Theatre Maker Paralysed by Guillain-Barré Syndrome Performs Getting Better Slowly

What happened when you first got ill?
I woke up one morning with flu-like symptoms. My feet especially were tingling and pins and needles-y; the symptoms didn’t seem to go away and, as the days progressed, it got worse and worse, spreading up my legs. I went to a GP a couple of times and they couldn’t find out what it was, putting it down to flu or a virus. It was kind of scary going through that and not knowing what was happening to me. 

What was going through your mind when you found out you had Guillain-Barré Syndrome?
Probably the scariest point was once I’d been diagnosed and sent to QMC. They said I would get worse before I got better but the good news about this condition is that people do have a very good chance of getting better. 70% of sufferers make a good recovery. The problem is that when you’re in that situation, you always think about the 30%, and you think about the fact that 8% of people that get it are fatalities. They’re the numbers that stick in your head when you’re going through that.

And how was the recovery process?
It was a slog. It was frustrating and felt like a lot of failure. I tell people that physiotherapy, for me, wasn't a great thing. They were doing great work, but if I managed to take five steps, they then asked me to take six, then seven, and it would always come to a point where I would get too tired through chronic fatigue that I’d fail, whereas I’d make a lot of progress when I used to sit and do my own exercises. It took two and half years before I got back to work. It was a gradual improvement as the months went by – hard work, but I think I had the right kind of attitude to keep going and try new things.

So what’s Getting Better Slowly about?
It’s a story about illness and recovery – we like to think of it as inspiring. If you try and sell a show about a rare illness no one’s ever heard of, it’s going to be difficult, so we’ve tried to make the show universal in its approach to illness, although the story does focus on my condition. It uses a variety of forms. I’ve brought in an amazing creative team: we have our movement director Marc Brew, who’s a disabled artist, and associate choreographer Kimberly Harvey, another disabled artist. With them having their own disabilities and afflictions, they have some understanding of the struggles I went through. Because there was a time I was worried I would be left disabled, I now make it a priority to work with and encourage disability within the arts. Although it is a play, there’s a lot of movement – I think I've lost a stone since I’ve been on tour. That's how much we move.

You’ve got an interesting set design too…
We didn’t want it to be a hospital drama – people have seen Casualty and Holby City, they know what it's like. We didn’t want to be as naturalistic as that. We don’t use a wheelchair, we use crutches. We don’t want to belittle people who use those items, so we made a conscious decision to not use props or scenery like you would see in a hospital. Kate Unwin’s design concept comes from a kaleidoscope, in the way that the story is told and the way rehabilitation is an ever-changing process. There are lots of reflective surfaces and they all move around and change. There’s quite a lot of links to science and medicine in that the floor design is quite nebular – it looks like a constellation – but it’s also based on the nervous system. There are also quite a lot of references to Superman. I don't think I'm Superman, but my mum thought I was and bought me Superman pyjamas and blankets, so it became a symbol of what I was going through, the way I was dealing with it, and getting stronger.

How does your co-star feature in the play?
One of the unique ways we tell the story is that Kitty Randle plays the illness itself. We personified it which gives my character Adam a chance to talk to his own illness. The reason it came about is Nick Woods, the writer, interviewed me and my family for hours, and we used some of those soundbites within the show. One of the questions he asked me when I was going through the illness was who my closest relationship was with. He expected me to say my mum or sister, but I said it was with the illness. It then opened up questions about what would happen if I could have a conversation with the illness.

How has it been playing Adam on stage?
The reason I always call him a character is because it is my story and I am playing myself. It means that I can step away from it at the end of the show, or in rehearsals I was able to go “This is how ‘Adam’ would be”, rather than how I would be personally. There were times in rehearsals it did get quite upsetting as we’re dealing with a very emotional subject matter for me, but my desire to raise awareness is greater than my own emotional self-care. But I’m quite happy to tell the story because it is unique and it raises awareness

What’s the reaction been like so far?
The charity [GAIN] are super happy. They were involved in rehearsals as well, and they’ve seen the production to make sure we were saying things that are medically correct. We had a medical consultant join us to make sure we were getting that bit right too, and even though there’s only a tiny bit of medical science in there, there’s enough that people can learn about it. Other people who have the syndrome have been to see it and are happy with how we’re telling the story and how it’s expressed. But one of the crucial things we say within the play is that every person with GBS has their own version of the illness – some people might not get as paralysed as I was, or they might be worse. This is my version of it.

What do you think about how disability in the arts is treated now?
There are lots of different programmes going up. There’s Ramps to the Moon, about supporting disabled artists, and a company called Unlimited, which could be an option for us in what we’re doing in working with disabled artists. One of the key things for me as a producer is when you contact venues to book shows and they see that the piece is working with disabled artists and disability running through it, there’s a kind of a fear. I think disability awareness is being raised, but there’s still a lot of work to do in terms of accessibility to venues and opportunity for disabled artists.

Getting Better Slowly, Friday 2 December, 7.30pm, Lakeside Arts Centre, £8 - £12.

Getting Better Slowly website