“I was very active, I was sporty and fit. I was working as a freelancer in the midlands. I just didn’t expect it to happen…”

Getting better slowly is the story of one man’s life changing struggle with Guillain-Barré Syndrome. A disease not many people know about and a disease that changed ones mans life.

“It was really scary, for the first week I was undiagnosed.” At the age of 26 Adam Pownall was struck down with Guillain-Barré Syndrome and now on the recovering side he is telling his story through combining his love of dance and performing.

“It started as pins and needles in my feet and worked its way up. I went from normality to fully paralysed in three weeks”.

Describing the terrifying development of the condition, to the point of being unable to move or communicate, Pownall explains: “It got progressively worse, till the point when I was locked in. I had a fear of dying and was unable to tell anyone. On my way down to surgery I thought this was it, game over”. The operation was a turning point in Pownall’s case and although successful it took him a full two and a half years to recover.

“When I was ill it was my family that first engaged with Gain Charity,” he says. “It is such a rare condition and such a small charity that I really wanted to raise money for them”. Pownall was able to us his connections in the arts industry to make this happen. Art and theatre is for everyone and Pownall has helped to use his past to create an artistic and educational show. Getting Better Slowly sets out to be accessible for all and is helping to increase awareness of the disease and the journey to recovery.

A combination of dance, speech, sound and text, Getting Better Slowly doesn’t miss any part of Pownalls’ journey, and the idea came about after a seemingly minor moment, that led to inspiration.

“Nick Wood (The writer of the show) accidentally kicked me in a meeting, and with my hyper sensitivity due to nerve damage I jumped back.” After relaying the story and explaining why his reaction seemed so big Wood said “I know it is a horrible story but it would make a good story to tell.”

With other prominent companies like Candoco and Deaf Men Dancing there is now a thriving awareness of disabilities within the arts. That was inspiration as well as reassurance for Pownall. “When I was sat in my wheelchair, one time I remember thinking back to some workshops that I once did with Candoco and I thought even if I don’t get better I can still have a career and work in the arts,” he says.

“There is such a stigma around men and illness and being able to show their emotions. I am glad to be able to be open about illness and disability.”

The show tackles an intimate experience of illness, and it is not only attracting fans of theatre and dance but also fellow Guillain-Barré Syndrome sufferers and even people from the medical industry “After one performance we had a practitioner said that she would change the way she practiced after seeing the show. The way she would talk to patients and handle them,” says Pownall.

Getting Better Slowly explores so many themes and the production is being live streamed on February 26. This in itself is helping to increase awareness of both the disease but also the road to recovery and bringing the production to people that would otherwise not get to see the show. “You’d expect it to be a misery memoir but it is inspiring and oozes positivity,” says Pownall.

Getting Better Slowly tours until February 26.

Image: Rob Day