t have any lights up at the end. Faces suddenly seem distorted. Thoughts and perceptions are disturbed. Let’s say you get on a bus (that’s a vehicle that transports people with many stops for them to get off and new people to get on. It has a driver who also checks passes and takes fares.) Well, on the bus you spot a complete stranger and you suddenly feel that this totally unknown person is thinking bad stuff about you and you feel terribly afraid. You get off the bus and you hear noises inside your head which make you think an enemy is coming to attack you. Yes, even when you are stuffed with drugs. And, if you are a lovely young mother, doting on your darling baby, more often than not you will lose the right to care for your child. This is your back story, Stella. It happened to your great-great-great-great grand-mother a hundred and twenty years ago I am sharing this with you because this devastating illness is, alas, deep in your genetic make-up. I mentioned cancer – and in 2014 cancer is still a killer disease, and especially terrible when it affects a child. But there is hope for cancer – I got through it myself. Schizophrenia destroys life in a different way. It takes away the ability to function and there is no cure. In the nineteenth century doctors could describe a heart attack but did not know what caused it. In 2014 it’s the same with the deep processes of the brain. No one knows what causes the illnesses once called madness and the one labelled schizophrenia is particularly difficult because sufferers don’t understand that they are ill. They only know that the world has become a confused, terrifying place. Here’s what your great grandmother three or four times removed wrote when she was nineteen: I hate life when I used to love it. I feel threatened by everyone. I feel insecure, empty, vulnerable, useless and inadequate. I have no future left. All I can see is this painful, self-perpetuating vicious circle. “There’s only miserable funding for mental health, even though 1 in 100 people worldwide suffer from schizophrenia” Schizophrenia hits young people right on the verge of adulthood, negating their abilities, destroying their hopes, denying their dreams. They feel life slipping away and no-one can tell them why. The only treatment, in 2014, is a mixture of drugs with a huge catalogue of unpleasant side effects that produce their own problems. And do you know something, Stella, the really awful thing is that no one cares. There’s only miserable funding for mental health, even though one in a hundred people world-wide suffer from schizophrenia and one in four endure some sort of mental health set-back. If schizophrenia does hit the headlines it’s only in lurid, negative ways like “Schizophrenic killer…” The sad reality is that more often than not, the afflicted young person only harms him or herself. Why? you may ask. Well, I think it is because everything has suddenly shifted focus like a camera lens (do you still use cameras to take pictures with?) that needs to be adjusted, but never is. In 1914 when people felt like that they were locked up in institutions, pushed into a padded room and tied up in garments called strait-jackets. In 2014 they are neglected until the symptoms spiral out of control, then they are forcibly injected into their backsides, deep between muscles, with a liquid that is so thick it’s hard even for a well-trained nurse to do it gently. This medication makes their muscles grow rigid. Their hands and legs shake. They are twenty years old and they start to dribble and sleep… and sleep… I hope so much that all this will seem as appalling and as unbelievable to you as the whole nineteenth century thing about lunatic asylums does to us. People were actually chained up and put on public display. But the sad reality is that until it hits your own family there is very little awareness about this awful illness. It isolates the sufferer, but it isolates their family too. Friends back off. Even close relatives don’t know how to cope. That is why, when I put on my poppy in 2014 to remember the dead of the war which began in 1914 and killed so many young people, I longed to create a rainbow coloured rosette on behalf of young people who are consigned to a life in the shadows, a sort of living death. Schizophrenia has destroyed more young people’s lives than two world wars put together. I think they deserve some sort of token, don’t you? So, darling Stella, I am writing in the hope that in 2114 the rainbow of recovery will have long since broken through the storm clouds of madness and you will read this with compassion and also with a smile.