Last month, our own Robyn Carter celebrated a big anniversary – two decades with a cochlear implant!! Back in February of 1993 she was the eighth person in New Zealand to undergo cochlear implant surgery. Over the years she has become a committed activist for late-deafened people in several organizations including the SayWhatClub.
In addition to her involvement with SWC Robyn developed a global focus group in Facebook after becoming dissatisfied with the lack of support for people with cochlear implants in Facebook. Her group is called Cochlear Implant Experiences (CIE) and its membership grew to over seven hundred within a couple years. When she is not on line, Robyn works hard in New Zealand advocating for captioned television. She is a true trail-blazer.
Robyn is also a dear friend, who I met in person in 2008 when we shared a room at the SayWhatClub Convention in Philadelphia, PA. Without her encouragement and support, I am not sure I would have a cochlear implant today. I am pleased and honored to be conducting an online interview of my fearless, outspoken, determined friend, Robyn Carter, for our SayWhatClub blog. Let us begin.
Kim: First off, let me congratulate you on twenty years with a cochlear implant, Robyn. When did your hearing loss start, and where or how did you first hear about cochlear implants?
Robyn: I was born with a mild hearing loss which wasn’t picked up until I was at school. I remember the hearing tester in the school going, ”Are you sure? Are you sure?” and everyone giggling. Then I was made to stay behind, and I was retested at the end. I received my first hearing aid when I was 10, and about this same time, my hearing started deteriorating. My hearing gradually deteriorated over the next 20 years. When I was 31, in 1993, I lost the last vestiges of it. Cochlear Implants were new then. There were only 7 adults in New Zealand with them, so it was rather scary. Fortunately I had met with one other person who had one who loved hers, and this made me decide to go ahead.
Kim: So you were the eighth person in New Zealand to have cochlear implant surgery! When you investigated this “new” technology, what did doctors tell you about it? Were they certain it would work for you, or was there still a large degree of uncertainty back in 1993?
Robyn: I didn’t really look into it – I had no choice but to have it, as I was having a major operation in my other ear, which had a high chance of losing the tiny bit of hearing left. So they said I needed the implant before they did the operation, as they didn’t want to destroy any hearing whatsoever until the implant was up and going and they knew it was working. The doctor who was looking after me thought it would work really well with me and he was right. There was not much uncertainty – just excitement and new hope that I remember.
Kim: That is wonderful! You have had a few cochlear implant surgeries by now – one on each ear and a re-implantation. Is that right? I bet you have seen a lot of changes in CI surgery over the years, as well as modifications of the device and technology. Can you discuss some of the differences between 1993 and today, some of the changes you have experienced?
Robyn: No – I’ve only ever had one ear implanted, but I’ve had 3 implants now on the same ear, the original and two re-implantations.
Kim: Thank you. That actually clears up some confusion for me. I understand now that the other surgery rendered you completely deaf on the UN-implanted side in 1993 around the same time you got your first cochlear implant. So what exactly happened on your implant side? Why have you needed three CI’s?
Robyn: I was originally implanted with the N22 implant in 1993. One month after I was implanted, a small improvement was carried out on the electrode arrays to stop a particular problem from arising. Unfortunately, I was already implanted so there was always a chance that my electrode array could be problematic. However, there was no need to worry – what will be will be – and I got fifteen years of near normal hearing with my old N22 before it did fail.
In 2007, I woke up one day and I could hardly hear anything, and when I did hear something it was painful. Took myself off to the implant centre only to have all my electrodes bar 5 switched off. Amazingly I could still hear, just things were very quiet. Implant failures in New Zealand were just about unheard of, so no one could really believe anything was wrong, particularly when the test that I was given to see if the implant was working came back as negative. ”The implant was perfectly fine.” I knew it wasn’t. So it was nearly a year before I was re-implanted while I went through a whole barrage of tests and frustrations. It was decided to implant my other ear, but first they checked it that was possible. I ended up having an EABR (Electrical Auditory Brainstem Response) under general anaesthetic, and it was found that my other ear was totally dead and totally non implantable.
Finally in 2008 I was re-implanted – this time with an N24 and Freedom Processor. The surgery scar should have been a lot smaller, as when I was first implanted in 1993, the incision was a huge C shape over half my head. Unfortunately for me, the surgeons had to keep to the original C shape to make sure they didn’t damage any nerve endings. However the time spent in hospital was much less – only 24 hours really, compared to 4 days back in 1993.
Kim: Wow! What a difference! Four days compared to twenty-four hours!
Robyn: I was switched on, with the new processor and initially it seemed hopeful that things would be good. But things never really improved beyond the first day. In fact, they got worse. I attended the SWC Philadelphia Convention and really couldn’t hear much because the implant was giving me a lot of grief with Non Auditory Stimulation.
Kim: I remember that. You coped amazingly well. I don’t think anyone realized how much trouble you were having with your implant at that time. I thought you simply needed a new map. Since people often need map tweaks with new implants it didn’t seem like you were having major difficulties especially since you lip read so well. You went to New York after Philly, and then on to California. Big trip!
Robyn: I remember being in San Francisco and having to turn the implant off in the bus as it was so uncomfortable. When I got home, it was back to the implant centre and once again a few more electrodes got turned off. A few days later, and a week after that, still more. At this stage I burst into tears and asked for an x-ray, remembering a post somewhere on the internet about electrodes migrating out of the cochlea and wondering if it was happening to me. One x-ray later it was confirmed that this indeed was what had happened.
I had to wait for nearly another year before I was re-implanted once again in 2009. This time the “switch on” was much better and I could hear much better, but still wasn’t perfect. It took about 2.5 years before I started hearing almost as good as the original implant. While with this one I get around 100% open set sentences in quiet, I have never done well in background noise like I did with the N22.
Kim: One hundred percent is incredible! I do not even hear that well being bimodal with a hearing aid on one side and CI on the other. What was your mapping process like compared to today?
Robyn: The mapping experience between models has much improved. The N22 was always needing mapping – sometimes every few months, certainly after each cold I got. With this implant, I’ve noticed it much more stable, and only needs to be mapped approximately once a year.
Kim: That is interesting about the instability of the N22 compared to the N24. How has the technology changed between your current model, the N24 and Freedom processor and your first model, the N22?
Robyn: With this new implant, I can also hold more than one programme that I can switch to, and from in different situations. The old N22 only had two – normal and a switch for background noise. However, I find I never change programmes. I’m so used to only having had one in the old implant, I feel it’s unnecessary with this one – so just leave the programmes alone and use just the one setting. The biggest improvement between the two is the fact I have a Behind the Ear model. For thirteen years I wore a body worn processor which I HATED. It was such a relief to be upgraded to a BTE about three years before my implant failed. I feel much more normal having a BTE – I always felt like I was really disabled wearing a body worn processor. Silly I know, but that’s just how I felt.
Kim: I know what you mean about wearing a BTE versus a body worn processor. I have both, but I much prefer my BTE as I find it more convenient to change programs on my BTE Harmony than my body worn Neptune. I imagine the “medical beige” cord snaking up your neck seemed pretty conspicuous back in 1993. Nowadays, processors come in designer colors and everyone is plugged into ipods or some other device. No one notices a cord snaking around your entire body. A couple times while wearing my Neptune in the pool people have asked if it keeps track of my workout and calories burned. HAHA! I wish it did!
The initial “turn on” appointment can be a disappointing experience for many cochlear implantees. What did voices sound like when your first cochlear implant was initially turned on?
Robyn: When my cochlear implant was turned on for the first time in 1993, it sounded like Donald Duck underwater. I thought it was awful. I was still in hospital at the time awaiting surgery, and was really exhausted at the end of the first day so went to sleep early. The next morning, I woke up, sat up, and looked at the bedside cabinet. There was my trusty hearing aid that I was used to, and the $50k cochlear implant side by side. I reached over for the hearing aid. Put it on. I didn’t want the difficulty of hearing with the implant. Then I felt guilty, and took the hearing aid off and put the implant back on. Switched it on.
About 5 minutes later, the doctors turned up on their rounds. They had lots of questions about the implant. The first was, “How does my voice sound?” I was confused. From the night before to now, somehow it had ‘normalised’ while I was asleep. I said it sounded normal. Then he asked me, “How does your voice sound?” Like it always has, I replied. I was simply amazed. Then I asked him what was the bell ringing, which I had never heard before, and where was the phone ringing coming from, which I had never heard the whole time I had been in hospital.
So after a mere 12 hours, the brain had switched over. I went on to have an extremely successful hearing experience with the N22.
Kim: That is truly amazing, Robyn! During the past fifteen months I have to say that the work our own brains do while adjusting to digital sound has been the most fascinating for me.
Many cochlear implant recipients experience a “WOW” moment after their turn on. Do you have a favorite hearing story that still moves you?
Robyn: Nothing that moves me, but one that makes me laugh. Shortly after getting home with my new implant, my daughter had gone to bed, and I was alone in the lounge. I heard footsteps outside. I thought I had prowlers. I turned off all the lights and was looking outside trying to see them. Couldn’t see a thing. I noticed the footsteps were ‘louder’ when I was in the kitchen, so was peering out the kitchen window when something caught my eye. The kitchen tap. . . WAS DRIPPING .. . And right in time of the “footsteps!” Mystery solved! When I told my mother, her dry comment was that now I can hear the taps dripping and save water– would I be able to ‘hear’ when the lights were left on, so I could then save power!!!
Kim: HAHA! It is funny about the everyday sounds we find out we’ve been missing after getting the implant. I had no idea my microwave beeped, for example.
Nowadays the CI companies have their own websites with rehabilitation exercises designed to improve speech understanding and phone use. I have been to Cochlear‘s site and to the Advanced Bionics site. What was the suggested rehab method like back in 1993? When did the rehabilitation websites go up?
Robyn: Rehabilitation? What is that? Back in 1993, I was switched on. Given my box full of equipment, and sent out in the big wide world to make sense of it all. We had no rehab whatsoever, no testing, nothing. Just a switch on and off we went. A few years down the track at mappings I started being tested, and as they got more info, the testing got to be sophisticated, so they could compare results. To be honest, I’ve never looked at the websites for rehabilitation, because 20 years down the track, I don’t really need it. I suspect the websites are only recent though.
Kim: I know from personal experience that you are an “expert” lip reader (in my opinion anyway), and also you know a bit of New Zealand sign language. It seems you were well prepared for a life of silence before you got the cochlear implant. How has the cochlear implant changed your life?
Robyn: The biggest impact the Cochlear Implant gave me was the ability to keep up with my peers in business meetings. I finally got taken seriously when they realised I DID have an opinion. This in turn gave me salary and responsibility increases, until I was managing the department just a few years later. Up until the implant failed the first time in 2007, I was taking this huge increase in hearing for granted. Because I was having no problems, I thought the problems the Deaf community faced had disappeared. When I went back to profoundly deaf again, while waiting for re-implantation, I was actually surprised to learn that education and attitudes towards deafness had stayed the same. I’ve made it a personal agenda that I will NEVER take my hearing for granted again, and will fight for those that can’t fight for themselves.
Kim: In America, there has been some negative backlash against cochlear implantation among a small minority in the Deaf Culture community. This seems to be changing slowly over time. Is it the same in New Zealand? Have attitudes toward cochlear implants changed over the past twenty years at all that you have noticed or personally experienced?
Robyn: It was the same a long time ago – but the Deaf Community here in NZ have seen that those with implants don’t necessarily reject Deaf Culture, so there’s a much better acceptance rate. There are still the odd few that don’t want children to be implanted, but the emphasis has now become more that children should still learn sign language if they are implanted. I tend to agree with that. I’ve seen instances where children have been implanted, and haven’t done as well as they should. There could be a myriad of reasons for this, but the fact remains they would have been better off to have had another language in them to fall back on. Getting language into children should be a priority, and sign is a language which could be used to explain what the children are hearing through their implants. Naturally, if the implant is successful, they won’t need to carry on with sign and will eventually drop it, however there will always be those that need it.
Kim: I agree totally. I’m glad New Zealanders take a more balanced approach to sign language.
Tell us about some of your other advocacy work in New Zealand. For example I know you have been actively involved in promoting captioned television there. How do you think having a cochlear implant has facilitated a more successful campaign for captions? Or has it?
Robyn: I don’t think the Cochlear Implant as such has facilitated a more successful campaign for captions. It’s more that I still need captions even though I’m implanted, and they are sadly lacking in New Zealand. So I just put my hand up for the fight. Our success largely comes about because we have a passionate core group of people who want this as much as me, and we are so adamant that is what we need, that some of the broadcasters just gave in and supplied it. However, we are still a long way behind in terms of good access so there’s still a lot of work to do.
Kim: In addition to the advocacy for NZ captions, being on the SayWhatClub’s Social Media Committee as an adviser and administrator of their new SWC Gen-Y page in Facebook for people ages 18 – 40, you also started your own international Facebook focus group a couple years ago to support people with cochlear implants. Your CIE Facebook group is nearing 800 members worldwide. I would guess you have a pretty good pulse on the cochlear implant community. In your opinion what are some of the most pressing issues and concerns for people with cochlear implants globally?
Robyn: I think the issues differ from country to country. In the USA it seems the main issue is to get coverage from medical insurance companies. In other countries such as the UK and New Zealand, the issue is of bilateral implantation – only one implant is covered by the Government, the other you have to privately fund, which puts a second implant out of reach for many. The good thing about Cochlear Implant Experiences, is that there will always be one person on there that can answer a question for those that have a query and I see a good lot of support given.
Kim: I do too.
Robyn, I am extremely impressed by your open sentence scores. Actually I’m in awe, especially knowing that some of your electrodes have been turned off. Do you think your earlier decision and success rate with the cochlear implant in 1993 had a positive impact on your current success with the cochlear implant? In other words, if you had waited ten years or so to get it, do you think your chance of success would have been just as good?
Robyn: I believe my success would be just as good even if I had waited 10 years. I think part of my success is that I’m good at puzzles, which helps with lipreading, and figuring out what was said (filling in the blanks). I’m sure that having the experience of my first implant stood me in good stead for my latest one. My brain took a bit of time to work it all out, but it was still fast.
Kim: With something like 250,000 plus people wearing cochlear implants world wide, it is hardly the pioneering technology it was back in 1993. Still – many deaf people today, including myself back in 2011, struggle with fear and indecision when faced with the prospect of getting a cochlear implant. I’ve seen it estimated that a mere five percent of those who would qualify for a cochlear implant actually ever get one. Is there anything you would like to say to someone considering a cochlear implant today?
Robyn: The one bit of advice I can give is – don’t wait until you can no longer hear, there is absolutely no need to struggle to hear in this day and age. If you are eligible for a Cochlear Implant, grab that chance and run with it – you will not regret it.
Kim: What do you see for the future of cochlear implant technology, or what kinds of improvements would you like to see?
Robyn: I’d like to be battery free. I hate it when mid-sentence my battery runs out. Usually always on the phone to a complete stranger! I would love it if they could somehow have a long lasting battery like they do with the pacemakers. Even if I had to nod my head up and down occasionally to charge it up would be preferential to running out all the time.
Kim: Every deaf person is more than just a set of ears. Can you tell us a little more about yourself– your hobbies, travels, anything?
Robyn: I’m a passionate photographer which I am positive my deafness enhances as I’m very visual. I love traveling and am about to go and visit my daughter in Amsterdam for the second time in 22 days and 6 hours. Not that I’m counting! I love catching up with other SWCers when I do travel, and really enjoyed meeting everyone at the Philadelphia Convention a number of years ago. I do a lot of volunteer work – not only on the SWC and Cochlear Implant Experiences, but also for the local camera club. It keeps me out of mischief!
Kim: Thank you Robyn for the interview! With your experience, passion and talent the SayWhatClub is very lucky to count you among its members. Congratulations again on your twenty years of hearing! May your next twenty be even better! I hope someday they develop that battery free, head-rockin’ CI you’ve thought about. Great idea!
The SayWhatClub in no way endorses specific cochlear implant brands or products. While we recognize cochlear implantation as a viable option for many, we understand it is not always feasible, possible or desirable. We respect and promote individual choice.
This interview is the property of the SayWhatClub and no part of it, including the picture, may be shared without giving credit to the SayWhatClub, the interviewer, Kim Ward, or the interviewee, Robyn Carter