Friday, March 18, 2005

Being Deaf

I thought it would be a good idea to try and have you the readers of my blog, understand the way my life is, and how to some extent I cope with what is basically a silent world for me

Some weeks ago, I find the below article whilst reading the Observer newspaper, and whilst it isn’t quite exactly my situation, it is close and will hopefully give you more of an insight to what goes on in my world.

How I learnt to love my silent world

Acclaimed author Bella Bathurst began to lose her hearing after a car crash. She ignored it at first but then started the long and emotional road towards an appreciation of life in the quiet lane

Sunday January 23, 2005
The Observer

I went with a group of friends on a cheap last-minute skiing holiday in the early Nineties. So cheap, it turned out, that the resort had forgotten to include any snow. Each day the runs were sprinkled with a thin dusting of artificial snow; every night it froze. This was not conventional skiing, this was skating on planks. One morning, when I was skiing alone, I slipped on the ice, lost control and crashed headfirst into a rock. When I regained consciousness, the ice around me had turned scarlet and an itchy trickle was blurring my vision.

I picked myself up, wrapped my scarf around my head and set off down the mountain. The next half hour was wild. I had hit my head with such force that I had effectively trepanned myself. Everything those old acid casualties from the Sixties said is true: there really is no hallucinogen more effective than smashing a hole through your own skull.

Tripping crazily, I somehow made it to the bottom of the run and found a doctor who sewed me back together, leaving - I thought - nothing more than a neat curving scar running from the centre of my forehead up into my hairline.

Several years later, the ice and I met again. Driving back home from Edinburgh one wintry night, I skidded on the frozen road, my car somersaulted and slammed into the verge, ending upside-down with my head separated from the road only by a thin strip of bent metal. I was taken to the local accident and emergency ward, had concussion for a few days, and returned home apparently undamaged.

In the months following the second head injury, however, I noticed that I didn't seem to be able to hear as well as I had. I wouldn't hear the phone or the doorbell. I kept blanking the neighbours' cheery greetings. Once or twice I failed to hear a car's approach when crossing the road and nearly got run over. Friends started making jokes about ear trumpets. Conversation became a game of consequences: I'd grab for the one or two words in a sentence that I had heard, and guess the rest. At first, I did what most mature, evolved individuals do when confronted with an unpalatable medical fact: I pretended it would all go away. It did not go away.

Finally, after a year of prevarication, I made an appointment at the local audiology unit. They gave me a brain scan and strapped me into an Orwellian headset through which they played a series of low and high frequency tones. The test results showed what I had suspected: because of those two head injuries I was losing my hearing. 'You're not deaf,' yelled a friend when I told him, 'you just don't listen!'

It's always tempting to see illness or injury as metaphor: people get cancer because they live a cancerous life, people go deaf because they refuse to hear. Maybe he's right, I thought; maybe this is payback.

The way I lost my hearing might be unusual, but the fact of losing it is not. According to the Royal National Institute for the Deaf, around nine million people in Britain have some degree of hearing impairment, of whom around 700,000 are severely or profoundly deaf. In most cases, hearing loss is linked to age and natural wear and tear.

On average, people are born with about 17,000 individual cells rising vertically from the surface of the cochlea - the spiral tube that forms part of the inner ear - like the tufts of a rug. With time and age, the rug begins to wear out and the cells' sensitivity diminishes. But the rug does not wear out evenly. Hearing is measured across a range from high to low, and most people lose high-frequency sensitivity first. I had lost about half the sensitivity across all ranges in the left ear, but kept some high-frequency sensitivity in the right.

In practical terms, losing my hearing can only be as bad or as good as the remedies for that loss. The best analogy is with eyesight. If you become short or long sighted, you go to the opticians and they fix you up with a pair of glasses or contact lenses; clever, low-tech devices which - if they're fitted well - replicate normal eyesight with such fidelity that most of the time the wearer doesn't notice them. If you start losing your hearing, you can either live with it, or - from April - you can queue for a couple of years or so and get a pair of battery-powered digital hearing aids free on the NHS.

The digital option is usually the more effective. The human ear is an instrument of immense elegance and precision which separates the sounds you do want to hear, such as the person speaking to you, from those you don't (the traffic near by). The old NHS analogue hearing aids were not much more than miniature microphones which amplified all sounds, useful or not.

Digital aids discriminate between different types of soundwave, prioritising variable waves, such as the human voice, and shunting other noises into the background. They are adjusted to suit the individual, boosting the hearing in frequencies with heavy cell damage, and leaving it unaided in places where the cells remain intact. They aren't perfect, but they're a damn sight better than getting run over.

So do I mind going deaf? Of course, I mind; I mind like hell. Wouldn't you? If you're born with all your immaculate senses present and correct, and if one of those senses dwindles away to a whisper, you do tend to mind. Initially I minded because of the connotations of hearing loss. If you are short-sighted and wear glasses, you are traditionally perceived as either very stupid or very clever. If you go deaf, you are traditionally seen as thick, or old, or both. You're dumb, you're slow on the uptake, you're a few crucial beats behind the rest of the world. I spent most of my childhood being mistakenly seen as stupid, and I didn't like the reminders.

I was also sharing an ailment more usually associated with the elderly. Only about 2 per cent of young adults are deaf or hard of hearing, but in people over 60 that rises to 55 per cent. Apart from stairlifts and tartan carpet slippers, hearing aids must be the only products advertised using octogenarian models. No offence to the old folk, but when you're 28 that hurts.

I mind now because I am dependent. I mind because the first objects I would save in a fire would not be rings or photographs or sentimental things, they would be a pair of glasses and two small pink plastic hearing aids. Without them I would - as an audiologist at St Mary's Hospital in Paddington, west London, put it - be a 'psychological jellyfish', hermetic, isolated, incapable of interaction with the rest of the world. I don't like being dependent. I don't like special pleading.

And nor do I like being unwittingly rude. The aids work well, but they can't cover all situations. I still occasionally walk out of the room just as someone introduces themselves. I still fail to respond to a question. I still miss vital conversational links. It's one thing to knowingly make enemies, but quite another to involuntarily offend half the people you meet.

I've also developed a couple of old-age complaints. Oddly enough, digital hearing-aids make the wearer more acoustically aware, not less. There's a reason for this. No one actually hears with their ears, and no one actually sees with their eyes. The ears and eyes are only mechanisms for gathering messages conveyed through light and sound.

The brain then decodes and translates those messages. It takes about four months for an individual to adjust to a pair of digital aids - not because the ears can't cope, but because the brain has to re-educate itself into a whole new way of hearing. When it has done so, it will have re-learnt the different sound frequencies. In the past six years, the degree of cell damage in my ears has remained more or less stable, but my brain's ability to compensate for it has improved.

Which has some practical drawbacks. The Nineties' passion for furnishing bars and restaurants in wood, slate and steel makes eating out an aural nightmare. Digital aids can't cope with sound over a certain decibel level. They stop filtering sound and develop instead a frantic high-pitched whine. Leaving them in is like listening to a succession of RAF Tornado jets landing at the next table. Taking the aids out makes it impossible to hear the person I'm with. My ears now dictate my eating habits; if it isn't possible to hear, I'd rather get a takeaway. It's the same with music. Background music - at home or outside - makes for an ugly sonic mess. No one is listening to it, but nor are they properly listening to each other. Far better either to give the music your full attention, or not have it on at all.

But there are compensations. Huge ones. You could say that partial deafness is the ideal 21st-century urban disability. In my new two-volume existence, I can have the world outside, with its mobile phones, car alarms, sirens, roadworks, helicopters, lorries and drills. And then I can have another world: a world of total focus. I don't hear the trains in the nearby station. I can sleep soundly through gales, storms, pneumatic drills, the neighbours' parties and most of the Today programme. I never complain if someone snores. I can have silence in the middle of the city. I reckon it's a privilege.

And, despite what my friend said, I do listen. I listen with all my strength. I listen not just with what remains of my hearing, but with my eyes and my instincts. I see sounds, I hear with the whole of me. The diminution of one sense traditionally amplifies another.

Wandering round the recent exhibition of David Dawson's photographs of Lucian Freud, I thought Freud looks as if he's deaf. As far as I know, Freud's hearing works perfectly, but Dawson had taken a series of images of someone whose whole being has become so concentrated in the act of seeing that his other senses have become almost redundant. Musicians do sometimes say they see beats, and artists claim they can hear light. Perhaps it's no coincidence that I've become increasingly interested in photography since going deaf. Or that I've become more alert to silent forms of communication and to the kinds of conversations which don't need words.

Try, if you like, a couple of experiments. If you wear glasses or contact lenses, remove them. If you don't, then squint hard. Ask someone else in the room to cover their mouth or turn away from you, and then to say something. You might be able to hear them, but you won't be able to hear them as well. Then try something else. Next time you're in a bus or a car with all the windows closed, watch the passers-by. What they're saying to each other may be inaudible, but you can usually tell at least some of the content; he's arguing, she's tense, he's jealous, she's angry, he's tired, she's lying. Everyone lip-reads, and everyone is fluent in the language of the body and the face. You don't realise it until you try.

In most cases, hearing loss is for life. Once you're deaf, you're deaf, and that's how you'll stay. Perhaps in the future they might be able to do something fancy with gene therapy or cochlear implants, but if someone offered me back my full hearing now I don't know if I'd take it. True, I'm not much use without the hearing aids, and true, there are disadvantages. But I like my new two-tone life, and the silence doesn't scare me. I am immensely lucky not only because I survived those two head injuries, but because I was born in an age where the remedies for hearing loss have become almost as sophisticated as the human ear itself.
I don't like the idea of becoming profoundly deaf, but at the moment I can work with what I've got. Besides, I reckon I want radical surgery about as much as I want a hole in the head.

· Bella Bathurst is author of 'The Lighthouse Stevensons' and 'The Wreckers' and the novel 'Special'.

The scale of silence

· The most famous deaf person in history is probably Ludwig van Beethoven, who lost his hearing in later life but carried on composing. Celebrities with hearing problems include Halle Berry, who is partly deaf in one ear, Sylvester Stallone and Sting, who suffer from tinnitus, and President Bill Clinton, who was fitted with a pair of digital hearing aids in 1997.

· In the UK, about one person in seven - nine million people in total - is deaf or hard of hearing.

· According to the Royal National Institute for the Deaf, most of the deaf and hard of hearing people in the UK have suffered more hearing loss as they get older. From the age of 40 onwards, a higher proportion of men than women become hard of hearing.

· Some two million people in the UK use hearing aids, 1.4 million on a regular basis. Around 50,000 people in the UK use British Sign Language as their first language.

· Sudden deafness, a condition where people can unexpectedly go deaf in minutes, affects 5,000 people a year.

Now back to my take, my situation is different because I was born profoundly deaf and so didn’t have a hearing to lose, yet I suffer a lot of what the author above has. I am one of only 0.3% in this country and if you equate that into figures about 180,000 people in this country and I am not entirely sure, but a lot of those are not young as I am. I don’t get the simple pleasures of sound that the majority of people do, I miss large chunks of conversations, and sometimes that why I look like a grinning idiot because I missed what was said. I can miss the nuances of a conversation and then say something that makes you go, what the f**k, yep, that is me mishearing and then saying something so different to what was being said.

I am totally reliant on my hearing aid, without it, I have no verbal communication with the world, and it can be the most frustrating experience, especially if I suffer an ear infection which means I am caged like an animal because I can’t interact verbally with others.

Not hearing can lead to funny moments, when I seem to drift away and be with the fairies where in fact, I have taken nothing in, because I heard nada.

What makes it harder is the attitude of others, I have throughout my life suffered prejudice and I will continue to do so until the day I die, in most cases it is ignorance, and stupidity on part of the person I am trying to communicate with. I have been in my eyes very lucky, 99% of people I know and who know me, know my limitations and the restrictions I have and make allowances for me, and those people I thank every day, because if they weren’t so understanding it would make it very hard to keep a level head.

I wish I was able to hear music like so many of you do, hear the pitches, melodies in the way you do. I wish I knew what your voices really sounded like, rather than a mechanical sound that I do hear, heck I don’t even know what my own voice sounds like. When I was on the See Hear program last year and heard my voice, I sounded so deep and it stunned me, because in my ears I hear a much higher pitched voice, and supposedly you all hear what was on the programme, and to me I can’t equate the two. I also wish I was able to hear because each night I go to bed and I am at risk of fire, because I won’t hear the smoke alarm if a fire started in my house, when I am asleep, just like I wouldn’t know if I my house was broken into, because I wouldn’t hear it, that is how poor my hearing is. I am also sure my neighbours must love me, with the music up loud so that I can hear it, I am still waiting for a noise order to be issued…..

Despite all these difficulties I face daily, would I change it, that is such a hard question to answer, on the one hand, yes I would clearly love not to be beholden to a piece of machinery to live my life, worrying that it might breakdown and I be left vulnerable. On the other hand, all those experiences that I have lived through have made me the man I am today, someone who is sensitive, caring about others, open minded, backing the vulnerable, wanting a world where people treat others as they wish to be treated, and despite people claiming they do that, I have been on the end of too many incidences to say that is true. What I have received on the one hand through a disability, I have had taken away as well.

On a final note, I wouldn’t wish deafness on my worst enemy

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