NFDHH sat down with Alex, an adventurous 30-year-old who was diagnosed with Sensorineural Hearing Loss at age 20. In this inspiring interview, we talk about Alex's podcast, career, family, her evolving relationship with her deaf identity and hopes for the future.
A surprise diagnosis.
Even though hearing loss ran in her family, Alex's diagnosis was still a major surprise during her university years when she saw a doctor for what she thought was a bad cold.
"I was 20, and it was my first or second year of uni, and yeah, I thought it was a really bad cold. And I went to an Ear, Nose, and Throat Specialist because I used to have sinus problems... and that was when they confirmed I had moderate to mild hearing loss. It was weird going in thinking I had a cold and coming out with hearing aids."
Being 20 and wearing hearing aids made Alex feel like the odd one out among her peers.
"I haven't met many people from 20 to 30 with hearing loss... In my day-to-day life, I've always felt like the only one in that age group with hearing aids."
Speaking up about her experience.
Opening up about her hearing loss wasn't easy for Alex, but it became necessary when a significant drop in her hearing started impacting her ability to hide her deafness.
"For the first six to seven years after [my diagnosis], I got away with wearing hearing aids. I never really told anyone. I could still manage well in group situations and things like that. Only in the last couple of years, with more of a decline, I was suddenly like, 'Oh, I have to talk about this…"
Alex launched her 'Silence Speaks' Instagram account and podcast, which has received support from both the Deaf and hard of hearing community and from hearing individuals. The creative endeavour has been cathartic, helping her navigate her emotions and experiences.
"Just recording was helping me to process... It's been really cool. There are also a lot of listeners who are fully hearing, and they're just curious to hear more about the journey. Because I think one thing a lot of people who might be hard of hearing get is: Oh, you don't seem deaf, or you don't seem hard of hearing, you know? It's one of those invisible things that you go through. I've heard nice responses from people like: 'Whoa, I had no idea!' Or 'that was helpful for me, and when I come across anyone hard of hearing, I feel like I'm going to understand a little bit better.'"
By becoming more open about her hearing loss and gaining confidence, Alex discovered that people are generally more than willing to accommodate her. She says this has reinforced her decision to be open.
"It is amazing how many people want to try [to accommodate you]. And you deny giving people that opportunity to try if you hide it. And it's okay if you're in a place where you don't want to talk about it. But I've found people are more than happy to try... It's just getting the confidence to ask for those accommodations. That's been a big thing."
New opportunities.
An adventurous spirit, Alex has lived in many places, including Christchurch, Wellington, the UK, and Sydney. Her recent move to Perth, Australia, with her partner offers opportunities to continue a career path in landscape gardening, mental health, and youth work. Additionally, it's a chance to explore the possibility of receiving cochlear implant surgery.
"I'm on the edge of being eligible for cochlear implants. So over in Australia, I can hopefully get one there too. So that'll be great."
Learning from her mum’s experience.
Alex's hearing loss is hereditary; her mother and cousins also have Sensorineural Hearing Loss. Her mother had a similar decline in hearing just before she turned 30, which led to profound deafness and eventually cochlear implant surgery. Having a parent who has walked the walk has been a source of support for Alex.
"Yep, mum is profoundly deaf. And she has two cochlear implants. And she's had them for 15 - 17 years.... It's been amazing, in a way, having someone so close to me who's gone through it as a guide."
"Mum did about seven years profoundly deaf with three young kids before she even heard of a thing like a cochlear implant…she did very well, lip reading and with help from us kids, you know - doing a lot of phone calls and all sorts for her."
Alex revealed it was ‘pretty tough’ for her mum not hearing her kids all those years and it has been one of the biggest motivators for Alex to get a cochlear implant before she has children.
“Kids are in my near future. That's been the biggest thing on my mind, I really want to be able to hear as much as I can.”
Coming to terms with changing levels of hearing.
As Alex's hearing gradually declined over the last two years, she initially attributed her struggles to burnout and exhaustion. However, she eventually sought a hearing test to confirm her suspicions. The news brought mixed emotions – a relief to have an explanation for her difficulties but also a sense of overwhelm and helplessness. In social situations, Alex increasingly felt anxious and withdrew from activities she once enjoyed.
"I knew I would struggle to hear [in social situations], but also, I was anxious about how tired I was going to get or how much recovery I needed. I would almost call it a hearing hangover like I would need two days with just no talk. I didn't want people around me. I just wanted to be alone to get my energy back."
Over time, Alex has learned to advocate for herself and set boundaries in social situations. She recognises the significance of taking breaks to rest her ears and energy, especially in group settings.
"Even just in the last six months, my social life has been coming back. And I think one of the biggest things that's made that possible is that I'm acknowledging there will be times when I'm just not going to hear. And that's okay. But I can still be out with my friends and enjoy being there. And if I take that pressure off myself, instead of constantly trying to stay engaged and constantly trying to hear, I'm getting a lot of enjoyment by just being with them, you know? It just gives me permission to have the breaks. So my friends know, and they don't get worried. If it looks like I'm, sitting back, they carry on, and I really like that."
From Hearing 'Loss' to Deaf 'Gain.'
One profound change in Alex's perspective came when she began to embrace the concept of Deaf Gain, a movement that focuses on the unique advantages and strengths that a person develops when they can't hear.
"I gained a superpower which is lip reading. And I think it's actually really fun, and it helps. A lot of hearing people would probably love to lip-read! And I'm also hoping to gain another language [Sign Language]. When the time comes for me to get a cochlear implant, I think a big part of my journey has been acknowledging that even if I'm still in this hearing world, I will be deaf or, you know? I want to embrace that."
Embracing her deafness has allowed Alex to find joy in the simple moments of life, such as taking morning walks without her hearing aids and just being at peace with herself.
"One of the things I do to embrace being hard of hearing or deaf is I go every morning for my morning walk and don't wear my hearing aids because I'm just allowing myself to be me. I love it. It's honestly one of my favourite parts of the day."
Her relationships with others have also deepened as they have grown together in their journey of communication and understanding. Looking through a Deaf Gain lens has helped Alex invite the people in her life to share in and better understand her experience. It's given her much more confidence to ask for what she needs.
"It's okay to make some little changes in your life to make it easier to manage your hearing loss. And, when you make those little changes or figure out how to ask people for a little accommodation, it doesn't affect others as much as you think. You know? It only really benefits you and makes your life easier."
Listen to Alex’s podcast Silence Speaks here: https://nzpod.co.nz/podcast/silence-speaks
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: