Thursday, March 31, 2011

Of life, love and happiness ...

These I've known, though I've been unable to move or speak for 21 years
Mar 30, 2011

by Kevin Weller

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 hospital.

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. 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 move or feel anything - I was trapped in my own body and petrified 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 assumed I was brain dead. It was my wife who spotted the recognition in my eyes and persevered - showing me flashcards with simple words. She realised that I was fully conscious and aware of everything.

With time, I learned 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. She gave up her job and became my nurse and my daughters became young carers. It was hard, but we made sure the children 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 football. I go out in my wheelchair for special occasions, 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.

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. 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 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. I have never once considered suicide or needed antidepressants. I wish to remain here as long as possible. There's so much going on, so much to look forward to. 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.

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