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I had a massive stroke 21 years ago when I was 32. It 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. While driving home, I started getting pins and needles in my left arm. By the time I reached home, the sensation had spread to my tongue so my wife, Janet, took me to A & E.

At first, the nurse thought it was an ear infection 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. By midnight, I was in a coma. My wife was told my body was shutting down and 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. When it dawned on me that I couldn't move and speak, I felt such fear. I was paralysed below the neck, unable to speak, move or feel anything. I was trapped in my body, petrified that no one would realise I could understand.

When I flashed my eyes, the doctors thought I was having fits and gave me more sedatives. Back then, they didn't know much about locked-in syndrome and they assumed I was brain dead. 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 conscious and aware of everything. I learnt to communicate through an alphabet board, blinking 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 played squash; 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. She gave up her job and became my nurse and my daughters became young carers. It was hard but we made sure the kids didn't miss out.

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. Before, I was always active. Now I watch others move. I watch my daughters living their lives. I watch my seven grandchildren. They sit with me on my bed and we watch DVDs or football. I go out for special occasions but it's a big deal as we need to hire a team of carers and an ambulance and I take a ventilator.

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. Janet shares my dark sense of humour. I've lost friends, I've gained friends - but she's always there.

Though I've had my teary moments, I've always believed that if there's life, there's hope. I know some people who have been locked in have asked not to be resuscitated if their heart stops, or have elected for euthanasia. 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 - rare for someone with locked-in syndrome. I do feel happy and I will not give up. I have never 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.

Guardian News & Media