‘I may have lost my feet do feel lucky. I’ve been
Struck down by meningitis in 2002, Olivia Giles could so easily have died. Now she’s helping others rebuild their lives just as she did
IT WAS an image that lasted only seconds for Olivia Giles as she awoke from a fourweek coma – but one that made her feel a deep, primal fear which would drive her waking moments. At the age of 36, she had just been told her hands and feet had been amputated to save her life after being struck down by meningococcal septicaemia.
Lying in her hospital bed, heavily bandaged, she refused to believe the news at first – before a sudden, appalling thought struck her about her new situation. How would she move around?
She recalled: ‘ I had a fairly instant, horrible, deep-rooted fear that went through my head – it was an image of me having to crawl about on the ground. I never voiced it. It was my secret, terrible nightmare.
‘But then, as quickly as it had come, it went and I realised that whatever happened I would be OK. I had a wonderful family and lots of support around me and I knew I would be well looked after.’
Nearly 13 years on, she heads her charity, 500 Miles, which supplies prosthetic limbs to developing countries. She has helped hundreds of disabled people to walk – many for the first time – who have no access to the type of healthcare service she received.
Now Olivia Giles OBE – she was awarded a gong in 2010 – has been shortlisted for this year’s Burns Award, for her humanitarian work.
It’s yet another milestone in a remarkable comeback which has seen her battle to regain her independence and use her harrowing experience for the greater good.
If she ever had doubts about her future path, and she’ll admit to none, they were quashed by facing up to the fear she felt as she emerged from her coma.
‘On my first trip to Malawi,’ she explained, ‘I saw a man who’d had his leg amputated, crawling about in the gutter at the side of the road. He wasn’t much above the pavement line but he was totally absorbed by how to manoeuvre himself out of the gutter.
‘There I was, travelling in relative luxury in the passenger seat of a nice car with my NHS state-of-the-art legs. It had a profound effect on me. I realised that if I’d been born in Africa instead of the UK, I’d be crawling in the dirt too, scavenging for food and being treated as if I deserved it.’
Her charity’s clinic in Lilongwe, Malawi, has fitted 4,000 devices since it opened in 2009, while a clinic in the north, which opened two years ago, produces and fits 45 each month. Miss Giles, who lives in Edinburgh with her husband Robin, said: ‘I am so lucky to be alive. I was given a second chance. I want to give them a second chance too.’
She was working as a lawyer when she began to feel ill one afternoon at work in 2002. She said: ‘It felt like a very bad cold, but by the next day my hands and feet were itching and I was freezing. By the afternoon my feet were covered in angry purple marks. Then I noticed them on my hands. At the time I didn’t know what was happening, but they were symptoms of blood poisoning.
‘I remember calling the ambulance myself and it took me to hospital, where the last thing I remember is my partner, Robin – now my husband – arriving.
‘It didn’t occur to me that I was nearly dead. I didn’t think of saying goodbye. His head came round the curtain and I thought, “He’s here. I’m safe,” before slipping into a coma. I don’t remember anything after that until I regained consciousness four weeks later.’
She added: ‘That first day they’d told Robin there was a fair chance I wouldn’t make it to the morning. My flesh was dying and my internal organs were struggling. Robin and my mum and dad were at my bedside, and they could see creeping black on my limbs as they became gangrenous.
‘One evening the doctors told them they were going to have to amputate all four of my limbs, above the elbows and knees, and asked whether they should do that or switch off the life-support machine and let me go. My family decided I would be so dependent that it wouldn’t be much of a life.
‘But the next day the plastic surgeon who was on duty said he might be able to save my joints – and that was what made all the difference.’
Waking up from her coma, she suffered terrible nightmares. Finally awake, she found herself for days in a ‘no man’s land’, where nursing staff were telling her she had had her hands and feet removed but she refused to believe them because she could still ‘feel’ them under the bandages.
She had to learn to do everything again. She said: ‘At first, rolling over in bed was beyond me. I was getting plaudits just for breathing. The biggest watershed for me was without a doubt taking my first independent steps. It was overwhelming.
‘I’d been learning to walk with support from a frame or from physiotherapists. Then one day I thought: ‘I can do this. Let me try.’ I managed a couple of steps. I had to lie down and just lay there weeping. That’s when I realised I was going to be OK.’
Returning home was the second big breakthrough. ‘Lots of doors closed to me when I lost my limbs,’ said Miss Giles. ‘I loved Munro bagging and I won’t be able to run again because meningitis damaged my muscles in my knees. You miss things like being able to hold someone’s hand. That’s a big loss.
‘Or I hear my friends talking about
‘I think about all the wasted opportunities’
shoes or having their nails painted. But I’m pretty independent now. I have various prosthetics for things like driving and cooking.’
One would imagine that feelings of bitterness or regret would sometimes creep in. But, surprisingly, Miss Giles admits to none.
‘Looking back at my life before,’ she said, ‘I think about all the wasted opportunities. I loved my job but I didn’t really contribute anything to the wider world. It was really a selfish, focused existence, although it didn’t seem like that at the time.’
She added: ‘Being ill made me realise I hadn’t done a lot in my life other than carve out a nice career. I had effectively broken down my first marriage by working too hard, and I wonder if my relationship with Robin would have survived my work habits. But I regret not having any children – I thought I had plenty of time for that… I thought I had forever.’
She confessed she will have fewer regrets about the years since her illness than about the time before it.
She said: ‘I’m still the same person despite everything I’ve been through. I’ve just changed direction, that’s all. I never forget how lucky I am to wake up in the morning because I so nearly died.’
Making a conscious decision not to go back to her old job, she founded 500 Miles in 2007. A key aim is to make the service self-sufficient in time and, with that in mind, they have sponsored the training of 17 African technicians.
Miss Giles said: ‘I’d like to hand over the management one day but in the meantime our focus is on giving these people – many of them who’ve lost their livelihoods, homes or families – their lives back.’
One of her biggest inspirations has been 17-year-old Susan Bamba, born with deformed legs and abandoned by her parents. Later, adopted by a family who helped her get prosthetic legs, she was the first patient at the clinic in Mzuzu in the north of Malawi.
Her voice suddenly cracking with emotion, Miss Giles finds it difficult to talk about her without breaking down. She said: ‘She had an utterly miserable life. The girl is just incredible. There is no bitterness about her. All she talks about is what she’s going to do. She thinks she will be a technician too, helping others without limbs. I’ve been humbled and inspired by her.’
She admits to being ‘overwhelmed’ at being nominated for the Burns Award, sponsored by South Ayrshire Council, adding: ‘Burns’s words “a man’s a man for a’ that” are so basic and so fundamental to humanitarian principles. It’s about everyone thinking that everyone should have the same basic chance, which is what I believe too.’
Her current focus is on her charity’s fund-raising project – the BIG Dinner – which she hopes will raise £500,000 towards the development of a clinic in Zambia. She said: ‘Charity balls are a bit elitist so I wanted something a bit more inclusive and egalitarian. The idea is that as many people as possible will invite friends and family round for a Big Dinner on March 7. It could be for takeaway or pizza or the full thing but the aim is to raise as much money as possible on the one night.
‘Every penny will go straight to the people in Zambia who need it and are currently treated as second-class citizens because of their disability.
‘A lot of people from around Scotland and parts of the US and Australia, even Hong Kong, have already registered on the website but we need more to make a difference to the people who need it most.’
Her enthusiasm is infectious and, like the mountain she has already climbed to get her life back, it is clear Olivia Giles will always find her way round any obstacle in her path, no matter how great. There’s no doubt that clinic will be built.
She said: ‘It was bad luck that I got meningitis but I’ve had a very positive experience and I’ve always thought I’m very lucky to still be here, rather than unlucky that I lost my hands and feet.
‘I wouldn’t have things any other way. I honestly do feel as if I’ve thrown a double six.’
Register for Olivia’s fundraiser at www.bigdinner.co.uk