Shoelaces: A personal story of loss and perseverance

Roy Grimes never set out to write a book.

But he also never expected his brother Nathan to die from SUDEP and could not foresee the impact this death would have on his own life. Nathan was just 32 when he died in 2006.  

Roy said: “Nathan had suffered from nocturnal epilepsy since his late teens. Following a seizure, he would often wake to find bruises on his face from where he had hit himself or knocked into something. His sense of humour about his epilepsy made it more bearable for both himself and his family. He would occasionally email pictures of fresh bruises and make some casual or funny remark about them. He certainly wasn’t the kind of person to be overwhelmed or controlled by his condition. Looking back now, it’s clear to me I did not understand epilepsy or the risks it posed. Nathan was light-hearted about it and so was I. In fact, our entire family followed Nathan’s lead. Yes, we took it seriously, but it did not become a feature. I wish I had known then what I have learned since, perhaps it would have made no difference and then again, perhaps it may have. I guess we will never know.”

A few years after Nathan’s death, Roy was at home in North Devon when his 13-year-old son Daniel asked him if they could go for a walk together on the seafront.

Roy said: “Following many years of dieting I had ultimately given in to the fact that I was obviously born to be fat. I was 46, short in stature, weighed just over 21 stone and had a 48-inch waist. I had little self-respect and fully believed I would be dead before turning 50.”

Roy warned his son that he didn’t think he would be able to walk far, but he did not expect that he would become breathless just trying to tie his shoelaces in the kitchen. His son saw him struggling and asked why he was so out of breath?

Roy vowed to lose weight and by the time he was 47 had shed more than three stones. He even agreed to do a series of challenges with his pal Sean, one of which was a cycling ride.

“I used to love cycling as a youngster and had done a good number of lengthy rides, but those days were a long time ago”’ explained Roy.

“That being said, I felt good about my weight loss and felt I could handle a bit of a trek on a bike. ‘What if we cycle the length of the country?’. With Sean being a bit of a joker, I naturally assumed it was his attempt at being funny.”

Sean wasn’t joking. And Roy began to think more and more about his brother Nathan’s death. Roy had tried for years to make sense of it – becoming a supporter of SUDEP Action and writing countless letters to GPs to get better recognition for SUDEP and the risks of epilepsy.

He started taking the idea of cycling from Land’s End to John O’Groats more seriously. And the thoughts of his brother Nathan were never far from mind as he pledged to do the ride to raise money and awareness for SUDEP Action.

In 2014, Roy tackled the epic ride, a journey that required 18-months of planning as well as 14-arduous days and night on the bike. At the finish line, Roy intended to say a few words about his brother and record a video blog, but the wind had other ideas. The audio was lost in the gusts and Roy’s words carried away before they had chance to land. In the circumstances, he felt it was probably fitting – because the ride, and the whole experience of doing it, for Nathan, and to prove something to himself, was like a metaphor for dealing with life’s difficulties.

Roy said: “This journey, like the passing of my brother Nathan, taught me so much. It is in those memories, those incredible lessons, that Nathan remains alive.”

Roy has just written a book of his experiences called Shoelaces. It’s available from Amazon UK, paperback & hardback, see here.