After My AS Diagnosis, Life Took A New Direction

I was diagnosed with AS in 1999 and told I’d never work again. I went on full benefits – I was even allowed to apply for a car.

I felt so ill at the time that I wasn’t even sure if I could live with AS. The fatigue alone was crippling. I dreaded going to bed, getting up, and the endless days. I became depressed and felt like a failure - as a father, son, and a husband.

To start, school was never for me

My wife, Teresa, was studying to be a nurse, and she was destined to become the breadwinner. Neither of us had done well at school. School to me was about 2 things: football and trying to make the girls laugh. That was it.

I remember looking back years later and realizing I hadn’t a clue what I was supposed to be doing in school. I can honestly say, not once, did I think I was there to learn. It seems inconceivable now, but I swear it’s the truth.

I caught the bug for learning

But then something remarkable began to happen. Teresa would come home after a hard day at college, and after dinner, bath time, and their bedtime, we would head out into the little wooden conservatory on the back of our house to talk about our day. That’s when I got the bug for learning.

Teresa was studying Othello. She shared the text with me saying she couldn’t make head nor tail of it. I took a look. Same. No idea what Shakespeare was banging on about. It seemed to us like it was written in a foreign language. But we didn’t give up - we determined to master this bloody stuff even if it killed us.

Over the coming weeks we tried everything. Reading it alone and then discussing what we thought had just happened. Reading it aloud. Playing different roles.

Then, one day, Teresa said she had been given a one-off bursary of £200. And so, after we’d danced around the conservatory, and I’d sang "It’s Raining Cash!" by the Weatherman, we sat down and talked about how we might spend the money. Something for the kids, of course. But then what? Eventually, Teresa said –

"We should go and see Othello."

"Is he still alive?" I said.

She ignored that and said we should go to see the play.

I wasn’t so sure. I’d never been inside a theatre before. Correction. I had, but it was as a kid many years ago. We went ahead and booked 2 tickets for an evening performance.

Seeing the play ignited something in me

The auditorium of the Royal Shakespeare Theatre is one of the most magical places I have ever visited. I fell instantly in love with it. Long before the play started, I was transfixed.

The actors spoke and moved about the stage. For the first time, having only been able to read the words on the page, the story of Othello the Moor came to life. Finally, we understood! There it was, all along, waiting to be heard. To be seen. That was the key. Shakespeare’s plays were not written to be read. He had written them so that people might witness them.

I barely remember breathing during the entire performance. Something ignited in me during that performance.

My AS diagnosis gave me a new purpose: learning

At the ripe old age of 40, I came alive in a way I hadn’t thought possible. A door inside my head that had remained unopened all these years appeared and slowly the light shone in. For me, that was it.

When we got home the following day, I knew what I wanted to do with the rest of my life. I wanted to learn. I wanted knowledge like I’d never wanted it before. And so that’s what I've tried to do ever since.

I owe my continuing love of learning to one thing. If I had never been diagnosed with AS, I would never have sat down to help my wife and I would never have visited that theatre. It was the AS that set me on that new path.

The lifelong burden that my AS is, I owe it for giving me the chance of a new life.