When I first met Cindy, I had no idea she had any problem hearing and I never would have imagined she had been born deaf. Having a mother who resolved to prove doctors wrong after they misdiagnosed her with brain damage, Cindy was eventually able to receive the right treatment. Years later, living in a new country where she had access to specialist healthcare, Cindy received a cochlear implant. This is when her world became a different place. Because of the innovative work of those in the medical field, excellent health services, the support of family and friends, strong determination and a gracious God bringing all these things together, Cindy’s world today is anything but a silent one.
When and where were you born?
I was born in 1979 in Durban, South Africa.
Did your parents know from birth that you were deaf?
No. When my mom was eleven weeks pregnant with me, she had German measles. This is a very crucial age for the baby in terms of sensory development – the brain developing, ears eyes etc. So they encouraged my mom to have an abortion because they said that I would either be deaf, blind or brain damaged. She said no and went through with the pregnancy. Because of the risk at pregnancy, I had several tests done when I was born. At six months, a technician did a test and diagnosed me with brain damage. But my mom refused to believe it and suspected I had a hearing loss because I wasn’t responding like a normal baby would, like my older sister did. They would walk into a room and drop a pot and I wouldn’t respond. I just wasn’t sensitive to noise, even clapping. But when I went to the doctors, they did ‘rattle tests’. I passed them but not because I could hear. My mom thinks I could see them. Or I was just clever (eyes in the back of my head)
For two and half years, they took me to doctors and I got one opinion after the next. I don’t know how they missed it, but they did. After this time, one doctor was also convinced I had hearing loss and sent me to a Cape Town hospital. They did more extensive tests and discovered that I was actually hearing impaired, and not brain damaged.
What happened then?
I was diagnosed as profoundly deaf. Profoundly deaf means that you can’t hear without hearing aids. I was fitted with hearing aids in both ears immediately and had speech therapy.
In those two and a half years, how did you communicate?
My mom taught me how to lip read by making me watch her as she went around the house naming things, mouthing them to me. She would put my hand in front of her mouth so I could hear the vibrations of the sound and put my hand on her throat so I could ‘feel’ the words as she was talking. Communication involved a lot of lip reading and broken sentences before I had hearing aids.
How did having a hearing aid for the first time change things?
Apparently I hated it. It was just too much noise, going from hearing nothing to hearing everything. What a hearing aid does is just take everything and amplify it. I would throw it out the car window while we were driving or bury it in the sand. When my parents would shout at me, I would take them out. Poor parents! It just took a long time to adjust. My speech soon started to improve.
How does a hearing aid work?
A hearing aid is an amplifier. It takes sound and makes it louder than what it really is. It amplifies everything, so I can’t separate the sound. It’s basically like a microphone. You fit it in your ear and the battery lasts for a week, then I put a new battery in.
What was it like growing up with a hearing aid? Do you feel that people treated you any differently?
Back then, the hearing aids I had then were bigger and they would fit into my ears and the processor would be in a little pouch, strapped around my chest, with a wire connecting the two parts. It was difficult to adapt to a new lifestyle. I would have to adapt to physically wearing the hearing aid as well as getting used to sound. And it was heavy, it was uncomfortable. When I was at the beach, it would get in the way as I wasn’t allowed to get it wet. So I couldn’t bath or shower with it either.
How long did you hear using just hearing aids?
About 20 years.
I moved to London after school. One evening, after two years in London, I was walking to the train station and, all of a sudden, my hearing went muffled, blocked in my left ear. I thought my ear might have had wax or water in them so I went to the doctor but he couldn’t see any problem externally. I had extensive tests done and they couldn’t discover anything wrong either. So my dad told me to go back to South Africa to get some tests done there. I had some treatment there to try and see if they could improve my hearing because they suspected I had a virus which had caused the hearing loss, but they weren’t sure. They never really found out what happened. So my dad decided to buy me a digital hearing aid (I had had an analogue hearing aid until then). It was a lot of money. I learnt to adapt to hearing in one ear and making sure that everyone who wanted to talk to me was on my right. It was a big knock to the confidence. I had one ear left. I worried about what would happen if that one went too. I didn’t know sign language or anything because my parents had never taught me.
For about five years, life carried on like this. I had an amazing friend who would help me in social situations and in church. She would tell me what was going on. She was my ears, really. One day, a guy in my church who worked with cochlear implants. He asked to have a look at my audiogram (hearing chart) and said I should consider getting a cochlear implant. But I wasn’t really interested so I didn’t do anything at that stage. But he didn’t give up and kept on persevering, telling me I had nothing to lose. So I decided to look into it and wrote to St Thomas’s in London, explaining my situation. Within six weeks, I got my first appointment. I had to undergo some tests to see whether I could have a cochlear implant because it depends on the shape of your cochlear. I had several appointments to discuss how it would work and what the changes would be. From the time they start testing you, you have to have the cochlear implant within one year in case of illness etc. So it was quite a lot of appointments. The more I went to and the more I heard, the more I liked the idea of having a cochlear implant, and they all assured me that I had nothing to lose, that I had more to gain because that ear was no longer compatible with the hearing aid. I had to do these tests, and they were happy to offer me a cochlear implant. There was a risk that during the surgery I could lose facial muscle or that it would not work. But I thought, ‘what have I got to lose?’ So on 22 July 2006 at 1pm, I had my surgery, which lasted about four, five hours. I had to wait four weeks for recover, for the scar to heal, before they ‘switched me on’.
What happened once you were ‘switched on’?
I could hear everything. I was in a hospital room and I could hear people outside in the corridor, I could hear my voice more clearly… everything was just much clearer. But there were some other sounds that I did not recognise, so I had to ask for help in distinguishing them. It was difficult because people had blocked out the sounds that I was trying to hear. So I had to learn how to figure out the sounds for myself by asking questions or explaining what I was hearing, which was quite hard. I would hear everything from the car starting outside to people turning the pages of their book, to the clock ticking, to birds singing. It was overwhelming and exhausting.
How does a cochlear implant work?
In your inner ear, you have a cochlear, where all the auditory nerves are based. But because my mother had rubella, some of my sensory nerves were damaged and could only send half of sound messages to my brain. So they put an electrode in my cochlear which bypasses the damaged part of my ear and stimulates the auditory nerves.
What was the difference between hearing using just a hearing aid and hearing with a cochlear implant?
With a cochlear implant, you hear more frequency, a wider range of sound.
How did life change after getting a cochlear implant?
I’ve become more confident. I love music, which I’d never been able to appreciate before. I can use the telephone by myself now, whereas before I had to ask for help and most of my friends made calls for me. The world was a different place.
Have there been any challenges since then?
Although people told me that I can hear now, I still don’t hear like the average person. I’ve had to use the cochlear implant with the hearing aid in my right ear because people said I shouldn’t just let the other ear go to waste. But it’s hard because I’d been so dependent on my right ear and now my left ear was stronger. I was trying to turn up the volume on my right ear to match the hearing in my left ear but it was very challenging and took a lot of time. Some people with a cochlear implant get rid of the hearing aid and only use the implant because it’s two different types of sound and that’s hard and tiring.
How would you suggest others treat and care for people with hearing difficulties?
Sometimes I try so hard to fit in and I just want people to treat me normally and accept that I speak differently. Even though I can hear better, people would still want to find ways to improve my speech. Also, people don’t often realise that I’m hard of hearing, but sometimes when they find out, I notice at times that they change the way they speak to me. I get more of a sympathetic response. But it’s OK, I enjoy using it to my advantage!