So long beautiful noises
Yesterday I visited Johns Hopkins University Hospital for evaluation and qualification for a cochlear implant as I am deaf.
I have been using various devices to gain ability to listen to people talking. Hearing aids, even of the best quality, are insufficiently strong. At maximum gain, they amplify to a barely hearable minimum and that is not good for the long run.
If you have a hearing loss or are otherwise impaired, I want to share something about the experience. You may read other stories that I have documented about the path to deafness.
My deafness first occurred after an Army training exercise at which I was a platoon leader of a squad firing 105 howitzers. We had ear plugs designed for M16 rifles that were insufficient for the large recoilless weapons. That and too much Eric Clapton and Better Midler probably did me in.
I lost one ear in the 1970’s and now the other in 2010. It did not happen overnight.
I asked doctors for a diagnosis and they really will not say. They suspect a virus may have pushed me over the edge or exposure to a lot of antibiotics from various surgeries.
The best prevention is to avoid excessively loud noises and that is hard to do.
Having lost ability to hear in the speaking range, I only hear noise and even though I am deaf, there is still much noise. It is never quiet.
I experience a phenomenon of hearing sounds in my brain that seem to be the sounds of my internal operating system.
Anyway, the cochlear implant will completely replace the way that I hear sound now. The brain has to reprogram to accommodate a more limited range and there is a mapping process that involves the implant technology and the brain. It is not automatic and requires new learning and practice.
The surgical part is something like installing a pacemaker only doctors install a hot shoe under the skin at the back of the ear. They lift the skin and insert it on the outside of the skull. There is no invasion into the brain. They do insert a fine wire into the cochlea that attaches to the hot shoe.
A receiver and transmitter are attached to the hot shoe. (All my terms, not theirs)
You wear the device during the day and take it off to sleep and shower. They say the installation lasts a long time. The hearing device requires annual adjustment.
Once you learn the new signals, they say speech clarity is excellent.
Before I go to surgery next month, I am looking around and doing everything that I can to hear the world as I knew it before we turn on the eraser and reprogram.
“After 27 years of silence I can hear my own voice and speak to
Growing up in the vibrant, cultural melting-pot of Ladbroke Grove, home to the Notting Hill Carnival, Semhar Beyene’s childhood dream was to become a performer.
With her dancer’s physique, love of music and exquisite, model features, she had all the attributes to make it to the top.
There was just one problem: Semhar was born profoundly deaf.
Resounding success: Semhar Beyene had a cochlear implant last November
The reasons are unknown (both her parents and older sister have perfect hearing), but with the assistance of hearing aids and lip-reading, she never allowed being deaf to hold her back.
Nevertheless, once she left school and started attending auditions, the reality of her disability hit hard. She gave up on her dreams, finding work as a graphic designer.
Now, however, the old spark has been reignited — thanks to a tiny electronic implant drilled into her skull last November. At 27 years old, Semhar is one of a small group of profoundly deaf people offered a cochlear implant. She can now enjoy sounds and voices she has never heard before.
Prior to this, the quietest sound she could hear was 98 decibels (the level of noise made by a lawnmower), whereas the normal hearing range is 0-20 decibels. Hearing aids helped to amplify the sounds, but hearing conversations was impossible.
‘For the first time, I’m able to hear my voice,’ she says. ‘And I can hear the way my parents’ names are pronounced — up until I had the implant I had never heard them spoken. All these things make a huge difference. It’s a surprisingly emotional experience. ’
Cochlear implants have been transforming the lives of deaf people for nearly two decades, with around 200,000 users worldwide, but until recently the procedure was reserved either for the very young — ideally toddlers — or for those who had previously been able to hear.
The logic behind this was that adults who were born profoundly deaf would be incapable of adjusting to the bewildering array of new sounds. However, Semhar is challenging the old received wisdom.
The success of these devices is all down to extraordinary scientific development which allows doctors to short circuit the damaged ear canals of deaf patients and wire a microphone directly to the brain.
The tiny implants, which can last up to 20 years, are inserted into the inner ear and wired up to the cochlea, the snail-shaped cavity that normally helps to transmit sounds to the brain.
In severe deafness, as in Semhar’s case, tiny hair cells lining the inner part of the cochlea, which pick up sound waves, are damaged beyond repair. Surgeons therefore implant tiny electrodes and a receiver deep within the ear, then connect them up to a microphone worn on the outer ear, just like a hearing aid.
As sound waves are picked up by the microphone, they are transmitted along a wire to a sophisticated sound processor which is worn behind the ear.
This modifies the signal according to the individual’s needs (its power, for example, can be finely adjusted) before transmitting a signal to the receiver inside the skull.
This is converted to electrical signals which are sent to electrodes to stimulate the auditory nerve, which is what enables our brain to ‘hear’ sounds.
For Semhar, who had the operation last November, the process of having the implant fitted was the culmination of a lifetime’s consideration. Despite being born deaf, she never regarded herself as disabled.
She grew up using lip reading and hearing aids rather than sign language and attended a mainstream primary school, where she was marked out as a high-achiever.
‘I didn’t even think of myself as deaf. I thought I spoke exactly the same as all the other children although it clearly sounded different to hearing people.’ she says.
‘Then, at secondary school age I moved to a deaf boarding school and everything changed. I was shocked because everyone was signing, which I didn’t understand — initially I felt like it was some kind of freak school. Looking back, I guess I was prejudiced about deafness myself.’
But the environment led to her making many deaf friends and so, despite several offers of a cochlear implant in her teens and early 20s, she saw no need to seek to improve her hearing.
Indeed, she went on to achieve a great deal. She appeared in Channel 4’s show Vee-TV made for and by deaf people; helped organise a dance troupe and appeared on stage. She also reached the latter stages of selection for the BBC TV show Britain’s Missing Top Model, in which eight young women with disabilities competed for a modelling contract.
When offered a place, however, she turned it down. ‘I didn’t like the way they were make a big deal of my disability,’ she says. ‘They were choosing people with the most severe disabilities and my view was they were trying to exploit these girls, so I pulled out.’
‘I didn’t even think of myself as deaf. I thought I spoke exactly the same as all the other children although it clearly sounded different to hearing people.’
But it was at this point in her life that things started to change for Semhar. ‘I was becoming disheartened. I would go to auditions and feel exposed. Normally I wouldn’t tell them I was deaf, but then I’d realise I was struggling to keep up.’
At the time, Semhar was also working as a graphic designer and found herself shattered at the end of every working day.
‘When you’re deaf, every conversation with a hearing person takes a lot of effort and concentration because you’re straining to make sure you fully understand.
‘I just wanted to make my life easier, so I decided the time had come to go ahead with the cochlear implant.’
In April last year, she informed her consultant at the Royal National Ear, Nose and Throat hospital in London’s King’s Cross of her decision and in November the operation was carried out.
And despite the major potential side-effects to consider — cochlear implants destroy any residual hearing, as they effectively short-circuit the ear canal and there’s a very small chance of paralysis if a nerve is cut — Semhar decided it was still worth the risk.
The operation took three-and-a-half hours. When the implant was first switched on the following month, however, it was far from a positive experience.
‘I’d been told it would be unlike anything I’d experienced before. One anology was that while the hearing aid gave you sound in 2D, the implant gave you sound in 3D. I’d been very excited about it. But it was incredibly, horribly noisy,’ she recalls.
‘Everything was too loud — especially the sound of traffic. Initially, I struggled to focus on work — constantly being distracted by what was going on around me. In the end I had to turn it off for a few weeks.’
However, Semhar now regards the implant as a success. Voices which initially sounded robotic have settled into normality. And her hearing has improved to the level where she can make out sounds at 35 decibels — the sound of someone snoring.
This places her in the ‘mild hearing loss’ range — a massive improvement.
Semhar now goes to pubs and clubs regularly and is learning a talent which hearing people take for granted: the ability to block out extraneous noise.
‘I get annoyed with someone who keeps coughing, or if I hear a crisp packet rustling. But I’m privileged to be in this position, so I can’t complain.
‘My pronunciation is coming on leaps and bounds. I do still lip-read, but hearing helps lessen the need, so it’s a mix of both.’
The procedure is not without controversy. There is a strong lobby that sees being deaf not as a disability, but as a distinct ethnic group with its own language — sign language — and culture.
But Semhar is keen to be seen as a pioneer for deaf people.
‘I want to open more doors for people like me,’ she says. ‘People think once you have an implant you’ll get involved in the hearing world and forget about the deaf world, but that’s not true. It’s a bridge to both of them.’
While she insists she has no regrets about the operation, she has no intention of having another implant fitted in her right ear.
‘I’m very happy with the hearing I have — it’s like seeing individual colours, then gradually recognising how they all mix together to make a clear image. I wouldn’t change it for the world.’