I can’t walk and use my arms but I can still speak

Julie, her son Russ and her father on holiday.
Julie, her son Russ and her father on holiday.
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Julie Drakeley’s just recorded her life story.

She’s not a celebrity and not about to appear on Desert Island Discs.

Rather, Julie doesn’t have long to live.

In 2010 she was diagnosed with motor neurone disease. The disease affects the body’s motor neurons – the cells that control muscle activity - and in its advanced state can result in the inability to speak, swallow and even breathe.

But that doesn’t stop Julie.

Julie, aged 48, of Brincliffe in Sheffield, is single mum to 17-year-old son Russ, she worked at the Royal Hallamshire Hospital as a project manager and, more importantly, she’s just taken part in a ground-breaking project run by St Luke’s Hospice.

The project, known as the Oral History Project, allows patients to talk about their life history and record it on to disc.

“I wanted to pass down my life story to my son,” says Julie. “I have motor neurone disease and I have lost the ability to walk, use my arms and many other things but I still have my speech.”

But, for how long, she doesn’t know. “I wanted to record it sooner rather than later as I don’t now how much longer I will have clear speech for. I deteriorate all the time so there is a sense of urgency in all this.”

And now, having just committed her life story to disc, she’s pleased she did it.

“It was a brilliant thing to do and it’s amazing how all the memories come flooding back. It made me realise that I’ve had a really interesting life so far too!

“I’m not a celebrity and I haven’t invented anything but there is a lot to say. And I’d like to think that my son will be able to know more about me when I’m gone.”

Julie was interviewed by Tim Bryan, one of the volunteers on the project.

Tim started volunteering at St Luke’s after his wife died of breast cancer. “The fact there was a bed here for her was a huge comfort to us, so when she died I wanted to do something charitable.”

So, Tim’s role is to listen.

“Everybody has a story,” he says. “And sometimes you can see people come to life as they tell you certain details about their lives.

“But I have to make sure they give full details. When someone says ‘Aunty May’ I try to get them to explain that person’s connection to the family, because their great great grandchildren who listen to the recording will not necessarily know who Aunty May was.”

Julie believes Tim is the perfect man for the job.

“Tim was really good because he’d structure the interview by saying things like, ‘Tell me about your grandparents’, ‘Tell me about you parents’ and that reins you in – which is what I need because I could talk forever!”

Julie’s story starts with her grandparents, who moved to Sheffield from Grimsby when her father was a little boy. “My dad had polio as a child so they moved here because they heard St Edward’s Children’s Hospital was really good.”

Her grandfather worked as a political and Royal correspondent for The Star, and was one of the first reporters to use ‘the field telephone’ – a very early and somewhat cumbersome version of the mobile phone.

“I can remember him taking me round the offices and I thought ‘wow’. It’s stuff like that you’d forget if someone didn’t ask you about it.

“I look back now and I realise I inherited my fondness of writing and my ambition to be a journalist from my grandad.

“That’s one of those things I think my son would like to know about his mum, that I always wanted to be a journalist and was accepted on to a journalism course but then I met a boy so I didn’t go. I’m really glad Tim captured that on the recording though.”

But while Julie inherited her dream to be a journalist from her grandfather, she got her defiance from her father.

“Even though my dad had polio he never let it stop him. He was a really determined man and believed you should always be the best at what you can be.”

His mantra paid off and he progressed from engraver to running his own successful engineering business.

“It did very well and I was sent to Cheadle Hulme boarding school in Manchester,” says Julie. “He worked very very hard.”

Julie’s inherited defiance was manifested in her career. At just 28 she was the regional manager for Henry Spencer and Sons estate agent – the most senior woman in the company at that time.

“It was the mid-80s and it was a very different world to that of today, and much more sexist. The estate agent business was very male-dominated. I remember when I was interviewed for a job and the person doing the interview asked me, ‘What will you do on a Friday when all the men go to the pub at 5pm?’ And this was an interview in a hotel bedroom!”

Julie’s boldness also defines her life today. “People say I shouldn’t be working but I am. I don’t have hoists at home and I believe that once your life is over it’s over and I’m not ready to die now. As my father would always say, ‘Don’t let the buggers get you down’.”

One of the defining features of her life is music. “Music has always been a touch-point for me and it served as a reference point when I was remembering my past.

“I remember loving Abba and the Human League at boarding school and because I was from Sheffield and the Human League were from Sheffield I was the ‘cool’ girl. That was really good!”

But these are just snippets of a rich and varied life.

“It was very cathartic doing the interview but there were moments when I got a bit choked up. But overall it felt like I’d had a big clear-out.”

But she doesn’t want her son to listen to the disc now.

“It’s for when I’m gone. It’s all the things that you’d find out about your parents over time, but we can’t do that, we won’t have that time. I also wanted to do it at a time when I was well – not at a time when I’m about to die.”

Julie and her son are very close. “I have carers that help me get dressed, feed me breakfast and take me to work, but after the evening meal it’s my son who looks after me. He is amazing and we discuss everything, right down to my funeral arrangements.”

Julie lives a full life in spite of her suffering. And that life is now made better in the knowledge that her son will one day understand how his mother became the woman she is.

The Oral History Project is run by St Luke’s Hospice and is available to all its patients.