'It started with a sinus problem but I ended up with infection of my brain and nearly died'
Struck down by a life-changing illness, Shannon Yee has used it to create an award-winning art experience
Shannon Yee was leading a busy life working with young people in the voluntary sector in Belfast when she was struck down, at 30, by a rare life-threatening brain infection.
"I was an hour away from the dance-floor in the sky, although I was quite out of it and wasn't aware," she recalls. "It started with a sinus infection, which I'd never had before, that went a bit strange. I started having muscle shakes and spasms and migraines and I was vomiting.
"It was no time to get sick - I was planning to go to Mexico for the Christmas holidays - but then I lost power on my left side. My partner had to carry me to the Royal Victoria Hospital."
The sinus infection had progressed into a subdural empyema, a rare brain infection, which would have killed the American-born playwright within an hour if it had gone undetected.
She was rushed into the operating theatre of the Royal Victoria's neurosurgery unit for a craniotomy to remove the pus and alleviate the pressure on her brain and a section of her skull was placed in her abdomen until she was well enough to have it replaced.
"It was terrifying. I'd never been in hospital before and I was paralysed down my left side for three weeks," says Shannon, a softly-spoken New Yorker. "I had nurses attending to my personal care and I was on morphine. I began to think, 'What a wacky fringe show this would make'."
After her life-saving surgery, she spent three months in hospital having intravenous antibiotic treatment and a further two craniotomies when the infection returned.
As a result of the infection, she now lives with an acquired brain injury, which affects her cognitive, emotional, behavioural and physical abilities - although to meet her, you'd never know it.
"What happened to me was bizarre and out of the blue, but I was in the right place at the right time," she says. "Belfast is a world leader in neurosurgery, because of the Troubles; the Royal Victoria Hospital has so much expertise. If I'd been in the US, I would have faced enormous medical bills and I wouldn't have been able to get back to work, so I'm a big fan of the health service."
Shannon had moved to Belfast from New York in 2004 and fell in love with Grainne, a community worker, originally from Ahoghill. A year later, they became Britain's first lesbian couple to enter into a full civil partnership in 2005.
The couple ran a gauntlet of outraged protesters on the way to the ceremony at Belfast's City Hall. But, in 2008, Shannon was facing a much tougher battle.
After only four years together, Grainne faced losing her partner forever. She'd had the same cold which went into Shannon's sinuses. "I don't know how she got through it. A number of people turned to her and said, 'Gosh, you're very good to stay with her'," says Shannon.
"She has amazing strength and we had tremendous support from our friends and families and everyone from rabbis, Buddhists, nuns and pastors."
On Shannon's release from hospital, she had decided she would to use her experiences in her writing. A year later, she began a creative collaboration that would lead to Reassembled, Slightly Askew, an immersive sonic artwork, which takes the audience on a whirlwind ride through her experiences in the neurosurgical unit.
In the groundbreaking artistic project, a designated side room was set up in the Metropolitan Arts Centre (Mac) in Belfast. Ticket-holders, one by one, are met by a "nurse" and asked to fill out a form, before being tagged with a medical bracelet.
They are then led into a darkened room - scented with antiseptic hand-scrub - and shown to a bed, where they spend the next 48 minutes, with headphones and an eye-mask, being transported to the intensive care unit where Shannon woke up after her craniotomy.
They hear the voices of Grainne, Shannon herself, her neurosurgeon and nurse, and, after her release, some of the sounds that surround us every day, but which we don't notice, unless, like Shannon, we have suffered something that makes us hypersensitive to noise. Rave reviews followed. Even Shannon's consultant neurosurgeon confessed: "I thought this was going to be something 'arty-farty'. I had no idea it would affect me so profoundly and viscerally."
Currently running at the prestigious Battersea Arts Centre in London as part of A Nation's Theatre Festival, Reassembled, Slightly Askew uses hi-tech audio technology from the Sonic Arts Research Centre at Queen's University, Belfast to make the sound three-dimensional.
Listeners feel like they are inside Shannon's head, viscerally experiencing her descent into a coma, brain surgeries, early days in the hospital and re-integration into the world with a hidden disability.
"Little did I think, all those years ago when I was lying in the acute neurosurgery ward at the Royal Victoria Hospital, that I would be creating an artwork that would take audiences into a hospital bed - and my head," says Shannon. "I wanted to share the challenges and triumphs of my deeply personal story of my acquired brain injury. It is a story of terror, discovery, humour, but - above all - hope."
In December 2015, Shannon was named by the Arts Council of Northern Ireland as one of 21 local creatives to receive an Artist Career Enhancement Scheme award (ACES), a development award, worth up to £5,000, which enables artists to take their careers to that all-important next level.
Shannon's award is being used to develop a sustainability plan for Reassembled, Slightly Askew, through personalised mentoring from the Arts & Disability Forum, with the aim of building networks around the UK and Ireland to showcase the work.
"This hasn't been done before and audiences have been really touched by the effects of the technology we use to recreate my experience in the neurosurgical ward," Shannon says. "Healthcare professionals, surgeons and nurses have said they are changing the way they practise after seeing it. The impact it's making is very exciting, on a personal level and on an artistic level.
"I'm very lucky to be here and to be able to reflect on my experience. I have a lot of invisible challenges, a lot of fatigue - my energy battery is a bit low and always requires me to top up and I'm very sensitive to noise. I find it hard to filter out background noise. It's quite an assault on the senses in a bar, for example.
"That can be frustrating for networking events and promotion, or even just socially. When there are two conversations going on in the same room, it's hard to focus and I'm probably presenting the worst version of myself."
She adds: "When I moved to Northern Ireland from New York City in 2004, Belfast beat Dublin and Galway to become my new home. I could feel a tremendous creativity bubbling under the surface here. It's a fact, though, that Northern Ireland is the very last place in the UK to recognise same-sex marriage.
"Even if we did get married outside of Northern Ireland, same-sex marriages are not recognised here. I think it would be wonderful if politicians at Stormont truly reflected the society they represent."
Featuring local actors Stephen Beggs and Mary Lindsay, Reassembled, Slightly Askew was created by Shannon with the help of her neurosurgeon, head-injury nurse and local artists Anna Newell, Paul Stapleton, Hanna Slattne and Stevie Prickett.
It's the only production from Northern Ireland that has been invited to be part of the Battersea festival, which shines a light on shows made by artists based in villages, towns and cities across the UK, with wildly different backdrops and personalities.
"It's been fantastic to be a part of the creative buzz that reverberates through the Mac, particularly as I am a playwright, which can be an isolating profession," says Shannon.
"I share the Hatch office with OfftheRails Dance and Chatterbox Productions, which means I can no longer get away with working days on end at home in scruffy sweatpants, or mismatched slipper socks."
- More information on Shannon's work can be found at www.shannonyee.wordpress.com and www.s-yee.co.uk