Coming to terms with a terminal diagnosis is not easy but one man is using his experience of living with Motor Neurone Disease (MND) to raise awareness of the condition and to bolster funds for its leading Scottish charity.
Richard Selley wrote Death Sits on My Shoulders to chart the physical and emotional challenges of MND, a rapidly progressing illness that stops signals from the brain reaching the muscles.
The disease can cause sufferers to lose the ability to walk, talk, eat, drink or breathe unaided.
It was while watching the Oscar-winning film The Theory of Everything that the former teacher, 64, realised he had the disease.
He said: “While watching the film it dawned on me: ‘I have Motor Neurone Disease. I have what Stephen Hawking has’.
“It started in exactly the same way, fumbling with my hands and being unable to grasp objects. I just knew.”
Shortly after, in March 2015, he was officially diagnosed after a battery of scans, tests and medical appointments. The life expectancy of his type of MND is a staggeringly short 14 months.
“After the devastating shock of diagnosis, I had to force myself to come to terms with the fact I would probably only live for a year or two more.
“The only option in that situation is to try and live in the present because good memories of the past and and thoughts about a very bleak future are simply too painful ”
Richard enjoyed a 35-year career at Loretto School in Musselburgh before retiring in 2009 and moving to Perthshire with wife Elaine, also a teacher, who he married in 2011. In 2013 he started experiencing symptoms of MND, most notably when a glass of beer slipped through his fingers.
The book describes Richard’s life with MND with searing honesty and elegant prose. His journey has not been without considerable hurdles but he has met each head on armed with positivity and humour.
“The worst thing about having MND is knowing there is absolutely nothing that can stop the disease from progressing.
“People talk about going under the proverbial bus, but those of us with MND know for sure that, not only is the bus coming, it will definitely hit us.”
As MND took hold, Richard had to surrender his driving licence, acclimatise to an electric wheelchair and accept that he will “never spend another night in bed with the women I love”.
The father of two daughters, Lorna and Megan, and step-father to his wife’s three children, Richard cherishes his moments with family and finds his weekly visits to his hospice, which he calls his “safe haven”, a source of happiness.
He recognises how hard it has been for his family to watch his decline. “There have been times I thought I simply couldn’t face any more of the constant losses that come with MND but I think it can be worse for loved ones “, he said.
“When my daughters or my brother visits I always think maybe this is the last time I will see them, I suppose my MND has brought us all closer together. My wife has been a tower of strength from the very beginning.”
He has four main carers who visit him several times a day and help him wash, dress, eat through his feeding tube and administer medicine. He says he is lucky to have such “wonderful people” to care for him and see him through his darkest moments.
After his diagnosis, Richard found that keeping a diary helped him come to terms with the new life that lay ahead. He started a blog, Moments with MND, to gather his thoughts.
He said: “MND has released me in terms of expressing my emotions. I have learned that showing emotion is far healthier than bottling things up.
“Perhaps, above all, having MND has taught me what is important in life - the way we treat each other.”
He has been amazed by the positive feedback he has received on the book, some of which has come from former students of his who have read his blog since its inception and who still visit him in Perthshire.
He hopes his book will help people understand what living with terminal and progressive illness such as MND is like and to appreciate the “terrible losses involved”, but despite them, he wants to carry on living.
“I have found that I now see things in a different way. I see things in detail that I used to only glance at - flowers or the birds on my bird table, the sunlight coming through the trees.
“I spend less time worrying about things I cannot influence, or that probably won’t happen.”
Death Sits on My Shoulders is available in paperback and Kindle on Amazon and money from sales will go to charity MND Scotland.