MS, Mary and me

John opens up on life with childhood sweetheart Mary and her secondary progressive MS.  

"We were lucky," says John. It is something he comes back to, again and again. A stoic some might say, especially when John is grieving for Mary. But that doesn’t capture the half of it.  

A conversation with John is a deeply uplifting experience. It’s a tale of love, thoughtfulness and adventure. I came away wishing I’d met Mary, because she sounds like a gem. 

Let’s rewind to 1961 when they met. Both were 15. They lived a mile apart, but Mary opened up a new world for John.  

The great outdoors.  

It gave them a deep connection, walking and exploring the Scottish countryside together and later across Spain. And it continued even when Mary couldn’t walk anymore, like the time her wheelchair got stuck crossing a sand dune.  

"You had to try," says John wryly.

Or the last time they went walking in the street holding hands, Mary beside him. A memory etched in his mind. 

They married at 20. Both loved children and had three. Life was going along just fine until Mary lost the sight in her right eye. She was in her early 30s and training to be a nursery nurse. Mary’s eyesight returned, but it would take four years before she got her MS diagnosis. 

As the news sank in, she assumed they would split up and John found himself having to reassure her that this just wasn’t the case.  

For John’s part, he was determined to make Mary’s life as normal as possible. 

It seems incredible now, but at the time of her diagnosis there was one doctor who specialised in MS in Scotland. Luckily, he was only 15 miles away. Over the years Mary saw three MS nurses. The first was invaluable and a fount of knowledge, managing a huge number of people with MS. But in the years that followed, Mary and John sometimes felt that they knew more about MS, with their decades of lived experience.    

Life continued, largely uninterrupted till their first trip abroad at 40. The heat took its toll, and Mary’s symptoms flared.  

Now and again, Mary spent time in hospital. If they went out, she got very tired. John thought a wheelchair might help but felt conflicted. He didn’t want to upset her.  

It turned out, Mary felt the same way, having touched on the idea with their daughter the day before. By 1990, a wheelchair became a necessity when Mary was told to stop walking altogether.  

As John looks back, he’s pragmatic about Mary’s MS.

So, they got on with living.

“We were lucky to go to Las Vegas several times and travel all over Spain. Mary was up for it. In fact, she was more worried about my seasickness when we thought about a cruise!”

They worked out a way of getting Mary, her handbag and two suitcases (one on the wheelchair handlebars) away on their travels.

Sometimes they got help. John can’t praise Spain’s Sin Barreras enough. This free, bookable service at Spanish airports helps those with mobility needs to and from the plane, hassle-free. The staff made them feel so welcome and at ease - nothing ever felt too much trouble.

Mary didn’t always feel like going on holiday. And that was fine too. Respecting her views was important for John.

In the 1990s, they tried to get her on an drugs trial. They spoke to a doctor about taking part, but they were not accepting people with Mary’s type of MS. Reading the news hype around drug trials was often hard to take. John hated hearing about them because he felt they gave false hope – for them at least.

It was just so frustrating.

But there were many positive moments. Like the time Mary carried the Olympic torch ahead of the 2012 London games. Or when they spoke to students at John’s school about living with a disability.

They didn’t have to worry. The students showed nothing but respect and for John and Mary the whole experience was a positive one. They talked through what MS was and how it affected Mary. She brought MS to life, explaining how her brain played tricks - telling her she was moving when she was in fact standing still. Years later, past students came up to John recalling the time they met Mary. She’d made a big impression.

As John talks about his life, it’s clear he’s had to adapt over the years. He found himself sometimes overreacting to things when he was younger. Mary’s MS changed that.  

It focused your mind, said John. Occasionally he felt unable to say the things he wanted to, always conscious of not wanting to upset Mary.

He learnt how to cook with Mary’s help. He’d wake thinking it was a great day for washing and got used to picking out clothes for her.

He felt chuffed if someone complimented her on her dress. It meant something. Because ever since she was young, Mary had made the effort to look neat and tidy. 

Sometimes he found the wheelchair a barrier. He felt uncomfortable when people spoke only to him – the one behind. So, he learnt to move to one side to include Mary in the conversation.

He doesn’t downplay how difficult caring was at times. It became a 24-hour job, made possible thanks to John’s early retirement. But it was never one-sided.

Yes, there are sacrifices, but there was a reason for them. And it gave him a lot of pleasure too.

They were lucky to have a supportive family and were surrounded by friends in their sheltered accommodation.

A lot depended on what Mary could and couldn’t do on any given day. She liked to embroider while her hands allowed, both loved reading, and simple things like sitting together became important.

Their annual trip to Nairn was a highlight. A week away at a hotel (now under new management) enjoying a charity-run pampering week with the same crowd each year. They made lifelong friends with those in a similar situation to them, people who understood.

Sometimes Mary voiced her fears. Her biggest dread was the thought of losing her voice. And she worried about John dying before her. How would she cope?

Mary liked to plan you see. It’s why they got carers in to help her get in and out of bed, and shower.

The days now started with an uplifting voice at the door and before you knew it, Mary and the carer were singing.

It also meant that John was not alone the morning Mary died, something he is hugely grateful for.

There are difficult days as you’d expect after 60 years of shared memories. A return to Nairn proved too much, too soon. John saw a couple with a wheelchair walking the coastal path and came home early.

But in the face of grief, John feels lucky.

Lucky to have shared a life of respect, trust and love with Mary. And lucky to be surrounded by friends and family who remember Mary’s easy smile, empathy for others and her ability to live life on her terms, doing the things she loved.

Side by side.

• Read about Sin Barreras on Aena's website – Spain's state-owned airport operator.
• Visit Spain's official tourism website to learn more about its accessible tourism.
• Read our holiday tips for a smooth getaway.