Lavinia was a 22-year-old mum living in Chile with two young children when her ears first started to cause problems.
“I remember, my second oldest son would have been about one year old so I must have been 22 when my hearing loss started… We went out of the city on a religious celebration, and it must have been about one o’clock in the morning when all of a sudden, I had the most horrible earache.
I was almost screaming with the pain. There was a woman with us who had a baby and she told me she could cure my earache. She put a few drops of her breast milk in my ear and about half an hour later the pain was gone!”
“Nearly three years later I came to New Zealand and started having pain in my ear again. It was the most painful pain. I went a few times to the doctor, and they said that it was nothing, just a little red.”
The pain in Lavinia’s ears became continually worse, to the point where it was debilitating and disrupting her day-to-day life. She went to the doctor often, complaining of terrible pain in her ear but she always got the same answer – that nothing was wrong.
“At the beginning of the 90’s I was still suffering with this [pain in my ears]. I remember one day I was in bed, about 6 o’clock in the morning and I felt very sick. So, I stayed in bed, had a Panadol and was resting my head on the wall when out of the blue it felt like my head went up and I felt something leaking out of my ear.
When I touched it there was all this blood coming out.”
“I was taken to the emergency [department at a hospital] and the doctor told me that my ear drum [had] exploded. I was there a few days and then they told me that I would have to come back so that they could rebuild a new eardrum.
Then the tinnitus started. I thought I was going mad for years.”
Lavinia wondered why her ear drum had gotten so bad given that she often went to the doctor for help. On one visit to a specialist ear nose and throat doctor, she was told that her hearing loss was probably never picked up because of her narrow ear canals.
“Every time the doctors checked [my ears] they couldn’t see that I had an infection. And this infection had been growing for years and I guess the ear drum couldn’t take it anymore, so it just exploded.”
“They rebuilt the ear drum, and I was good for a little while, but then I started having pain again. I had grown a cyst in the same ear. They had to operate again.”
Once again, the operation helped to relieve the pain for a little while, but then the problems began to come back and worse.
“All I needed was just to turn my head and I was vomiting, [I] couldn’t talk, I couldn’t do anything. My daughter used to put me in the back of the seat of my car like a potato sack and bring me home.”
“I remember one time I went to see someone at the prison in Rolleston and I had just come out and suddenly it [the tinnitus] started. I was on the floor and all I was thinking [about] is how am I going to get home. It was so severe.
After another terrible attack of dizziness, Lavinia went to see more specialists to try and figure out what was wrong. She was diagnosed with Meniere’s.
“Philip Bird, for me, is the most wonderful man. I went to see him and said that I can’t work, I can’t go out, I can’t do anything. I am just cripple.”
“He said that he needs to fix the balance and then I would have a quality life.”
This operation in 2000, involved the complete loss of Lavinia’s hearing out of her right ear. She had to learn to walk again, and to reorient her balance, but it was worth it. For a whole year she was able to work and do activities.
“But a year later it started to affect my left ear. [At this point hearing in] my right ear was completely gone. And hearing [in my left ear] was just getting worse over the next 10 years.
“I went to go get a hearing aid and the lady said she didn’t know how I managed. Out of 100 I could only hear 36% in my left ear and 0% in my right. I got the hearing aid but it didn’t help the tinnitus so I just managed.
“To be quite honest it was the most sad time of life.”
As her hearing loss progress Lavina was once plunged into the darkest time of her life. As we spoke to her, Lavinia had tears in her eyes whilst recounting how difficult these years were for her.
“People don’t understand. You know my partner used to scream at me, my son used to scream at me. It didn’t make me angry, it used to make me so sad.”
“Slowly I started to tend not to talk to people. What’s the use talking when I can’t hear?”
“Everywhere I went… I used to go to the shops, and I would say to the lady ‘please, can you write it down?’ and they would just ignore me. One time I was somewhere that I would never [usually] go for my groceries and the lady must have asked if I had coupons or something. [I didn’t have them but] I had gotten into this habit where I just said ‘yes’ to everything.”
You can hear the heartbreak in Lavinia’s voice as she explains just how badly her hearing loss has affected her.
“I just didn’t talk; I didn’t go anywhere. Even now if you ask me, I have got no friends because I have gotten so used to it… I just can’t change. I have gotten used to my own company.”
“By the time I had the cochlear last year I was just like a bomb ready to explode. I had become so angry and so depressed. Everywhere I went I prepared myself to hide.”
Lavinia was at breaking point. For the last two to three years her hearing loss had gotten so bad that she couldn’t hear a single thing. She desperately needed a cochlear implant to improve her quality of life.
“The day that I came home, and my son showed me the letter [saying I was going to receive a cochlear implant] I just couldn’t believe it…
[Earlier] that morning I went to bunnings to buy some paint, and there was a young man [at the counter] and I said to him ‘I want this paint, but you will have to write to me as I can’t hear anything’. [He wasn’t helping] and I got so angry I just started shouting.
Because I was Deaf it came out loud, and this woman who was behind me at the store just ran. She looked at me like I was a complete maniac.
I was saying ‘Listen, I told you to write because I can’t hear what you [are] saying. I said if you are not going to help me, I [will] go get the manager.’ I tried to explain to the manager what happened – that I asked him three times to write it down, but he didn’t. In the end I just told [the manager] not to bother and walked outside.
I stood at the bus stop waiting for [my] bus and just cried and cried.
So, I got the bus home, and my son was waiting for me with the note [from the cochlear implant provider]. It said that if I’m available in June I could have the cochlear implant. I just couldn’t believe it. Because when I had been sitting on the bus there, I felt like I had had enough. I was thinking what am I going to do? I felt so lost.”
“Someone must have been up there looking after me.”
Three weeks after the letter arrived, Lavinia received her cochlear implant operation. It has changed her life and she is now so much happier.
“It was really amazing. Believe it or not, it has only sunk in in the last 3 months…
[For the weeks leading up to the surgery] I had this horrible fear that I would get there, and they would say ‘no you aren’t going to have it’… It has taken me over a year [for it] to really sink it.”
Unfortunately, Lavinia’s brain is rejecting the cochlear implant, leaving her with dizzy spells which can at times be debilitating. To try and help with these dizzy spells, Lavinia has been receiving regular injections into her ear.
“I’ve been having injections inside my ear [to help with the symptoms]. It is the most painful thing!”
“Six months ago, I started to blow my nose and it just went boom. I had to hold onto the wall. So now every time I blow my nose, I need to make sure I hold onto something. Now I am getting attacks like I used to 25 years ago.”
“The last [vertigo] attack I had lasted three days… everything just goes.”
On a positive note, though, the cochlear implant has meant that Lavinia’s hearing is hugely improved. She can now hear voices, the kettle boiling, and even the washing machine beeping.
“I remember the doctor; he nearly had a heart attack laughing when I told him [this story]. I said, I went to the toilet, and I nearly jumped out of my skin when I heard the flush!! I was so scared!”
“It’s amazing how much we take for granted. I didn’t even know that the washing machine beeped when it was finished. And the rain, I love hearing that on the porch.”
“I don’t even know how I managed [before].”
The cochlear implant has also made a huge difference for Lavinia’s family. Her daughter Sarah explains.
“I started learning sign language when I was quite young, and mum and I both went to classes. And so, me and Mum could always communicate with sign language, I guess a conversation. We always had that which has been really handy.” - Sarah
“It is good [having the cochlear implant], I would be lost without it.” - Lavinia
“I know that I have an accent because I came here [to New Zealand] at 25 and have been here nearly 47 years. People used to find [it] hard to understand me. The first thing I noticed, very quickly, when I had that [cochlear implant] is that people no longer question me twice. I think my vocabulary has improved because before I couldn’t hear.”
“I don’t drive so I am always catching the bus and it always gives me such a joy because now I can understand what they are saying. Before I used to just say “Yes yes yes” when I haven’t got a clue what the lady [bus commander] told me. But now, it is so much better.”
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: