Why I say thank you for the music

SINCE Helen Durnion saw Simply Red in concert at Newcastle Arena in October, she has, she says, been living "in a vast bubble of excitement".

But this is no stagestruck teenager and the reasons for her excitement are very different from what you might think. Helen, a development officer with the Shaw Trust in Middlesbrough, now in her 30s, has been totally deaf since she was 16.

Yet when Mick Hucknall came on stage to the opening bars of Home, Helen was in tears of joy. "I could hear the music! I can hardly explain what that meant to me," she says.

And that' s just part of a remarkable story.

Helen, from Billingham, came from a musical family She'd sung at the International Folklore Festival and when she was six years old, had even been the support act for Georgie Fame and Alan Price. And, being a typical teenager, she loved all the music of the time.

But when she was 16 she contracted meningitis and became profoundly deaf overnight, with no hope of her hearing ever returning.

"The first I knew was when a consultant came in and told a group of students gathered round my bed that my case was hopeless - I could lipread what he was saying," says Helen.

The nursing staff, her family - even the embarrassed students - were furious that she had to find out in such a way and the memory of being ignored by the consultant had a profound effect on her life.

In the meantime, she was determined to get on with it. She found a job at ICI as a data processor and learnt word processing. But she wasn't content with a "deaf" job and instead, badgered her way to a job as a secretary and then, remarkably, despite the problems, went into marketing.

"If you have any disability, you have to fight for yourself. If you just sit back, you get put into a niche and other people decide for you what your abilities are. I wouldn't do that," Helen says.

Coping with the demands of the work and the hearing world were often, she admits, exhausting, even though for meetings and training, she had the help of someone to interpret for her. "But I was determined," she says.

Eventually, her job came to an end. But by now Helen had already started using cochlear implants.

A cochlear implant is a device used to help profoundly deaf people, for whom hearing aids are hopeless. It converts acoustic sound waves into weak electric currents which are picked up the auditory nerve. This then sends a signal to the brain and that can enable people to "hear".

It is not an overnight miracle and takes a lot of getting used to. It can take months, even longer, for users to adapt to this new way of hearing.

About ten years ago, Helen read of the work being done by Professor Morrison of Harley Street at King's College Hospital.

"I wrote to him, asking him to take me on. I reckoned I had nothing to lose. I was profoundly deaf and always would be, so anything would be an improvement. He agreed and my mum and I used to get the bus up and down to London," she says.

The first attempts at fitting the implants sound horrendous. In those days, it involved long needles in the ears, electrodes in the neck (Helen still has the scar) and a box the size of a CD inserted under a rib cage.

"And to be honest, I couldn't hear much at all. Everything was very hit and miss," she says.

The next experiment involved carrying the equipment round in a box a bit like a small vanity case. "Not very convenient and it still sounded like gobbledygook." But, still determined, Helen persevered.

By now, the implant was much smaller and consisted of electrodes implanted in the bone behind her ear, along with an external speech processor, the size of a hearing aid, and a coil. It had to be set by computer to the most comfortable position that Helen could hear.

Now she deals with "the brilliant people" at the audiology unit at James Cook University Hospital, in Middlesbrough. The coil has to very carefully positioned on top of the implanted package and that's done by magnets - one inside, one out - all of it invisible beneath Helen's long dark hair. Her party trick is to take off one of the external magnets and use it to pick up paper clips.

"It breaks the ice at meetings," she says. Well, yes.

While job hunting, she worked as a volunteer for The Shaw Trust, an organisation that helps disabled and disadvantaged people into work.

"I knew all too well how easy it was to be sidelined or ignored because you're not the same as everyone else. I've always felt so strongly that disabled people should have the chance to work and contribute. It's my passion. So much talent is wasted," says Helen.

Eventually, she joined the staff of the Shaw Trust as a development officer, working with individual clients as well as giving presentations to companies and organisations as part of the Disability Discrimination Act, which comes into full force next year.

"It's not just job opportunities that I like to explain to people - it's the small things too," she says.

That's everything from relaying loudspeaker messages, to talking to people instead of across them or just ignoring them, as that consultant did; to the shopping trolley problem.

"I've lost count of the number of times I've had a shopping trolley in the back of my legs. People have been saying 'Excuse me, excuse me,' but of course I haven't heard a thing so they go, wham. They think I've been rude or ignored them, but I simply couldn't hear and I've got the bruises to show for it."

Remember that next time you get ratty in the supermarket.

Although Helen had the new, small cochlear implant she had, she admits, almost given up on it. "To be honest, it didn't improve things that much for me," she said. And she got by with lip reading and with an interpreter for vital meetings.

"But I realised in the office that quite often, I would barge straight into a conversation because I didn't realise that people were talking. They were very nice about it, but I thought I'd try using the implant again. At least I could hear that a conversation was going on, even if I couldn't work out the words."

She wore it at home - her own new house that she'd just moved into. "And just as well I did, because the first sound I heard was running water coming through the ceiling," she says. But words were still a mystery.

Then, one day, it happened.

"I was in the office and had my head down, writing a report, when I heard the phone ring. Then I heard one of my colleagues answer it and I could hear what she said."

It was amazing. Excited, Helen made colleagues talk to her while she looked away. At home, she made her parents hide behind the newspaper and read out headlines for her to recite back to them. She even managed to use the telephone.

"It was a marvellous breakthrough, because now I really am independent and can deal with most things myself without having to double check or rely on other people," she says.

But there was still one big challenge - music.

Despite her deafness, Helen had tried to keep in touch with music.

"I bought all the videos I could, I watched UK Gold. I was watching music that I'd heard when I could still hear so when I watched the videos I was remembering, I was hearing it in my head," she says.

A pretty poor substitute, but the best she could manage.

"There were dreadful moments. I remember going to a carol concert and not hearing a thing, having no idea of what was going on, and I was very saddened," she says in what is probably a massive understatement. She tried going to a concert with a water bottle in her hand, " So I could at least feel the beat, the rhythm." But as her hearing came back, so did the music.

"I sat up late and watched Jools Holland. I became obsessed by MTV. I heard all the bands I'd loved as a teenager and found new ones too. I listened to so much music I thought Virgin could sponsor my implant," she jokes.

Helen still doesn't hear music quite as she did. "I can remember, for instance, what Rod Stewart sounded like in the days when I could hear and now I suppose it's as if I'm listening through a velvet cloak. It's still his voice but I'm not hearing it in quite the same way," she says.

The one stipulation she made about her new car was that it should have a five-CD changer. She explains: "I just want music wherever I go."

Then, there came the Simply Red concert, and another major test for her new found hearing.

Helen says: "I had no idea if it was going to work or not. But the Telewest Arena were marvellous and gave me a seat with the best chance of it working. And it did. I went with my niece Rachel and it was absolutely superb. I was sobbing, she was sobbing.

"I'd got the music back. It was a life-changing moment."

Now music plays constantly in Helen's house and in her car as she drives all over the country to give presentations and helps convince companies of the benefits of looking at people's abilities to do a job, rather than at their disabilities.

She says: "Quite often when I'm doing the presentation, they don't realise that I'm profoundly deaf. And that probably proves my point rather nicely."