How do you learn to live after an acquired brain injury?

Shannon Yee had a sinus infection that resulted in brain surgery. Now she’s written a Fringe play about why she’s lucky

 

Imagine going to buy a tube of toothpaste and finding you just can’t do it. A simple task, one might think, but you just can’t do it. You can’t remember how to do it.

You have not developed an aversion to minty, fresh breath, you have just forgotten what to do. You are in the chemist but you have no idea how to perform a simple task. Everything is strange. You have no idea what brand of toothpaste you want. You can’t recall your check-out etiquette. You are panicking. Really panicking.

“I was having a meltdown,” is how Shannon Yee describes that Friday afternoon in Belfast. She had decided to try to buy a tube of toothpaste, but she ended up having to ring her partner, Gráinne Close.

Close had to talk Yee down from her place of panic, guide her out of the shop, down the street and talk her home.

Buying the toothpaste was only meant to be an exercise. Yee had spent a long time making her way to this place. Not to that specific aisle in that specific chemist, but to a place that promised familiarity. A place where she could perform the simplest of tasks.

It had all started so well. Shannon Yee had moved to Belfast from New York with Close, whose US visa had expired. “As all Irish people seem to do, she wanted to bring me back to the ‘motherland’,” Yee says. That’s where Yee’s run of luck started. Good luck and bad luck.

If she seems familiar, it is because Yee and Close became frontpage news when they became the first people to get a civil partnership in the UK. “Technically we were the first, so we beat you to it, David and Elton,” she laughs.

“Bizarrely, Belfast has been the right place at the right time for me on a number of occasions,” says Yee. “First, the civil partnership legislation came at the perfect time for us, then skip forward a few years to December 2008 when I got a sinus infection that I was too busy to have.”

Then the sinus infection “got a bit strange”, she says.

“I was having muscle spasms. I was waking Gráinne with my hallucinations. Then finally, I lost power down my left side and I collapsed in the hallway and she carried me downstairs. By the time I got to the hospital and my neurosurgeon met me, I was an hour away from death because I had a subdural empyema.”

Yee is happy to fill in the science bit in the most accessible way. “When you have a sinus infection, your sinuses basically fill with gunk and that had basically travelled up to the brain area and was covering my brain with abscesses.”

The condition is very rare “because people are usually dead by the time it has been discovered”. But Yee’s luck was about to kick in again.

“Luckily my neurosurgeon spotted it fairly quickly and acted very quickly,” she says. “So they took me into my first brain surgery and took a section out of my skull because my brain was swelling so quickly. They then tucked it under the skin on my abdomen to keep it alive rather than chuck it out and give me a metal plate.”

The whole episode is a blur. “I don’t remember it. There were quite a lot of drugs involved in having me in a medically induced coma and I never asked what I was doing in hospital, which is a weird thing because I’d never been an inpatient.”

Yee does remember looking around the room at “five other strangers who I was basically sleeping with, being bathed alongside and being fed alongside and thinking ‘well, this would make a crazy fringe show’.” Yee had started her life in Belfast studying creative writing at Queen’s and even at her most medically vulnerable, for her the play was still the thing.

Centre of excellence

It’s an ill wind that blows nobody good, we agree.

It was touch and go for the first few weeks before she had her second surgery because the abscesses had come back. “I went from a very busy life and then fate took my life and diassembled it. It left bits of it all over the place – my mobility, my ability to make sense of the world around me. I essentially had an acquired brain injury because of the infection that had made my brain swell and the surgeries that involved scraping my brain.”

For the first three weeks, Yee was paralysed down the left side of her body. She had to learn to walk again. She had to learn to use her left arm again. Her partner measured the doorways in their apartment to see if they would be accessible for the wheelchair they were told Yee could need. She had to be turned in bed.

Things did improve after the second surgery, but it took Yee nine weeks to learn to walk again and she had significant weakness on her left side.

Eventually, Yee came to the conclusion that she would in fact make a drama out of the crisis. “I wanted to write about this new and very strange world in order to make sense of it,” she says.

Her play Reassembled, Slightly Askew, which puts the audience of eight people into hospital beds and gives them earphones and an eye mask so that they can experience brain injury, is in The Complex in Dublin 7 as part of the Tiger Dublin Fringe Festival from September 13th to 14th.

“The play covers the first nine months after the illness,” says Yee. “This was the hardest time. I lost my mobility and my familiarity with the brain that I knew. My sense of the world had also changed, which are symptoms of an acquired brain injury.”

Yee found it hard to find “the right words”. She also had problems with emotional regulation. “I was sometimes very rude and impolite to people. I was nuts. I would yell at people down the street: ‘Why are you arguing with one another? The sun is shining.’ I had no filter and I had to learn it all over again.”

The L word creeps into the conversation again. “I was very lucky. Gráinne is an amazing support and we have an amazing support network of friends” But part of the reason she made Re-Assembled is that acquired brain injury sometimes goes unseen. “The cognitive and psychological effects of injury or illness on the brain are not visible. So it was really challenging. I looked normal. My hair looked normal. You couldn’t tell I had been ill.”

But she was ill. The tiredness she felt, and still feels to a degree, was a surprise.

“It is about how to manage that tiredness. I think we live in a society where everyone wears that badge with pride – ‘Oh, I’m so tired.’ I would get exhausted by everyday things; I would even have to lie down after taking a shower. That was exhausting because your brain is busy keeping your body alive as well as doing regular cognitive things. It is not something you usually think about.

“My concentration was shot, it was really difficult to focus. One piece of the play really happened and it was when I knocked over a picture frame and there was glass everywhere and I remember looking at it and I didn’t know what to do next. I knew it had to get cleaned up. I didn’t know how to begin that process. So I just walked away from it.”

Re-Assembled audiences will be guided to a room with eight hospital beds by a nurse, who is played by an actor. The nurse instructs audience members / patients that they will experience the play on headphones, lying down on a hospital bed with eye masks. “They will be immersed into my head. They will become Shannon and go through Shannon’s experience of being disassembled and re-assembled slightly askew.”

Audience members to the show will get “that visceral in-the-body experience of what it is like to be an inpatient, and to experience the world with an acquired brain injury – an invisible injury. The play within a head.” The audience member’s head.

There is more. Yee talked to her neurosurgeon and doctors and nurses. But, like any drama, we won’t tell you how it ends

“Good theatre takes you into a heightened place and gives you a heightened experience. It can bring you into someone else’s experience and give you that human connection. Reassembled, Slightly Askew does that by bringing you into my experience of acquired brain injury. It is a hidden disability, so through the telling of the story of what I experienced, audiences will get a sense of the frustration and the fatigue I experienced. They will feel the overwhelming nature of having their lives unassembled and reassembled.

“You might ask: ‘Why would I want to do that? It sounds awful. But it’s a story of terror, of discovery, of humour but, above all, it is a story about hope.”

Yee says she now feels different “on the inside”.

Initially the play’s working title was Recovery, but she decided that was not the correct word. “The longer I spent with my acquired brain injury, the more I realised that the word recovery was wrong because recovery implies a medical model. If something is broken, get it fixed and you return back to where you were, but I am never going to be the same person who I was. I am reassembled but slightly askew.”

Reassembled, Slightly Askew is at The Complex, Dublin 7, from September 13th to 24th. Shannon Yee will give a talk with Headway Ireland on September 19th. Find out more at reassembled.co.uk

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