With a flash, fast car and a company credit card that was his passport to the country’s most swanky hotels, Scott Johnstone had all the trappings that a successful career in sales bring.
But then, in his early 40s, came an event that would go down as the most humbling of his life. He was diagnosed with epilepsy.
When his wife, Moira, first told Scott she believed he was having seizures, he dismissed the suggestion out of hand. Epilepsy was a children’s illness, he insisted. It was nothing to do with a man like him – a professional, with a degree.
The couple and their daughter, Cora, were enjoying a fun weekend in Edinburgh, where they hopped on and off trams and posed as tourists, when Moira told Scott of her fears for his health
On the drive home to the village of Douglas in South Lanarkshire, the family swung by Moira’s mum’s in Symington.
Sitting on her couch, Scott detected a heady perfume and asked what it was. Then came the realisation he had wet himself. He’d had had a seizure.
When he had another episode during the night at home in bed, a composed Moira had the presence of mind to capture it on video.
On showing the film to a neurologist, it led to an early diagnosis of adult onset idiosyncratic epilepsy leading to focal seizures.
Known as an aura, the condition can give rise, prior to a seizure, of unusual smell or taste sensations, a strange feeling in the stomach that’s hard to describe, a sense of deja vu, and tingling in the limbs.
“I could not believe it. I was annoyed,” Scott told Lanarkshire Live.
“I had a career in sales of 20 years, during which I worked my way up from graduate sales rep to key account level, with accounts that included the NHS, the prison service and local authorities. I travelled up and down the country, from Manchester to the Hebrides.
"To go from this to having a neurologist tell you you have a condition I didn't think you could get as an adult, seemed surreal.”
Having not experienced an extreme event such as the trauma of a severe head injury, there seemed no explanation for Scott’s epilepsy, other than perhaps the stress he was under at work.
Required by law to surrender his driver’s licence, Scott – who’d previously trained as a chef at night school – took time out from the rat race.
“It’s okay to have a couple of months of a career break, but a whole year is a hindrance,” the now 50-year-old said.
“If you say you have epilepsy, very few employers will take you on.”
Scott took a job in a kitchen and his employers told him he was doing well. But when he asked to take time out to attend a brain scan appointment, he was shown the door with a pay-off.
“They said they were looking for a line cook and I was too much of a chef,” he continued.
“Maybe my ears were too big for the hat. They’d have said anything to make the story fit.”
Having lost his status almost overnight, Scott admits it took a long time to get back on his feet, his confidence plummeted and he became a virtual recluse.
From another kitchen, he called his wife and told her he couldn’t do the job.
Moira told him it was okay to quit – on the proviso that he first phoned his GP. And when he did, his doctor immediately referred him to the community psychiatric nursing team.
Medical insurance through Moira’s employment as a civil engineer also enabled him to consult a psychiatrist privately.
“I hit rock bottom a couple of years after the diagnosis,” admits Scott, whose condition has resulted in memory loss.
“I thought I was back on track to get back into sales, but it didn’t work out. I could not handle it. There is a tree no longer in existence.
"I had focused so much on hanging on it that I had to go and cut it down. The only reason I would leave the house was to go running. I would run in the hills so nobody would see me.
"I hid when the window cleaner came to the house. I was totally anxious.”
To give him impetus to leave the house, the family took ownership of nine-week-old puppy, Sid – one of the family’s two Labradors.
Community psychiatric nurses referred Scott to the Clydeside Community Initiative who, in turn, introduced him to the Branching Out project.
Through this initiative, he would join a group of people in similar circumstances in a woodland setting to learn woodcraft skills by firelight. Scott sat behind Sid throughout, using him as a protective shield.
Clydesdale Community Initiative also signposted Scott to Healthy Valleys – a community-led health project whose vision is to reduce health inequalities, promote positive lifestyles and improve health and wellbeing in rural South Lanarkshire.
There, he began preparing lunch for volunteers and progressed to leading cookery groups and becoming a walking leader.
Scott also took solace in running and talking with the new people he’d met.
The way he sees it, whatever is said during these group running sessions gets blown away in the wind. There’s nowhere it can stick.
“It’s where middle-aged men in the West of Scotland fall down,” said Scott.
“They don’t ask for help. And, if they're offered it, they don’t accept it. If they’re asked what’s wrong, they’ll say: ‘nothing’.
"The village of Douglas used to have four or five factories and a couple of pits. On their way from home, men would stop off for a couple of pints and get their moans out, and go home feeling better about themselves.
"That has been taken away from a lot of people.”
Although the activities afforded to him by his involvement with community groups gave a new sense of purpose, Scott was among the 66 per cent of people with epilepsy who are unemployed.
And, although medication can control the symptoms of around 70 per cent of people who have epilepsy, it’s a sad indictment that 63 per cent of respondents to a recent survey said they’d be scared to work alongside someone who has the condition – an alarming revelation that Scott puts down to fear and misunderstanding.
When posters appeared around Douglas promoting EmployAbility – an agency that empowers companies to put inclusion and belonging at the heart of their culture – Scott applied and was invited for interview.
Rather than being signed up as a client, he was offered the position of employability adviser to people who have epilepsy.
For the past two years, Scott – who hasn’t had a seizure in more than four years – has worked as a project coordinator with charity, Lanarkshire Epilepsy.
The job he loves has introduced him to many people with their own stories of their own epilepsy and the journeys on which the condition has taken them.
From the 17-year-old boy who, after diagnosis, was able to play football again with Street League and take up a modern apprenticeship in joinery, to the woman who found herself inside the milk refrigerator in her local supermarket following a trance seizure, and the man who was arrested and spent the weekend in a cell “for his own safety” when officers mistook his trance seizure as drug or alcohol misuse.
“I do not have a great deal of self-value,” said Scott, who considers himself fortunate to have been prescribed Keppra – a medication that has been his constant.
“When I heard Street League viewed that lad as such a success after the referral I gave him, it meant that what I did was worthwhile.
"I sincerely hope he goes on to be the best joiner he can be. How I helped him and his family is worthwhile.
“Developing epilepsy is very humbling. When I was in sales, I could say I’ve got a bigger car than you and a company credit card which meant I could phone and book a fancy hotel.
"I had all these possessions. Having developed epilepsy, after a few years, I realised these things are not important in my life. I do put the addendum on there, though, that life’s too short for cheap shoes.”
As coronavirus restrictions begin to ease, Scott can refer people and their relatives to Lanarkshire Epilepsy’s counsellor when they feel ready.
Preparations are now in place to launch a youth group and a ‘third age’ group for retirees who are diagnosed with the condition later in life.
His advice to anyone who has recently received a diagnosis of epilepsy is to "spread the word".
Scott added: “Tell everyone you know - friends and family - because, then you’ll have an extra pair of eyes looking out for you.
"Once you feel up to it, seek out a charity or group and get other people’s experiences. Don’t listen to rumour or hearsay and do not seek the advice of Dr Google, other than to find a group.
"Dig any deeper, and you’ll get witchcraft and misinformation.
“Feel your way through it and get help along the way. You are still the same person you were before you were diagnosed. It is still you.”
For more information, head online, see Lanarkshire Epilepsy’s Facebook page, or call Scott on 07506 643 499.
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