Near-death experience of woman at centre of same-sex marriage case
'After nearly dying, I realised Grainne and I lacked the same basic next-of-kin rights as a married couple'
One of the women at the centre of a High Court challenge to Northern Ireland's ban on same-sex marriage is currently the toast of the local arts scene.
Her latest work, created as a result of a near death experience, has just completed a tour of the region.
Playwright Shannon Sickles has revealed how her brush with death has also played a role in the couple's decision to seek a judicial review against the law that prevents them from marrying.
Shannon (37) and her partner Grainne Close will be joined by Chris and Henry Flanagan-Kane when they go to the High Court tomorrow to argue that the ban is a fundamental discrimination against their human rights.
As they prepare to do battle in court, Shannon has revealed how the couple - who declared their commitment to each other through a civil partnership ceremony in Belfast City Hall 10 years ago - came through a traumatic time seven years ago when she was just an hour from death.
She has talked about how Grainne's love and commitment in helping nurse her back to full health had put into sharp focus their lack of rights in law as a couple should anything happen to one of them.
Her art work, Reassembled, Slightly Askew, which charts her recovery from the moment she woke in intensive care until six months later, has proved so powerful that it is being considered as a tool for training nursing staff and to help in patient recovery.
It is a unique piece of art in that it allows the audience to experience her journey through sound created with the help of new technology.
Audiences experience Reassembled via headphones while lying on hospital beds wearing eye masks.
Arts critics have described it as "a real-life ordeal, captured by a daring, disorientating artistic collaboration which works brilliantly on so many levels", while one of many plaudits from audiences include: "An amazing piece of theatre. An amazing use of sound. Very emotional piece. Very brave piece of writing."
It was just three years after their civil ceremony that the couple's world imploded when Shannon took seriously ill.
Just before Christmas 2008 they had both been suffering from the common cold when Shannon had to be rushed to hospital after she started to see strange auras and slur her speech.
She had developed a sinus infection that had progressed into a life-threatening subdural empyema, a rare brain infection, which, if it had gone undetected for another hour, might have claimed her life.
She spent the next three months in hospital, where she had surgery to remove a section of her skull which was placed in her abdomen to keep it safe until she was well enough to have it replaced.
At one stage she was left paralysed down her left side for three weeks.
The infection has left her with an acquired brain injury, which affects her cognitive, emotional, behavioural and physical abilities.
She said: "I'd never been in hospital before and suddenly there I was, a hole in my head and unable to move the whole left side of my body. I had double vision and no idea of how I'd ended up there. I was struck by, all of a sudden, being transported into this place that was so different from what I last remembered.
"I had to relearn how to walk and there was no guarantee that I'd ever regain power or control over my left side again. I couldn't see a lot of things, but my hearing was still kind of there. I had a heightened sense of hearing - and I now have noise sensitivity - and this and the not knowing if I would regain movement in my left side was terrifying."
The experience also brought home to Shannon and Grainne how vulnerable they were because of the law which denies them next of kin status.
She said: "It (Northern Ireland) was the last place in the UK to decriminalise homosexuality and, paradoxically, by fluke, owing to a direct ruling from Westminster, it was the first place in the UK to allow public civil partnerships.
"Now it's the last place in the UK to legalise same-sex marriage. Apart from love, of course, one of the reasons why Grainne and I had our civil partnership was because we wanted to make sure we both had next-of-kin status - and little did we know how significant this would become for us in just a few years' time."
Shannon's new art work was tested on the medical world last October when she brought it to the British Association of Neuroscience Nurses conference in Manchester. Since then she has had interest from medical schools and health trusts in using it as a training tool.
She said: "The feedback was that people felt really transformed and already were thinking about their practice differently. So I think the potential of the piece is really exciting. I believe the project and I are ready to reap the benefits of the enormous amount of hard work, time and artistic enthusiasm that has been invested up until now."
Ultimately, though, she hopes her work will help people recovering from a serious illness, as well as their families and carers.
Speaking frankly about her own experience, she revealed the many emotions she and Grainne went through and also talked about the difficult process of applying for benefits, which she described as a "trauma".
She said: "I hope that this (her art work) helps to make people aware of brain injury and, certainly from Grainne's story, that families and carers and friends might understand that some of the ups and downs and frustration and confusion and fear is totally normal. And the guilt they might feel.
"When I got discharged from the hospital, I was too well in some ways - I didn't go on to the brain injury rehab unit, I went home and waited for community brain injury services to get in touch. I went through a lot of confusion and guilt, thinking, 'I know how to walk again, I have my speech, I'm not as bad as I could be, but I'm not OK, there's something going on'.
"To have to try to figure out what it was and to have to try to quantify it to (get) Disability Living Allowance was the most upsetting and degrading thing. Filling out those application forms was retraumatising.
"To try to find some validity knowing that you can't see it from the outside and you only see the effects of my chronic fatigue and the overload, which makes me seem like the worst person in the world.
"The root behind it is something you can't know - except for maybe now through this piece. So I hope it travels and continues to build a positive momentum and makes people more aware."
Shannon Yee: Reassembled, Slightly Askew will be in the Arts & Disability Forum's Bounce Festival from September 3-6.