Living with…Quadriplegia

Callum November 11, 2014 0
Living with…Quadriplegia

Limbcare founder Ray Edwards MBE recalls how he was able live through unimaginable trauma and forge a new life devoted to helping others

As a young man I was quite healthy. My dad was a builder, and when I left school at 16 I joined my his company and worked hard, eventually becoming director. I got married at 24, and then three years later was diagnosed with Hodgkins disease – cancer of the lymph glands. Back then, the treatment involved taking the spleen out, checking your internal organs and receiving chemotherapy and radiotherapy.

I got overcame that in 1981, but losing my spleen was a big problem. I was on-site all the time with my job, so I took heed of the surgeon’s warnings, but wanted to get back to business. Unfortunately, after a while you stop taking care as much.

Getting rid of the demons
In 1987 I cut my hand while out on a site and contracted blood poisoning. Without my spleen there to filter my blood properly, my heart was saying ‘Don’t come to me – let’s pump the bad blood to the extremities,’ so I got septicaemia. On Friday March 13th, they took my arms and legs off to save my life.

After that my kidneys failed, so I was essentially a teddy bear on dialysis. I just wanted to turn the light off and go to sleep for the rest of my life – but in the back of my mind I thought of my nine-month-old twins, Michael and Diana, the ones I wanted to survive for. My kidneys fortunately became healthy again, and I was transferred to a rehabilitation centre where I was ‘rebuilt’ with arms and legs.

I eventually walked out of the Douglas Bader unit at Queen Mary’s Hospital, Roehampton on my twins’ first birthday – but my mind was still shot to pieces. I couldn’t cope, physically or mentally. I went downhill fast and things became terrible. I got divorced, hit the bottle.

Getting to where I am now has been a bumpy road. I didn’t properly come to terms with what happened to me until 2008. It was an interview that I did for a BBC documentary called Surviving Suicide that finally helped me get rid of the demons. From then on I thought about what life could be, and started using my pain and energies to give hope and support to others. I got remarried, and my wife Fiona helped me pick up the pieces. She’s made me who I am.

Rebuilding lives
These days I’m equipped with legs and arms and have a split-hook, which is a carbon fibre gripper that I use to hold things and drive with. Most things I can do, but Fiona has to help me when I need to put on a suit. Daily life isn’t easy at all, but I’ve learned to cope. My sight has now become my sense of touch; it sounds silly, but I can ‘feel’ someone touching my hand through my eyes.

I formed Limbcare in 2010 – I used to build homes, now I’m rebuilding lives. Most days I get up early, fit my arms and legs, go to the Limbcare office in Camberley and then typically go out to visit families, give talks at hospitals and deliver speeches to company conferences. I don’t have time to sit on my backside feeling sorry for myself.

My ambition is for Limbcare to open a well-being centre to improve people’s quality of life after they’ve experienced trauma. My journey from rehab to home was hell – I hated life, pushed my family away and caused so much trouble. Wouldn’t it be good to prevent that, and instead make people understand that life is worth living, that they can cope with their disability?

We do a lot of work with military charities and they’re brilliant – but the military seem to have this ‘cushion’, whereas civilians don’t. There’s around 750 military amputees in the UK, but approximately 120,000 civilian amputees, many of whom don’t have the finances to look after themselves. The sums are wrong, and as a charity we’ve got to help with that. We’ve got to look after each other.

Spreading the word
“There was this thing I saw a while ago on Facebook that really got to me. Someone posted a picture in which they were shown without their artificial limb, and it attracted comments from people saying it was a horrible thing to see. I thought, no – the person’s still a human being.

We were talking in the office, and one of the guys in the team suggested the word ‘Limbination’ – for a social media campaign where we encourage people to take off their prosthetics and be proud to show their limbs, and it’s started to catch on.

The ‘Limbination: Pride Don’t Hide’ campaign is currently being conducted across social media, asking for donations of £3 where possible. People can donate via SMS by texting ‘LIMB01 £3’ to 70070

PX LimbcareLogo-new3-586x236For more information about the work of Limbcare, contact 0800 052 1174 or visit www.limbcare.org; Ray’s own personal site can be found at www.ray-inspires.org

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