Phantom Limbs, Snakes and Bladders: The Trials of Living and Working with Spinal Cord Injury

Stoke Mandeville Spinal Research was founded in 2006 with the vision to enable people with spinal cord injury to have a life after paralysis, without the setbacks of debilitating health complications. Nick, a Copy Writer at TBWA\London, became a trustee of SMSR following his spinal cord injury 23 years ago. Here he candidly speaks of his experience and of the incredible work done by Stoke Mandeville Spinal Research. 

December 1994. There I was in intensive care; a ventilator shushing in my ear, a thousand questions racing through my mind.

I knew that a freshly broken neck meant I would never walk again. But what came was a surprise to me was the abrupt disconnect to my arms, hands, torso, skin sensation, lung function, bladder, bowels, nervous system, thermo-regulation and more.

Spinal Cord Injury is a highly complex condition, with the loss of mobility just one of a host of complications which can severely hamper quality-of-life.

It’s why I welcomed the invitation to become a trustee of Stoke Mandeville Spinal Research, a charity researching ways to improve life after paralysis.

Here are just some of the issues & research that they’ll be hoping to raise money and awareness for as the official charity partner of the European Neuro Convention.

And please forgive the occasional dark flippancy; it’s a coping strategy:

BONY BUNS

Being wheelchair-bound is infinitely more frustrating when you can’t even use the chair because of a pressure sore. With no movement or sensation below the waist, and with muscle mass wasting away, the sustained pressure of sitting on your bum can lead to skin breakdown. Spinal injuries units around the world are stuffed full of people who have had to come back for surgery on pressure sores.

THE PHANTOM MENACE

An estimated two-thirds of spinal cord injures live with neuropathic (chronic) pain. It’s nerve-ending pain, like when an amputee can still feel his or her missing limb, and though it is sometimes also referred to as phantom sensation, the pain is very real and very debilitating. Myself, I’ve been luck, but I have seen other spinal injuries utterly consumed by it.

SNAKES AND BLADDERS

UTI stands for Urinary Tract Infections. Spinal Injuries are particularly prone to them because many of us use indwelling catheters [Yes, ouch!] Once infection takes hold, things get ugly in a hurry. I woke up one morning with wee the colour of sunset and a vague headache. I regained consciousness a week later, back in intensive care fighting sepsis. F-word you, UTI

BEER FAIL

Imagine how frustrating it is to be able to reach for your beer but lack the grip to pick it up. Many higher legion spinal injuries have bicep and tricep control but extremely limited finger dexterity, making day-to-day tasks difficult.

BEING TOO YOUNG

“You’re too young to be in a wheelchair!” a sceptical steward once told me at wheelchair ticket gate at Wimbledon.

If I’m too young, then spare a though for the children and teenagers who have suffered spinal cord injury. For their recovery and rehabilitation trajectory can be markedly different to adults. This is why SMSR is collaborating on a pan-European project to raise awareness and effectiveness of paediatric spinal cord injury treatment.

This research and all our other projects are carried out with their future in mind.

Their whole lives are ahead of them. Help us make it a long, productive and enjoyable one.

To find out more and make a donation visit www.lifeafterparalysis.com