Remembrance of things past

Feb 24 2005 Rebecca Haylings

When Clive Wearing's memory was destroyed, leaving him to repeat the same 'waking' moment for the rest of his life, his wife did all she could to help him.

Rebecca Haylings hears the extraordinary tale of how Deborah Wearing founded a charity, crossed continents, found God and discovered that love is not all in the mind.

As patients and visitors wander the corridors of the Royal Berkshire Hospital there is one staff member who can hold the deepest sympathy for those suffering the tidings of bad news. Communications officer Deborah Wearing has spent many a sleepless night guarding a bedside or dreading the worst, after her own husband was ravaged by an illness which left him with the world's worst case of amnesia.

Despite her heartbreaking tale, Deborah carries an air of calm and dignity that only a person who has received utter enlightenment in the bleakest of circumstances could.

In her book, an account of the series of harrowing events which led to years of doubt and misery, Deborah tells a story of true love, a story of a woman who cannot live with or without her amnesiac husband - her own story, Forever Today.

There is nothing extraordinary about the beginning of her tale. As a music graduate in her twenties, Deborah started her career in John Lewis' PR department. A love for singing soon led to regular rehearsals with the store's in-house choir conducted by acclaimed musician Clive Wearing - for whom Deborah developed a crush.

With each rehearsal, the relationship between Deborah and Clive, a BBC music producer, developed and, despite a 19-year age gap, the pair fell in love and married in 1983.

But just 18 months into her marriage, Deborah's story becomes a haunting one as the pages of her novel turn from words of bliss and happiness to a desperate tale of life's flimsy boundaries breaking and falling away. "It was 1985 and Clive had been really run down with what seemed like very bad flu. But his condition just deteriorated overnight. One night he was perfectly normal and the next morning he was very confused," recalls Deborah.

Clive is now 66 and has never recovered from the illness which completely consumed his memory. He was the victim of encephalitis, caused by a one-in-a-million chance of the herpes simplex virus permeating the brain's membranes.

"The illness only destroyed the memory portion, but other parts of his brain were still okay," explains Deborah. "He was - and still is - completely aware of his surroundings, but even if he has been living in a room for years he will not find it the least bit familiar. He thought somebody was playing around with the universe.

"What was most striking at the time was that he had not forgotten me or the fact that he loves me, but I would visit him and we would have the same conversation over and over again.He would ask me how long he had been ill and I would reply -'nine weeks'. And he would say - 'nine weeks? I haven't heard anything, seen anything, felt anything, smelled anything, touched anything. It's been one long lasting night - lasting how long?'"

To cope with her problems, Deborah threw herself into campaigning for better services for brain injured people and founded her charity The Amnesia Association which merged with Headway, the brain injury association in 1991.

Today, Deborah talks dearly of her husband. She regularly travels from her Tilehurst home to see him in his Kent-based accommodation .

But in 1993, after devoting her life to ensuring Clive was settled in a safe place, Deborah felt she had to move on and tried to start a fresh chapter in New York. "I did not leave until I had taken the campaign as far as it could go and seen Clive settled in the country. The decision to leave was a necessity - it had been with me for years before I left.

"The problem was I could not live with Clive but nor could I live without him. I felt terrible - very heartbroken. I could not do anything more to help," exclaims Deborah. "But in New York I would get very disturbed - I never thought I would be able to marry anyone else because I knew Clive would have to be number one.

"When I turned down a green card, I made the decision to return to England. In 1996 I moved to Bath but I reached rock bottom there. One day I called a friend who was a Christian. I am a Jew. I told her how much I was struggling. She started praying for me and as she did I could feel this incredible power coming down the phone. When I opened my eyes I just felt different. I felt restored.

"She prayed again but this time I heard this thundery voice which told me to break free of all the New Age stuff I had got into in New York. I have a strong identity with my Jewish heritage but from that moment my whole life changed. I was only a Jew by race but now I am Jewish Christian by faith. Something which seems to have an increasing fellowship."

Deborah believes her praying was responsible for a dramatic improvement in Clive and, on Easter Sunday 2002, the couple remarried. "The prayer just seemed to improve him. Instead of making me completely crumble, we started having these fantastic conversations and would go for walks and to restaurants.

"I have now learned who we are and I have learned that, without the brain, the heart can still function. I believe truly that love conquers all. Clive lives in Kent now and he is always pleased to see me. Whenever I appear in the doorway he is delighted and when I reappear from the bathroom he can't remember I am there with him but he always just knows I am.

"He is an extraordinary human being. Nobody expects he will ever be able to leave the accommodation he is in. They say he will need life-long care, but I am keeping an open mind about it."

Forever Today - a Memoir of Love and Amnesia - by Deborah Wearing, is published in hardback by Doubleday, £14.99. Available now.

amnesia: the facts

Amnesia literally means 'a lack or absence in memory'.

It is sometimes said that people with memory problems do not remember in order to protect themselves from some kind of emotional trauma. While it is true to say there can be a psychological causes for amnesia, it is found that these are rare, despite its frequent occurrence in films, plays and novels.

Fifty people a year are struck down with encephalitis orinflammation of the brain.

Very rarely, and as in Clive's case, the herpes virus wakes up from dormancy near the spinal column and, instead of causing a cold sore, heads towards the brain. The brain inflames, swells up, is crushed against the skull. The main target area is the hippocampus, which is what we use for recall, for laying down new thoughts.

* Short-term memory loss is the most common and troublesome type of memory problem. This can manifest itself in a variety of ways, such as forgetting what has been just said, repeating the same question over and over, forgetting people's names, and forgetting a change in routine.

There is no way to improve this type of memory problem, but rehabilitation will try to help a person cope using tried and tested strategies. Memory is not like a muscle that can be developed just by stretching it.

The brain injury association Headway aims to promote understanding of all aspects of head injury and to provide information, support and services to people who have suffered a head injury, their family and carers. For further information, visit www.headway.org.uk