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I’m Not Disabled, That’s Just What It Says On My Records

By: undefined undefinedNovember 09, 2023

“Following my happiness that Elliott had recovered from meningitis and was back home, I have never forgotten how deeply sad I felt when I realised, he was now deaf.”

Dreams have sound, thoughts are tangible, and silence is noisy. Properly noisy, when I am lying in bed at night looking into the darkness and there is a sudden flash, crash, or movement, I can hear it, but not the sound, but rather my brain and inner workings’ reaction to it. Similarly, and don’t think I am crazy for this, I can feel the sound at night… I have tried so many times to describe and explain the sounds and feelings that silence comprises but every time I fail. It is incomprehensible to any typical hearing person, but to me, it is normal.

I forget that I’m deaf for all but 5 minutes in the day, 2 minutes in the morning putting on my processors as I enter the normal world. Again, probably a total of 1 minute in the day where a magnet falls off and I momentarily plunge into a separate world. Finally, for another 2 minutes at night when I unplug and re-enter the world of brain noises! My world is normal on so many fronts, but on others, I am so far outside the realms of normality. This is my deafness tale…

I recently visited the Cochlear HQ and manufacturing facility, there I met an array of amazing individuals and was given a tour of the assembly processes. It was an amazing experience that prompted the writing of this article.

I have bilateral profound hearing loss and access sound through Cochlear Implants following a bout of meningococcal meningitis as a baby. If you asked my family and friends to describe me, they’d probably say I am a sarcastic pain in the backside. Under the satirical and ‘idgaf’ façade I am an emotive guy, my parents are my best friends, and a perfect Sunday comprises of a Formula 1 Grand Prix, lunch with my grandparents and a “table dinner” with Mum, Dad and Sister.

Meningococcal disease refers to any illness caused by bacteria called Neisseria meningitidis. These illnesses are often severe, can be deadly, and include infections of the lining of the brain and spinal cord (meningitis) and bloodstream. At 8 months of age, I contracted meningococcal meningitis and lost my hearing as a result. Hearing loss is one of the far lesser potential outcomes of this disease, it could have very easily swung to a scenario where my parents were burying their first-born child. But it didn’t. 

In late 2003, not even 1 year old, my mum and dad’s parental instincts were kicked into overdrive as I became particularly unwell, prompting hospital visits for check-ups, tests, and repeated attempted diagnoses. After 2 prior hospital visits, in which doctors noted Meningitis as only a secondary consideration, it was a case of 3rd time lucky (or not so lucky depending on your view) for baby me – following lumbar punctures and blood tests a definitive diagnosis was given to my fear-stricken parents, Meningococcal Meningitis B.

“It’s always scary when a child is poorly, and Elliott was unwell enough to take him to the hospital twice before he was diagnosed with Meningitis. The doctors only considered it a secondary thought and did a lumbar puncture very late on before diagnosing why he was unwell.” – Dad.

Following the diagnosis, between the 3rd and 10th of December 2003, I was an inpatient in Ward 17 of York District Hospital. With my mum by my side, recovery from the initial treatments was swift and promising. Returning home with what seemed to be a 1,000-page leaflet on Meningitis, my parents were warned that deafness is something that can be caused by this cruel disease. However… how was anyone supposed to know if baby Elliott could hear them, was ignoring everyone or was distracted by a passing butterfly? 

“It was very hard to spot [deafness] in an 8-month-old baby, who cannot communicate. We played and interacted with Elliott as normal, although happy, it was clear he was not hearing everything.” – Dad.

“After leaving the hospital Elliott was sat on my kitchen floor when I accidentally dropped a stack of pans! He didn’t even flinch, it was at that stage that I could tell he had no hearing!” – Grandma Lynne.

“Although he was very young, I loved taking him (my 1st grandchild) for a walk in his pram, talking to him about everything we passed, especially drawing his attention to trees, clouds, and birds. On his first walk with me after his illness I realised he was not responding in his usual way. He did not hear me and only reacted to detailed gestures. It was soon confirmed that he had profound hearing loss.” – Grandma Jean.

I’ve always been a Formula One fan, possibly engrained into me by this fashion choice. This photo has been on the wall at my local Cochlear Implant Centre for donkey years!

Reading through my mum’s detailed log of events, appointments, and treatments the following months were littered with hearing assessments, sedation tests, hearing aid moulding and audiologist examinations. Following an apparent lack of progress with conventional hearing aids, a referral to Bradford Cochlear Implant Centre (CIC) was made. The technology of Cochlear Implants was fairly unknown back in ’04 and such plentiful consultations were needed. The constant back and forth between the York Children Development Clinic and CIC surely had my parents knackered and sick of the M62.

During this time, I was diagnosed with bilateral profound deafness.

“Hearing aids were tried but even so, Elliott wouldn’t flinch to sounds beneath the level of a jet engine – as eventually determined by audiologists. Thankfully the NHS diagnosed the profound deafness as quickly as possible and proposed Cochlear Implants. There were no guarantees.” – Dad.

The general premise of a Cochlear Implant follows a small incision into the skull, behind the ear, removing tissue and skin. The implant, which looks like a sort of fat sperm (4 & 5 in the below image), is inserted into the patient’s head, and the all-important electrode array is inserted into the inner ear. Thankfully this is operated under general anaesthetic – even at 20 I would not want to be at all semi-conscious during this!

The inner workings of a Cochlear Implant are unbelievably complex and convoluted, a greater read on this is certainly on the to-do-list for my fellow nerds and geeks.

When faced with the prospect of me receiving Cochlear Implants, my parents – thankfully – took the opportunity. As with many operations, there are no guarantees of overwhelming success, but it bettered my chances of leading the lifestyle that my family wished for me, I may have never walked or talked otherwise. 

“A personal memory on his journey was taking him to the Yorkshire Show and arranging for Elliott to sit in an F1 car, no one else was allowed! His operation was the day after.” – Grandad ‘Faffer’ Tony.

This operation was on the right side of my head. My mum took me, her baby, into the operating theatre, and said goodbye to me as the anaesthetic took my consciousness.

“As a parent, it’s not an easy decision to make to have a surgeon cut into your baby’s head, but Elliott would have never learnt to talk without the operation, nor lead the life we envisaged for him… so we went ahead. The operation went well.” – Mum & Dad.

“After the operation and eventually switching him on to hear his first aided sounds, he was so tiny wearing what seemed like an enormous backpack with the processing unit in it. Whenever Faffer, and I would look after him he came with a book of instructions in case of a breakdown! There was one breakdown that has stuck with me, we panicked but fortunately, we could CTRL ALT DELETE and resolve it without a trip to Bradford CIC!” – Grandma Lynne.

Wasn’t I such a cutie! You can also see my backpack, where my processor was kept in these initial years.

From here, on the 14th of July 2004, my mum kept a detailed log of the first 95 days after my implant operation. I won’t bore you with every day, but here are some highlights:

Day 1: Elliott had a good response to a hearing test and wore his processors throughout the day.

Day 2: Tuned again but Elliott was less patient than yesterday, he had a small tantrum at dinner about his harness. 

Day 3/4: Elliott was very happy to be switched on in the morning! He is adjusting to pointing out all noises!! The speech therapist was very impressed with Elliott’s progress. But he has started taking off his processor during car journeys…

Day 10: Elliott was again happy to be switched on at breakfast and played brilliantly all day. During the car journey, Elliott again took off his earpiece and took it apart. We are now onto spare parts! Elliott raised his hand when he had no hearing and liked pointing to the window when trains went past.

Day 17: It was very hard to entertain Elliott for long periods today – he is teething again – but was able to wear the processor throughout the day. Elliott lets us know that he can’t hear when his magnet falls off by whining and raising his hand to his head (perhaps in search of a magnet?). Elliott had good interaction with other babies today – his cousins.

Day 19: Elliott has been quite naughty with his earpiece today! Using it to get and keep attention. He shouts at us, then takes it off and runs away giggling! I’m not upset about it – it’s just a new game!

Day 26: Elliott danced in the car to the music playing. He looked quite shocked as an ambulance raced by, he turned sharply to see what it was. When I call his name Elliott now turns to look at the speaker! Elliott’s cousin played with his toys – he did NOT like that! He shouted and screamed at him!

Day 30: Back to playgroup today – playgroup is very noisy, so I expected the worst! But he has been a little angel in comparisonInteraction with me and also during 1 to 1 is constant, it is as if we are having a proper conversation!

Day 41: Grandma Lynne looked after Elliott today, he is making a variety of noises with different pitches. He enjoys talking a walk in the pushchair to see everything and all the people. He points at objects and “ooos” at them! Grandma thinks Elliott is trying to say ‘Mummy’ when he says “mw-mw”, he is also saying “du-du”.

Day 55: I am fairly sure Elliott said “Mum Mum” while chatting to me! He is using his voice when playing with cars “br-br-br” and “b-ba-bu”. I think he also tried to say ‘Grandma’.

Days 70-80: Language has developed, and Elliott has been saying “Mum Mum”, “Ga-Muh”, “D-d, “NOOO” and “hi-yaaa”. Elliott’s walking has massively improved, and his balance seems to have returned to pre-operation levels. Elliott’s speech therapists are very impressed with his progress. Elliott was looking for his older cousin when at his uncle’s house.

Day 82: Elliott’s facial expressions in response to sound are very funny and cheeky. From raising eyebrows in response to instruction and shifting gaze from my face to his dinner plate – as if to say, ‘I’ve finished’.

Day 83: Elliott has been playing with Daddy and Grandad Tony today, this prompted him to say “Dad-dy” for the first time and “G-duh”.

Day 91: If I squeal, Elliott will copy me! I wanted to see if he could change pitch – and he can!!

Now, amongst my first memories are a very random selection, from telling my younger brother not to play with my favourite stick, to my Uncle Neil convincing me that Jesus wore socks in the bath or insisting that my parents buy me a new Hot Wheels car upon every trip to Tesco. I felt just like any normal child, all I was interested in was digging for potatoes with my great-grandad John, playing with toys and looking forward to my next Petit-Filous!

When studying English Language at A-Level, part of my curriculum was regarding the ‘critical period’ for language development, during this time it was a particularly interesting topic for me, knowing the amazing work that my mum and speech therapists did with teaching me to communicate. 

“I think a lot of [his speech] is thanks to Elliott’s mother, she didn’t go back to work for many years and spent a lot of time paying attention to Elliott and following CIC’s guidance. Even with Cochlear Implants there was a high probability that he wouldn’t have learnt to speak, we were lucky that she could spend the time with him.” – Dad.

Yawning or in a state of amazement? You decide.

Following this initial operation recovery period, I continued to learn, talk, and develop with family, and peers in playgroups and with interactive toys. A real dilemma came at the dawn of Primary School, my parents queried whether mainstream or special needs education was the best fit for me. The ending consensus was that I would enrol in to mainstream comprehensive primary school and my progress would be monitored. 

As with any new beginning, there were of course bumps in the road, such as my parents being pulled into school because I had picked up the phrase “trucking hell” when expressing anger… Nevertheless, with an amazing team in the 1st year, with teacher Mrs Waters and teaching assistants Mrs Worby and Mrs Anderson it was encouraged that I progress through primary as normal. I firmly believe that this decision was instrumental in my relative success.

It was during this year that I had the opportunity to have a 2nd Cochlear Implant put in. I was in the hospital for this operation between the 10th and 11th of July 2008. I was 5 years old.

“The NHS offered a 2nd Cochlear Implant for the left side, and we accepted. For me this was the hardest one; only 1 parent could go down to the operating theatre, and Elliott’s mum went into the 1st one. I went this time and held his hand as he was anaesthetised. We then had to go and wait whilst the operation took place. After a couple hours Elliott was back on a ward and recovering. That night I met my mum and sister to watch Meat Loaf sing at Castle Howard. I couldn’t stop crying when Meat Loaf took to the stage; the juxtaposition of the day’s events was overwhelming.” – Dad.

My first definitive memory of this journey is waking up on a dingy hospital ward, looking at a red drawing pin stuck in my hand and touching my head then expressing annoyance to my mum that the bandage on my head was too tight! I also remember how depressing the food was that night – I’ve always been a picky eater!

I didn’t return to school immediately, but Mrs Waters came to my house and gave me a giant card signed by all my friends, my not-so-friends and teaching staff. I still have this! 

I now had dual hearing, and it was bloody weird! The concepts of sound location that I had learnt, now had to be relearnt, the pitch in which I heard was slightly different and my confidence took a momentary dip. I’ve always been a clumsy child with feet that I have only just grown into. Following my 2nd implant this clumsiness was more prominent than ever.

Only 2 months later my sister, Bethany, was born. In an almost oxymoron of emotions, I would remove my ears when baby Beth would scream and cry but put them back on to play cars or binmen with my brother, Harry.

Unfortunately, the following months of learning were overshadowed by great loss and heartbreak as my younger brother, Harry, sadly passed away after a very short illness. The pain of this rippled through my family and some awfully vivid memories are prevalent to this day. I realised how hard parenthood had been for my mum and dad thus far. 

However, I recall my growing confidence in school, making more friends and becoming more extroverted… except in P.E. when my mum made me wear a headband, so I’d stop losing and/or breaking my processors! Throughout the rest of Primary School, between speech therapy, I was fairly ‘normal’, and people treated me as ‘Elliott’ rather than ‘deaf  Elliott’, which was nice.

Me, my brother Harry and my sister Bethany.

“Elliott’s parents have been constantly positive, encouraging, diligent and coping with challenges as they occur. Within this, Elliott has had as normal an upbringing as possible not feeling dependent, different, or special. He is not defined by being deaf, and most people do not realise that he is!” – Grandma Jean.

“I remember one evening Elliott was in the bath playing with a bar of soap, he asked me a question and I instinctively replied, and he then answered back immediately. I was worried that he had worn his processors in the bath, but he had not. I joked ‘Have you been having us on and have been able to hear all this time?!’ Elliott with a smirk said ‘No, but I can lipread!’” – Grandma Lynne.

“[As Elliott grew up] he would join me in my shed for hours on end, building, setting fire to things and generally just ‘faffing’. The endless experiments in the shed are key memories for me and him, impossible without Cochlear Implants!” – Faffer.

“There were certain things that Elliott did as a kid that only he could get away with! Upheaving the furniture to make forts, meddling with his grandma’s seating position in the car, dismantling garden ornaments to ‘faff’ with or being a rascal. Elliott got away with it all, he wouldn’t have had this cheeky flair without Cochlear Implants.”  – Faffer

After the dust settled, I was just like any ordinary child, I did not let a “disability” hold me back. I placed ‘disability’ in quotation marks – this is because I personally don’t consider myself to be disabled… My deafness boasts more opportunities than it does holdbacks, I can take them off and have a completely peaceful night’s sleep, I can take them off should someone irritate me, and I raise approving eyebrows when my CV is read. 

I have always been a HUGE motorsports fan, it’s a somewhat family heirloom passed from my grandad John to my dad and finally to me, I can talk to you for hours about Formula 1, Top Gear or Touring Cars. There is a charity called Lollipop and it offers events for hard-of-hearing children. They held a go-karting event one year and I was uber competitive, convinced I would win and lap everyone twice. I did not. I lost, I came 2nd, and I was there standing on this podium begrudgingly holding a number 2 sign with my fingers. I was apoplectic in anger, how could I come 2nd? It just wasn’t feasible in my egotistical mind. I think that was the last event I went to… I’ve always been a sore loser, and I always will be!

We now fast forward a fair few years into secondary school, I was given an opportunity by my science teachers, Dr Burgess, and Ms Mackay, to present a demonstration and talk to a lecture hall of students, teachers, professors and astronaut Tim Peake. This experience was probably the catalyst that prompted me to start exploring radio and media. 

I now have a ‘radio voice’, I’m unsure as to whether I presented this talk with this expression.

I realise that I have skipped through almost my entire secondary education from 11 to 18… there isn’t much to report, I was fairly ordinary – I was a nerd, I was stubborn, I was very satirical, I had a close circle of friends, and I would always speak my mind. Nothing here has changed!

Upon starting my geography degree at Durham University, I enrolled on Purple Radio, just for fun more than anything. I presented 3 shows over the 2 years there, the Purple Radio Breakfast Show, The Elliott Wallace Hour, and Breakfast with Elliott. I am now an intern at Eastside FM, in Sydney where I produce a show, write online content, aid in pre-recording, and present my Quantum of Wallace show every Thursday night with very dry wit and humour. The station has been great and didn’t know of my deafness until recently – which I take as a great compliment.

Broadcasting live on the wireless – as the oldies would call it – is an art, I fell in love with this area of the art world due to having a platform to talk, vent, play my music, share opinions, and feel listened to. In a way, the radio is my diary. Of course, presenting comes with an array of external influences, this only adds to the beauty of it all, managing and adapting to a different scene each show. My friends grew up with parents who forced them to listen to The Beatles, Micheal Jackson and Elvis. I grew up listening to Guns’n’Roses, 90s dance and BBC Radio 1, this shines through in my music taste, it ranges from the most current pop sensations to the rock and rollers of the 1980s and the head-bopping trance anthems of Hacienda! With such a diverse taste in music, the radio shrieked my name like a lady of the night calling for clients across the club, mixed with my natural chattiness, what could possibly go wrong…

The irony is not lost on me… a deaf guy… presenting radio! However, I feel this is the perfect advert for Cochlear Implants – with the right support and a loving environment, deafness should not hold any individual back.

That brings us up to the modern day, from dancing with death to thriving as an independent pom living his best life on a placement year in Australia.

Recently, I was kindly invited to the Cochlear HQ and manufacturing facility in Macquarie where I met Graham Ball who toured me around the various processing and manufacturing lines. As part of this tour, I saw some equipment that belongs in Star Trek or Red Dwarf, I also met some people that belong in life’s golden parade of talent, commitment, and selflessness. These very people are amongst those who have granted me the powers of life, thus far, of fulfilment. From speaking to technicians and engineers at this facility it became clear to me that each Cochlear story is different, and so this has been mine…

I urge you to tune into my show, you’ll certainly learn a lot more about me, maybe, just maybe you’ll have a good chuckle too.

My achievements thus far in life are not my own, but rather a collective owing to my parents, grandparents, the NHS, Cochlear, teaching staff and audio/speech specialists that have aided me through my life. Each of these is a vital cog in a system that sustains me.

I sincerely thank Graham Ball of the Cochlear Macquarie manufacturing facility for the guided tour that prompted this article.

My family and I will forever be in debt to the NHS and the Cochlear group for offering the lifestyle I now get to lead.

For more recent, personal anecdotes and opinion pieces tune into the Quantum of Wallace every Friday at 00:30-02:00, via Eastside 89.7FM.

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