Last week I was over the moon to see the ‘Hearing Voices: Suffering, Inspiration and the Everyday’ effort myself. I have blogged before about how myself and a group of other young voice hearers created art to be displayed. In absolute honesty I was expecting hushed rooms and many glass cases; maybe with undertones of pity for us voice hearers. I was pleasantly surprised to find colour and sound and passion. Yes: it actually makes voices appear as just a part of life that some of us happen to experience. In the exhibition is tons of information and even areas where you can stand on a carpet to hear a simulation of what it is like to have voices in your head. My wonderful Learning Support Practitioner, K, managed to see the exhibition while in Durham on holiday. She said: “it makes hearing voices seem like just a part of being human”. This message is exactly what myself and the other young people had hoped to get across in our work. So what was the best bit? For me it must have been seeing the work of young people who struggle so greatly at times alongside original manuscripts of Virginia Woolf and Julian of Norwich who experienced the same. I felt pride to have my work next to creatives like Wolf and Beckett. Overwhelming pride for the project and all it encompasses for people who hear voices. Maybe, just maybe, alongside the horrific pain the experience can cause, there is a vibrance, passion and creative flare that we can share with the world or simply use to get by.
Want to see it for yourself? The exhibition is open until the 26th of February 2017. You can find out more here.
On Thursday I was honoured to be asked to speak to a group of young people who, for one reason or another, are unable to attend school regularly. They meet in a brightly painted bungalow ominously named as home of ‘The Prevention Services’. There were five young people all facing very different issues to do with school- bullying, anger, frustration and fear being the main reasons for not regularly attending. This general anxiety surfaced in the form of long absences and sometimes exclusions.
Talking to the group was great. As someone who had a lot of trouble attending mainstream school because of intense anxiety I knew what I would have wanted to hear in their position. I told them that they may be terrified of school but they should never, ever, be terrified of learning. Hatred of school does not equal hatred of learning, and if you keep learning there is a way through the tangle of school refusal. I hope I was able to be of some use to them.
It was hard to imagine these bright, quirky and talkative young people not thriving in school. We talked about the problems in the school environment; it is too big, with too many people and holds too greater focus on discipline. One young person spoke about anger problems and how in mainstream teachers would rile up the situation more by using discipline rather than redirecting or calming down the rage. Since moving to a specialist unit this young person has access to these strategies and enjoys learning much more. Before the unit they had been excluded a dozen times. Not everyone’s anxiety showed through acting out and anger, for some it caused them to turn inwards- too scared to speak to anyone or walk through the gates.
The young people’s idea of an ideal school was surprisingly achievable. A more college-like setting where staff respected students and vice versa. They would want to be treated as individuals with different learning styles. The classes would be small and with more hands on practical learning. There would be more support because, to my surprise, some of the young people had made it to year 9 without knowing if there was any pastoral care in their school at all.
The project involves making an animated film in order to explain to professionals the miriad of reasons why a young person might not be attending school. This sounds like it couldn’t be more needed. We started styling objects out of plastercine. We made a foreboding looking school gate and a young person contributed a skull on a stick to place next to the gate. Across the table a young person made a plastercine noose. I saw how not attending school could be both a necessity and an agonising decision to make as they are intensely aware of the pressure it puts on their families. They feel immensely guilty and sad. At the end of the session taxis pulled up to take the young people back to their education providers. One young person who had pre-arranged to go home instead due to an injury went wide eyed:
“Is that taxi for me? I won’t go. I’m not going. I can’t.”
“They’ll kidnap me.”
School refusal and low attendance is not straight forward. These are not ‘bad kids’. They have anxiety, precarious home lives and aren’t equipped with strategies to get through. School adds steam to the pressure cooker. School refusal is far more complex than many would believe.
I’ve blogged already about the ‘Listen Up!’ workshops for young voice hearers which I was lucky enough to take part in. All the young people from workshops previous met for one last time in Durham to finish their pieces ready for exhibition. Without further ado, these amazing pieces can speak strongly for themselves…
Thank you so much to the Wellcome Trust and Hearing the Voice for giving time and space to simply be.
The finished pieces and more will be on exhibition from the 5th of November at Palace Green Library, Durham University.
You might have seen my previous blog where I expressed my joy at going to a creative workshop especially for young voice hearers.
I was absolutely over the moon to get an email saying that due to the high demand there would be one more workshop at Art Link Leeds.
The amazing Mary Robson came prepared with canvases and mirrors to make one of the ideas from my book into a piece of art. I was (with safety precautions taken) given a mallet and some mirrors to smash.
On the first canvas I wrote in between the glued on shards a Groucho Marx quote: “Blessed are the cracked for they let in the light”. I have always found this a really inspiring quote- no matter how damaged or cracked you get in this world, the light will still come through.
The second piece was more personal. My reflection (literally) on trauma, illness and affirmation.
“The pieces stay together because they have to. They don’t work together quite the same though. We are all still me, we just got splintered into other things too.”
It was great to meet up with Rai, Mary and the two other participants again. Smashing mirrors was highly therapeutic; and I’ve decided it isn’t bad luck as it is for creative purposes! Next stop- the exhibition in Durham!
If you read my last post you will know that recently I have been on a mission to find other people, particularly young people, who see visions and hear voices like I do. It was while googling for voice hearing and the arts that I came across Hearing the Voice. It just happened that in browsing the site I found that they have been running workshops in order to create an art exhibition called “Hearing Voices: suffering, inspiration, and the everyday” at Durham University. They are aiming to create two cases for the exhibition- one of young people’s experiences of voice hearing and vision seeing and another of what young people would like others to know about these experiences. All of this will be portrayed through the arts.
So to Leeds I went and (joyously dodging roadworks) I arrived at Artlink. The two co-ordinators were lovely ladies; Mary Robson (a creative facilitator) and Rai Waddington (who has experience of voice hearing and provides training on the subject). There were also two other young participants and, funnily enough, one had travelled all the way from my home city! The other two girls had also been to the workshop previous but were incredibly welcoming. The group started with a discussion on what hearing voices is like and the unhelpful things people have said to us as voice hearers in the past. The notes speak for themselves.
What really stuck out to me during this discussion was how little people understand us. How we are constantly having to explain ourselves or even defend ourselves. Whether it is an underestimation of our ability, a snide comment or an off hand ‘suggestion’- people’s responses can really hurt. To talk to strangers who experience the same as me was amazing and hearing someone else say that they know what it is like for reality to not make sense at all sometimes was extremely validating. To meet complete strangers yet share such personal experiences is a very powerful thing.
I believe arts can change everything for people with mental health problems and I believe it fiercely. This belief grew when I saw the things people had produced when given the materials. Mary provided everything under the sun you could possibly need in a creative flurry- wooden boxes to decorate, tiny blank faced cloth dolls, sharpies and stencils. We were also given a brown scrapbook each. Later Mary said: “These aren’t just books, they are time and space to create and simply be”. How true that is. The fact that this lovely book had been gifted to me by these lovely people, who know and understand that I’m this misfit person that the arts can soothe, was amazing. So for the next two hours we all worked on our books, drawing and writing poetry about our experiences.
The workshop was amazing. I could have stayed there forever and I cried several times at the pure ‘wow’ of it all. There was chance to talk to the lovely Rai 1:1 and her story is living testament to the fact that people who hear voices can still fly high. I’m likely going to meet with Mary again to turn one of the ideas in my book into a physical piece of art. Everyone in the group is planning to go and see our work at the final exhibition at Durham in September. I’m so glad that I found this project, purely by chance, in time to take part. I am however intensely aware that these opportunities are few and far between and for every person who found the workshops there are many more who did not.
We need more places like this. Places where you can be with people who understand you and who share a common interest in creating. The work we did as a group had an impact on us all and I think the session was a real game changer for me. I feel stronger than ever before that having access to the arts can help people with mental health problems. I am certainly going to find a way to fight for this for everyone who needs it.
Yesterday I had the joy of going to OCD-UK’s national conference. I found out about it completely by chance during OCD week last month. The conference was in my nearest city, York and I didn’t know what to expect. Maybe a lot of anxious-looking people talking about what makes them anxious. A bit like the poem ‘anxiety group‘ by Catalina Ferro. But It wasn’t like that at all. The people looked and acted normal and were, by all accounts, lovely. During my time at both my CAMHS units I was always the one who had OCD- or OCD had me. It was my primary diagnosis and the one that had dropped me into the white-walled rabbit warren. None of the other patients really understood my condition as nearly all of them were there for depression. It was lonely.
So for the first time I was surrounded by people just like me. As the fantastic Ashley Fulwood, CEO of OCD-UK, told me: “Today you are normal!”. The speakers were fantastic and I was particularly moved by Ian Pulestone-Davies’ honest and humorous account of being an OCD warrior and actor. Ian plays Owen from Coronation Street, so I made sure I got a picture! He was also pretty keen to help out with my various creative adventures so watch this space!
I attended the teen workshop where there were a small gathering of young sufferers and their parents. We mostly played ‘who has ever’ which could best be described as a drinking game involving swapping seats rather than slugging down ethanol. “Who has ever… Had a hand washing compulsion?”, “Who has ever been hospitalised?”: this simple exercise made me see I wasn’t alone. As a group we also also created these fab images of our ‘OCD bullies’. I paticularly liked the one that has been viciously scrunched up! The talks and workshops were all recovery based. At times I felt a little sad because I feel that my recovery from OCD is hindered a lot by EUPD. Where generally exposures are the way forward for OCD recovery, EUPD means that an exposure can quickly put me in a very dangerous place mentally. It’s why I’m currently not receiving any CBT or ERT from my community mental health team as they try to stabilise me. I wish that my conditions didn’t make a horrific montage of confusion in my head.
It was great to be around people who properly ‘get’ OCD. It was fantastic to air some of the pent-up frustration from every chat that someone says they are “so OCD” for checking their hair straighteners are turned off. Anxiety keeps us alive- it makes sure we check the straighteners so we don’t die in house fires. That’s what anxiety is supposed to do. OCD is when you have to do the same thing again and again to momentarily lift the all encompassing fear. Recovery is possible- but it’s hard. There is no cure. You just have to fight for your life. Days like today make me think I can do this. Watching Ashley lick his shoe made me desperate to get there. I’m determined.
At the bottom of the washing machine is a very unappetising pulp stuck onto the ankle of my jeans. It is one of those days where bailing on checking the pockets of my washing pile has come back to bite me. These sluggish remains of yellow paper have been hiding in the back pockets of my jeans. They are instructions for my brain.
It may sound bizarre but for the last few months when going out I have made myself a crib sheet to follow on how to function, like the kind you would need if you were using a very temperamental second hand computer. On some sheets are just the basics- “You need to get the number 6 bus before 5pm” or “return library books so they don’t fine you”. On others the detail is much more and without that scrap of paper I wouldn’t be able to get out of the door.
Take this weekend for example- Gay Pride. A familiar bus ride and then a one hour train journey to a familiar city. A whole day out, which I had been mentally planning for a fortnight. My yellow piece of paper is A4 and double sided. It gives a complete itinerary for the day with planned times to make sure I eat something to avoid blood sugar crashes. It even suggests what to eat and where from, avoiding foods which will trigger OCD thoughts and cause unnecessary stress on an already daunting day. There are multiple choice, step by step instructions of all the things I usually do without batting an eyelid; worst case scenarios, distraction ideas and helpful thoughts to tell myself. It all sounds odd. I know.
But actually this is a coping strategy that I have learnt and it works. It means I can get out and about and do things I want to do. Granted with limited spontaneity. It isn’t something that I have been told to do by any therapist, it’s just what I taught myself. There have been, and are, times where I need much more than my plans. Backpacks with enough water to end a hosepipe ban and enough hand sanitiser to supply a particularly hygiene conscious surgeon operating in a swamp. Sometimes just to go down to the shops I take half my sensory box and something to cuddle. I won’t use even a quarter of these things but it’s knowing I have them which allows me to go out.
My point here is do what you have to do. Survival, backpacking mode. At the end of the day nobody knows or cares what you have in your bag. No one knows how much you have planned the day or how many things you had to do things to make it happen. Do what you have to do to get out the door and have a good time. I had a pretty awesome time at pride, my plans worked fine and I didn’t use any of the listed distractions for train journeys or the second battery pack for my phone.
I repeat I am not a therapist, or qualified with anything other than experience. I just want to share what I have found to help my neuroboiler to keep ticking on. Maybe it will help someone.