He took a nap to sleep off a hangover and awoke to a life changing disability that would be a mystery to doctors for the next four years – KERRY SMITH tells the inspirational story of James Sutliff and his battle with Dystonia
Putting a face to the name of
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hat you see is not what you get with James Sutliff. A dashing six ft tall, tattooed, 31-yearold fitness enthusiast strides into the studio for another photoshoot – but he is not here to fulfil a dream of becoming a model. Eight years ago, James was a healthy 24-year-old enjoying a career as a plumber and rugby player. His life changed after he woke up from a night out feeling unwell. Putting it down to a hangover, he took a nap. When he awoke, he could no longer talk. “Me being me,” says James, “I thought it was just a virus but weeks and then months passed.” After finally being persuaded to see someone about his condition, Doctors were staggered. Suffering with slurred speech and problems with eating and drinking and a quickly developing stiffening of the hands, baffled health professionals were unable to help him. The painful tension in his hands turned simple tasks like writing, dressing or handling money into tedious challenges. His hopeful rugby dreams and plumbing aspirations had to come to an end, which was difficult to come to terms with.
His confidence crumbled making it difficult to socialise and easy to slip into the habit of hiding himself away but this photoshoot presented a different James Sutliff.
after being diagnosed with a mild form of Dystonia, he decided to change his outlook. “It is what it is and I can’t let it just take control of me.”
It started with visits to the gym; “he can manage his symptoms physically, emotionally and mentally,” his wife Sam, 29, believes. She goes on to say that building his selfesteem through the way he looks has been a great strategy in dealing with his symptoms. Working with the gym equipment, using his hands has become more manageable and has given him the drive to prove that a book shouldn’t be judged by its cover.
Botox is injected every three months into his forearms and left thumb. To make speaking easier, it would also be injected into his tongue and neck but this proved problematic causing an overproduction of saliva. Success came recently after discovering exceptional medical advice closer to home in Leicester and breakthrough physiotherapy appointments have been made just two weeks ago.
Sam is here to assist with the interview. Being friends since before his symptoms arose, she has seen him through all his ups and downs. “We were casual for a long time. After this happened, a year passed and we cemented the relationship. It’s been a challenge for both of us but this is the man I love so why wouldn’t we go through it together.” Four years went by of being put to the bottom of priority lists but the couple were determined to give a name to the disorder. After pushing to be seen by specialists in London, tests revealed that everything was normal. It was hard living without answers but
Gym tips by James “For me, I don’t do heavy weights or ego boosting training. Lighter weights and high reps with slow and controlled movements are best.”
Experts say it could be many things that bring on the mystery that is Dystonia. It can develop at any age, sometimes after a traumatic event that causes stress. Concussions from rugby games could be a possible catalyst but James doesn’t dwell on why, instead he focuses on how. It took 13 years altogether to get the body that is now helping him spread the word about Dystonia. Using social media to document how he defies the odds in the battle against his symptoms has made him an online and local celebrity. “He’s become a sounding ear for people with disabilities. He has people contacting him daily saying they’ve seen his inspirational story.” Just then, James is notified of a comment reply to a picture he posted an hour ago from a lady with disabilities in Hawaii. The neurological movement condition is highlighted in America far more than it is in Britain and it is his mission to put a face to the name of Dystonia here in the UK.