The Switch-On

Richard_Switch on photo

The other day I watched a really good TV documentary. I could really identify with it through my own personal experience of getting a cochlear implant.

It was called ‘The Switch-On’ and it was shown on the Scottish BBC Alba channel. Although it is filmed in Gaelic, it has English subtitles. You can find the link here

It follows the lives of five cochlear implant patients at Crosshouse Hospital in Kilmarnock from their first assessments to their operations, switch-ons and then their lives post-switch-on. Andy Palmer from ‘The Limping Chicken’ deaf blog has just written a very good review of it too: here

Andy highlights the fact that this documentary tells cochlear implant stories you don’t see in viral Facebook or Youtube videos of switch-ons with young women bursting into tears when they can hear for the first time or babies breaking into a cute smile.

It may be some people’s experience of their switch-on but it wasn’t mine and it wasn’t for many other people, like the people shown in this documentary. I was just so relieved it had worked and thankful that I could hear again!

This is the first time I’ve seen anything that presents a more realistic, balanced picture of what it’s like for many people during and after their switch-on.

The outcome varies a lot between people depending on many factors such as the surgeon’s skill, how long they have been deaf, their knowledge of sound, speech and ability to lipread. The programme showed how very different the expectations and outcomes were for the different candidates.

It’s all about managing your expectations. I remember that my expectations were very low. I didn’t want to get my hopes up too high just in case it didn’t work and I couldn’t hear anything.

It was definitely worth the risk though and it had taken me a long time to get to that point. At the time, my hearing had deteriorated to such an extent that I was struggling to communicate with anyone without them having to write it down and my hearing aid was not giving me any benefit. I felt I had very little to lose.

Thankfully, the operation was a success and immediately after the switch-on, I could hear much better than I could before. It met my expectations and more. I could have a conversation with my wife again and after a while speak to my mother on the phone after five years and listen to music again.

I have to be realistic though. I still struggle to hear with it at times, especially when there is a lot of background noise. I still have to rely on captions to follow TV programmes, films and theatre performances. I have also had a few times when the processor has failed and have been left completely deaf over the weekend until I could get back to the hospital to get it fixed. I am still deaf without it.

Cochlear implants are not magic bullets to restore hearing. I have met some people whose cochlear implants have either failed completely or not turned out as well as they had expected. For many people it is a long process involving months of therapy after switch-on and for a few others they still struggle with them, even years later. They are successful for most people though.

I can honestly say that my life has been transformed with my implant and it has really helped my confidence. I am now working again after I had to give up my job when I lost my hearing, I am socialising again and I can communicate much better with everyone around me.

I could really relate to Mark in the documentary, a forty-eight year man working as a sign-fitter. He had suddenly lost his hearing over a period of ten months and not only struggled to communicate with anyone, but he had lost his social life, was on medication for depression and was at risk of losing his job from the company where he had worked for thirty-two years.

It is ridiculous that his boss was considering sacking him if the cochlear implant didn’t work because being deaf does not affect your ability to put up signs. All his boss needed to do was to make a few reasonable adjustments to help him do his work. Thankfully, his cochlear implant operation was successful and he kept his job.

Mark was like a different person after his switch-on. He talked about how amazing it was to be able to hear his dog walking and breathing again, everyday sounds that most people take for granted. He got his life back, which was brilliant.

We also saw Rona, a sixteen-year old girl, who lost her hearing three years before when she was a singer in the local choir and had her whole life ahead of her. She had lost a lot of her confidence and didn’t want to go to school and mix with her friends. Her mother said that she had lost her independence, which was particularly hard for a teenage girl.

We saw the switch-on of Rona’s second implant, which was a success. Afterwards, it was great to see her going to see her favourite band, One Direction, in concert with her mum. When she found out that the band’s management were so inspired by her story that they invited her backstage afterwards, she was overcome with tears of emotion. Seeing her smiling face as she took selfies with the band and they hugged her, I felt so happy for her. She’s now planning on going to university, which is brilliant.

Then there was Craig, a seventy-five year old man, who had become profoundly deaf through progressive hearing loss over many years. He couldn’t have a normal conversation with his wife anymore without her writing it down and it was really sad to see him struggling to chat to his grandsons in the garden.

I meet a lot of elderly people, who struggle to cope with their hearing loss. Many have arthritis and sight loss too, and some have dementia. It is very difficult for them and their families to adapt to the sudden change as their hearing gets worse and they feel increasingly isolated.

Unfortunately Craig’s switch-on was not as successful as he and his wife had hoped and he still struggled to understand what she was saying to him. It took a lot of perseverance and months of therapy before his hearing got much better. Thankfully, it did and it was obvious from watching him talk to his wife and grandsons how much better he could hear and communicate with them.

We’re told in this programme that only 5% of people who could benefit from a cochlear implant actually receive one. That is a real shame. I think that more people like Craig over the age of sixty-five would really see the benefit of getting a cochlear implant, but few of them actually get one.

I’m glad this programme showed a more realistic side to the story we often hear about cochlear implants being ‘miracle cures’. It’s important for anyone considering one to research it well, talk to other people and manage their expectations. But as Mark said in the programme, I think that everyone, who would benefit from one, should have the chance to get one, not just a select few.

Come and meet cochlear implant users

Cochlear implant candidates
It has been just over a year since I had my cochlear implant switched on. If has made a huge difference to my life, enabling me to hear much better and communicate without constantly struggling with my wife and family.

It has also given me much more confidence in social situations and family gatherings. Whereas before, I would make constant excuses about not going out and mixing with groups of people as I found it too frustrating and isolating, now I am going out again, meeting new people and attending social gatherings.

Having a cochlear implant is not a miracle cure for deafness and everyone’s experience of having one is different depending on your previous knowledge and perception of sound, among other things, but all I can say is that in my case it has been truly life-changing. I can now listen to music again, which I hadn’t been able to in years and I can use the phone again and speak to my family, which I hadn’t been able to do for about five years since I first started to lose my hearing.

I’ve recently become a cochlear implant mentor for AB, the company who made my cochlear implant. The idea of being a mentor is to meet with anyone considering having a cochlear implant and just to chat with them informally about anything they want to ask me about cochlear implants, whether it is the implantation process and what to expect after the switch-on, or what it is like now for me as a cochlear implant user.

We’re having one of these informal meet-ups soon on 8th August in London for potential cochlear implant candidates, so if you or someone else you know is a cochlear implant candidate, why don’t you come along? There’ll be a few of us there and we’ve all got our own personal experiences of being cochlear implant users. We’d love to see you there, have a chat with you and share our experiences with you.

When I was going through the cochlear implant assessment process, I spoke to quite a few cochlear implant users who talked about what it meant for them to have a cochlear implant and how it had changed their lives. I wish I had also had a mentor at the time to help talk me through it.

If you’re interested in coming along, please contact Ben Leigh from the advert above. We look forward to seeing you there!

My new musical experience at the amazing ‘Book of Mormon’

Recently, I went to watch the matinée performance of the smash-hit musical ‘The Book of Mormon’ with my wife Joanna in the West End. I had wanted to see it for quite a while now, so as soon as I saw that there was going to be a performance captioned by STAGETEXT I booked our tickets straightaway. This musical has won 9 Tony awards in the US since it opened there in 2011, and it has been showing in London since last year.

book-of-mormon header

It was also the first musical that I would watch since having my new cochlear implant switched on, so I was really looking forward to being able to hear the music and I wondered what it would sound like with a hearing loop, which I had not really used before. I didn’t go to musicals before I had my implant as I couldn’t hear the music or make out the lyrics when I wore a hearing aid.

We arrived at the Prince of Wales theatre where it was showing and saw that it was packed, with people queuing for tickets outside in the street, even for a Wednesday matinée. We had seats in the circle with a perfect view of the caption unit in front of us, looking down towards the stage.

I thought the stage set was amazing. It was like a psychedelic vision of heaven complete with fluffy purple clouds and sunbeams shining through them, edged by multi-coloured stained glass windows and white pillars, like you would find in a chapel. It was spectacular.

Book of Mormom stage set

The storyline is about two mismatched young Mormon boys, the clean-cut Elder Price and the geeky Elder Cunningham who, after just completing their missionary training in Salt Lake City, get dispatched to northern Uganda for two years to try and convert the local people to Mormonism. The two Mormon boys are very fresh-faced, naive and eager to baptise the locals and convert them, but when they arrive they are shocked at what they find.

The village they have been assigned to is war-ravaged and desolate. 80% of the people there have AIDs and the villagers are under the corrupt and evil control of the local gun-toting warlord, who thinks nothing of shooting people in the face and forcing the young girls to undergo female circumcision. How on earth would they be able to convert these people to Mormonism, when they were worn down by years of oppression, starvation, violence and corruption?

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This was a far-cry from the idyllic image of Africa they had expected, with one of them saying that “Africa is not like the ‘Lion King’, is it?” As the story progresses, it becomes obvious that they are not going to convert the locals by simply preaching to them from the Book of Mormon, so the ingenious Elder Cunningham, who is known for being creative with the truth, spins them a yarn about Jesus coming down in the ‘Star Ship Enterprise’ to save them, inventing all sorts of tales to twist the truth into what the locals want to hear to appeal to them, and in the process, he ends up converting them all to Mormons and baptizing them.

Book of Mormon locals 3

I found the storyline hilarious, although though the dialogue is pretty shocking. It is blasphemous, crude with lots of swearing, but it is all done in such a way that somehow you can’t take it at all seriously. I think this is a very clever trick done by the creators. It is a satire on organised religion and squeaky-clean American culture, contrasted with the appalling situation of the oppressed and poverty-stricken people in Uganda, but because it is all shown in such a comical way, you can’t help but laugh at it all.

The acting and singing was absolutely fantastic, and I was amazed that I could hear the lyrics so clearly through the hearing loop combined with my new cochlear implant. It was great for me to be able to go the theatre and hear music again after so many years, which, combined with reading the captions, was a totally new experience for me. I was still singing the words of the songs in my head as I came out of the theatre and went home.

I particularly loved the character of the weird geeky Mormon Elder Cunningham, played by the actor A.J. Holmes. When he performed the song ‘Man Up’ after being deserted by his companion and he was expected to convert the distrusting natives on his own, I was in fits of laughter. It was brilliant.

Book of Mormon_geek2

I also thought that the actress Alexia Khadime who played the Ugandan girl Nabulungi was fantastic too. She was sweet and innocent with a beautiful voice. In the scene where she sang about her dream of ‘getting the bus to paradise to what she called Sal Tlay Ka Siti (Salt Lake City), she sang it with such amazing passion and conviction, she blew the audience away. The lyrics of the song really made me laugh, such as “I bet the warlords there are really friendly, they help you across the street. There’s a Red Cross on every corner, with all the flour you can eat”. It was pure comedy gold.

Overall it was very entertaining, cheesy and camp. I just didn’t want it to end. The acting and dialogue was wacky and outrageous, just what you would expect from the creators of ‘South Park’, Trey Parker and Matt Stone. It is definitely not for the faint-hearted or easily shockable though, but I loved it. I would love STAGETEXT to put on another captioned performance of this, because I cannot wait to see it again!

Book of Mormon_RT T-shirt

Rediscovering sound – like meeting up with an old friend

Richard CI_beer

After six weeks of anxiously waiting after my cochlear implant operation and hoping so much that it was going to work, I finally had my switch-on last week.

So much has happened in those last six weeks that I don’t really know where to begin to tell you. I thought it would be very difficult and very isolating trying to adjust to living in a world of total silence and tinnitus again. I’m not going to lie to you. It has not been easy and I have got through watching the first three subtitled series of ‘Game of Thrones’ on DVD followed by the complete series of ‘House of Cards’ while recovering at home. I can highly recommend both of them, by the way. But it wasn’t half as scary or as isolating as when I first lost my hearing four years ago.

The difference this time is that I have learned to live with it and adapt to my deafness. In fact, it has changed me a lot as a person and how I see the world. But even more importantly, in the last few years, I have gained a whole new network of friends, who have provided me with the emotional support, help and guidance I have needed to keep me going in some pretty tough times.

I am especially grateful for all also the support and kindness shown by my fellow volunteers and friends from Action on Hearing Loss and other deaf charities I’m involved in.

It is wonderful that even when I have not been able to hear anything and have struggled to communicate with my wife and other people on a daily basis I have been able to meet up with my fantastic friends and have been to some amazing events recently. I have not had to struggle to communicate with them and they have been very kind and patient with me. We all have shared experiences of living with hearing loss and they know how to adapt their communication tactics with me.

So how was the switch-on and how has it been over the last few days since then? Well the only word I can use to describe it is “Amazing!” When the audiology technician first switched my cochlear implant on and I could hear the beeps as she was testing what I could hear, I couldn’t believe it. I just thought “Wow!” Immediately I could hear the sounds around me really clearly.

At first the technician asked me if I could hear her voice and I replied that I could. It was very clear. Then I heard water running from the tap in her office and even the ticking of the clock on the wall. These were sounds that I hadn’t heard in years as I couldn’t hear that well even when I wore my hearing aid until fairly recently. It was crystal clear. The difference in the quality of the sound I can hear now and the sound I heard from my hearing aid is huge. I hadn’t expected it to sound this amazing. It is truly life-changing!

Over the last few days it has been wonderful just to have a normal conversation with my wife without struggling to lipread her and follow what she’s saying. On that first evening after my switch-on I sat in the garden with my wife and my dad chatting about what an amazing day it had been. The next day I rang my mother and had a chat with her on the phone. Even though I still struggled to hear her as I think it will take time to learn to re-adjust to it, she was over the moon just to hear my voice! It was the first time I’d been able to speak to her on the phone in over three years.

Every day since then I have just been enjoying being able to hear again and rediscovering sound I thought I’d lost a long time ago. It’s like meeting up with an old friend you haven’t seen in a long time and rediscovering the things you have in common and what you can remember about them. I am constantly surprised and amazed at the sounds I remember from before and can suddenly hear so clearly again.

Yesterday, for instance, I heard a sound I didn’t recognise. It was the sound of my dog Jake’s paws as he walked across the laminate floor in the lounge. I hadn’t heard that sound for a long time and I was surprised by it. Later I sat outside in the sunshine and for the first time I could hear the sound of my cat’s bell on his collar as he ran down the garden to chase the birds away.

It’s everyday sounds that I now find truly amazing. Words cannot describe how happy I feel just to be able to hear them again after such a long time. I put on a CD in my car this morning to find out what it would sound like. I have always loved music but I haven’t been able to listen to it for several years now. I listened to an Oasis song which I’ve always loved called ‘Live Forever’. It didn’t sound the same as I remembered it but because I knew the words of the song so well from memory, I could listen to it and appreciate it. I never thought I would ever be able to hear music again.

Richard's CI blog_Oasis 2

I feel like I have come a long way since I first started to lose my hearing. I have met some incredibly inspirational people on my journey and I am now starting to learn to adapt to being able to hear sounds again with my new cochlear implant. It will take a lot more time to get used to it and to rediscover sounds I thought I had lost a long time ago.

I have also had a few teething problems with it since yesterday, which has been frustrating, but I think like since it is completely new to me, it will take time for me to get used to using this technology. I posted a question today about why my new cochlear implant suddenly didn’t seem to be working on the AB Users Forum on Facebook and I got lots of helpful advice from fellow users, which reassured me a lot that the problem could be fixed. Thanks very much to those people on the forum. It helped me a lot.

At the end of the day, though, I am still a deaf person, caught between the hearing and the deaf worlds, being both amazed and frustrated at both worlds with equal measure. I think underneath it all we are all human beings with similar hopes, dreams, problems and anxieties. We are not all that different at the end of the day. All I know is that right now I am just enjoying rediscovering being able to hear again.

Sound Advice at the Ear Foundation: going back to the start

Last Saturday was an incredibly special day for me. I woke up very early, and I was really excited to be going back to the Ear Foundation in Nottingham. This was the same place where I went for the intensive rehabilitation programme run by Hearing Link a year ago for people with a severe to profound hearing loss, and I had returned home feeling like a different person with renewed optimism and confidence.

Susan Hamrouge (the lady in the red dress in the photo) had invited me. She had been the facilitator on the Hearing Link course a year ago. She had asked me to talk about my own experience at a ‘Sound Advice Adult Day’, which was about peoples’ personal experiences of deafness. Susan works as a speech and language therapist and is a Director of the company ‘Sound Practice’ in Stoke-on-Trent. She has been a great support and friend to me over the last year, helping me with my talk and building up my confidence to deliver it in public.

The Ear Foundation is a charity which was founded in 1989 by Gerry O’Donoghue, a surgeon and Barry McCormick, an audiological scientist, to fund and provide children with cochlear implants, which were not available to children in this country until then. The first child, Michael Batt, was implanted the same year in an operation funded by Mrs Marjorie Sherman, who the main Ear Foundation building is named after. Since then the work of the Ear Foundation has expanded to what it is today, providing a bridge between cochlear implant centres in hospitals where the operations are carried out, and homes, schools and work where they are used. They now provide support, education, advocacy and lobbying to mainly children but increasingly also adult cochlear implant users.

There were about thirty-five people there, some with hearing aids, others with cochlear implants and also BSL users. I was asked to talk after the first speaker, Jan Sanderson (the other lady in the photo). Jan is a Programme Support Volunteer for Hearing Link, who I had also met on the programme a year earlier. When I listened to her talk then I had felt really moved and inspired by her story. She described how she had hit rock bottom when she had lost her hearing twelve years ago shortly before her daughter’s wedding. It had turned her life upside down and that of her husband and family too. She had spent eight years living in a world of total silence. Eventually, she had decided to turn her life around and she had a cochlear implant. She has devoted her life to helping other people affected by the deeply emotional impact of hearing loss and helping to raise deaf awareness.

Jan has worked on over fifty intensive rehabilitation programmes with Hearing Link, working closely with people with severe to profound acquired hearing loss. She described the joy she feels when she sees people gradually change over the course of the week from feeling depressed and isolated when they arrive to being much more positive and confident when they leave.

When I listened to Jan, I felt that I was no longer isolated and I felt a lot more inspired and empowered to go out and transform a very negative experience into something positive. Jan is a very warm, empathetic and down-to-earth person, who has had a big positive impact on my life since I met her and she is a true friend to me.

After my talk, there was a really interesting talk by a Deaf BSL user called Gloria. She signed so fluently and quickly that the BSL interpreter couldn’t keep up with her! She described how her Deaf parents brought her up and she went to a deaf school, but that her husband is hearing and while some of her children are deaf, others are hearing. She has led a very interesting life and has worked in Uganda for two years, helping to set up a deaf school there. She described how poor and difficult life is there, particularly for deaf children, who are often shunned and ignored by society.

Since returning to the UK, Gloria has been very actively campaigning for greater accessibility for Deaf BSL users in public buildings such as hospitals and within the NHS. Her current campaign is to help BSL users report crimes to the police when they often cannot communicate with them and explain what has happened. She has helped produce a brochure with some basic BSL signs to help the Nottingham police force understand and communicate with Deaf victims of crime, and she campaigns for BSL interpreters in public places.

Gloria’s talk led to a big debate among the group about accessibility to NHS services and the police among D/deaf and hard of hearing people. Everyone in the group agreed that many people working in the NHS and public services were  not very deaf-aware, and this made accessibility very difficult. They shared their personal stories of how difficult it was to attend GP and hospital appointments on their own because of problems understanding the doctors and communicating with them. Jan added that it had been her mission to improve communication and accessibility in public places for people with hearing loss by campaigning for change.

I personally feel really passionate about raising deaf awareness in hospitals and public services too as they are frequently inaccessible. For example, last week I had to go for a scan in a major London hospital and I was faced with a two-way intercom system to gain access to the building, which I couldn’t hear. This means that in future, I need to take someone else with me to help me gain access. I have recently given talks to audiologists in London about understanding the communication needs of deaf and hard of hearing patients, and hopefully after hearing my talk, they will try to become more deaf-aware.

I was keen to leave shortly after lunch as it was Cup Final Day and I wanted to get back home to see my team, the mighty Manchester City, wipe the floor with the lowly Wigan. I was sad to leave as I had met some amazing people who I had learned a lot from, but I was looking forward to seeing City lift the Cup. However, after seeing the shocking result of Man City 0, Wigan 1, I wished I had stayed in Nottingham where there was a lot more passion on display than among the Manchester Blues!

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