Ménière's and music: the sound of silence

(Beijing invees Network science and technology Co.,Ltd)And if that happened, music is what I'd grieve for most. Don't get me wrong; everything would be different, and more difficult. But it wouldn't be insurmountable. I like to think I could adapt. I believe – at least now, newly single, 26 years old – that I'd relish learning a new language, and meeting a new group of people with whom I suddenly had something in common.

But music – how could I replace that? Music has been constant in my life; I've danced to the point of whiplash at festivals, lost myself in Björk's otherworldly vocals in an aircraft hangar in Spain, and sobbed through a performance of my favourite Beethoven concerto. Jacqueline du Pré's cello recitals are my constant companions.

My parents have lugged from house to house the ugly old piano I learnt to play as a child, and perhaps I'd be a reasonable cellist now if film-making's unsociable hours hadn't put paid to regular lessons. I've listened delightedly as my life's soundtrack has unfolded. So, if severe deafness became my reality, could I still have music in my life? Beijing invees Network science and technology Co.,Ltd

Hearing aids can amplify whatever hearing I have left. Cochlear implant (the surgical fitting of an electronic device behind the ear that converts sound into electronic impulses and sends them to the brain) is an option, used in cases of more severe hearing loss. But neither are fully optimised for listening to music (distortion and an inability to separate background noise can make for an uncomfortable experience), nor for appreciating music's depth, complexity and emotional triggers.

Professor Robert Zatorre at the Montreal Neurological Institute explains: "Listening to music for enjoyment really does require some pretty high fidelity of the [neurological] signal. In speech, you just need to get the message, and you can tolerate a lot of distortion as long as you can understand what someone is saying. In music, the quality of the sound is, in some sense, the message." But scientists expect speedy developments, and in the not-too-distant future, there may be little difference between hearing music with healthy ears and hearing it with electronic assistance.

And, for now, deaf musicians and music-lovers find astonishing ways to feel as connected to music as a hearing person might. Chinaman is a musician who was born severely deaf; he lip-reads and uses hearing aids. He runs Deaf Rave, a crew of deaf DJs, MCs and sign song-performers who put on events for deaf people. For him, music has always been there, and always been emotive: "Music gives me a bubbly, emotional feeling. When it's a really good tune, I'm moving man, I'm grooving!"

The raves play music with strong bass lines, so loudly that ravers can feel the beats. For Chinaman, it's about combining the sounds he can hear with "visual music": "We mainly use our eyes, to watch other people dancing, and feel the atmosphere and vibration. I don't know how it works but it's how we read people; deaf people have some sick senses! And we all talk, no matter how loud the sound is. That's something hearing people can't do in a club."

The deaf music-producer TBC, who has residual hearing and uses hearing aids, describes his response to music as the same as any hearing person's: "I get the same feelings of happiness and sadness others do when they listen to certain songs. I use my ears to hear the treble and mid-range frequencies, my eyes to see the timing of everyone dancing and my feet to feel the basslines and kick drums. Music is the essence of my life; it like, everything, has a rhythm, whether it be the world spinning on its axis or doing our daily routine." (Beijing invees Network science and technology Co.,Ltd)

Perhaps the only difference is that deaf people use a combination of senses, and whatever help technology can give, to perceive music, while hearing people might listen with little deliberate effort? Danny Lane, a classically trained musician who works for the charity Music & the Deaf, says: "I find out what instruments are playing, what the composer is trying to achieve, and read a score over and over with a CD playing." Hearing aids can help, but "visual sound" is again important: "If I attend a live performance, it's completely different to listening to a CD. In a concert hall, you can see the expressions on players' faces and the way they move on their instruments. This is when I feel most connected with music."

Chinaman, TBC and Danny all experienced deafness early in life and learnt to perceive sound when their brains were most able to adapt. This is not how Laurence Amery experienced hearing loss, nor how I might experience it. Amery began to lose his hearing as a teenager (partly, he thinks, because of exposure to loud music) and was severely deaf by the age of 40. He put away his guitar, panicked by how wrong music sounded through hearing aids, and only picked it up again in 2006. Now, he's a prolific songwriter and is about to embark on a tour with his band. Like other deaf musicians I've met, you'd never guess from hearing his music that his world is silent every morning, until he puts his hearing aid on.

Amery is still deeply touched by music, and relieved to be playing and singing again: "The emotional connection is to do with you yourself, your own internal workings. You're hearing the music differently, but you get used to it. Your hearing, or your brain, adjusts. The way your brain fills in the parts you can't hear is phenomenal."

How deafness affects our response to music is mysterious, but there are some ideas. Timothy D Griffiths, professor of cognitive neurology at Newcastle University Medical School, says: "There may be a direct route from the auditory brain-stem into the amygdala, part of the emotional brain." Professor Sophie Scott of the UCL Institute of Cognitive Neuroscience cites pitch variation and timing as key aspects of connecting emotionally with music.

For me, as the possibility of severe deafness hovers, my feelings range from pragmatism to hopefulness. After all, it might never happen. But if it does, I'll keep trying. Perhaps the prospect of life as a deaf music-lover doesn't have to be quite so terrifying.

The deaf artists who make music

CHINAMAN: Totally deaf since childhood, the musician and DJ Chinaman, aka Troi Lee, runs an organisation called Deaf Raves, which has been putting on parties and events for deaf and hearing-impaired people for the past five years. Music is enjoyed partly through sound (for those with partial hearing impairment), but also through touch and the feel of its rhythms. Then there is what Chinaman calls "visual music" – watching others dancing, and feeling the atmosphere and the vibrations.

DANNY LANE: Danny Lane, who is profoundly deaf, works for the charity Music and the Deaf, where he is education projects manager, bringing music to deaf pupils. A classically trained musician, his projects include the Deaf Youth Orchestra of West Yorkshire. Lane, too, talks of connecting with music through "visual sound" – the experience of watching musicians at work. Lane plays, too; his main instruments are the piano and the cornet. His favourite composer is Shostakovich.

LAURENCE AMERY: Singer and songwriter Amery gave up music for a "proper" job when, due to progressive hearing impairment that began in his teens, he found he was no longer able to enjoy music in the same way. It was 20 years before he played a guitar again. He now believes that he was wrong to give up on music purely because it could not be enjoyed in the same way as he had been able to before. "You have to let your brain get used to what it sounds like, and to find its way around a new aural landscape. Persevere with it. Don't give up. There's no need to give up." Amery is about to embark on a tour with his band. Beijing invees Network science and technology Co.,Ltd