Ed Rex Interview: Deafness & Me

A Personal Story of Deafness

Blowing a cup of coffee, I watched as Ed Rex, 27, reached behind his ear to flick a switch on his hearing aid.

Busy chatting with a friend of his who approached the table as we started our interview, I couldn’t help noticing the ease and the constant chatter coming from him. The hissing steam from the espresso machine, the background talk that threatened to overpower the ears, and the door opening to allow the hum of the traffic inside, these are the sounds or ‘noise’ that Ed Rex has to battle on a daily basis. Waving goodbye to his friend, he finally turns round and cheekily apologizes,

‘Sorry about that, I guess I’m just too damn popular,’ he grins. Again, he reaches behind his ear to flick yet another switch. Seeing my eyes following his hand, he explains,

‘My hearing aid has two microphones, one on the back and one on the front. Sometimes I need to turn off the back microphone so I can hear just you instead of the rest of the world of Rexy.’

The World of Rexy. He’s brought it up already. Seeing his glint in his eye that betrayed his immediate marketing attempt, he’s already keen to talk about his new project.  He explains even further,

‘Everyday when I wake up, there’s constant silence. I can’t hear anything at all, not even the birds tweeting outside or the crinkle of the sheets as I get out of bed. It’s void. When I put in my hearing aid and my cochlear implant, the world just comes alive for me. I call it the world of Rexy so in a sense I’m switching on to Rexy by just one flick from deafness.’

He grins at me as he stirs his coffee. His explanation comes as he introduces his new website, RexyEdventures.com

Ed Rex

Born and bred in the city of Kingston Upon Hull, he was found deaf at the age of 5 after his parents were worried about his lack of speech as he attended nursery and primary school. Subsequent hearing tests were passed and his parents began to fear that there may be a problem in his brain about his speech.

‘Today, they still say that. They just want me to shut up!’ Ed chortles.

But thanks to the efforts of his primary school teacher, he was found to be deaf at a crucial age when formal education was just starting for him. Moved to another school with an attached hearing impaired unit where his core subjects were thus studied, he blossomed in his speech and learning to become one of the highest scoring students in the end of his time there.

His parents were faced with the hard decision where to send him for his secondary education. Does he go to a deaf school or a mainstream school?

‘I immediately said mainstream school,’ Ed remembers, ‘I didn’t really think of myself as deaf at the time, I was just too busy having fun and just wanted to play with my hearing friends. Also, I didn’t want to use sign language.’

Ed Rex

Ed is different from the stereotypical deaf person. Speaking clearly and fluently, he never felt the need to learn sign language and holds up a finger that he needs to take a phone call to which he confidently speaks into.

After 5 years in Secondary Education in which Ed received the minimal support, he passed his GCSEs and he’s proud to attest that he got an A in his French Listening Test. He then moved onto Sixth Form College to further his interest in Further Education and studied Geography, History, English Language, Biology, Astronomy and a brief spell in Business Studies.

‘I simply knew that I wanted to go further into Geography as soon as I started.’ Ed surmises.

So much so, that he managed to get the grades he needed to attend Leeds University to study a degree in Environmental Sciences.

‘I just absolutely loved being at University, it was all new to me and I could do what I wanted to do.’

His remark comes as he then started living on his own, away from his family, and embellished in his independent living as he moved into a house with fellow students. Joining up to organisations within the union, he soon became active in Fundraising and the Environment that ended with him winning a student body wide election to become a Sabbatical at the Leeds University Union after he completed his degree.

‘Being the RAG (Raise and Give) Co-ordinator was a role I absolutely enjoyed through working with students, the community and officials in order to raise the best annual total result ever in its 85 year history!’ Ed excitedly remarked.

Ed Rex

 

He finished his year with a month long trip to Uganda in Africa to help build schools and teach English and science. This may have been the spark that convinced him to travel solo around the world some years later.

‘I really loved being thrown into the different culture, different customs and I thought travelling was absolutely brilliant as it takes you out of your comfort zone and really challenges you particularly with my hearing. Hearing the local accents and dialects are not easy let alone another language!’

He returned to the UK and after a string of environmental jobs, he returned to his first love, back to University to study a Masters. Completing with honours, he soon found a prestigious position within a well known Water Company in the UK. But after 3 years, he became restless in his job and had to the itch to travel.

‘I’ve always wanted to do some serious backpacking travel on my own, but I didn’t have that confidence at first to push myself. Then I got my cochlear implant…’ he taps his magnet on the side of his head.

Along with his Siemens Impact DSP Hearing Aid in his left ear, he also has aCochlear Nucleus 5 Implant in his right ear. His operation for his implant took place recently in 2011.  Ed explains why he felt the need to have done one so late.

‘Since I was 16, my hearing in my right ear was pretty much all gone, even if I put a hearing aid in, it was not worth it. So for 10 years, I depended on my left ear just fine and I was able to get along with life. In hindsight, I probably believed that too much. But when I was working in my previous job, I began to find using the telephone really difficult. It was pretty embarrassing for me to ask for help. I guess, I’m just really stubborn and too independent to do so!’

Ed was assessed by the Nottingham Cochlear Implant Team and was found to have a deteriorating condition in both his Cochlears causing widened vestibular aqueducts. This condition is known as Pendred’s Syndrome, a thyrodic condition that causes deafness in extreme cases.

With his right ear already deteriorated and his left ear starting to, it was agreed to give Ed a Cochlear Implant before it was too late.

‘I just couldn’t fathom a world without sound, which could be the case if I left it as it was. I loved my music and I can be found stupidly dancing and singing to songs that I listen to my ipod.’  Ed grins and shows me a dance in his seat.

With a successful programme of ‘switching on’ and re-tunes, Ed has amazed himself and exceeded his expectations on what he could hear.

‘Pre CI (Cochlear Implant), I didn’t realise how much sound I lost in my hearing. For example, the birds in the trees and even the indicators in the car was a revelation! It really began to build up my confidence tremendously and I began to do things I really wanted to do and first of all, I wanted to travel.’

He achieved this in 2012 when he undertook an 8 month Round the World Trip on his own through South East Asia, Australia, New Zealand, South Pacific and USA.

Ed Skydiving

This is when Ed truly gets animated. Describing his adventures into great detail and story telling much to his delight, it’s not long before we have to get another coffee. His favourite place being New Zealand and the fact that he’s done out of this world activities such as bungee jumping 134m and eating a live, beating snake’s heart in Vietnam, he does have one thankful claim.

‘I just couldn’t have done it without all the amazing friends I made out there. Out of all the 8 months I was travelling, only 2 of those weeks, non-consecutively, I was on my own. It was so easy to make friends. I couldn’t believe why I was so worried about going travelling on my own before.’

But there was just one thing I wanted to ask about his travelling. How did he cope with his deafness whilst travelling?

‘I’d be lying if I said everything was fine. There were some days I wanted to scream and shout because I couldn’t hear what was being said but they were very far and few between. At the end of the day, it’s up to you. You’re the one who have to prove people wrong about their stereotypical view of deaf people. So I really have to make the first move in introducing myself people and after some deaf awareness, they are really keen to know more.’

Throughout his time backpacking, he has forged a career as a travel blogger on RexyEdventures.com and he feels that writing and journalism is his way forward in life.

‘I just love writing and describing what I see and hear. Everyday, it’s different what I write about and I can be my own boss.’

It really doesn’t look that Ed will be settling down any time soon, particularly as soon as he got back from his round the world travels, he booked a month long trip to South America in where he just got back from a couple of weeks ago. And already he’s going to mainland Europe to do some travelling there.

Asking him if he’s leaving anyone behind, he simply smiles coyly and with a wink to me over his whipped cream, he takes a long sip,

‘I can’t possibly tell you that, my admirers would be out en masse. It’s best to be mysterious.’

It comes to no surprise after reading his travel blog he has a huge opinion of himself. However, with his handsome boyish good looks and his humour – infectious, positive and enthusiastic personality, I would place my bets on him having a relationship already.

It seemed that he’s ready to take what life curves have to throw to him and turn it into an opportunity.

‘I suppose I am a glass half full kind of person coupled with stubbornness and ready to prove people wrong. I was told that I wouldn’t make it through mainstream school and that I would be better off in the school for the deaf. Seeing how it upset my parents, I was ready to prove them wrong and with single-mindedness I succeeded. They said I couldn’t travel on my own. They were wrong. They said I wouldn’t be able to speak properly. In that, they are definitely WRONG.’

Speaking of his parents, Ed turns serious,

‘I really couldn’t be who I am thanks to Mum and Dad. Through their sheer determination and commitment, they pushed me to be the independent, active man I am today. For that, I can’t thank them enough. I owe them my life. I will always endeavour to make them proud of me in every way possible.’

Ed's Parents

One last question I asked Ed, what now?

‘Apart from more travelling, I really don’t know. But I don’t really care. I know I can be who I want to be, do what I want and I definitely have the means to do anything.

Deafness? It’s not an issue. It’s already who I am.’

You can follow Ed Rex on his globe-trotting ‘Rexy Edventures’ on his website –http://rexyedventures.com. We wish him the best of luck and look forward to what he has to tell us in future.

By Will Brown