'I do feel happy' – living with locked-in syndrome

I had a massive stroke when I was 32, which came without warning. I had always been healthy, so there was no way of knowing what was about to unfold. One evening I was having dinner at my mum's and couldn't swallow my food. While driving home, I started getting pins and needles in my left arm and by the time I reached my house the sensation had spread to my tongue, so my wife, Janet, took me to A&E. It was a bank holiday and the hospital was choc-a-bloc.

At first the nurse thought it was an ear infection and as we had our six-year-old daughter with us, we didn't want to cause a drama. But as my speech started to slur and my face dropped, my wife knew it was serious. The doctors refused to accept it was a stroke, saying I was too young. But by midnight I was in a coma. Soon afterwards my wife was told that my body was shutting down and that I was probably going to die. They said a tracheotomy to help me breathe probably wasn't worth it, but Janet insisted.

Two weeks later I woke from the sedation drugs with no recollection of the trauma, and thought I must have been in a fight. When it slowly dawned on me that I couldn't move, and couldn't speak, I felt such fear. I was paralysed below the neck, unable to speak, move or feel anything – I was trapped in my own body and petrified that no one would realise I could understand.

When I flashed my eyes the doctors thought I was fitting and gave me more sedatives. Back then they didn't know much about locked-in syndrome and they assumed I was braindead. It was my wife who eventually spotted the recognition in my eyes and persevered – showing me flashcards with simple words. She realised that, though I couldn't speak or move, I was fully conscious and aware of everything. With time, I learnt to communicate through the use of an alphabet board, blinking my eyes to spell out words.

As the weeks and months went on I felt an unimaginable grief for the person I'd lost – the old me. The man who did the milk round, who played squash every week. The family man with three daughters.

I was in hospital for 18 months before I was offered a place in a residential home, but Janet knew I wanted to go home – something unheard of then. She gave up her job at BT and became my nurse and my daughters became young carers. It was hard, but we made sure the kids didn't miss out – they always went dancing and met their friends.

As someone who is stubborn, difficult and awkward, being cared for in every way imaginable has been hard to accept. To be cuddled, rather than give a cuddle, to be kissed rather than give a kiss, to be fed, to be changed, have all been hurdles.

I miss eating, as I am fed through a tube in my stomach. I miss being able to shout at the football. People have to guess what I'm saying with my eyes, and my spelling sometimes isn't at its best. Before the stroke, I was always active and on the move. Now I watch others move. I watch my daughters living their life, the life I gave them. I watch my seven grandchildren grow and play. They sit with me on my bed and we watch DVDs or the football. In June, I'm going to one of their holy communions. I go out in my wheelchair for special occasions like this, but it's a big deal as we need to hire a full team of carers and an ambulance and I take a portable ventilator. On the whole I'm at home.

There's always plenty of conversation, and my wife reads to me. We row like any married couple – I can scream at her with my eyes – but I don't know what I'd do without her. It's a love story. We got married as teenagers, 35 years ago, and last year we had our wedding blessed. Janet shares my dark sense of humour. I've lost friends, I've gained friends. But she's always there.

One of the worst times was when I caught the superbug C difficile. The sickness and chronic diarrhoea plagued me for almost a year. I was in and out of hospital, and almost lost faith in ever feeling better.

But though I've had my teary moments, I've always believed that if there's life, there's hope. With no exception. I know that some people who have been locked-in have asked not to be resuscitated if their heart stops, or have elected for euthanasia. But if that had been me, look at how much I would have missed.

I have a sense of humour, and although I cannot laugh or move any other muscles in my face, I can smile – which is rare for someone with locked-in syndrome. I do feel happy, and I will not give up. I have never once considered suicide or needed antidepressants. I wish to remain here as long as possible. No doubt there. There's so much going on, so much to look forward to. I think you can either cry your way through life or laugh, and in the end, I guess you do what you believe is right.

Kevin Weller told his story to Jill Clark with the help of his wife Janet, using an alphabet board.

Thanks to guardian.co.uk who have provided this article. View the original here.