I wrote this letter in 2022 in an attempt to explain my position to my loved ones, mental health services and the world in general:
Dear Mum, Alice and Nisha,
OPEN LETTER – PART ONE
I’m writing to you to let you know what’s happening in my life at the moment; what I’m up to and the direction I want to head in.
I know I’m not always very good at staying in contact with the people who care about me but this has more to do with the illness I suffer and less to do with a lack of interest in them on my part.
For many years I’ve been confused, lost and distressed. As you know psychiatrists have diagnosed me with paranoid schizophrenia which is an illness I do not suffer and never have. I consider myself to be depressed, confused and traumatized by extreme life events which were not realistically under my control. I do not suffer from the delusions and hallucinations which characterise psychotic illness and never have. I also do not suffer from the negative psychotic symptoms which some people say I do. I am often withdrawn and lacking in motivation to do things. This has more to do with numbing effects of depression and an emotional block which has afflicted me since adolescence than any page a doctor can tear out of the DSM. Despite this you may be able to detect from my style of writing the hotch-potch ”word salad” of the thought disorder which plagues my daily existence.
A number of different psychiatrists and psychologists have said a number of different things about the nature of the illness I suffer over the years and have several different perceptions of my history. Some of it winds me up so much I feel that my skull might detonate and some of it feels like a clean insight into the truth. There are also shades of grey. Some of it has been helpful and some of it has been deeply unhelpful and disturbing to me.
They call themselves service providers and refer to me as a service user. I’ll work on myself within what they are doing to try to make myself better. I’ll take things from them which I find useful and reject the things I do not. I’ll also call upon the wisdom my life experience has given me and listen to feedback from friends like you, and my family. They can write whatever the hell they like in their files. I’ve managed to negotiate the levels of medication down over time so the side effects are no longer crippling and undignified. I am not on a crusade to come off the medication like my younger self so no one needs to have a panic attack. As far as my experience of this service goes, I think I’m going to gather myself together a little more then ask to see the manager.
TO BE CONTINUED...
Yours sincerely,
Ben
Here are some of the responses I received:
From Alice Woolf
Ben -- I'm so impressed by your strength, courage, dignity and intelligence. This letter is yet more proof of what I already knew - that you see your situation clearly and rationally and want to find a way forward. This letter wasn't only well-written, it was moving to me personally to see the way in which you continue (with real grace) to move beyond the things that have been written and said about you. You would be forgiven for being bitter but you are not. That alone is a huge thing and something that I deeply admire in you. Cont'd in email.
Lots of love.
Your friend,
Alice xx
From David Valdemar Krogh
From a distance I just thought you were a grumpy sod 🤷♂️
I’m also really impressed by this as a cathartic expression - I’m not surprised in some ways (artists tend to suffer these maladies) but in some others it’s strange to hear terms from the care sector applied to you. It’s apparent from your writing that you’re going through some very strange days, but at your core there is the will to create something artful out of the journey.
It’s what artists do.
There’s always something compelling about your poetry, photography and posts. From my distance, it’s not inconceivable that some day you’ll be a vaunted name… “arrive” as they say.
When you do, send me a map, for fucks sake.
From Nisha Chauhan
Ben, Alice has said everything that I second. I have always seen these great qualities in you and have admired your resilience through the years. And no one knows you better than yourself, regardless of their qualifications or expertise. For everything that you have endured and the strength that it has taken, your path from here can be onwards and upwards. Believe in yourself, know that you are worthy and that you deserve a life of your choosing. Let love not fear be your supporting thought behind all the other thoughts. You are the creator of your life and nobody has the right to label you or tell you anything different.
Thank you for sharing openly with me. Your friendship and you; I cherish.
Lots of love x
From Di Foster
I second all that's said. Ben I know you from the caff and Steve - your letter is so clear sighted and not a 'word salad' at all, this shows a huge amount self awareness that so many lack. Hang on in there and please don't let it get you down. Things get to me at times. We can all look strong from the outside. "Everyone has their own hell' says a poster I have ...I know that sounds dour but it actually comforts me to know we all struggle. From one Doncaster lass to lad...much love
Ben Preston 