Seizure art project

[Johnwonn]

Hi all,

I'm an artist, though I stopped practicing 13 years ago as my epilepsy, specifically the associated depression, was making it impossible to work. It took 9 years to be diagnosed, and 4 years after diagnosis I feel like I want to start working again.

I'm planning a piece of work myself to try and express my experience of seizures, but I'm looking for other creative people (everyone's creative aren't they) who suffer from epilepsy (of any kind) who'd like to participate. It wouldn't have to focus on your seizures, and it could be visual art or written, could be a video, could be a diary. Basically anything expressive really.

I'm really interested because I meet so many fellow sufferers who are creatives.

Hope to hear from some of you

[Beansheen]

Hello,

Just to say good luck! It sounds a positive move and to use your creativity is also recognising yourself, which so many people struggle to do, to find the real “ me” once coping with epilepsy......the condition, its effects, the battle to obtain just the correct dosage of drug(s)......

Your way forward is really interesting, but exciting, it could also be so useful for people in the future to understand, accept epilepsy. It’s also, I hope going to prove to you, the artist you are!! I’d love to hear more, I feel my creativity has been.....lost....I used to teach drama, trained at Guildhall School of Music and Drama....many moons ago! So, I’d love to hear what you are doing, I think it could grow into something special, good luck.

[Johnwonn in reply to Beansheen]

Hiya Beansheen,

One thing I have learnt is creativity will always be there, you can't lose it, and everyone is born with it, its just hard to recognise and sometimes crushed (it happened to me for a long while). Its almost a must to start doing something creative again. Drama and theatre is such a powerful art form, please start again

Why don't you join in? It could be a good way to get back that creative urge. i can already see a few ideas forming in my mind. reckon you could do something wonderful!

i've just sent ashley below a long message, give it a read and see what you think.

Email me if you'd like [e-mail]

Warm regards,

John

[303127]

Hi Johnwonn,

I have been a practising artist for over 25 years, studied hard and worked very hard to remain an artist with a ' modicum' of success !8 years ago I had a 6 hour op. to remove a huge tumour a ( meningioma) ( I told them I didn't feel well !!). Anyway, I have been left partially sighted,trouble with short term memory and temporal lobe epilepsy. I didn't realise the severe depression that accompianied theT.L.E and have had to embrace that into my creative life. The first thing I did on leaving hospital was to paint, it has been an amazing experience watching how my methodology has altered and has also afforded me a better sense of my ' inner self'. My work has gradually moved to the idea of the fragility of life and the many ways I can represent it. The abstract approach was extremely important in conveying my vulnerability before, during and after a seizure. The aura is inexplicable so art is my only way of communicating the sensations. I have managed to continue....I have worked as an artist educator for many years and have been able to carry on with that...….I have always divided my time between work as an Artist Educator and a practising artist. My specialism is working with access and community groups and I work with many groups with severe learning difficulties. I genuinely feel that my experience, epilepsy, partial sight and defective short term memory has given me even more empathy than I had. I am sorry to ramble on about me...….I love your idea and hope that my story could be encouraging.....I am currently studying for a Professional Doctorate in practice based Fine Art...….my main area of research is Neuroaesthetics……...oh, I really should stop now.....but I am as passionate about my painting and artwork as I ever was and I applaud your concept of working with other's and their experiences. I have worked with professional musicians and music is an important component in my art...…...I try to appeal to as many senses as possible...……...Please don't hesitate to get in touch...….we creatives must stick together!!! My name is Ashley and I hope you can contact me on this forum...…..take care,x

[Johnwonn in reply to 303127]

Hi Ashley,

Don't worry about rambling on, you're not. I find it hard to talk about, i feel like people are rolling their eyes (though they probably don't). I'm so glad a don't have grand mal seizures, but I think the hard thing about TLE is no one can see it. It took 9 years to get a diagnosis during which time I was working in a really corporate environment. Suddenly my head would drop to my desk with me exclaiming something along the lines "oh f**k" (I think, memory is a problem). Then I'd wonder round feeling and looking drunk. In the end I resigned out of a kind of shame and feeling of being a failure. A diagnosis would have been really helpful, but it took them another 3 years after the fact.

Anyway Art! i have to admit I don't have anything like as much experience of professional practice. I bottled it and ended a Civil Servant for 11 years. I'd love to see your work.

Be really interested in talking further. I'm trying to get more collaborators, some funding off the Arts Council and hoping to get an appropriate venue (I'm going to go round all the Schools of Neuroscience). I think there's definitely the opportunity. ideally I'd like to be able to get support from maybe the Wellcome Trust.

My own artwork changed massively over time, but not directly to do with TLE. My interests were always multi-media and issued based art, some stuff that I guess would be called installation. I stopped making that kind of work probably 20 years ago (I'm 49 now) as unfortunately the issues I always focussed on were too close to home, intentionally ugly, and I couldn't show any of it. Since then I've just painted, sold a bit of work, exhibited in few open exhibitions, accidentally ended up running a life drawing group for few years, but mostly I spend my time letting artists studios not for profit (or wages!) - if I couldn't do myself then I ca make it easier for others to. Overall though I've decided my life has been one big piece of performance art! going to start wearing a body cam!

I haven't got any solid ideas except for my own piece of work, I need to get years of ideas to realise and I'm using this to get me going again. So initially just to bounce some ideas round.

If you're up for taking this idea further drop me an email [e-mail]

warm regards,

John

[paultreetop]

My son's 5 with epilepsy and a fantastic artists it dousent effect the way he portrays his art work would gladly share his work

[tinyshadow090]

i am interested in this when& where are you thinking of meeting fellow epilepsy suffers. i too am epileptic& suffer with depression ,please more details required thanks

[Hidden]

Hi sounds like you are making a great effort to get back into your previous creative spirit... Well done! I've had epilepsy now for 45 years and understand the stress and trauma others go through!

[Nicole1]

Hi, you commented on one of my posts about my poetry, definitely interested, just waiting to hear back from you. Thanks in advance x

[Johnwonn in reply to Nicole1]

Hiya Nicole,

Sorry took me so long to reply. Glad you're interested. Just working on some personal artwork focussing on memory and my weird relationship with it, hoping to get some Arts Council funding but not sure I'll get it, not exactly put myself out there over the years.

A few people interested - should set up a separate chat if that's possible on this platform, never tried - will do now.

will keep you updated

John