Share your story: Regan
Regan and his family call Te Atutū Peninsula, in West Auckland, home. He and his wife are the proud parents of two, a 13-year-old and a 10-year-old. Regan has moderate-to-severe sensorineural hearing loss, but despite the obstacles caused by his hearing loss, Regan maintains a deep gratitude for his journey.
He is thankful for his family's unwavering support, the dedicated medical professionals, and the transformative technological advancements that have profoundly shaped his life.
"I feel incredibly fortunate to have benefited from being hard of hearing and the amazing support of brilliant medical practitioners and advanced hearing technology throughout my life. If you think being partly deaf is a disadvantage, let me assure you it's not!"
There is no history of hearing loss in Regan's family, but his mother noticed the signs when he was just an infant. "I was born in 1977, and my Mum noticed I didn't respond to noise like my older sister did. I was a very quiet child, but I've more than made up for it since!"
Regan's journey with ear surgery begins.
Regan's hearing loss journey has led to numerous medical procedures, beginning at the tender age of three. "When I was three, poor development of my eustachian tubes was identified, leading to various surgeries...My first experience, and many others after, was to insert grommets...at the old Lister Hospital, which used to be across the road from the Shore City Mall in Takapuna.
My most vivid memories are of Mister William Baber's colourful collection of headwear in scrubs. He came to talk to me as the anesthetists put the mask over my mouth and nose, never quite knowing what he said as I started to fall asleep and the acrid taste of the gas. Then, coming too, I was propped up in a hospital bed with tubes everywhere while a friendly nurse offered me a lemonade ice block. For a while, I avoided lemonade ice blocks. But I must admit I did ask if I'd get one as an adult after my most recent ear surgery last November – I wasn't disappointed."
The delight of Regan's first dawn chorus.
Surgery has sometimes led to dramatic changes in perspective and experiences for Regan over the years. One of the more memorable surgeries cast him into the enchanting world of birdsong in his late teens.
"When I was seventeen, I had surgery on my left ear...done by Mister Baber and Dr Bren Dorman at Greenlane Hospital. After surgery, my ear canal was packed with wax for a month. The morning after this was removed, I woke up exceptionally early for a teenage boy – as the sun was rising, because all I could hear was birds…not just one but lots of them! At the time, we had a couple of cats, so I thought they had somehow caught or trapped a bunch of birds – because this was the only thing that made sense to me. I ran around the house trying to find the cats and the birds, making as much noise as you would expect a clumsy, tired teenage boy to make – and waking up everyone in the process. Rather than flying off the handle, my mother worked out what was happening, made tea and hot chocolate, sat with me outside on our deck and explained the morning chorus.
It was the first time I had ever heard the dawn chorus – a simple but beautiful everyday sound that so many people take for granted and not something people ever really need to explain. It was a pretty magical morning and a wonderful moment with my Mum that changed my perception of the world."
Two integral pillars of support.
Regan's mother and Mister Baber were valued constants in his youth. Even into adulthood, after each visit to Mister Baber, he'd meet his mother for coffee, sharing the doctor's insights. Their roles were intertwined, and their significance became all the more apparent when Mister Baber retired shortly after Regan's mother's passing, marking the end of an era.
"Even into adulthood – when I went to see Mister Baber to get my ears vacuumed out (suctioned) – something I would do every six months - I would meet Mum for coffee afterwards and relay everything he'd told me before heading back to work.
I had one singular visit with Mister Baber after she passed when he told me that he was finally retiring – it seemed fitting that these two things coincided. People gave me some odd looks as I sat on the steps outside the café next to Baber's rooms near North Shore Hospital, a blubbering mess in a leather jacket, holding a motorcycle helmet in one hand, nursing a coffee in the other, tears streaming down my cheeks as I thought about talking to Mum about it. Looking back - it was a pretty poetic moment, which felt like a fitting end to an era."
Small accommodations make all the difference.
Regan couldn't be more grateful for all the many things his family does that make a tangible difference to his ability to fully participate and engage.
"My family were always there and continue to support me. It's the little things that make the most difference: looking directly at me when they speak to me, repeating things when asked to – without getting angry or frustrated, filling in the gaps that I've missed later on – when we're in a quieter environment.
Most recently, it's my kids turning on the subtitles if we're watching Netflix or Disney+ together without being asked to or my wife selecting cinemas based on their technology and support for hearing aids. All these seemingly small things add up."
Embracing hearing aid technology.
The arrival of fatherhood became a catalyst for change. A seemingly ordinary request by a midwife, asking Regan to listen for his newborn son's breathing, led him to fully embrace hearing aids.
"What tipped the balance for me was when my son was born...the lovely midwife made what she believed to be a fairly simple request. She asked me to listen for changes in the baby's breathing. I'm not sure she knew her request's profound and long-lasting consequences - because it led to another awkward miscommunication and misunderstanding that so many of us are very familiar with. My absolute bewilderment (that someone could hear another person's breathing) must have shown because she launched into what I assume to be a stereotypical diatribe for difficult dads: 'You're a father now, you have responsibilities…'
Even though she didn't quite understand my reaction and response (and I didn't try to explain it), I decided that day to go and get fitted for hearing aids. Subsequently, I spent a disproportionate amount of time with them cranked right up and leaning into the cots of my children while they were sleeping to see if I could hear their breathing."
Regan is thrilled with the latest advancements in hearing aid technology, particularly rechargeable and Bluetooth-enabled models. They enable him to enjoy music, podcasts, and engage in various physical activities with his children, from rugby league training to playing hockey and coaching.
"When surgery couldn't give me the hearing I desired, technology stepped in, and for the past 12 years, I've been using hearing aids. My current models are rechargeable and Bluetooth-enabled. They're so discreet that almost no one notices them tucked behind my ears. Besides helping me with phone calls, they let me enjoy music and podcasts while riding my motorcycles and don't stop me from engaging in various physical activities like helping out with my son's rugby league training, playing hockey and coaching my daughter's hockey team, participating in pick-up basketball at the park and chasing after my children."
Life as a parent.
For his children, hearing loss is just a part of their dad. Sign language is valuable for communicating over long distances, and the occasional misinterpretations due to mishearing can lead to hilarity.
"They don't really think too much about it [my hearing loss]. To them, it's just the way Dad is because it's all they've ever known. I do sign to them from time to time. Usually, at times when it's inappropriate for me to yell – or over long distances and we have a line of sight, which is quite funny to other casual observers. Usually, I tell them something like - listen to the teacher or something simple like they're a good boy or girl, or I'm cheering them on.
Every so often, we do have a good chuckle when I mishear or misunderstand something. I usually share this with my kids when I've come to some incredibly absurd interpretation of something that doesn't make sense. They see how I've come up with it – we have a good laugh together and then move on. Honestly, I think they quite enjoy these moments."
Reframing hearing loss.
Regan's journey has taught him the value of reframing challenges, a concept he encountered in Malcolm Gladwell's book 'David and Goliath.' "Despite my hearing challenges, I focused on listening actively and participating fully in life, turning me into a lifelong observer and learner..." His academic achievements, including a Bachelor of Arts, Post Graduate Diploma in Business, and a Master of Business Administration, reflect his determination and resilience. "Not bad for someone who started school as a struggling student and a remedial reader!" he adds.
Regan recently worked as the Manager of Technology at FujiFilm, where he found a supportive team that accommodated his hearing loss. Meetings often involved strategically positioning himself to read lips and his colleagues kindly explaining any accommodations he needed to visitors.
“I've been with FujiFilm for nearly seven years...The team here are very accommodating with regards to my hearing loss. They know I'll often sit directly opposite the quietest person in a meeting so I can read their lips – which can be quite intimidating to that poor person. My co-workers sometimes take a moment to explain what's going on to visitors. I'll often sit or stand with a wall behind me in group gatherings so my hearing aids don't pick up as much surrounding noise."
Regan's ear surgeries continue.
Throughout Regan's life, the bond with his surgeons has remained strong. Following Mr. Baber's retirement, Dr. Melanie Collins stepped in to provide his care. Regan appreciates her dedication and creative solutions in approaching his treatment.
"After Mister Baber retired, a bit of void was left there... Dr. Melanie Collins has taken the reins of my hearing health with equal competence and has already done some amazing work in my inner ear... Doctor Collin's removed a cholesteatoma from my left ear and performed an atticotomy, mastoidectomy, ossiculoplasty and tympanoplasty last November. We might have been overreaching a bit to achieve so much in a single surgery – especially when she was inheriting me as a patient with a long history and a string of previous surgeries and really couldn't know what she'd find until she got in there.
My hearing is great at the moment, and her post-operative care has been exceptional. I know she did some pretty creative stuff reconstructing one of my hearing bones... I'm exceptionally happy with the outcome!"
Advice for those facing surgery.
When asked if he had advice for those facing upcoming surgery to treat hearing loss, Regan emphasised focusing on the positive outcomes and the dedication of healthcare professionals.
"Focus on the outcomes – surgery is very brief – usually a few hours, but the beneficial impacts of it can last a lifetime, literally years. In my experience, surgery is never as intimidating or as scary as you think. Know that you're in good hands. Meet with the surgeon and health care staff first, and you'll find that they're wonderful, caring people, treat you as a person, not a number, and have a vested interest in giving you the absolute best experience and outcomes they can.
Then take a moment and think how lucky you are that so many clever, caring people are dedicating their careers to help you tackle this issue. It's pretty amazing when you think of it! None of this happened by chance. All the people and resources are there to help – you because you're worth it. And, you know what? All you often need to do to play your part – is to show up and sit, lie or sleep through it. You probably have the most straightforward role in the process – and then you benefit from it daily from that point onwards."
In our Share Your Story series, Deaf and hard of hearing community members open up about their experiences.
Find more great interviews from this series here: