I’m not sure I’ve ever told you about my hearing impairment. Technically I’m deaf without hearing aids, even though I can still hear sounds to a certain extent. Most of it will be lost in translation.
Going back over my life it was noted by my mother I had hearing issues as a child. I was tested and always came back clear. I was nine years old when they decided there was nothing wrong. These days I wonder if my hearing is an auditory problem. I can’t handle loud noises, meaning at a party or night out in a pub or club. I get lost with background noise and if someone spoke to me I may not hear them or respond. I’m sure this happened frequently and those that don’t know tended to get annoyed. Meanwhile, those who did know and I replied to… may have gotten a different reply because my brain translated what it thought it heard rather than what was said. This could cause some hilarity though even that hurt at times.
I came to live in New Zealand to marry my fiancé (still married) and life continued on as normal. By 2001 we had three children who would happily play together. One day my mother in law got fed up with repeating herself and watching me turn my head to the left to listen to her words. It wasn’t something I noticed I was doing. Mum said to me ‘Claire you need to get your hearing checked.’ and so the process started again with some laughter (yellow moulding clay in the ears to make the ear accessory so I could hear. There was also a lot of frustration in the process due to an audiologist who didn’t understand various things. I had my hearing test and then things went sideways when I got pregnant with our fourth child. Hearing were the least of my worries. It seemed there were issues with our new baby. We found out she was Down Syndrome, had Duodenal Atresia and at least one Heart condition. She was born at 35 weeks (I measured 42 weeks) and had surgery at 48 hrs old. Anastasia lived for three and a half months, dying from genetic defect, one they only discovered hours before she passed. It was heart breaking and changed our family for good.
Hearing issues were forgotten for just over a year. It was only after the loss of our daughter that we remembered and requested to continue my journey for hearing aids. Apparently after my new test, it seemed my hearing was a lot worse. I can’t say I overly liked the audiologist at the time and in the long run it seems instinct was correct. We applied for funding and this is when the next lot of frustration began with the audiologist. It was horrible, however I did end up with funding and new hearing aids. The criteria for funding was terrible and still is. I know for a fact part of the criteria was changed due to my complaints and a new article a few years later.
Anyway because I don’t drive and my husband was at work, my mother in law took me to my fitting appointment. This was the first full out laughter we had. I had hearing aids that fit in your ear rather than over you ear with a mould. To get this mould of your inner ear they have to make an impression with this gunk. Here was I sitting in the audiologist office with mum watching on, giggling. I had to bite my lip and shush her. The gunk sticking out of my ears was bright yellow. I wish we’d had phone cameras which could take photos back then. By this stage is was late 2003 or early 2004. I do remember getting my aids and finding out what I was missing. I could hear the people outside the room talking and others walking. It was astounding. Needless to say we still laid a complaint about the attitude of the audiologist and his unhelpfulness with funding, not that it is easy to get anyway. We ended up with a meeting with the funding people on the 1st anniversary of our daughters death. Not a place we wanted to be at all.
In May 2004 we moved to Rotorua and the referral was sent to Rotorua Hospital. The case notes hadn’t been updated for some reason and the lovely audiologist there didn’t realise I already had my aids.
I still found it difficult to listen when there was a lot of noise or loud voices, your brain translate what it hears slower and differently causing much confusion. It is times like these I wish I’d learnt more sign language, however I had no one to use it with since the death of my daughter who was Down Syndrome. Sign language would’ve been Anastasia’s first language.
Getting used to wearing them during the day was good, at night, I didn’t wear them. Even today it sometimes makes me feel like a bad mum due to not hearing when my kids were sick at night. My girls used to care for their brother. It was usually a light switching on which woke me, occasionally it was the mother instinct. I’m so proud of my children looking after each other and being so close.
We had a lot of fun with my hearing, though sometimes it isn’t funny at all. I suppose it depends on the mood I’m in at the time. Most hysterics happened during dinner time when I hadn’t heard correctly and started talking when they looked at me “What are you on about?” look. It could be even funnier if I wasn’t wearing my hearing aids. I must admit it is nice to have the sound of silence at times.
If I’m not wearing my hearing aids, people need to talk to me in my left ear, slowly and clearly, or all I hear is a murmur of words in my right. I remember my audiologist saying I have a genetic condition in my right ear where the film/skin over the drum goes hard, meaning sound can’t bounce off it. I consider myself deaf in my right ear now and don’t wear a hearing aid because it doesn’t pick up enough sound to make it worthwhile. Since this time, I’ve had new hearing aids again and I’m 90% deaf in my right ear and about 70% in my left. In general I can’t hear at all without my hearing aids.
One thing I dislike with hearing loss is continually explaining to others that I have a hearing impairment and they have to speak slow and clearly, only for them to reply. ‘Oh I have a hearing loss too.’ Maybe they have, maybe they haven’t, however none of them wear hearing aids and listened to me clearly and consistently. If you have a hearing loss, get a test.
My second daughter has hearing issues as well, we still don’t know if she has the same genetic condition I have. She hates loud piercing noises, especially fireworks, she had constant ear infections and several surgeries for grommets and always sat at the front of the class. If I recall my own childhood, I also tended to sit at the front of the class. Now I know why… We think it was her auditory issues which affected her schooling, however her learning was more complex than this, though nobody would work out what was wrong.
As of last November, I have new hearing aids. They are digital, have blue-tooth etc and there is a lot more care needed than before. This also means it’s a lot more cost involved and not only batteries to buy. Due to not being able to use the hospital audiology (old doctors fault with referral…ugh) I had to go private though the aids were funded which was a good job since it was over $7k. The only thing I had to pay for was the fitting fee which was $1,340. OUCH. Via the hospital you don’t pay which is why I usually went that route. These aids are great, though I feel like most of my hearing has now gone. I hear even less in my left ear than I used to when I’m not wearing them. I still struggle with background noise, though if I sit in the right place it is a bit easier.
I still have problems with some accents and how fast some people speak. My brain translates the worse slower therefore missing parts. I no longer find it funny when teased if I get something wrong. I’m also quieter than normal and when in a group I don’t join in so much. It’s just not worth it any longer.
There we have me… the deaf writer, though I’m sure there are many of us out there in the world. We all do things differently and we are part of the writing community. I still prefer to message or email people instead of talking. I’ve written over fort books and you can find them on the link below.