Cochlear Implant User Lewis: Rising Above His CI User Identity (and Vertigo)

He fell in love with a lady at first sight in 2016. Lewis Hughes, originally from England, was then learning how to hear again and was reeling from a permanent loss of balance on his right part of his body following a cochlear implant (CI) surgery a few months prior. This lady was about to relocate to the Netherlands (they met in Sydney). It’d have been the end of his contact with her. But Lewis proposed to tag along. He had no idea what the Dutch language sounds like. Today, they’re married and are based in Sydney, where he works at Cochlear’s global headquarters.

Born in 1988 in England

Thirty-three years ago, Lewis was born in a small village in North Yorkshire Moors National Park, England. He is the only child of his British father and Australian mother. He was diagnosed with severe hearing loss at age 3 due to Pendred syndrome. He had since been relying on hearing aids, until the CI surgery in 2015 when he was 27 years old.

Back in the early ‘90s, deafness among children was a major cause of concern for parents and paediatricians. The audiologist, when presenting the diagnosis of Lewis’ severe hearing loss, told his parents that his future would be challenging. But it didn’t stop Lewis from advancing.

His School Years: High-Performer in & outside the Classroom

Lewis had been in mainstream schools from his preschool years to his university years. He received support with his hearing and speech in his primary school years. But not so much in his secondary school years. It was in those years that he picked up the discipline to self-study, which helped him thrive in his university years. He enrolled at the prestigious University of Liverpool majoring in International Business. He was one of the two of his batch to graduate with first-class honours.

He was also an active figure outside the classroom. He used to surf and participated in several competitions, including the British University Surfing Championships. He was elected to carry the 2002 Commonwealth Games baton through his hometown – that tells you something about his sporting achievements.

He also played music. He has played the piano and the didgeridoo (a wind instrument played using a special breathing technique called circular breathing). He has performed solo and in a wide variety of bands, including jazz, ska, rock and soul. It has somehow worked for him despite his hearing loss.

Qualified for CI in 2014 & Making the Leap

He moved to Sydney from England upon completion of his bachelor’s degree in 2009. In 2014, he learnt that he was qualified for a cochlear implant under loosened CI candidacy requirements – people with moderate to severe hearing losses were eligible for CI too. He decided to go ahead with the CI in 2015. The decision drew hesitation and concerns from his friends and family members. But he went ahead with the hope that he would receive a better hearing.

The Bump: Vertigo

The journey turned out to be more challenging than Lewis had expected. The villain? Vertigo. Due to a rare inner ear condition, the operating CI surgeon had to release fluid from Lewis’ endolymphatic sac (a non-sensory organ of the ear) to access the cochlear during the surgery.

The result was that he woke up to a brutal spinning sensation the next day after the CI surgery. The vertigo was so severe that he had been vomiting several times a day. The vomiting caused his eardrum to vibrate, which resulted in deafening ringing in his ear. It was later confirmed that he permanently lost the balance on the right side of his body. His only hope for maintaining the active lifestyle he had led was to compensate for the loss with the balance on the left side of his body.

Everything seemed to him to be unbalanced and moving around was a real struggle in the first few days after the CI surgery. The situation (minus the vomiting which abated sooner) persisted for over three months. The situation gradually got better as he worked closely with physiotherapists.

Nevertheless, Better Hearing with CI

Nevertheless, that didn’t negate the effectiveness of the implantation. In less than three months after his first CI switch-on, Lewis could hear 100% of sentences (compared to 17% of the sentences with his right hearing aid pre-CI).

Fast forward to six years later to today, Lewis has since met the love of his life, moved to the Netherlands with her, stayed there for close to four years, returned to Sydney where they tied the knot in early 2020. And, he has assumed a brand advisory role at Cochlear global headquarters in Sydney since March 2020. He has also remained active in sports. Apart from cycling to work, he runs and hikes in his free time.

Rising Above His Hearing Loss and CI User Identity (and even Vertigo)

Undergoing CI surgery as a young adult presents no small psychological (and even physical as in Lewis’ case) challenge. Lewis’ story shows what rising above our hearing loss or CI user identity is like. He has the confidence that he could be what he wants to be – even when it involves relocating across the globe where he knows no one.

He believes that all of us in the hard-of-hearing community should be more encouraging to one another. And that it helps to have role models who’ve been in our shoes.

You could check out the series of blog articles he wrote in 2015 where he provided realistic (sprinkled with a sense of humour and pictures) accounts of his journey pre- and post-CI surgery.

You could find more cochlear implant user stories here.

CI Project collects cochlear implant user stories. I’d like to invite you to join the private Facebook group. You’ll receive an update of each new story (about once a month) and will get to interact with the characters of each story there. I’m also looking for more cochlear implant user stories. I’d appreciate it if you could nominate a cochlear implant user (including yourself) for me to write a story about!

Collecting Cochlear Implant User Stories