Be active, carry on in life. I am not disabled. I have a spinal cord injury. It will always be with me now!
After leaving school at 16, my main priority in life was to work, get a job straight away. Which I did.
Before the sun was peaking around the curtain edges, at around 0530, my dad would enter my bedroom. Pull the duvet off me and throw it in the corner. So I had to get up or get cold. This action was the wake-up call I needed, Monday to Saturday, better than any alarm clock. To make me get up and get downstairs for a quick breakfast. At the same time, it reminded me of the importance of work, to give a good impression of timekeeping to my new boss. The guvnor will be picking me up at 0545 to allow plenty of time to clock in and start work in the cold, drafty factory at 0600. Two hours overtime before the rest of the workforce began their shifts.
My first job after leaving school was in a sheet metal factory. The shop floor was home to various machines, which needed tool pieces and programming to create a shape from the metal. Fold, stamp and cut to form the metal into a required spec that I would read from the technical drawing, keeping measurements within tight tolerances.
But, if I’m honest, it felt like something was missing. Was it teenage anxiety? I’ll never know now.
But not any more – a new start
One day, life seems to turn over. It feels like I wake up after a long night of sleep, but the weekday early routine of my dad entering my bedroom is not there.
It is light, but artificial light. The morning starts with a nurse leaning over me, saying they are just doing my bowels or washing my back. Do I want soap on the flannel for my face? Here is my toothbrush and a bowl.
Laying in the NSIC Stoke Mandeville. I’m not sure what happened, how I got here or why I am here. I don’t think I have had a wee, or actually, I realise I can’t feel the need to wee!
After a short time, it dawns on me that something is very different.
I have been in an induced coma for a month after being involved in a car crash. The realisation that I have sustained a Spinal Cord Injury (SCI) is a devastating shock, heartbreaking, gut-wrenching. I am scared! What is going to happen now?
25 plus years on
The daily grind of living with a spinal cord injury.
After SCI and time in rehab, I was encouraged to be independent – whether physically or verbally. Just as long as I got up, got out there and lived a full life. It could be working, volunteering or playing sports or even doing something completely different. Keeping active is the best rehab.
But, each morning, the labour of getting up, dressing on my bed, transferring into my wheelchair, working and generally living can be harsh.
Today’s stars with physical challenges, Adi Adepitan or Sophie Morgan – whom I taught wheelchair skills to after her injury – make it look easy. Travelling the world and always looking good and conveying an air of confidence. I like to think I also do this. Living, working, being confident.
Following being discharged from rehab, it took a while, but I passed my driving test, got a job and started living. I now run my own business, am a husband and a father, head chef at home, do the school runs, see friends and go to shows and concerts. It’s a good life.
But my SCI is there
My spinal cord injury is always there.
SCI repeatedly throws problems into the steady rumbling journey called life. Twenty-eight years now, I have lived with it. I got over the challenges of drinking too much – I have been lucky to have made it home safely sometimes. Met new friends and lost others. I have got on in life, got a job, found love. But my SCI is always lingering behind me.
People might think I make it look easy. I confidently propel my wheelchair, negotiating kerbs with ease, holding my head high and taking on life.
At the same time, though, behind closed doors, living with SCI can be mighty frustrating. Personal care, the risk and danger of pressure sores, posture checking, items out of reach, things in the way – particularly other people’s discarded shoes – eating healthily and making sure my water intake is enough; all constantly grind away at me. Churn away inside me, dissolving my spirit. I can find it hard to keep negative thoughts from the front of my mind.
A creeping shadow
It’s there, like a long shadow on a sunny morning, when the sun is low in the sky, and the outline of my being is stretched on the ground or sliding up a garden wall as I pass the property boundary. It’s always following me; I cannot escape it.
What happened the night of the crash? I’m not sure. I feel guilty that I was bitter and angry at first towards certain people – maybe that was expected? My life had turned upside down.
But as time passes….
I realised, after a few years, possibly 15 or 20, I think it made me. My SCI gave me a purpose in life. Made me more determined to get up and go to work, be active and socialise. Although life can be a bitch, challenging at times – this is true if you have an SCI or not. Carrying on in life, working and being in control, is the central part of what makes life. Make the best of things and stick two fingers up to all those who expect you to be held back by that horrible word – disability.