Category: Adventures

Proud: Hearing Voices Exhibition

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.

img_2539

Want to see it for yourself? The exhibition is open until the 26th of February 2017. You can find out more here.

School Refusal Is Far More Complex Than Just Truanting

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.

“Young People Hearing Voices; Suffering, Inspiration and the Everyday.”

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…

A small wooden box has a white plastercine figure stroking a cat. The back of the box is decorated like a garden. In the sky it reads 'Bring me to Reality'

Black letters on a white poster reads: Just Go And Get Your Facts Straight

Black letters on a white background read:

On a white background the outline of a head is in black. Inside in black letters are the words:

A purple background has many many circles in yellow, green and lilac. They cluster towards the centre where there is a white clearing. In the clearing is one single black dot.

On white paper in red bubble writing is 'Everyone has a unique story.'

Three boxes, one larger one filled with colourful circles has a circle of green fabric dolls in front. A bubble coming out of one doll reads

A girl's head in shades of blue. She looks non expressive. Coming out of her head are splashes of colour and three birds flying out. Inside a blue box are several dolls. They are white and black splattered, The one at the front of the group is looking out with big dark eyes. The box is wrapped in purple thread so it is like a thick cobweb on the front.
img_1386

img_1374

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.

Listen Up! Workshop #2- Pieces and Reflections

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!

A Creative Workshop for Young People Who Hear Voices or See Visions

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.

"Aren't they just imaginary friends that never went away?" Don't use the fact I hear voices to back up your beliefs. They've got sanity around them like a bubble, they don't get as hurt as we do. "Oh we all have a voice inside our heads!". "You'll never have children".

"You're mental" "Just ignore them" "Have you tried eating kale?" Voice hearers don't always do what the voice is telling them. When you are really hurt by people you just talk to the voices and do what they say. "It's like Butlins but bonkers". "Voices don't change who you are". You are just attention seeking.

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.

An Obsessive Compulsive Conference

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.

Do What You Have To, Get Out That Door

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. 

 

Project Wormwood

There is nothing that I could be happier to receive than a project; something to get my teeth stuck into and to keep me focused when life gets blurry.

When I first arrived at *Cheery Lodge they told me that they had a storytelling workshop based around fairytales. I was angry and fought against going. My feeling was that they were tipping ‘happily ever after’ into us along with Prozac and so I said no and asked for therapy. There is no such thing as happily ever after. 

The next week however boredom got the better of me and I decided to go along. It was then that I met Cath Heinemeyer, a PHD student and storyteller. Though I was aware that fairytales outside of Disney aren’t all rainbows and fairy dust; I had certainly never ventured into traditional folk tales or the shadowy world of The Brother’s Grimm.

The process started with a very strange story called ‘Wormwood’ by Italo Calvino. It is the story of a woman who started life as a baby left to die under a wormwood bush. Wormwood is controlled entirely by other people and their actions. I became enthusiastic about the story quickly and after hearing retellings and the original several times I was wanting to work with it more. Cath had asked everyone in the first storytelling workshop to write a poem from different characters to Wormwood and her responses back to them. We soon had poetic conversations between characters that varied hugely in style and warmth.

Cath then asked myself and another patient to continue working on the story with the aim being to perform at a local festival celebrating arts and mental wellbeing. We met several times in various cafés and bookish environments- pouring over many sheets of paper and fine-tuning the tiny threads of each relationship within the story. Week by week we worked together to make the story into a script, which would later become our performance. I felt a connection with Wormwood and after looking through my poems I found some that I hoped would bring emotion to the character that we knew very little about.

In the end it was just Cath and I who did the performances. We were aided by the little hand sewn puppets we created and we also had the fantastic input of a local theatre director. The audiences for all three performances were fantastic and listened throughout. Many admitted that they found the story strange but fascinating.  

I particularly loved to get feedback from those who had experience of mental illness themselves and hearing that they could connect to my poetry was amazing. It was the first time I had every performed my poetry live, and it certainly won’t be the last. I got a real buzz from it. The poems I used were ‘I am Exhaled’ and ‘We’re All Rare Anyway‘ accompanied by my letter to mental health professionals.

There were so many amazing things going on at the Love Arts festival that it was impossible to choose what to attend. So many people were there with so many links to mental health and the arts. I am so very honoured to have been a part of such a project and I am so gateful to Cath for the opportunity, and of course to all those who came to see us perform on some of the hottest days of the British summer!

At the end of the performance I repeat a line from We’re all Rare Anyway and tell the audience that they are all the most beautiful of creatures. It is at this point a basket of slightly battered apples get passed around with little tiny things to decorate them with and birth certificates. You can tell that these apples were made by very arty folk!


Now then… What next?!

It’s Not the Destination, It’s the Journey- An Imaginary Parents Evening.

Today I managed to go on some unescorted leave. It was sunny and subsaharan on the unit because the heating seems to be permanently on full. To say I was desperate to get out is an understatement and in my rush of excitement to go outside I forgot that I don’t know the local area at all. So armed with a very tiny map that I didn’t want to admit I couldn’t read; off I went. A member of staff had marked onto the map in red felt tip a short and simple route to the church and back.

It turns out that there are two churches in the vicinity of the hospital-and of course I initially went to the wrong one which was in completely the wrong direction. I asked for directions from an elderly lady who, after telling me how brave I am for:
a) being blind
b) existing
told me to follow the road until I came across a ‘horsey smell’. Sadly she declined my request for conventional directions. So myself and Noodle stumbled around trying to follow our noses to a smell that never came.

It took about an hour for me to find myself stuck in the graveyard of the church I had initially been looking for. Unable to find my way out of said graveyard and no one live to ask for directions I stumbled into what I thought was a big green field. There appeared to be dogs running around so I let Noodle go for a frolic while I tried to work out where we were and how we could get back.

Splash. A shallow river made itself known and Noodle in all her wisdom decided to swim alongside me as I paced the bank. Still lost I asked a woman for directions to ‘the school’ -which would then point me in the right direction for the unit. She decided to walk me there instead.

“Is there anything on at the school?” She asked as we walked.
“Yeah…” I say accidentally, having just realised that we are at the wrong school and that I’m completely lost. Why did this village insist on having two of everything?
“What’s on?” She asked.
“Parents evening.” I responded. I really don’t know why but that was the first thought in my head. I knew instantly how stupid this sounded but felt too paralysed with awkwardness to do anything. I felt like I had dived into a shark tank of social tension.
“On a bank holiday?” She asked with a slight tone of disbelief, clearly thinking that I am deranged or mourning some imaginary child who attended this school.
I mumbled something along the lines of “yes isn’t it ridiculous” as I kicked myself silently for putting myself in this mess. She eventually left me at the derelict school.

I must have walked miles around the village today because I have never been so completely lost in my life. But I couldn’t have been happier.

My life is bonkers sometimes but I do completely love it. There are many things worse than being lost on a sunny day with my furry colleague. Even if she does decide to go for a dive. I really do need to work on the awkwardness thing though…

I suppose I could use a cheesy recovery quote at this point: “It’s not the destination it’s the journey” etcetera etcetera. But don’t worry. I won’t.

IMG_2873.JPG

Peace, Weakness and Bravery at Summer School

As I mentioned last monday, I was at a Drama summer school last week. Luckily I got all the nervousness and fear out of my system the year before, where I was painfully unsure of myself until a rapid turnaround on the wednesday. By the last day I was filled with happiness and determined to return next year, and be brave for every minute.

So I did. I arrived at the train station and gave my assistance the instruction to find ‘someone who looks like they are running a summer school’.

“So I’m looking for someone in walking boots then?” he replied. I made a non-comital hum in response. But sure enough there was a group of theatre school goers, fronted by a man in walking boots.

Reunited with old friends and meeting new ones I was certainly in my element. The aim of the summer school is to create a professional piece of theatre within a week. This year our theme was peace. I was over the moon to be on the ‘flying colours’ course again, working with the same tutors and many of the same young people who I got to know last year.

I don’t tend to start a new paragraph when talking about my sight, frankly it isn’t worth the bother, but I will make an exception this time. Being the only visually impaired person in a summer school of ninety-nine can make you feel like a bit of a burden sometimes. Theatre is fast-paced and I hate being the one who needs to slow it down to understand what is going on or what I need to do. I was lucky enough to be in the course with the same tutors and many of the same young people as last year. They understood that I wanted to do everything that all the others were doing: no exceptions. People who are new to the theatre school quickly caught on to this too. The tutors are brilliant, and I get on with them so well that if I feel the need I can confidently say: “Don’t you bubble wrap me!” (it has been done). I met new tutors too, including an amazing lady called E who did her very best to audio describe things to me- leaving us both in stitches.

The first half of the week consisted of devising. We were given vague outlines for us to form our own improvisations around. When time was up we performed in front of the group whilst being audio recorded by P, our writer. I particularly enjoy doing this because I just let my mind go and I can be whoever I want for a bit.

The tuesday night is always a long one for writer P. He  stays up all night piecing the audio bites from his Dictaphone into a juicy meal of a play. This year this meant that he had to write until 5am, at which point he got the other tutors up to cast the script. The next few days were hectic, sometimes rehearsing until 11pm until our act was tight. This year the play was a series of satiric scenes on world issues. This included a classroom of dictators and a gameshow for how they can kill their people best. It was very dark humour, but above our heads shocking facts were projected; showing how our acting didn’t stray so far from the truth after all.

Weaved into the summer school is religion. I am only semi religious, but I enjoy this part a lot all the same. It is my chance to have conversations with people my age I don’t usually get to have. For example: “Was Jesus really the ultimate image of peace?” and hearing those who just announce openly: “Jesus was really a pretty cool dude” is fantastic. At my secondary school that kind of thing would get you picked on for weeks.

So was I brave all week? No. In fact I was weaker than last year. A couple of years ago a consultant told my parents and I that I get tired. Not just the normal kind of tired which everyone gets. I get that too, but what happens when I get truly tired is my body and mind just can’t do anymore. It’s because of my eyes, not helped by my muddling mind- “she has to go three times around the lap when everyone else goes around once”. I could write a blog about this alone. Despite being told by multiple professionals that I need to be rigorous in my bedtime routine in order to keep healthy, I’ve always struggled to do this while trying to be ‘typically teenage’. Plus chronic insomnia from my messy mind doesn’t help matters. But for the first time since school I felt the effects of this additional tiredness setting me apart. Of course, everyone was tired at half ten when it was announced we had to carry on rehearsing for another thirty minutes. But my tiredness meant I got ill. Slumping and almost too tired to speak the first time this happened V, a tutor, told me: “You don’t have to be brave all the time you know”. I apologised, I got angry with myself, but then I accepted it. Yes, I can do everything everyone else is doing, but I just have to pace myself a bit.

A masking-taped stage brought our group’s journey to an end. The performance went really well and thanks to the masking tape no unintentional crowd surfing was done. The group was as close as could be. And I felt… free. Free to praise, free to try and free to be tired. I didn’t have to pretend I could keep going. I just had to be brave enough to admit that I had already given my 100%.

The group hug on the stage, which has high visibility tape around the edges.