The Truth About Sepsis & Disability

 

 

 

 

 

 

 

 

 

 

I worked hard all my life

My early years were difficult, my Dad abandoned us and my Mum struggled to keep us housed and together. But I went to a good Comprehensive school and I applied myself. I got into Exeter University and came away with a 2:1 in English & French. For a few years afterwards, I followed my dream and tried to establish myself as an actor – but more than anything, I wanted a family. I joined a corporate bank and ended up a lending manager, fell in love, settled down.

Sepsis was like a wildfire

It came without warning, practically every nurse and every doctor stood back and watched me burn to death. I was 38. When I woke from 5 months in a coma, I didn’t know who I was. Half of me had been amputated. My hands, my feet, my face all gone. Everything I knew, disappeared. No idea of how or if I could carry on, if I was viable. Probably not. The only thing I had left was love – for my wife, for my children. Everything else was lost: our house, our livelihood, our confidence. I had to learn how to walk again and live with 4 prosthetic limbs. My face had to be reconstructed. I suffered so much I didn’t know if it was right to carry on.

Two things kept me alive

The fact that I was a husband, the fact that I was a Dad. As profoundly damaged as I was, I knew without a shadow of a doubt that I could be a better man than my own father was, and I wanted to prove that to the world. I wanted to show that even when so much goes against you, life itself is still precious. I might be ugly, but I could still be kind. There was still sunshine in the sky and wind blowing in the trees. Laughter down the corridor. I might be disabled, but I still had a creative mind. I might be poor now, but I could be grateful for what remained. I found moments of beauty reading my children bedtime stories, and found a new way to be a better, more understanding husband.

The disabled don’t work

Not in careers. We’re excluded from them. I’ve tried over and over for 20 years to get work suited to my skills but had no success. Although I’m a trained teacher, the local secondary school wouldn’t take me on except as a casual assistant because of my disability. I had a 6-month contract as a corporate writer, and loved doing that, but inexplicably it wasn’t renewed. The only job that’s lasted, is working in a call centre for £8 an hour. I’ve been doing that for 14 years, struggling to keep my family together, but I have to work late into the night and never get to use my writing skills. That’s so disappointing.

I don’t feel like a hero

I’m definitely damaged by sepsis. The physical pain I have in my legs is sometimes excruciating, and I have just 5% function with my myoelectric hands. My family have lost more than £1 million over the last 20 years due to my illness. My soul is shattered. I find it hard to process things mentally. My post traumatic stress is untreated – I have to work actively every day to keep it at bay. And even though I have this unique national role as a public speaker about sepsis and disability, even though there is a feature film about me and a book, I don’t feel like a hero – I stand up and speak out to tell the truth about my situation, especially on behalf of those many other disabled people who cannot. I keep on: to pay back the love my wife has shown me, and to show leadership to my dear children.

That’s the truth about my disability and what sepsis has done to me. For what it’s worth. I just wanted the world to know.