Our impact News Deaf Awareness Week 2019: AVUK patron Janine Roebuck's life as a deaf opera singer Opera singer Janine Roebuck is our patron. Janine is profoundly deaf and had cochlear implant surgery in August 2019. In her own words, she opens up about life as a performer with hearing loss and how she broke down barriers: I was born with normal hearing which began to show signs of decline by the time I was at university, reading French, aged 18. My hearing loss is hereditary. I had set my heart on being an opera singer from the tender age of 13 but was told by an audiologist that I should “just keep it as a hobby because with that type of hearing loss, you will never, ever be able to have a career in music.” I sobbed inconsolably for a few days and then did it anyway, hoping that technology would have a few tricks up its sleeve. It did. It was a challenge trying to hear stage directions in rehearsals and when you are asked a question by the auditioning panel sitting far back in the stalls of the theatre, you pray they are asking you what you are going to sing, and claim confidently: “Madame Butterfly.” Only to discover that they had asked your name. It’s easy to know you have made a faux pas because of the quizzical looks you receive. This silent disability leads to isolation, loneliness, loss of confidence and independence, mental health issues and even dementia. I got my first hearing aids aged 30 + when I had a review saying: “Janine Roebuck as Isabella wore a lavish wardrobe of clothes to good effect, but I began to wonder if she could even hear the orchestra!” Oops. Just to spice things up, I was also dealing with a progressive hearing loss after chemotherapy for breast cancer hastened the process. I was kept going all those years by the absolutely fabulous hearing aid technology out there. My Oticon Opn hearing aids were nothing short of amazing. I heard individual instruments again rather than a cacophony of sound after decades. I enjoyed better hearing in restaurants than my hearing friends. I could stream directly to my aids from iPhone, TV, music etc. But they can’t work miracles when the frequencies disappear completely. A couple of years ago, my lower frequencies began dropping at an alarming rate. When I got down to just 15 per cent hearing, pitch became a big problem, so I decided to call it a day and hang up my tiara before I sang badly out of tune. Time to consider a cochlear implant (CI) – but they are not designed for music. Making a difference I have long been passionate about making the world a better place for people with hearing loss. I didn’t think I would ever need CI’s myself when I became the Patron of Auditory Verbal UK. How much more do I now admire parents who bravely choose to implant their new born babies and toddlers. Such a step of faith. This wonderful charity enables profoundly deaf babies, fitted with first class hearing aids or CI’s from just months old, to listen and speak on a par with their hearing peers and attend mainstream school. This is done through play and problem solving. They are able to do all the things their hearing friends do with no barriers to what they can achieve in life. How fabulous is that? My Cochlear Implant journey June 2019: So, here I am on the threshold of my simultaneous, bilateral cochlear implant journey. At once hugely excited and yet quaking in my boots. It is a journey into the unknown, and everyone progresses at a different rate. I have learned much about what to expect thanks to the wonderful CI forums on Facebook. I am told by my surgeon Mr David Selvadurai that I have been deaf for 47 years so it is likely I will hear ambient sounds first, and speech may take a while in coming. I am reliably encouraged not to expect too much at 'switch on', 3 weeks post-surgery. It is possible that I will just hear bells, tweets and whistles, initially, but am encouraged not to be downcast at this stage. The brain simply needs to recognise words anew. It will do the majority of the work to translate the sounds it once heard acoustically via hearing aids, into the electronic sounds the CI produces. I am a linguist, I can translate. When I do eventually hear speech, I am told that people may sound like the chipmunks, Mickey Mouse, Darth Vader, Daleks or as though they are on helium. I probably won’t be able to differentiate between male and female voices at first either, or recognise the voice of friends and loved ones. But that should be temporary. But on the plus side, I could eventually get a lot of my hearing back. People speak of the joy of hearing wind in the trees, the patter of rain on leaves, of hearing their daughters shouting down from an upstairs room asking where their pink socks are. The opportunity to hear in colour again has to be worth the risks. Nice guidelines have been recently reduced their criteria for eligibility by 10 decibels, so more people will be able to have CI’s. Fortuitously, children who are eligible for implants in this country are given 2 CI’s. For financial reasons adults are only allowed one. Thus, I am having to pay privately for my second implant. I want my ears to learn from scratch and work together. Two CI’s are considered better than one for directionality, speech comprehension, and music. It’s a no brainer for someone whose hearing loss is the same in both ears, like me. July 7: I had my five and a half hour bilateral cochlear implant operation on Friday morning. I am now a CI-borg! Totally without hearing. Switch on, mappings and rehab start in a month’s time. August 3: ‘Switch on’ was yesterday. It wasn’t quite as spectacular as the Christmas lights in Regent Street, but there were jazz hands and a little razzmatazz nevertheless! Everyone (including myself) sounds like Pinky and Perky. Nevertheless I can hear some form of speech and am told I am already three months ahead of myself. It is a feeling beyond joy. I can even hear myself singing ... so run for them there hills! I’m thinking possible comeback - I’m joking. I am loving retirement FAR too much! August 5: I am hearing and sounding like Pinky and Perky still but I am streaming radio 4 as I go about my tasks. Hearing the odd word or phrase. Out of the blue I heard: ‘....conducted by Sir Charles Mackkeras!’ Only day 4. Blimey! To get some context - I haven’t been able to listen to the radio for at least 20 years. They say it takes at least a year for one to be operating fully so imagine what joys are to come.