Lucy suffers from Motor Neurone disease but doesn’t let it get her down
Diners chatted as the 18-year-old student approached a couple whose table in the window faced the River Spey in the town of Fochabers, near the Cairngorms National Park.
“I put down the gentleman’s plate and I went to put down the lady’s with my left hand when my hand just went,” recalls Lucy, who will be 24 in June.
As the plate crashed on to the tabletop, seemingly in slow motion, Lucy watched as a wave of gravy splashed up and on to her customer’s white top.
“I was mortified and kept apologising,” she says. “They were as nice as they could be but I had no idea what had happened to the strength in my hand. From then on the weakness just kept coming.” It would be 11 months after this incident that Lucy’s world collided with that of Professor Hawking’s.
In November 2013 at the age of 19 she was told she had the same terminal illness that he had – the only difference being that the world-famous cosmologist had been given his diagnosis at the age of 21.
In that instant Lucy became the youngest person in Scotland with Motor Neurone Disease – a condition that affects up to 5,000 adults in the UK at any one time–and one of the youngest nationwide.
Most people who develop MND are over 50. “At that point although I knew who Stephen Hawking was I had no idea what his condition was called,” she says.
“When I received my diagnosis it was my dad Robert who made the connection and said to the doctor, ‘Like Stephen Hawking?’ “I thought I had MS or a brain tumour. I had no idea what MND was so I was relieved until they told me it was incurable.”
MND is a fatal, usually rapidly progressing disease that affects the brain and the spinal cord, attacking the nerves that control movement.
In the final stages sufferers can be in full possession of their mental faculties and yet locked in their body, unable to move, talk and eventually breathe.
However, although a third of sufferers die within a year of diagnosis and more than half within two years, it appears that Lucy – like Hawking – may have a rare early-onset slow- developing form of the disease which offers her hope for a similarly extended future.
“I am quite lucky in the fact that like Stephen Hawking my MND is slow progression,” she says.
“Every time there is something new I can’t do I have quite a long time to come to terms with it before there is something else I can’t do. I look at him and the life he had and it gives me hope that I could have a normal life.”
Lucy has recorded her voice so that should she require a vocal machine, it would be her own voice
While Lucy knows that a lot of the obvious changes that occur as a result of MND are physical, she admits that the hardest battle by far is the mental one.
“I have always wanted children and I would dearly love to have a family of my own one day,” she says.
“But I am realistic enough to know that all the dreams and hopes I had before I was diagnosed are going to be harder to achieve now. Some dreams have to die in order for new ones to form.”
Professor Hawking’s death at the age of 76 on March 14 hit Lucy hard. To the wider world he was the brilliant scientist creating solutions to seemingly intractable theoretical problems.
And so it was with his illness – the fact that he was given two years to live in 1963 but survived for 55 made him an inspiration for people worldwide who are living with MND. Lucy calls him “my hero”.
“Stephen’s death shook me quite hard,” says Lucy who is slowly becoming paralysed.
“I had always expected him to be around, especially when he’d had MND for more than 50 years, so it was devastating really when he died.
“It is just extraordinary what he did with his life despite his MND. He is a hero, a pillar of the MND community who did so much to raise awareness and to show people that you can still do what you want to do.”
Hawking once said that “intelligence is the ability to adapt to change”. He would no doubt have approved of Lucy’s determination to squeeze the essence out of every drop of life.
“My dad and I went out for lunch after my diagnosis and you could tell he was hiding his feelings from me. He asked me how I was and I said, ‘I wish I had MS now!’
Stephen Hawking’s death shook Lucy who says he is ‘a pillar of the MND community’
“That set the tone for how I have dealt with it. It is part of our family dynamic to look for humour and part of my personality. It wasn’t until the following week that I had a chance to sit down and Google it. I could see all my symptoms there.”
Lucy, the youngest of three children, adds: “I was so young. Your 20s are normally the age where you find yourself and I’ve got to try to do it while having MND and the struggles that go with that on top of all the other struggles my age group goes through.
“I have my bad days and either my mum or my sister will say, ‘Get a grip of yourself.’ They have never said I can’t do anything. I still have the same funky walk as two years ago. It looks like I’m on ice, mixed with alcohol.”
Today she uses a wheelchair for longer journeys and can walk short distances with the support of family, friends or a carer who is with her six hours a day.
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We talk about what we are going through but we also have conversations about everyday things. Neither of us wants to be defined by this disease
“I have one friend who is older and who has had MND for 10 years,” she says. “We talk about what we are going through but we also have conversations about everyday things. Neither of us wants to be defined by this disease.”
Last January Lucy decided to record her voice at the Euan MacDonald Centre in Edinburgh so she will sound like herself if she eventually has to communicate electronically.
“I had to read about 300 sentences and so did my sister as MND had already changed my voice,” says Lucy, whose diction is a little slurred.
“They are trying to get close to my old version but, touch wood, I won’t need it. I will just try to articulate more clearly.”
Although her jaw sometimes dislocates due to the anatomical changes she is going through she says she is determined to avoid hospital for as long as possible.
“Surgery is required to fix this but wherever possible I shoot down the idea,” says Lucy, who has raised more than £178,000 for MND Scotland through her Just Giving page.
Until six months ago she was focused on her bucket list. “My old Scout leader asked for my list and when I told him that I didn’t have one he said, ‘Well, write one!’ ”
So for three years Lucy lived her list. She took a pottery classes, visited Stonehenge, walked the Speyside Way and flew in a helicopter over the White Cliffs of Dover.
And then she stopped. As the list began to run out of items it no longer seemed to offer the same comfort. “It began consuming my life and was my sole focus,” she explains.
“I realised that not only is it nice to have some uncompleted items on the list it also meant I wasn’t thinking enough about MND or really accepting the fact that I have it.”
Lucy has raised more than £178,000 for MND Scotland through her JustGiving page alone
For the past six months she says she has been working towards being happy with herself instead and “dealing with certain emotions”. Inevitably there have been tough questions: “What will happen if I can’t swallow? Will that mean I’ll have to get a feeding tube and what happens if I don’t?”
She has also reflected on assisted dying. “It is almost as if we have more compassion for animals,” she says.
“If you are terminal and your last few months aren’t going to be great I don’t see why you should have to suffer. I would urge detractors to watch one of their loved ones going through that. I think it would change their mind.” Lucy is a reflective person and the upshot of her ruminations is the revelation that she does not have to live her life “solely in the present”.
“Just because I have MND does not mean I should not do normal things my age group do and that I should not look forward to the future,” she explains.
“I am still fun-loving and energetic. It might be a bit harder for me but I believe in the challenge because you can do anything you put your mind to.”
For more information on Lucy’s fundraising visit lucysfight.com
Read more here: Daily Express :: Health Feedhappy wheels
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