a gap year for the
soul

Living in the grey - because living life with an invisible disability isn't black or white

 

Making the invisible visible.

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To encourage participation with our environment, to think we are a part of not apart from (one another or nature), expressing isolation and loneliness that comes from a chronic illness etc.

Ideally in collaboration with Wellcome Collection and Hampstead Theatre/Kew Gardens for outdoor nature performances and immersive with nature experiences and linked to QR codes/websites for audience to upload/get involved remotely.

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Exhibits / theatre performance (each will be interspersed, exhibition will not be linear - this will represent how the world seems to someone with a brain injury), ideas include: 

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• Diary, poetry and chapter extracts alongside visuals, photos or participant experiences (see below), topics explored: leading up to and after meningitis, brain injury, CFS/ME, death, ileostomy, stereotypes and prejudice against disabilities, nature connection and healing, recovery, grief, loss, loneliness, breath work, meditation and neuroscience to explain what was happening and so on.

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• Area with Loop of noise of beeping hospital iv machine, voices, trolley beds, people shouting - representing never-ending sounds and no rest in hospital.
   

• Radio 4 playing - I lived in silence and darkness for most of the first two  years- unable to listen or watch anything as it caused severe brain fatigue (if i had to go out i had to wear sunglasses and noise cancelling headphones - even for a walk down the street).  Six months post-meningitis, i finally could listen to the radio again in small snippets and i could only tolerate Radio 4. It became not only my companion in the loneliness but i also used it to work on my memory - eg testing myself each day with what was just said, who said it, what the programme was about, what the prior news story was etc. (perhaps set participants same challenge?).

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• Post-it wall on how to be human: for 4 years i lived with post-its reminding me to do specific things in each room: how to dress (what clothes went with what), instructions on how to make a cup of tea, to turn the cooker off, wash the shampoo out of my hair, brush my teeth, wear a coat when i left the house and so on.   

  • These were in the dozens - have them exhibited on a perspex wall;

  • Post-it entry ticket and post-it reminders on exit (take your coat/umbrella/person you came with) and entrance doors (turn off phones, last person turn off the lights by the light switch etc).

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• Film of me 'dancing' (the way my body would fall/be restricted) wearing a dress made from all the cotton wool plasters I was given to represent the 400+ vials of blood tests I had taken. with Tilted (by Christine and the Queens) playing or due to copyright (?)perhaps a silent disco asking them to QR code to link to play the music via participation.

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• Yoga mat/bed sheet canvas painted using my body as the brush strokes (body covered in paint and then attempting yoga) - to represent the movement and rehabilitation of the injured body.

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• Flour floor footprints - i would drop most things I was holding daily for several years. Once i dropped a bag of flour all over the kitchen floor. I noticed my footprints were not in a straight line to get out of the room - they wavered all over the place, even knocking into the fridge, evidence of my lack of spatial awareness and inability to walk on a straight path.

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• Film of various cars parked on a street - as if walking past them - represents my brain exercise where i would set myself the challenge of firstly remembering how many cars i had passed in a given section of the road, then moving on to each car's colour, then moving onto the make of the car or the first letter of its number plate etc.

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• A whole wall wall-papered or whole floor of the exhibition space made using all my medical letters and reports (literally in the thousands) - to represent the relentlessness and time stealing experience of a serious chronic illness. With the poems and statements written on top of them.
   

• Imprints wall - wall series of my body imprinted (using natural dyes eg beetroot, soil, etc) - to represent the relationship with inanimate objects (also audience participation) and link to nature etc.
   

• Perspex room with one way mirrors all the way around it in the middle of a room with me/performer inside for days on end. Perhaps the 'room' is rigged to my brain neuropathways and to parts of the room to light up everywhere my body makes contact and how im feeling /thinking- becoming a cacophony of colour over time/restarting each day to a blank white room...Audience witnessing the person's isolation. Also idea of we leave imprints of ourselves on things around us and vice versa.
   

• Naked self with clay hand prints added on me by audience - to show everything leaves an imprint on us. 

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• Fragile protest section (see below) - I am not Fragile/I am tender, resilient, intelligent, fun, creative, kind etc..in the form of protest placards and film I made representing the resilience, strength and warrior and just because body is fragile, we are not less than, weak or broken. Also representing the (negative) assumptions made by the world.
   

• Photos of me naked 'hugging' the earth - soil under tree, beach, rock, grass, tarmac.

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• My hospital gown with all the statements and judgements that I have had said to me by medical staff along with my diagnosis and symptoms written on it.

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• Making the invisible visible in other ways eg nature, community, surroundings etc.

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Participation: 

• A real garden area of silence and natural delights - representing the healing power of nature and need for time out from noise and stimulation and to provide the difference going from a noisy exhibition room into silence. Great for the neurodiverse. Snippets of meditative exercises sprinkled around the garden. Creative ecotherapy sessions.

• Meditation room of Non Sleep Deep Relaxation (yoga nidra meditation) me leading it - along with paragraph of neuroscience explaining how it helps.

• Beautiful smells of herbs/plants with strong aromas - to signify loss of smell and taste I experienced and how I retrained my brain through imagining smells and tastes to recognise smell and tastes over two year period.

• Virtual goggles or a senses simulation booth to represent living with a brain injury- where participants (safely) 'bump' into things they don't 'see', experience light and noise fatigue, 'fall over', feel extreme cold or heat and so on.

• A mirrored floor with a sky scene on the ceiling: the effect of walking on the sky - initially hindering to the participant as it's something our brain cannot compute, but once they relax and breathe into it, they enjoy the bizarre experience of it, the adventure and also rewire the brain. Represents my active choice to breathe into the experience i was having when i was told i might be dying in the first two weeks and how i applied this to everything - i repeatedly instructed myself to just breathe and observe what happens: journey of my world being suddenly turned upside down, having to learn navigate my way through it, finding the humour and adventure (and creativity) in the experience and realising i can adapt even if it is difficult.

• Having a relationship with your immediate environment (ecotherapy) - how i coped in years of isolation eg:

  • explore the wall next to you - how it feels, smells, tastes, against your skin, in your body, listen to its stories, tell it yours;

  • look at an object (let's say a chair for the sake example here); face it and really look at it - the atoms that vibrate to make it what it is and what it takes for us to recognise that it is a chair - wavelengths, eyes, brain, culturally understanding (because say to someone in a far off tribe who may never have seen a chair, does not see a 'chair'), consider what it took for it to become a chair in the room you’re in - the sun, the earth, the wind, the rain, the seed, the farmer, the axer, the many hands and the many lives those many hands touch every day: their hopes and dreams, their tears and sorrows; the technology and minds that have created the ways to chop, design a chair, the lorry, the trains, the planes that needed to be invented all those years ago to get this to you today, the packaging, the sales person, the you - the all that makes the chair 'a chair' in existence to experience itself…(how we are all connected, over thousands of years, over thousands of lives as well as questioning our perceptions of what we look at (back to someone else not seeing the chair as a 'chair'/experience/the way we each make sense of things does not mean someone else has is having the same experience of that reality; representing brain injury making things have no meaning to me such as: words were just symbols, i didn't understand how to put batteries in a light pack etc, make a cup of tea).

  • Brain exercises I did - maths, words, shapes, - they can also do them against the clock, (perhaps QR code to post onto website/social page where they can upload their results/thoughts etc).​

• Making the invisible visible:

  • Individuals write their own post-it reminder and leave it on a post-it participants wall - to share with others.​

  • I AM NOT FRAGILE/handle with care sticker - take and stick a sticker on their body where they may have had a chronic or serious invisible disability, take a picture of it and share it alongside what makes them a warrior/ personal strength on the exhibition's social media pages.

  • Make their own I AM NOT FRAGILE/ I AM WARRIOR protest banners (as above).

  • 'Confessions' booth - individuals go into a confessional type booth where they pull back a curtain in the centre that separates them from the 'priest' to reveal a mirror and their own image = they confess to themselves..representing each person's own self opinion and self honesty matters, releasing the invisible by making it visible (and making our own sense of ownership, empowerment etc visible to the individual too). Encourage confession of a positive /humorous fact no one knows eg i speak 5 languages, or i was once the face of a nappy ad, or i have grey hair under the blue hair dye, or i can play the piano and no one knows, etc...perhaps filmed by camera on the other side of the mirror and projected onto screen outside - time delay of hours/days to check decency issues that may arise...shared on social media.

  • Leaving their imprints on my body - I will be present (naked) and they will be able to put their hands in clay/soil /beetroot juice and place their hand imprint on my body.

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Theatre performance:

1. with me on stage and a narrator, as well as a group of actors (who will change character between either each scene OR change roles each performance) - who play back (playback theatre) the experience/s i share with the narrator and the audience - so the audience see a play be created of my experiences in real time, witnessing it as i do too for the first time. Each performance will be unique given that it's live playback theatre - the actors improvise each time, and actors may change the role they play each scene, but definitely each performance. May have elements of immersion from exhibition above eg ecotherapy for audience.

2. live performance in locations such as the Kew Gardens, local parks, with actors/me being body painted in camouflage with the plants/environment with me /performers moving in such a way to show connection with environment/plants etc. Showing our connection to nature - a part of, not apart from, also ecotherapy element, as well as making the invisible visible, ideas of isolation etc.

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Ecotherapy performance:

ecotherapy for all - in hospitals, local parks, work environments - creative interaction of individuals with themselves, one another and their environment.

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...A part of, not apart from!