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.

Kevin Weller with his wife Janet. Credit: Christian Sinibal/Guardian

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.