Posted on September 13, 2017
Last night I got to see Cecilia Knapp perform her one woman show, Finding Home, for the second time. It’s a show that discusses some of the really big stuff, like family, growing up, loss, suicide, and hope, and again, I was completely blown away. She’s an incredible writer, an incredible poet. It’s a fantastic show and if you’re able to see it, you really should.
This post could easily be a list of reasons why I love Cecilia, and her writing, and I’d quite happily write that but that wasn’t why I wanted to write this post. I wanted to write this post because she’s doing something really important. She advocates using writing, and creativity in general, to share stories and to help us cope with the things that happen to us, and this is something I’ve always really thought too. I think it can change everything; it certainly has for me. Writing has given me a way to make intangible things tangible and process things that had always felt too big to think about. I can’t say it better than Cecilia does here, in her TED Talk:
And on the other side of that, I also want to highlight the power of art and words, and the effect they can have. I’ve been in a pretty bad place for the last few months and I’ve really struggled with feeling hopeless. But listening to those words, it kind of felt like all of the colour had rushed back into my life, all of the feeling back into my body. I felt alive again. And that was amazing.
Of course, one experience can’t alleviate depression but what is change but a series of experiences? And regardless of whether or not this feeling lasts, it won’t be any less special if it doesn’t. I’ll keep the memory safe and replay it whenever I need to remind myself of that moment, that feeling. Given this experience, I’m even prouder that this blog’s title was inspired by this show.
You can find out more about Cecilia and her work here.
Posted on September 9, 2017
A little while ago, I discovered Sophie Mayanne’s Behind The Scars photography project. I was scrolling through Instagram, probably procrastinating, when I saw a photo of a young woman unashamedly showing off her scars. I was intrigued by the story behind that post – while I’ve never been actively told to hide my own scars, it often feels like I’m expected to cover them up. This is particularly true of self harm scars, I think. As I said, I’ve never had someone specifically tell me to hide them but I still feel that there is an expectation that I should, either because I should be ashamed of them or because they might upset people. I protest this and so does Behind The Scars. This ever-growing collection of photos allows people to show their scars and tell the stories behind them. I don’t think I can describe it better than Sophie herself does: “Behind The Scars is a celebration of beauty, of flaws, of battles won and obstacles overcome. It is about survival, living beyond that and capturing the memories. It is a truly honest depiction of how our history, shown through these scars, does not define us but compels us.”
I was instantly a fan and applied to take part. It took a bit of planning and rearranging but come the day of the shoot, I arrived with only a little anxiety. I’ve had photos taken before, for my music projects, but they’ve always been taken by people I already know. So I was a bit nervous about that. I had also been nervous about my difficulty with eye contact (thank you for that, ASD) but Sophie was very reassuring and put that fear to bed very quickly.
The shoot itself was a very positive experience and made much easier by the presence of a little dog, Carla. Animals always put me at ease (to the point where both my cat and my dog frequently accompany me to therapy sessions) so that was a lovely surprise and did make me feel less anxious. Anyway. I had expected to feel very self-conscious but I didn’t. In fact, I felt strangely in control and comfortable in my body and that is something I’m really grateful for, grateful to this project for. And even though I often get very anxious about not knowing how to do something, I didn’t feel that as strongly as I sometimes do: Sophie was great, telling me where to stand and what she wanted me to do. I never felt judged and if a particular pose felt unnatural, we were on to the next one straight away. And suddenly we were done.
The other part of the project involves writing a little bit about your scars or your experience of having scars. I thought a lot about what I wanted to say and eventually, I came up with this:
“I’ve struggled with self harm on and off for about eight years but it’s gotten worse as my mental health has worsened. The compulsion, for me, is two fold. Because of my Autism, I feel emotions really strongly and when it gets completely overwhelming, the only thing that helps is self harming, like all the emotions can escape. It’s like my version of a pressure valve. I also do it when something very upsetting happens, like I’m trying to represent that distress in a tangible way and show that it’s changed me. I think a lot of people don’t understand it and almost don’t want to because it’s a hard thing to think about but I think the only way to help someone who is self harming is to try and understand it. I didn’t talk about it for a long time because I didn’t have the words but then I realised how much it would’ve meant to my younger self to know that other people were struggling with the same things. So it’s time to find the words.”
My lasting impression of Behind the Scars, and of Sophie, is sincerity, and personally, I can’t give it higher praise than that. It’s been a couple of weeks now since the shoot and I love the photos. They look like me. I know that sounds odd, but how many photos have you seen of yourself that just don’t look like you? But these do. These photos look like me.
“If these images help us to think differently about scarring, and for those that “wear” these scars, to look differently at not only the imperfections, but the individuality these marks might engender, then for me, I would deem the project a success.” – Sophie Mayanne
A massive thank you to Sophie for taking these photos and for the Behind the Scars project as a whole. You can see more of the photos from the project here and here and, if you’d like to help her get Behind the Scars to New York, you can find the Kickstarter here.
Posted on August 22, 2017
This isn’t strictly mental health related but it was a really great experience, one where I felt completely accepted, as I am, as I process the world. That gave me some emotional energy back. Plus it was just really cool.
If you know Brighton, you should know about Fabrica, a little gallery on Duke Street. It’s a beautiful building and I’ve seen a number of really cool, really interesting exhibitions there. But the one running at the moment is my favourite. It’s called IN COLOUR and it’s an interactive light installation by Peter Hudson. The room is filled with coloured light and by interacting with a series of gadgets (a microphone, a small dome that’s reactive to touch, and a ball that you can move around), you can affect the colour of the light. You can use each of these separately or they can be used together and you can’t help but feel quietly connected to the people you’re sharing the experience with, the light reacting to your presence individually and as a group.
Here’s what it says on the website: “This site-specific work has been created in collaboration with people with complex needs, resulting in an immersive piece that invites audiences to interact with it and each other, non-verbally. The work has been developed to appeal to people who are highly sensitive to their environments and to sensory stimuli. As such the work is accessible and inclusive, exploring themes of communication and consciousness and how environment affects behaviour.” I did a bit of reading on Hudson and it’s apparently inspired by his experience at Project Art Works, an organization in Hastings providing art therapy to people with learning difficulties and Autism and is based on what Hudson describes as the ‘spectrum of neurodiversity’.
It’s pretty spectacular. My favourite was, unsurprisingly, the microphone. I was the only one there during most of my visit so I sang some of my own songs, watching as the light changed. I loved it. I’ve always loved colour and it’s really important to me when it comes to how I process the world so to combine that with my own songs was really special. It was kind of amazing to see what my music might look like. I don’t think I’ve ever sung anywhere so beautiful.
It was a great experience that really encourages creativity, connection, and communication, in whatever way you’re comfortable. I definitely want to go back again before it closes on 28th August. Definitely check it out if you can!
Posted on August 21, 2017
On Sunday 9th July 2017, I woke up feeling very nervous. It was the day of Disability Pride in Brighton, the first event of its kind in the UK, and I was performing on the main stage just after two o’clock. Of course, I was really excited: it was going to be a great event, one I was really proud to be a part of. But my anxiety was very high. Other than the fact that I hadn’t played live for a while (finishing my degree has taken up all of my time), I felt anxious about whether I deserved to be there.
My presentation of Autism isn’t very obvious. I’ve been told many times that I don’t ‘look Autistic’ (a phrase that needs a whole post to itself) and I’ve always struggled with where I fit under the label of ‘disabled’. The legal definition is “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” (according to the Equality Act 2010 if you want the source of that). So, yes, I am disabled but it’s very much an invisible disability and multiple experiences of that being questioned has made me very nervous of associating myself with the word. But I’d applied and been chosen to play so I tried to trust that.
Everyone was so nice, right from the moment I arrived. I met the stage manager, AJ, who was lovely and got ready to go on stage; I was starting to get back that excitement that I get from performing. But then my capo broke. For those of you not familiar with guitars, the capo is the little gadget you can put on the neck of the guitar to make it easier to play in different keys. It literally sprang apart in my hand. Not good. I needed it for every song (I usually have a spare but since I’d bought this one a week ago, I hadn’t worried about packing one). Half of my brain was desperately searching my repertoire for songs that didn’t need a capo and the other half was trying to figure out where on earth I could find another one. No one else seemed to have one so my parents (major shout out to them) ran off to the two guitar shops close by. I felt like I should be panicking but I was strangely calm.
Somehow a capo was found and then I was on. I’d originally had time for four songs but that had to be cut down because of the capo problems. But I didn’t mind. The atmosphere was so nice, so friendly, that I just wanted to get out there and play.
I’d agonized over what songs to play. I write a lot of songs about my experiences with mental health – it helps me process them, helps me make sense of it all – but I didn’t want to upset or trigger anyone. On the other hand, I wondered whether it was a good place to play them, somewhere where people might relate to them. In the end, I decided to play two of those songs with two more upbeat, positive ones. But with the stress of finding another capo, all coherent thinking disappeared from my brain and I was playing a song before I’d even decided to play it. Oh well. That first song was called ‘Bad Night’, about a particularly bad night where I couldn’t imagine how I would ever feel better. The second song I played was called ‘Invisible’, a really important song for me because it’s such an honest account of asking for help with my mental health and being repeatedly turned away. As I introduced it and told the story behind it, I could see people nodding and that actually made me well up a bit. Writing it was so hard that I hadn’t really thought about what kind of reaction it would get and so, to have people connect to it, connect to something that was so personal, it kind of blows my mind.
I’d hoped to play another song, to end my little set on a more upbeat note, but there wasn’t time. That was a shame but I was so happy to have played at all. All my anxiety had disappeared and I remembered exactly why I love performing so much. And I have never played to such a friendly, supportive crowd. It felt safe to sing those songs about difficult things and it felt safe to be exactly who I am. I hadn’t expected that and even though it’s now several weeks later, that feeling still almost brings me to tears. I don’t often feel safe outside my home but I did feel safe there.
It didn’t hit me until later but my favourite moment of the event (apart from the adorable little girl who stood right at the front, watched both my songs, and waved at me afterwards) was something someone in the audience called out between my songs. With all the stress beforehand, I hadn’t checked the height of the microphone stand and so I discovered during the first song that it wasn’t high enough. I made a joke about that as I adjusted it, about being too tall for the microphone, and someone from the audience called out, “the microphone’s too short for you!” It’s simple but it meant a lot to me. I often automatically put myself in the wrong, assume that I am too much or too little of something rather than looking at the situation for what it is. Here, it was simply a case of adjusting the microphone stand to match my height and it’s a little ridiculous to put all of that on myself, to let it reinforce a negative view of myself. I mean, it’s a microphone stand! But it shows how easy it is to get into a pattern of always seeing yourself as ‘wrong’, even when there isn’t a right or wrong.
Of course this isn’t always the case, but it was a good little reminder to be aware of my thought processes and be aware of what I’m telling myself. (I think it’s pretty easy to pick up that way of thinking when it comes to a disability or mental health problem, because you’re often different from the norm and you end up adjusting to fit into that. So it’s easy to feel ‘wrong’, simply because it’s not the same as everyone else. At least, I feel that way.) It’s often hard to remember that different isn’t wrong, especially when the way everyone else does things is praised as the ‘right’ way or the ‘best’ way. I regularly have to remind myself of that.
Anyway, I had a really great time at Disability Pride and I was so grateful to play. It really was one of the loveliest, most supportive crowds I’ve ever played for. I wish I could’ve stayed longer and explored more but my physical health hasn’t been great lately and even that little amount of time had completely exhausted me. But the little bit I got to see was incredible and I am so, so proud to have been part of the event, even in the smallest way. I really hope that this event can become an annual one. Thank you to everyone involved – you are all complete stars!
Posted on August 16, 2017
I posted about this on Instagram but I wanted to write something for here too.
On 5th August, it was the two-year anniversary of my Autism diagnosis and I decided that I wanted to celebrate it. It was already a really busy day with Brighton Pride and the birthday of one of my best friends but when I got home, I had cake with my family. Me and my Mum made a chocolate cake together and stuck a little sign on top that said ‘Happy Diagnosis Day!’
I’m not sure whether I’ll ever be able to celebrate actually being autistic – there are still so many things that I’m struggling with – but I did like celebrating this day because getting the diagnosis was a really big deal. I finally got some answers to the questions I’d been asking my entire life. For years, I’d struggled with this unknown thing, not understanding why I couldn’t seem to function as well as everyone else. It felt like I was broken. And getting the ASD diagnosis changed that. It explained things I hadn’t been able to understand and it gave me a place to start when looking for support. Suddenly this massive, intangible thing I was wrestling with started to make sense.
It’s not perfect and it’s not easy but this date represents an end to that chapter of my life and the beginning of a new one, hopefully a better one. And I think that’s worth celebrating.