Ménière's and music: the sound of silence
Tuesday, 3 June 2008
People who don’t know me assume I’m slightly odd when I press my face to speakers and musical instruments. Commuters appear frightened by my soulful relationship with my iPod; perhaps they’re wondering if weeping my way through a bit of Beethoven on the bus is evidence that I shouldn’t be allowed out on my own.
But since I learned that I could become suddenly and irreversibly deaf at any time, sound is everything to me, and music is valuable beyond words. Will this next song be my last?
I’ve been partially deaf since I was three, when the nerve in my right ear mysteriously stopped working; I have no memory of what stereo sounds like, I struggle to record sound in my work as a documentary filmmaker, and I’m comedically bewildered by loud social gatherings.
But it’s had it advantages too.
As a child I got to skip school on Thursday afternoons to ride ponies, apparently to help with my balance (I still can't walk in a straight line, but I make a beautiful muck heap). Friends and family let me choose the best – er, the most conducive to hearing – seat in a restaurant, and the laptop I received at university was a nice distraction from the £15,000 I had to borrow to get there in the first place.
I've always lived pretty much in the hearing world, and I’ve never really worried that I was deaf. But now, with the onset of a surprisingly common condition called Ménière's disease that wreaks sudden, room-spinning dizziness, and threatens to plunge me into total silence at any time, I’m beginning to regret that I never explored the rich world of sign, lip reading, and ‘visible sound’ that exists alongside the hearing world.
Ménière's is a progressive disease of the inner ear, which over time can damage balance and hearing. It’s described as having three stages, the last of which usually involves irreparable and significant hearing loss. I was recently diagnosed with ‘secondary’ Ménière's disease, which I think means that my consultant can’t be sure exactly what my atypical symptoms amount to, so Ménière's is the best bet. It seems reasonable to assume that if the hearing in my right ear was destroyed by Ménière's, then the hearing in my left ear could, just as suddenly, be wiped out. The attacks of vertigo – room spinning, copious vomiting, crawling around for days – are happening more often now, so I’m left wondering if Ménière's has well and truly started its destructive course.
And if the worst happened – if I were to wake one morning to total silence – music is what I’d grieve for most. Don’t get me wrong; if severe deafness was suddenly upon me, everything would be different, and much would be difficult. But it wouldn’t be insurmountable. I like to think that I could adapt, and the people who love me could adapt too. Without trivialising the impact that hearing loss can have, I believe – at least now, single and 26 years old – that I’d relish learning a new language, and meeting a whole new group of people I suddenly had something in common with. As a freelance writer and filmmaker I don’t often have to work in offices where deafness would be a major disadvantage, but I must admit I’m trying hard not to wonder how life would feel if I could no longer interview someone face-to-face, or immerse myself in a generous stranger’s world over the course of filming a documentary. These things, though, are about the hearing world’s inability to communicate with deaf people, not an innate limitation of being deaf.
But music – how could I replace that? How would I adapt to its loss?
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 a Spanish aircraft hangar, sobbed myself stupid through a performance of my favourite Beethoven concerto, and bonded with new friends over shared tastes and politics. As I battle to meet writing deadlines, Jacqueline du Pré’s cello recitals are my constant companions, and perhaps a national newspaper isn’t the best place to admit this, but when I really need to concentrate the Robin Hood, Prince of Thieves soundtrack always sees me through (the orchestral bit, not the trite power-ballad bit, you understand).
My parents have graciously lugged from house to house the ugly old piano I learned to play as a child, and perhaps I’d be a reasonable cellist now, if filmmaking’s unsociable hours hadn’t put paid to attending 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, and find a way to connect with it?
Hearing aids might be one way to amplify whatever hearing I have left in the future, and they’re used by people with varying degrees of deafness. Cochlear implant (the surgical fitting of a small, complex electronic device behind the ear that converts sound into electronic impulses and sends them to the brain) is another option; it’s used in more severe cases of hearing loss. But neither are yet fully optimised for listening to music (distortion and an inability to separate background noise from the elements you want to hear 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 that sense it's different from speech. 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.”
Hearing aids and cochlear implants are so far focused on aiding deaf people’s perception of speech, but scientists expect speedy developments in the coming years; imagine the clamour of ageing populations demanding decent access to their music collections! In the not-too-distant future, there may be little difference between hearing music with healthy ears and hearing it with a little electronic assistance.
And for now, deaf musicians and music-lovers are finding astonishing ways to feel just as connected to music as a hearing person might.
Chinaman is a musician who was born severely deaf; he lipreads and uses hearing aids. He runs Deaf Rave, a crew of deaf DJs, MCs and sign song performers who put on events to bring deaf people together through music. 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!”
Raves play music with strong bass lines (RnB, drum and bass, reggae, and dub), so loudly that ravers can feel the beats vibrating. For Chinaman, it’s all about combining the sounds he can hear with what he calls ‘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 its 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; even if there was an earthquake we’d still be talking!”
Deaf music producer TBC, who has some 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 don't see myself being any different. 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’s like, everything has a rhythm, whether it be the world spinning on its axis or doing our daily routine. It all has some kind of beat to it.”
Perhaps the only difference then is that deaf people actively use a combination of senses, and whatever help technology can give them, to perceive music, while hearing people might listen to the radio or nod along to a concert 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 – feeling moved, emotional and thinking back on personal memories.”
Chinaman, TBC and Danny all experienced deafness early in life, and they learned to perceive sound when their brains were most able to adapt. This is not how Laurence Amery experienced hearing loss, and not how I might experience it. Laurence began to lose his hearing as a teenager (partly, he thinks, because of exposure to loud music) and was severely deaf by the time he was 40. He put away his guitar, panicked by how wrong music suddenly sounded through hearing aids, and he only picked it up again in 2006. Now, he’s a prolific songwriter (“I've got quite a lot of songs stacked up after all the years of silence!”), and about to embark on a tour with his band. Like the 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 aids on.
Although today’s sophisticated digital aids still can’t deliver sound exactly as he might once have heard it, Laurence feels deeply touched by music, and relieved to be playing and singing once 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 emotional response to music is still mysterious, but there are some ideas. Timothy D Griffiths, Professor of Cognitive Neurology at Newcastle University Medical School, describes how “there may be a direct route from the auditory brainstem 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.
Reforming an emotional connection with music took Laurence several years, but he doesn’t recommend taking the same path: “This thing about how it doesn’t sound the same so you stop listening? That’s wrong. I did that for a long time. You have to let your brain get used to what it sounds like, find its way around a new aural landscape. Persevere with it. Don’t give up. There’s no need to give up.”
For me, as dizziness descends more often and the possibility of severe deafness hovers on my horizon, my feelings range from pragmatism, to hopefulness, to occasional melodrama. As Laurence reminds me, it might never happen. But if it does, I’ll try to do exactly as he advises: just keep trying. Perhaps the prospect of life as a deaf music-lover doesn’t have to be so terrifying after all.
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. http://www.deafrave.com
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. http://www.matd.org.uk
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. “Persevere with it. Don't give up. There's no need to give up." You can hear Amery’s music at: http://www.laurenceamery.com and http://www.myspace.com/laurenceamerymusic
Lindsey Dryden http://www.myspace.com/lindseydrydendocs