Film-maker Simon Sly and his creative response to Multiple Sclerosis

On the walls, he has portraits of inspirational human beings, from non-violent revolutionary Mahatma Gandhi to film director Christopher Nolan, along with uplifting quotations – and all around the house, collections of gloriously colourful Lego.

It is evident Simon, 39, has a powerful impulse to explore and engage with life despite the fact he was diagnosed first with ME and later with multiple sclerosis.

The condition has robbed him of his teaching career, his physical energy, his manual dexterity and even made speaking a challenge – but it has not taken his imagination, ambition or creativity.

“It feels so worthwhile to create something and to have people enjoying what you have made,” Simon says, as he recalls the first screening of his film, The 12 Wonders of the Short Film World, for around 60 selected guests at a Swindon multiplex in the summer.

“The main purpose of the screening was so people could see the films I made. It was really great – I had worked so hard on making the short film compilation, so to see the end result on the big cinema screen was amazing, and it was great to share it with other people and to have them enjoy it.”

North Swindon MP Justin Tomlinson attended the screening, and Simon says he received lots of positive feedback.

The short film is made up of a dozen mini-films of a few minutes each. They are framed by an animation of a train progressing around the globe to memorable locations, such as the Eiffel Tower, and each mini-film emerges from one of the carriages. The films are often comic in tone, though a darker undertone is evident.

Simon says he is surprised that some people find them dark.

“I intend for them to be fun, and I don’t see them as dark. I encourage people to look at the fun bits and to hear the music and the enjoyment of it,” he explains.

Now he is hard at work compiling another collection, quirkily titled Short Film Catalogue VII, which is made up of a collection of music videos he has made, using collages of film, animations and images from the internet. The 11 films with a unifying frame will last about 30 minutes in total. He hopes to screen the new film in a cinema in July next year.

“The film will start upbeat, then become more serious, and then finish on an up beat,” he says.

Simon grew up in Swindon, a town he is proud of.

“I like Swindon, I think it’s great, and I am proud to be born and live here. All the trees everywhere make it scenic, natural and a pleasant place to be,” he says.

He went to Kingsdown School, then studied maths at Reading University.

It was during his university days that Simon first developed his love of film and came up with ideas for his own short films. He said maths helped his creativity by stimulating his mind.

“Doing a degree in maths made my brain more agitated – about lots of different things,” he explains. “One of those things was film.”

He trained to be a secondary school teacher of maths at Oxford Brookes University and secured a job at St Joseph’s in Swindon, where he worked for several years. It was a job he enjoyed, encouraging pupils and working with great colleagues.

But illness struck 10 years ago, and he was diagnosed with myalgic encephalopathy. He had persistent headaches but despite being very unwell, continued to go to work.

“One Christmas I was unwell for two weeks, and after that I went back to school but the problem increased,” he recalls. “I had ME for a couple of years. I had constant, very bad headaches. It is vital for people with it to know that there is hope and you can get better from it.

“I heard about the Lightning Process course from an article in a magazine through a friend of my parents. It is a form of neuro-linguistic programming and was very beneficial for me getting well again. Unfortunately, though, I began having issues with MS.”

Simon developed an intentional tremor, which meant his hands would shake when he went to do something. It took three years to get a diagnosis of MS.

“I had MRI scans and a spinal tap. I developed issues with a lack of energy, unsteady balance and difficulties with speech as well. I wasn’t too concerned by my diagnosis because it was just putting a name to symptoms I already had.

“I’ve managed to come to terms with the effects on my health. I’ve built a level of resilience and fighting spirit. I’ve created the kind of person that I need to be with challenges to overcome and problems to adapt for.

“You don’t always get to choose what happens to you in life but you do get to choose how you react, and I choose to react by making my creative ambitions a reality.”

Simon has also turned his attention to writing, and inspired by the concept of Superhumans at the 2012 Paralympics, he began to write a self-help book called Superhuman You.

Although it is a response to having ME and then MS, he says the book, which is available from Amazon, is applicable to anyone who wants more motivation and inspiration to overcome problems and get more out of life.

The book was a particular achievement because Simon finds it exhausting to concentrate for long periods of time, and has had to adjust his typing technique to accommodate changes in dexterity.

He worked for an hour or two every day for several months, until the book was finished.

“In the book I am asking the question, what makes us superhuman? What qualities would you need for that? It helped me when I was particularly unwell to think about all the things I had learned from having ME and then MS, and I thought I could help other people,” he explains.

As a budding film-maker, Simon’s favourite films are Changing Lanes, starring Samuel Jackson and Ben Affleck, which has themes of morality and social justice, and those made by Christopher Nolan, for their intelligence and complexity.

Simon has to be very disciplined in exercising every day to keep himself as fit as possible. He says his parents are very supportive, helping him with food shopping and household chores, as well as attending medical appointments. His friends help him with walking to a pub quiz or the cinema.

“I look forward to future creative achievements and making ideas I’ve had in my head for a long time an outward reality that other people can see, experience and enjoy. Any issues with my health I have, or will have, I can deal with,” he says.