This week Professor Graham Clark, inventor of the cochlear Implant, won a prestigious medical award. Professor Clarke was very forthcoming about the positives and negatives of the cochlear implant. He spoke about his desire to develop the cochlear implant further so that it was providing Hi Fidelity sound. Clark is well aware of the Implant’s limitations. He spoke how it was effective for picking up speech and in environments that did not have a lot of background noise. He explained that the device could be limited when there was a lot of background noise. He particularly wanted to develop the cochlear implant further so that implantee’s could enjoy music. He had received feedback from a patient that the cochlear implant was not great for music. This made me think back to what is now four decades of deafness. (The full article can be found at – http://www.news.com.au/breaking-news/aussie-inventor-professor-graeme-clark-wins-top-honour-for-creation-of-bionic-ear/story-e6frfku0-1226201643956#ixzz1eU0wV3Vk )
The catalyst to my deafness is actually quite comical. At age 18 months I was admitted to hospital for, as the medical report says, “a routine circumcision” – Of all things. On the way to the hospital my mother noted a small rash behind my ear. She brought this to the attention of the Doctor who said it was nothing to worry about. After the circumcision I apparently came down with measles, which is what my mother thinks the rash was.
Whether it is related or not, I don’t know, but my mother believes the circumcision, coupled with the measles, led to my immune system breaking down. What did happen was that after the circumcision I came down with a raging temperature and this necessitated ice, flannels, and whatever was at hand to bring the temperature down. I was to be kept in overnight but remained in hospital for three months after that. I managed to catch whatever was going around the ward. I ended up with pneumonia and I was placed in an iron lung. My elbow became infected with Osteomyelitis. I caught chicken pox. Somewhere along the line my ears began to discharge fluid and were treated with Sofadrex. And all this from a “Routine Circumcision” I would hate to think what might have happened if it had been a ”Circumcision with Complications.”
At one stage doctors feared for my life but I pulled through. The lasting effect of the experience seemed to be a series of chronic ear infections. This involved a smelly discharge that was treated with Sofadrex. Initially my hearing was not impacted. Around the age of 5 or so my parents noticed I said “what” too often for their liking and I was referred to Dr Jay at the Royal Children’s Hospital in Adelaide.
I remember Dr Jay as a jolly fellow. His response was to treat me with Sofadrex some more and monitor me. My hearing loss was insignificant and the strategy seemed to be to keep the ear infections at bay. At some point poor old Dr Jay passed away and was replaced by Dr Rice who I remember as incredibly hairy. He had great bushy eyebrows and enormously hairy fingers.
Now Dr Jay and Dr Rice were top doctors in their field. Despite their best efforts my hearing began to drop rapidly. Dr Rice was absolutely flummoxed. He tried bone surgery and he tried grommets but despite his best efforts I got deafer and deafer. Slowly, mind you, but deafer none the less.
My spiral, no that’s negative, rather my journey into deafness was marked by constant visits to the Doctor. Sometimes for second opinions but the response was always the same. I was losing my hearing but no one knew why. There was even a suggestion that my hearing loss was my fault in that it was psychological and I was sent to a psychiatrist for assessment. My overriding memory of that was being placed in a room with kids who had severe behavioural issues, that was an experience indeed.
Years of seeking answers and cures were futile and by my teens I was profoundly deaf. My parents tried everything, even herbal medicine. I remember having to place some herbal drug on the tip of my tongue, roll my tongue under and hold it for six seconds and then swallow. Quite why, I have no idea. Desperate circumstances, desperate measures.
My mother swears that my hearing loss was caused by the ear drops. Something Doctors at the time refused to consider. She may well be onto something because there is something that is called Ototoxicity which is apparently a reaction to antibiotic ear drops that can cause deafness. As far as I know Sofadrex was an antibiotic. This risk is apparently greater when you have a burst eardrum and mine was bursting more often than a balloon in a field of thorn bushes. Years ago there was only one type of ear drop and these ear drops were all similar to Sofadrex. Today, apparently, there is an alternative in the form of aminoglycosides, which are safer. Maybe I should sue! Lots of people have for lots less damage. Any lawyers out there who want to take up my case give me a buzz.
My parents tried to save my hearing but ultimately it all failed and I became deaf. People who are later deafened never really become fully deaf. They always have a memory of sound. I remember sound well. You remember the most ridiculous things. Like waking in the middle of the night because one family member went to the toilet and you heard the flush. You remember being kept awake by the constant whirring noise of the old Westinghouse Fridge. You remember strains of stupid but classic television advertisements jingles such as Louie the fly, Louie the fly straight from rubbish … I particularly remember staying awake at night and listening to Number 96 because my parents wouldn’t let me watch it. Dorrie Evans and why she wasn’t told was a big part of playground conversations at school which suggests that I was not the only one.
But some of the memories are more poignant. Like the sparrows and their twittering outside your window in the mornings. The pitter pattering of rain on the roof. Or Listening to commentary on the television about the first moon landing while eating dinner in the kitchen. Or running into goal to score your first ever goal with your mother screaming in the background SHOOOOOOOOOOOOOOOTTTTTTT! And then wheeling round in excitement to see her doing a ridiculous sort of star dance as she jumped around in celebration. You always remain hearing.
And you miss things. You miss the banter on the radio and the hearing of new songs. I remember Let It Be and Eagle Rock. I remember my father bringing home a record player, a huge RCA stereo, and playing David Bowie. The first David Bowie song I ever heard was Uncle Arthur … “Uncle Arthur likes his mummy, Uncle Arthur still reads comics, Uncle Arthur follows Batman…” I remember listening to the great British Football Commentator, Brian Moore from The Big Match fame, “Moore to Peters, Peters takes it up the right, Robson, He shoots, GOOOOOAAALLLLLLLLL, OH WHAT A GOOOOAAALLL ….” Or that immortal The Big Match theme tune da da da da d d da da da These memories of hearing never leave you and yes you miss them, even 40 years later.
But would I change things? Well probably not. I have made a life out of deafness and disability. Made many friends and experienced things I would never have experienced if I had remained hearing. I met my wife through deaf people. I have met Prime Ministers and flown to places all over the globe because of my deafness. It has been a good life. It is a truism to say that deafness has made me who I am and as much as I miss being hearing I am glad for my deafness.
BUT, and there is always a but, would I become hearing again given the opportunity? I have to say yes. Give me a pill and cure me I would take that tomorrow. If Mr Clark succeeds in developing a Cochlear Implant with Hi Fidelity sound would I have one? Absolutely I would. You see I am hearing by nature and culture. I miss it and I would have it back in a shot. Is that double standards? Perhaps or maybe it’s a case of, ”You can take the hearing from the man but you can’t take hearing out of the man.” It’s just who I am. And only a Deaf person will truly understand that!