My take on the Curious Incident play

Curious Incident blog_header

Last Saturday I finally got to see The Curious Incident of the Dog in the Night-Time play in the West End. I say ‘finally’ because I have wanted to see it ever since I first read Mark Haddon’s book a few years ago and loved it. I was actually due to see the play a while ago in the West End but it was shortly after the roof collapsed in the theatre, so I’ve waited until now to see a captioned performance of it by STAGETEXT at a different theatre, the Gielgud Theatre.

Because the book is written in the first person from the point of view of Christopher, the main character, I did wonder how they would be able to convey on-stage the unique way he sees the world, and whether it would work or not. We are led to believe that Christopher has Asperger Syndrome, a form of autism, so because he is telling us the story, we see things through his eyes and we are introduced to his magical, brilliant, but altogether confused, mind.

Curious Incident blog_STAGETEXT

Christopher is a fifteen-year-old boy, who is brilliant at maths and needs everything to be logical and organised to be able to be calm and focused. When they’re not, which is quite often the case, he becomes overwhelmed and terrified, unable to function in a noisy, chaotic world, which is full of things and strange behaviour by other people, which he can’t make sense of.

The way that this was done on-stage was actually very clever. Siobhan, Christopher’s teacher from his special needs school, narrated his story from the book that he had written, at the same time as the actual acting of his story was taking place. It worked well and it was really convincing.

Curious Incident blog_Siobhan

Apart from being a good story, which was very well acted, the other brilliant thing about this production was the stage set. My wife, friend and I had excellent seats in the Dress Circle, facing right onto the stage, with the two STAGETEXT caption units perfectly placed at eye level to either side of us, so I could follow the dialogue really well.

The stage was designed like a giant geometric grid. At various points throughout the action, it would light up with bright colours, flash lots of numbers up or project different sets such as Paddington Station or London streets. Watching the stage sets change, sometimes with walls closing in, opening up or escalators suddenly appearing in the tube station, was like walking into a magical, fantasy world as Christopher’s almost psychedelic imagination is unleashed upon us.

I thought the actor, who played Christopher, Kaffe Keating, was very convincing. I read an article in the programme afterwards by the author of the original book, Mark Haddon, which I thought was really insightful. He talked about how Christopher describes himself as someone who has ‘Behavioural Problems’ because that is the term medical professionals have used to describe him. He says that labels like that tell us very little about the person who has been labeled and a lot about the people doing the labeling. In other words, often well-intentioned people are searching for the correct PC term to use to label a disabled person, instead of treating that person like an individual and trying to find out what they are like by just talking to them and getting to know them.

Curious Incident_Christopher train

Disabled people are all different and unique, just like any other group in society, so if someone asks whether Christopher is a correct representation of someone with autism, we shouldn’t really be asking that question. After all, he says, we wouldn’t ask if a character, who is a cellist, lesbian or archbishop, for example, are representative of those types of people, so why should we assume that people with a certain disability are representative of all people with that disability either?

The irony is that Christopher is labelled as having ‘Behavioural Problems’ when the adults around him, such as his father and mother, are dysfunctional and cause Christopher a lot of pain and suffering with their own behaviour. His father, for instance, played brilliantly by Nicholas Tennant, is unable to cope with Christopher or communicate well with him, so he goes from lying about his mother leaving him to try and save his feelings to lashing out at him from time to time through sheer frustration. Similarly, his mother left him to run off with the neighbour to London, partly because she is unable to cope with Christopher and deal with her emotions.

THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIME
London

_R1_5150.CR2

Christopher can talk to people who aren’t close to him, though, such as his teacher Siobhan, as well as his kindly old neighbour Mrs Alexander. He also seems to have a special bond with animals, which he doesn’t have with people as he lacks empathy for them and can only see things in a simple, logical way. He obviously loved his neighbour’s dog Wellington, who we see has been brutally murdered at the beginning of the play. He also loves his pet rat Toby, who he insists on taking with him on his terrifying trip to London to try and find his mother.

I don’t want to give any more of the plot away for anyone who still hasn’t read the book or seen the play. Needless to say I thought this production was brilliant. It was very well acted and watching it was a real delight because the visuals, special effects and stage set were just incredible. It was definitely worth the wait. If you haven’t seen it yet, I’d definitely recommend it!

Curious Incident blog Christopher

 

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.

Total communication in action at Windsor Castle

Windsor Castle header

In many ways I feel incredibly lucky and grateful to have recently had a cochlear implant. I can hear and communicate so much better than before. I can now have a conversation with my wife and family, which was a real struggle for me before. That means the world to me.

But having a cochlear implant is not the miracle cure to deafness that some people think it is. As a late-deafened adult I have a very good knowledge of sound from before and I can hear much better now, but I cannot differentiate between all the different complexities and layers of sound. It is a world apart from hearing natural sound and I still struggle to hear, especially when there is any background noise.

When I go to the cinema or the theatre, for instance, I still always go to a captioned or subtitled performance, as I would struggle to follow it without them. I also use the hearing loops now with my cochlear implant, which is a new experience for me, as when I wore a hearing aid, they didn’t work for me at all.

Last year I went on a BSL and lipspeaking guided tour of Clarence House, organised by the Royal Collection. At the time I was profoundly deaf and was undergoing the assessment for a cochlear implant. Although I wore a hearing aid I was very reliant on the sign-supported English and lipspeaking provided by the interpreters. It was a brilliant tour and I really enjoyed it, but I still had to ask my wife Joanna to fill in the gaps to follow it, as my lipreading and signing was still limited.

Yesterday I was really excited to go on another BSL and lipspeaking guided tour of St George’s Chapel at Windsor Castle. This was fully accessible to all deaf people. I have met Lesley, the lipspeaker, and Stephen, the BSL interpreter, before, at other events and they are both very passionate about full inclusion and access for deaf people. I was really pleased that they were providing the communication support.

Windsor Castle blog_Lesley + Stephen

It was a very small group there, and I was lucky that Lesley was able to personalise my communication needs. Her lipspeaking was very clear and natural to me, and she also used some signing, which I could follow very easily. For me, it is important to be able to use “every tool in the box” when it comes to effective communication and working out the information given to me. It’s like putting together all the pieces of a jigsaw puzzle and just seeing bits of the picture until finally you can see the whole picture when you put together all the pieces you need.

Everyone is different when it comes to communication needs and preferences but for me, using total communication through a combination of listening with my cochlear implant and being supported by an interpreter like Lesley lipspeaking and signing, is the best way for me to follow people and understand the whole picture.

For instance, when we were in St George’s Chapel, there was a young organist practising on the organ really close to us. At first my heart sank and I wanted to ask him if he would mind stopping for a while as I was really struggling to hear over his beautiful, but noisy, choir music. The guide apologised for the organ music and carried on telling his interesting stories about the Chapel and its history.

Windsor Castle blog_St George's Chapel outside

I was really lucky, though, that I could still follow what the guide was saying through Lesley’s clear lipspeaking and very visual language. Without her support, even with the cochlear implant, I would have struggled to follow anything and get the enjoyment that I did from his storytelling.

The tour of the grounds and St George’s Chapel was fascinating and I saw some beautiful, amazing things. I learned a lot about the history of the royal family, their connection to Windsor Castle and our own British heritage. I learned, for instance, about the origins of the Order of the Garter and its connection to Windsor Castle. King Edward II founded it in 1348 at Windsor Castle. By tradition, the Order takes its name from an occasion when King Edward picked up the Countess of Salisbury’s garter during a social ball, who had very embarrassedly dropped it, and he tried to make her feel better by tying it around his own leg.

The Order of the Garter is the most senior and the oldest British Orders of Chivalry and consists of the Sovereign and twenty-five Knights, who are made members because they have held public office, contributed in a particular way to public life, or served the Sovereign personally. The idea of rewarding chivalry and creating Knights was inspired by the legend of King Arthur and the Knights of the Round Table.

Windsor Castle blog_Queen Order of the Garter

St George’s Chapel is the spiritual home of the Order of the Garter, which is dedicated to the image and arms of St George, as the patron saint of England. Its motto is “Honi soit qui mal y pense” which means “Shame on him who thinks evil of it”. The Queen awards new members with their official garters at a special investiture ceremony held at Windsor Castle every year.

The Chapel is very old and incredibly beautiful. It has the widest Gothic arch in England and its stainglass windows are absolutely amazing. We walked into the choir stalls, which were stunning. I learned from the guide that the twenty-five stalls in the chapel all belong to the Knights and Ladies of the Garter. There have been some very famous Knights and Ladies in the past, such as Winston Churchill, Margaret Thatcher, John Major, Lord Mountbatten and the Kaiser.

Windsor Castle blog_St George's chapel

There are also 780 brass plates in the Chapel, each representing past and present Knights of the Garter. Each Knight has their own banner above their stall, with pictures representing them and their heraldry. They also have carvings of animal heads underneath the banners representing their heraldry. For instance, there were cricket balls and stumps on Lord Major’s banner, as he loves cricket, and a red stag’s head underneath representing his constituency of Huntingdon.

There are also ten British Kings buried in the chapel, including King Henry VIII and his third wife, Jane Seymour, and King Charles I. It was amazing to be standing next to Henry VIII’s plaque, with his remains buried underneath in the crypt. There is so much of our heritage steeped in this place, and I found it all fascinating, especially as the guides were so knowledgeable and entertaining. I also found out that the College of St. George had been founded at Windsor Castle in 1348, and today it still has 350 children boarding there from the age of three.

This was a great tour of Windsor Castle. I think that the Royal Collection provide some great tours of the Royal Palaces at a very reasonable price, which they make accessible to all deaf and hard of hearing people, taking all communication needs into account. We had a wonderful day and left with big smiles on our faces. For me, one of the best things about it was that everyone’s individual communication needs were met. I am really looking forward to their next event. I hope to see you there!

Link to Royal Collection website for future events with BSL interpreting and lipspeaking:

http://www.royalcollection.org.uk/whatson?type=2183

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?

??????????????

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

Churchill’s Chartwell and Rawson’s Legacy

As a late deafened adult, losing my hearing quite suddenly at the age of thirty-nine, I hadn’t learned how to lipread until then as there was no need. It was not something that had ever even crossed my mind.

It took me a long time to accept that I was deaf and even longer to begin to adapt to my new life as a deafened adult. Things that I had always taken for granted, like being able to follow and join in conversations in places like work, home, in the pub and noisy restaurants, became increasingly difficult and frustrating for me. As my hearing deteriorated I struggled to communicate and follow even basic conversations with my wife, family and friends.

Chartwell header

I started to go to lipreading classes about four years ago, shortly after my hearing suddenly dropped a lot. I enjoyed meeting other people at the classes, although I didn’t have much in common with them, as most of them were a lot older than me, in their sixties and seventies. I also found lipreading very tiring, as I struggled so hard to follow what people were saying. Over time, I gradually became better at it, although until I had my cochlear implant recently, I still struggled to communicate and understand everyday conversations.

Then just over a year ago, I heard about the NADP Rawson Bequest Events Programme, which organises regular lipspeaking events for deaf and hard of hearing people with a good understanding and knowledge of English, like myself. You do not have to be a member of the NADP to join an outing.

This programme has been donated to the NADP via a legacy bequest from the late Dr Annette Rawson. She qualified as a doctor and was one of the first female doctors to work at St Mary’s Hospital in Paddington. Then suddenly, at the age of thirty-two, she became profoundly deaf as a result of a rare debilitating autoimmune disease. She had to give up being a doctor as a result of her hearing loss and medical condition, which she struggled with for the rest of her life.

Chartwell_Lynne and Sara

Through her experience of becoming deafened as an adult Dr Rawson learned how important it was to have good lipspeaking support made available to deaf people with a good understanding of English. She wanted the arts and places of cultural or historical significance to be made more accessible to deaf people. When I heard about the Rawson Bequest Programme I immediately felt a personal affinity to Dr Rawson because she had a similar medical condition to my own, which caused my hearing loss.

I went on my first NADP lipspeaking event at Bletchley Park last year and I was immediately amazed at how well I could follow the talk with the support of the professional lipspeakers Sara Scanlon and Lynne Dubin. It really helped me that Sara used visual cues and signing as well as lipspeaking to help me follow what the guide was saying.

Last weekend I went on another lipspeaking event through the NADP Rawson Bequest Programme – a tour of Chartwell, the family home of Winston Churchill, in Kent. This estate is owned by the National Trust and although there was no official guided tour of the House, Sara and Lynne did an excellent job in providing the lipspeaking support throughout the tour of the House. Then one of the official guides also gave us a short talk afterwards with lipspeaking support about Winston Churchill’s painting in his art studio in the grounds.

Chartwell_Churchill speech

Chartwell is a very imposing country manor house with beautiful gardens and a huge estate set in the rolling hills of the Kent countryside, only about an hour’s drive from London. It was bought by Winston Churchill as his family home, but since his wife’s death in the 1970s, it has been bequeathed to the nation through the National Trust and a museum has been set up there.

I spent a brilliant day there with my wife and Jack Russell terrier Jake. I gained an amazing insight into the personal life of Winston Churchill and I learned a lot about some very important historical events in modern British and world history. He was friends with famous politicians, celebrities, artists and members of the aristocracy and Royal Family, many of whom visited him and regularly attended parties at Chartwell in the 1920s and 1930s, where he loved to entertain them.

Chartwell_Richard

Winston Churchill was British Prime Minister twice. He not only changed the course of world history for us all by playing a major role in helping us to win World War Two, but he was also a prolific painter and writer. He created over 500 paintings in his lifetime, and in the museum in the main house I saw the actual gold medal and manuscript of the original Nobel Prize for Literature for 1953, which was awarded to Winston Churchill for his life’s works, as he wrote forty-two books in seventy-three volumes during his lifetime.

His mother was American and because of this, Winston invented the idea of the “special relationship” between Britain and America, which we still have today. He was an MP for sixty-two years, being a great global statesman and diplomat. He was known for his rousing speeches, many of which he wrote in his study at Chartwell. He cultivated friendships with several American presidents, including President Roosevelt and John F.Kennedy.

Chartwell

His finest hour was when he served as Prime Minister during the Second World War. He was driven by his determination, sense of destiny and ‘British Bulldog’ spirit to win the war and always do what is right. His famous rousing World War II speeches inspired millions to fight for the cause for the sake of honour and duty. In one of his speeches in 1941 he said “Never give in – in nothing great or small, large or petty – never give in except to convictions of honour and good sense”.

Churchill painted throughout his life to provide him with relaxation from his great trials and tribulations. He painted his last painting of Marrakech, a place he loved, at the age of eighty-five. Although he was an amateur painter, several famous artists mentored him, including Walter Sickert and John Lavery. A few of his paintings were exhibited in the Royal Academy and one of them even won first prize.

Chartwell_Churchill painting

When Churchill died in 1965, he left the world a completely changed place and he also transformed the course of world history. I found this tour of Chartwell absolutely fascinating as I had no idea about the extent of his life’s works as an artist and writer, as well as being a great statesman and one of the most iconic political figures of the 20th Century.

I hope to go on more of these Rawson Bequest events in the future. I have thoroughly enjoyed them and find them really educational and insightful. Lynne and Sara have also provided excellent lipspeaking and communication support to the groups. I would really like to thank them for making it so accessible to us.

SIR WINSTON CHURCHILL, KG, DL, OM, CH, PC, MP (1874) AND CLEMENTINE OGILVY HOZIER, LADY CHURCHILL (1885-1977) IN THE DINING ROOM AT CHARTWELL, 1932, by Sir William Nicholson (1872-1949) at Chartwell, Kent

 

Richard’s Cochlear Implant: The Journey Has Only Just Begun

Image

I was feeling really anxious the night before my husband Richard’s cochlear implant surgery a few days ago. We had spent many months waiting for the operation date and many more talking and thinking about it. I really hoped more than anything that the operation would be a success and that Richard would soon be on the path to better hearing.

Yet I couldn’t shake off my constant nagging worries. “What if the operation goes wrong?” I thought. “What if there are complications?” “What if after going through all this it doesn’t work when they finally switch it on and he’s left permanently profoundly deaf? How will we cope?”

I know there are risks with any operation, and I have also met a few people who have had CIs where it hasn’t worked and they are left profoundly deaf permanently. But I have also met many more people, who have had very successful implants, and their lives have been transformed. I was trying hard to focus on the positives. How wonderful it would be if Richard could use the phone again, not struggle to communicate with people on a daily basis and not feel uncomfortable in any crowded or noisy environment with big groups of people.

Richard, on the other hand, seemed unnaturally calm. I couldn’t understand why he wasn’t feeling more anxious. Maybe he was trying hard to hide it or maybe he had spent so long thinking about it that by the time it had arrived, he had accepted it was the right choice and felt calm about it. Either way I was impressed by his calmness, which reassured me too.

I didn’t sleep very well that night at all. When my alarm clock went off at 5am the next day, I had been awake for a while. As we travelled in the cab to the hospital, it was already light outside but there was hardly any traffic on the roads or people on the streets. We were both really tired but Richard looked incredibly calm and relaxed.

At the hospital we saw the anaesthetist in the ward. She looked at Richard’s medical file with the doctor’s letters explaining his complex medical history and details of his drug treatment. She then looked really concerned. She said that he might not be able to have his surgery at the hospital that day because of the additional risk of potential complications due to his underlying medical condition. She was concerned about how he would cope under general anaesthetic. They didn’t have the back-up equipment at that hospital to deal with any emergency, so she said that they might have to postpone the operation to another date in another hospital, which did have the back-up equipment.

Richard couldn’t really follow what she was saying but he understood from her negative body language that the operation wasn’t going to happen that day. He looked absolutely gutted and suddenly seemed really stressed. He told her that he’d be devastated if it didn’t happen that day. Richard’s consultants at other hospitals had been discussing the possibility of Richard having the CI surgery at another hospital because of this for months, but they told us that it had all been resolved, his medical condition was stable and that he would be fine under the general anaesthetic. The problem was that the letter to explain all of this was not in his medical file due to a clerical error and miscommunication between different hospitals.

Thankfully the situation was resolved fairly quickly when Mr Shiada appeared on the scene and saved the day. He calmly reassured us all that he had a copy of the letter in question. After the anaesthetist had made a few phone calls to Richard’s consultants at St Mary’s and Whipps Cross Hospitals to double-check, he was given the go-ahead for the operation. He was then assigned his own room in the ward and a dedicated nurse to look after him. I was actually really pleased that the anaesthetist had been so thorough in checking all this and doing her job so thoroughly, as I knew there was a lot at stake if anything went wrong.

Eventually, at about midday, Richard was brought into the operating theatre for his surgery, which would last about three hours. After about half an hour waiting in Richard’s room I felt really on edge and couldn’t concentrate, now more worried than ever about the risk of complications during surgery. Three hours seemed like such a long time to have to wait on my own.

I decided to go for a walk to try and take my mind off it, so I ended up walking into nearby King’s Cross Station, where I wandered into some of the small shops there to try a bit of retail therapy. I ended up buying Richard a small box of chocolates as a present. I smiled as I thought about how many times I had told him off for eating chocolate, and how much he loved eating it. Now it didn’t seem to matter at all.

After a while I wandered back to the hospital. Shortly after that Ian, Richard’s step-brother, arrived in the ward to pay him a lovely surprise visit and we waited in his room together. Suddenly, the young student nurse came to tell Ian and I that she had been in Richard’s operation and that it had gone really well. It was the first operation she had been involved in and she was really excited to tell us. She explained how impressed she’d been with Mr Shaida’s calm, confident manner as he was operating. She was really happy to have been a part of it. I was so touched that she’d come to tell us this personally.

The matron then came in and told us that Richard had just come round and we could go and see him in the recovery room. Ian and I went down into the room and saw Richard lying there, all wired up and attached to a monitor. He looked really tired but he had a massive smile on his face. He had a big bandage wrapped round his head. Immediately, he wanted us to take photos of him, so we took photos of ourselves with Richard, all three of us with massive smiles on our faces now.

I felt immense relief that it was all over, like a huge weight had just been lifted from my shoulders. Seeing Richard’s smiling face made me feel really happy and so proud of him. The anaesthetist came over to say hello to us, and she ended up being included in the photos. She recognised Ian as he is an ENT surgeon and they used to work together eight years ago. She looked very relieved too. I thought that she, Mr Shaida, the theatre team and the nurses at that NHS hospital had all done an incredible job looking after Richard. I find it amazing that they do that for all their patients on a daily basis.

That evening I sat by Richard’s bed while he slept, as he was still tired and dizzy from the anaesthetic. He was missing the England versus Uruguay World Cup match showing on the TV in his room, but that was probably for the best, given their disastrous performance.

I felt physically and emotionally drained after such a long day, but incredibly relieved. As I left Richard in the hospital overnight I went home and felt shattered. I know that Richard’s cochlear implant journey has only just begun as he has only just started his recovery. But I am now hopeful that it will all be worth it in the end. I will keep you posted.

By Joanna Turner

 

 

The NADP Conference: A Celebration of the Past, Present and Future of Communication

Image

A few weekends ago I went to the National Association of Deafened People (NADP)’s conference and AGM in Southampton. I was really looking forward to it for two reasons: firstly because I had been nominated to become a Trustee of the NADP, and they were going to announce the new Trustees at the AGM there, and secondly I was looking forward to meeting other deafened people for the first time, who I had chatted to on some deaf-related Facebook forums, but never actually met in person before. I have also never been a Trustee of a charity before, so I was thrilled at the prospect and looking forward to working on deaf-related issues, which I feel really passionate about.

I woke up very early on the Saturday morning and drove to Southampton with my wife Joanna. We arrived right on time at Southampton Solent University Conference Centre, where the conference was being held, and after a quick coffee and a brief chat with a few friendly faces, we headed straight into the main auditorium for the conference. Once inside, I immediately noticed that the access in terms of communication support was excellent. There were two BSL interpreters, a lipspeaker and live speech-to-text reporting (STTR) of the full day’s proceedings, which was being relayed onto a big screen behind the speakers. I thought that this was total communication support done really well to provide great access and inclusion for everyone.

Image

The conference was celebrating the NADP’s 30th anniversary and also thirty years of Ross Trotter as Chairman, who is standing down this year and being replaced by Lidia Best. The theme of the conference was how communication has changed in the thirty years of the NADP’s existence.

The first presentation, which was given by Anna Duncan and Sara Flynn from the Auditory Implant Service at Southampton University, was fascinating. They talked about the past, present and future of cochlear implants, and also spoke about the experiences of the hundreds of cochlear implant recipients in Southampton.

I am particularly interested from a personal point of view because I am currently waiting to receive a cochlear implant (CI) myself, so I found what they talked about useful and informative. CIs have come a long way since Graham Carrick received the world’s first commercial implant in 1982. The implant totally transformed his life and he said that he “wouldn’t be where he is today without it”.

In 2014 there are approximately 324,000 cochlear implant recipients worldwide. In Southampton, by March 2014 they had 558 adult CI users (with a further 52 undergoing assessment) and 338 child users (with a further 16 undergoing assessment). The youngest recipient was six months and the oldest was 91 years old. After explaining what a CI is and how it works, they then went on to talk about the main issues and challenges for cochlear implantation today in the UK and abroad and what the future holds for cochlear implants in terms of development of both the technology and the sound quality, new research areas and official requirements regarding a person’s suitability for a cochlear implant.

Image

There are strict NICE guidelines regarding who is suitable for a cochlear implant and currently they recommend bilateral implants for children and unilateral for adults (except for those with a visual impairment). While the average BKB score (a hearing and speech recognition test) pre-implant (with hearing aids) was only 9%, post-implant it is 70%, so there is an average improvement in the score of 61%. The outcomes are variable depending on the recipient’s hearing history.

It’s interesting that children are entitled to two implants on the NHS under the current guidelines, but most adults only one, and this is something they talked about in more detail. Having two implants helps recipients tell where the sound is coming from as they have sound from both ears. Also, listening in noisy environments is easier. Research is currently being carried out on the benefits of having two implants for adults, as there are obviously cost implications, in addition to looking at the benefits in terms of the recipient’s improved quality of life.

Other areas of research currently being carried out are bimodal stimulation (where someone has a CI in one ear and a hearing aid in the other), research on listening to music with a CI and how the quality of the sound can be improved. For me, when I first lost my hearing, not being able to listen to music, which I absolutely love, was one of the things I really missed most, and I still do.

Further developments include the user having an accessory to make the CI waterproof, so that they could wear them while swimming. For the future, they are looking at developing CIs, which would preserve residual hearing via the development of surgical techniques using thinner electrode arrays, as currently, all residual hearing is killed off during the implantation.

Image

The other really fascinating areas of future research they are looking at is stem cell technology to regenerate auditory neurons and cochlear hair cells, and also the use of drugs within the cochlea at or around the implantation. Scientists think that drugs may improve outcomes with CIs and prevent further hair cell loss in the inner ear, but the problem is that they don’t know how long these effects will last. I think the next thirty years of cochlear implants are going to see some really exciting developments.

After lunch we had the NADP AGM. Ross Trotter was presented with a carriage clock for his many years service chairing the NADP and we all thanked and applauded him. Then he handed over responsibility to the new Chairman, Lidia Best, who gave a short speech. All the new Trustees, including myself, were introduced to the audience and welcomed to the NADP Committee. It was a really proud moment for me.

Image

Later that evening after the day had finished, a group of us had a meal together at the ‘Premier Inn’ where we were staying the night. It was a great, relaxed atmosphere where everyone felt comfortable and relaxed. It was really good to meet Tina Lannin there for the first time, a fellow Trustee, who had just arrived from London where she had been at City Lit’s ‘Deaf Day’, and I also had a good chat to Sally Clark, who is also now on the Committee. The best part for me was that as a group of deafened, hard of hearing and hearing people, we all got on with each other really well and chatted away happily, no matter what each other’s communication needs were.

Whereas I used a combination of communication tactics such as lipreading, talking, SSE and a bit of signing, some people didn’t know BSL at all whereas one deaf person I spoke to relied completely on BSL to communicate. I was really relieved that people were happy to write notes down for me when I couldn’t follow what they were saying, particularly when I was struggling to communicate in BSL. I was also glad to see that people in the group were writing things down for CJ on his ‘Boogie Board’ tablet, which I’d never seen before. I thought that was a great idea to help support communication.

I went to bed late that night, but happy after such an eventful day. It was lovely to meet all these new people and catch up with old friends too. I am thrilled to have been voted as a Trustee of the NADP and I am really looking forward to working with the other Committee members to campaign for better access to everyday services and employment for deafened people. I feel really passionate about trying to break down barriers to equality and inclusion in our society and also working with younger people on the Committee, who hopefully will bring in fresh ideas and a positive attitude towards change and breaking down divisions. I am excited about the future of the NADP and looking forward to some great things ahead.

Image