Share Your Story: Amy
Amy lives with husband Simon and cares for her two young children – Caroline and Melanie-May. She has lived with hearing loss since childhood, however, it was only when Amy experienced a life threatening wake-up call in her 20s that she started to really come to grips with her hearing loss.
“I was crossing the street, after I’d seen the little green man and some random stranger pulled me out of the road. There was an ambulance coming through the traffic light, and I didn't hear it at all. I was completely unaware of it…
…[afterward] I went to the student GP at that time, and they sent me to an ENT and an audiologist.”
“It felt like the penny dropped sort of. You know when you hear stories about people who are colour-blind and then they are just like ah! “Hey, watermelons aren’t blue, after all!””
As a 23-year-old student studying genetics, Amy struggled with the financial cost of hearing aids. As a non-New Zealand citizen, she wasn’t eligible for any government funding or grants.
“I came here to study…I was not eligible for the thousand dollars you can get towards your hearing aids [if you are a citizen].
Thankfully, my dad had some health insurance, which covered some of it which was good.”
And it wasn’t just financial challenges. Although Amy’s “Cookie Bite” hearing loss is genetic, it has taken a long time to get past the stigmatization.
“People associate [hearing loss] with you being old. It’s rubbish. Lots of young adults have hearing loss as well.”
It was only when Amy first put her hearing aids on that she realized there were so many sounds that she had been missing for years.
“In the audiologist, when I first put hearing aids on, I learned heat pumps make noise. I thought, what is that weird noise?
Then we walked home that day. It was autumn and I was walking over crunchy leaves. It’s just like… information overload. It exhausts you.”
“This year I had to get new hearing aids. I found that when I put them in it was severe information overload again.
You get really bad hearing fatigue... It was certainly a few weeks before I found it relaxing.”
Now used to her hearing aids, Amy loves the way she can hear much more.
However, there are still difficulties that she has to navigate every day that full hearing people might not realize.
“The most frustrating is people forgetting that I have hearing loss. You can tell people five times and it's difficult every single time.”
“Being your own advocate is hard. Even the other day, I had to take my little one to the doctor who was wearing a mask, had an accent, and was talking quickly. I was not following at all.
So, I’m like... I’m going to have to tell you again [that I have hearing loss and can’t hear you].
Sometimes I don't. Sometimes, I just make do with not hearing. It’s frustrating.”
As a mum of two young children, Amy has found that striking up a conversation at the school gate can be daunting.
“One thing I've really struggled with is my older one starting school, which is a very normal thing. But you’ve suddenly got to make conversation with all these mothers at the school gate. And they are people I don't know, who don't know anything about me… It's hard.
It causes me a lot of anxiety. It's a very hard thing to lead with in a conversation with new people. Like “Hello I’m Deaf”.
The reaction to Amy’s hearing aids can also be challenging.
“People don't see my hearing aids immediately... they're very small and discreet. You can often notice in conversation when someone suddenly does notice something. Their whole demeanour changes.
The conversation becomes more simplistic, or they start speaking on one level. They become very, very shy… You could have been having a full-on fluid conversation, and then suddenly, everything just becomes stilted.”
In turn, this has affected Amy’s mental health. Although she is now at a stage of acceptance, she has only gotten to this place in the last year. A major catalyst has been engaging with the Deaf community.
“I asked her [my friend], so how Deaf is Deaf? She said, whatever your hearing loss is, if it is affecting you, you're most welcome. Like, just join in [with the Deaf Community].
I always thought of myself as being somebody with fairly mild hearing loss. However, it still really affected my mental health.”
“Just going to have a glass of wine with my mates at a restaurant takes a lot of preparation that isn’t required for somebody who is hearing and that's hard.”
“I get really bad anxiety. Just this week I finally got a baby monitor that vibrates for my youngest (who is three) because I was sleeping through her current baby monitor and just getting really anxious that I'd sleep through it. Or, I wouldn't go to sleep at all, because I would be worried about sleeping through it.
Now I know I won't sleep through it [the baby monitor], and I can sleep better. These things affect other aspects of your life.”
An important part of Amy’s support network whilst coming to terms with her hearing loss has been her husband Simon.
Amy and Simon were newly living together when she was first diagnosed with hearing loss and are now coming up to their 11th anniversary. We spoke with Simon and Amy about how they overcome challenges within their relationship where one person is fully hearing and the other is not.
“There was a lightbulb moment when Amy was diagnosed…” Simon says.
“One thing that I remember really clearly is that I used to have a wireless headset. When it was plugged into the charging station it would make this really annoying, high-pitched hissing noise. I couldn't quite relax if it was doing it. And so I'd always have to turn it off before I went to sleep.
We had these really cross-purpose conversations about that [the headset]. And I didn't quite appreciate that it wasn't that Amy was hearing the sound and it didn't bother her, it was just that, you know, it wasn't on her radar at all.”
“I just have to remind myself that we might not have that same frame of reference.”
Simon suffers from an eye condition that means he wears hard contacts. Towards the end of the day even with the contacts, he doesn’t always see very well. Amy and Simon have found that the challenges just add to the dynamic of their relationship.
“Sometimes I read things for him and sometimes he hears things for me.”
“It helps that we can be upfront with each other. So, you know, if I feel comfortable saying, well, it's gotten to the end of the day, my eyes are kind of tired and dry. Can you do this? Or can you help me?”
“We make it work. Everyone has their own dynamic.”
And Simon could not be prouder of all Amy has overcome.
“I've been really proud of Amy throughout this journey. We didn't know anybody in our group of friends that had hearing loss. There was no role model for what to do or how to handle it.
And I continue to be proud of her. Even seeing the things that she's been doing more recently in terms of learning Sign Language and engaging with the [deaf] community here.
It's also been a bit perspective-altering for me. I no longer just assume that everybody has the same hearing that I do. It’s probably a good thing for me as a person, and as a teacher.”
Throughout it all, Amy has learned the importance of community and realizing that you are not alone. Her advice to others is to not be ashamed of your hearing loss or feel like you are not deaf enough to be part of the Deaf community.
“Separate the stigma that we’ve grown up with – there is nothing wrong with being deaf. And find your community. If you have very mild hearing loss but it’s affecting your life, then the Deaf community welcomes you with open arms.”
“When I first got my hearing aids, I felt like I was in a weird age bracket… I still am. None of my friends have hearing loss. It’s not what you’d expect from a mum at the school gate…
That’s why I put my hand up to do an interview, like this one. It's so important for people that are in the sort of middle years to realise that they are not alone. This is something that affects all sorts of people, and it doesn't have to be something that you feel ashamed of.”
In our Share Your Story series, Deaf and hard of hearing New Zealanders open up about their experiences.
Stay tuned for more interviews, which will soon be released to our blog: