It is a glorious August evening in Aberdeen and Mark Ferguson is on the beach with his wife, four children and 50 of his closest friends.
Mark, 44, was diagnosed in January with the degenerative condition called motor neurone disease.
He walks with a stick, but he’s here to join in with the last few steps of a charity walk organised by those many friends of his.
All through the month of August, they have worked to collectively walk 15,000 miles to raise money to help Mark and his family refit their home with specialist equipment.
The effort has been enormous. One of Mark’s cousins in Inverness walked almost 600 miles in the 31 days.
The beach is the culmination and a celebration. Mark is all set to lead the crowd the short distance from the public toilets at the Fittie end down to Burger King.
But something’s not right.
Earlier, Mark – a former lead singer in an Aberdeen rock band – was in typically gregarious mood, welcoming everyone to the start line.
But as the walk begins, it’s clear Mark is struggling.
Flanked by wife Lucy he almost reaches halfway, lagging far behind the large crowd of people noisily walking down the esplanade. Eventually, the crowd turns around and walks back, enveloping him in its mass.
Mark is disappointed, despite everyone telling him how well he’s doing. But it is another tough day in a difficult week.
A few days before he was fitted for a wheelchair. He also recorded a list of phrases that will allow his voice to be digitised. When the time comes, the voice bank will allow him to speak through a computer.
So, on this beautifully sunny afternoon, framed against the blue expanse of the sky, Mark takes in the mass of people, all there on his behalf, because of the disease that is slowly killing him.
Mark leans in to the person beside him and says quietly: “It’s like being at your own funeral, isn’t it?”
‘It’s going to be hard when I’m not here’
A week earlier, Mark is sitting in a booth in a Union Square bagel shop.
One of the hardest things Mark has had to face in the months since his diagnosis is the speed at which his condition has deteriorated.
He compares his own situation to that of an old friend, Martin, who was diagnosed with MND five years ago.
A week after Mark’s own diagnosis, the two went out for a drink. At that time, Mark had a slight limp. Martin walked with a push Zimmer and had trouble with his hands but was otherwise coping well.
“I thought if I’m like that in five years I’ll be happy,” Mark says. “But I’ve already overtaken him.”
Mark details the changes that have happened to him over the past seven months.
He struggles to put on shoes, tie shoelaces and do the many other things that for years this fiercely independent man took for granted.
He talks about the guilt he feels from thinking himself a burden to his family and the financial concerns he says gives him the most stress.
“I’ve still got a mortgage to pay,” says Mark, who works for Aberdeen-based engineering group Wood as a senior data analyst. “It’s going to be hard when I’m not here.”
Meanwhile, he has to deal with the demands of a young family.
His oldest daughter Chloe is 24 and has been by his side since the diagnosis.
However, his other children – Mylo, 11, Luther, 5, and August, 2 – are still too young to fully understand what’s happening to their dad.
“They know I’m ill but they don’t know that there’s a countdown,” Mark says.
“I don’t know how long I’ve got left so what do I say?
“We’re all going to die one day so why put a timer on your life or mine?”
‘Like an alcoholic who’d gone sober’
Mark’s MND first showed up two years ago as an arm spasm.
“I was losing weight, but I just thought it was because I hadn’t been to the gym for ages,” he says.
“Then one night I was out drinking with pals and I got the jitters all down my right side, like an alcoholic who’d gone sober. I phoned the doctor who told me to come straight away.”
From then on there were tests. Then more tests. Some of the test involved needles.
“I don’t like needles,” says Mark. “Despite being covered in tattoos.”
A doctor brought up motor neuron disease relatively early in the process, but the final analysis was due to come on December 23, just before Christmas.
“I said to them, unless it’s a miracle, don’t tell me so I can enjoy my Christmas,” Mark recalls.
Instead, he got the results on January 5. There was no miracle.
Not a dry eye in the house as The Tijuana Suns reform
But though Mark’s MND diagnosis has turned his life upside down, it has also brought an outpouring of love from those close to him.
The charity walk is just one of many fundraisers friends and family are organising for Mark.
There have been 10k runs, kilt walks, golf events and hikes up Bennachie among others.
In March, Mark’s band The Tijuana Suns reformed for one final gig at Aberdeen venue Drummonds, raising £5,500 for an MND charity.
Tickets sold out in just 30 minutes, and the raucous, unforgettable evening ended in Mark – walking stick in hand – basking in the spotlight in front of 600 people.
“What a night,” says Mark, who like the rock frontman he is still worries that his voice wasn’t quite up to the occasion.
“I’m not who I was,” he explains. “And people were crying and everything.”
More fundraisers are planned – an auction for an Aberdeen FC football shirt donated by club captain Graeme Shinnie and a dinner & dance at Pittodrie.
The call to action, and the amount of people that have rallied round, has left Mark with what he calls “a weird feeling”.
“It’s a dichotomy, really,” he explains. “I don’t like what’s happening with my body, but I’ve never felt so loved.”
Meanwhile, he finds himself depending on his friends more and more, something that he finds difficult.
“I can barely pick my own nose,” he says with a laugh. “I need help with everything. Being independent is getting harder.”
Ultimately, however, he knows the circle of support will be there for him as his condition worsens.
“I know that I’ll need friends and I’ll need crutches,” he says.
“They are going to be stronger than me.”
Mark’s GoFundMe page can be found here. To follow his story on Instagram, click here and to see what events are still to come, click here.
