The story behind darkness and light

It took me two years after I was deafened to reach a stage where I felt comfortable enough to write about my experience of going deaf. Why did it take me so long? I was seriously ill for more than a year due to my underlying illness. I was going in and out of hospitals having scans and tests. I also had an operation to have a stent put in for an aneurysm on one of my arteries, and I was having regular drug treatment to try and get my disease under control. When my condition had been stabilised, I wanted to forget about the whole thing, but it was impossible for me to move on. My life had been turned upside down. I was trying to adjust to the massive impact that sudden deafness had on my life, and that of my wife.

At the same time, I was trying to make sense of it all and I just wanted back the life that I had had before, so I now know that that I was in total denial. I wondered why this had happened to me, and why I couldn’t hear anymore. It just didn’t seem fair somehow and my future now seemed very dark and uncertain. I felt a shell of the person that I used to be. I hid myself away and I didn’t want to socialise or interact with anyone, even my own family. I had had my hearing for 40 years of my life, which I had always taken for granted, so when I lost it, it was incredibly difficult for me to come to terms with. This affected the relationship with my wife and family because they could see that I had become negative, snappy and withdrawn. I would pretend everything was fine, but I was kidding not only myself, but them too. I can remember there was a calendar in the kitchen and when I went to bed each night, I would cross the day off and think to myself ‘thank goodness that’s another day over with’.

The big turning point was when I went on a rehabilitation course organised by Hearing Link. My sister originally found out about this course and Hearing Link soon after I was deafened, but at the time I was vey angry about what had happened to me and I was also in denial. The last thing I wanted to do was talk about my deafness and how I felt about it with a group of complete strangers. I thought it would be a complete waste of time and not for me. But I couldn’t find a way to move on and make sense of the whole situation, so slowly I became more interested in going on the course. I decided that I would go on the course as I felt by that point that it was nothing ventured, nothing gained. My confidence was very low at that point and I couldn’t see a way of getting my old self back. I suppose I also felt that it was last-chance saloon for me

In July last year, I finally got a place on Hearing Link’s rehabilitation programme in Nottingham. On the first day, I was still very skeptical about the whole thing. Then a volunteer called Jan Sanderson who had a cochlear implant talked about her own experience of hearing loss. Immediately, I could relate to what she said, and suddenly I realised I was not alone in the way I thought about losing my hearing, and I suddenly didn’t feel quite as isolated. Also, as the week progressed, I met some amazing people who had all gone through similar experiences, and I suddenly saw the dark clouds that had been hanging over me for so long were slowly disappearing. My thoughts were suddenly a lot clearer and I felt a lot more confident and empowered.

I remember travelling back down to London that Friday. It was when the Olympics were on and there was a real feel-good factor around the place. I felt like I was really buzzing after that course and I remember seeing my wife again and my step-dad Brian, who was going to the Olympics the next day, when I got home. The weather was beautiful and we sat in the garden having a BBQ with a glass of wine. I felt inspired with a renewed sense of confidence about myself. For the first time in years, I felt like my old self. I turned to my wife and told her that I want to write my experience of the journey that I have been on down.



My journey into darkness and light

Before my illness I was a pretty average bloke. I had a job in telecommunication sales, had a good life with my wife Joanna and owned my own house. I enjoyed going to the pub on a Friday night and watching Manchester City – all pretty normal stuff.

My journey started on a Monday morning in January 2010. Joanna had left for work early and I was left on my own. I turned on the bedroom TV and breakfast news was on. It was a lady presenter and her voice sounded weird, like Mickey Mouse. I thought that the TV was broken. This was all I needed for a Monday morning! I went downstairs, turned on the main TV and the sound was the same. Half-asleep, I thought ‘Oh no, two TVs broken in one day. Typical! Not a good start to the week’. I spoke to myself aloud and I realised that my own voice didn’t sound the same. I started to panic. I phoned my wife and her voice sounded like Mickey Mouse too. I really started to panic now. I didn’t know what to do. The room was spinning, I felt like I wanted to be sick and I found it hard to keep my balance when I walked.  My wife told me to call an ambulance immediately.

I was admitted to the Royal London hospital and I was kept in for a couple of weeks. The doctors put me on a series of high dosage steroid drips as the inflammation in my blood was sky-high. I remember being in the hospital bed unable to hear, feeling very scared and incredibly isolated. I could see doctors and family members moving their lips, but I couldn’t understand what they were saying. This was frustrating for me, as I didn’t know what was happening. At this point, my main form of communication was paper and pen and for someone who could hear well before this, it was incredibly scary.

A few months later, I was diagnosed with a rare connective tissue disease called relapsing polychondritis, which had affected my inner ears, causing the deafness. I thought I had a certain amount of hearing left and the condition was stable at that point. After a couple of weeks I was discharged back home as they couldn’t do anything further for me to restore my hearing.

After I got home, my balance was very bad. I couldn’t drive or walk in a straight line and I felt that I didn’t want to go out as I walked as if I were drunk. My hearing was not very good but I could still hear my own voice, which was a comfort. I saw an audiologist who said that my right ear was dead but that the hearing in my left ear would get a good result with the right hearing aid and correct fitted ear mould. At that point, I thought that my condition was stable, my hearing loss would be manageable and that life wouldn’t be too bad.

About a week after that, I woke up one morning and realised I could hardly hear my own voice at all. I felt complete panic and I kept talking to myself out loud all the time, sometimes shouting loudly hoping that I could hear my own voice. I kept shouting ‘1,2,1,2,1,2’ for hours in the day and even on waking in the middle of the night, repeatedly testing to see if my hearing had come back. I felt like all my hopes had been destroyed.

I was admitted to Whipps Cross Hospital where I was told that I had had another episode of my condition and I was once again put on high dosage intravenous steroid drips, in the hope that it could restore some of my hearing. After a couple of days, my consultant told me there was nothing further that they could do and that the treatment would not help my hearing.

I went back home and I felt really depressed. I felt that something had died inside me. The hearing world that I had been part of all my life now felt like history and I thought I was going to have to live in a world of silence and tinnitus, which sounded like a constant ringing tone in my ears. All I wanted to do was to lie in bed and sleep, hoping that I could wake up and that the whole thing had just been a nightmare. I could no longer have a proper conversation with Joanna as I could hardly hear her voice now. I couldn’t hear music anymore and I was scared to leave the house because I couldn’t hear the traffic on the roads and normal everyday conversations.

I also found out that I would have to undergo a series of tests and investigations for a week as an in-patient at the rheumatology department at Hammersmith Hospital. They would try and establish if my disease had done any more damage to my body and to see if they could work out a way of managing my relapsing polychondritis. I felt incredibly anxious as I had hoped it had just affected my ears.

On my last day at Hammersmith Hospital, a patient in the next bed to me who was very ill with cancer gave me a book. He was concerned about me as he had heard me crying at night. He had written a personal message in the front of the book. It said that it had helped him to make sense of a bad situation and he hoped it could help me in a similar way too.

After returning from the hospital, I received the test results. The disease had affected some of my arteries and I had an aneurysm, which would require an operation at a later date. I was also put on a new drug, which had to be administered every eight weeks intravenously, that hopefully, would put the disease into remission.  Finally, there was a name I could put to what was happening to me, a possible treatment and hopefully an end to this dark period of my life.

I read the book and it started to make sense. Its basic message can be summed up in this inspiring quote by Eleanor Roosevelt: ‘Yesterday is history, tomorrow is a mystery, today is a gift, that’s why it’s called the present’. I realised I could do nothing about my past, the future was unknown, and that I should appreciate just living in the present moment as much as I could. I decided to do something about it: to get out of bed and do something more positive. I realised you only have one life, so I really needed to live it to the full and appreciate every single moment.

I started to use my hearing aid more. This gave me the confidence to use it outside and walk more, which improved my balance. Joanna and I also decided to get a dog from a rescue centre to provide me with some company in the day, but also because we felt that walking a dog everyday would be good for me, both physically and mentally. We acquired a feisty Jack Russell terrier called Jake. I had to walk Jake twice a day, so I found that through this my balance was improving dramatically, and also meeting people in the local park while walking Jake helped improve my confidence. It felt good getting out of the house more and it helped me feel calmer inside. I suddenly had a purpose as I had to walk the dog everyday. I also attended vestibular rehab, which, combined with regular walking and swimming, improved my balance considerably, so that I no longer walked as if I were drunk.

Joanna contacted our local Sensory Services Centre in Redbridge, which is run by the charity Action on Hearing Loss to see if they could help improve my communication. The people there were brilliant and they gave me some great practical advice and emotional support. I started to attend a weekly lip-reading class there. It was good to be in a class meeting new people and this helped me feel less isolated. When combined with my hearing aid, I could follow people much better now. I started to learn new communication skills. I was also taught fingerspelling on the lipreading course, which got me interested in learning British Sign Language (BSL).

By now, my confidence had improved to such an extent that I wanted to do some voluntary work to help other people who may have had similar experiences of hearing loss to me. I began to volunteer on the ‘Hear to Help’ campaign run by Action on Hearing Loss in Redbridge, which provides basic hearing aid support to local hearing aid users. This work improved my confidence further and I found it really rewarding to help people in my local community. It also gave me a sense of purpose again, which helped me to rebuild my life.

 I had come a long way from my dark days, but I would still avoid big social occasions as I was very conscious of my hearing loss around people in noisy environments. This meant that I had made lots of lame excuses to avoid going to family and friends’ weddings and big social occasions. Also what I missed the most was going for pre-match drinks with my friends before the Manchester City football matches. This year, thanks to the charity Hearing Link, I finally got a place on their intensive rehabilitation programme. This to me was like the final piece in the jigsaw puzzle to getting my life back to how it used to be. On the course, I met some amazing people who all had similar stores to my own of living with acquired hearing loss. I suddenly had an ‘eureka moment’ where I felt empowered and confident enough to talk about my experience of hearing loss and to try and make a difference to the lives of others by raising deaf awareness and helping people with acquired hearing loss.

I now feel much more focused and confident. For the first time since I was deafened, I went to watch my beloved Manchester City win with friends in May last year and the pre-match drinks were fun too! I now go to the pub for a drink (which Joanna is not too thrilled about!) and I can face going to family gatherings and big social occasions. Thankfully, with the aid of my new drug treatment, my disease has now remained in remission for more than two years. For the first time in my life, I really know what I want to do, which is to work for a charity, which supports deaf/deafened/hard of hearing people. For the last few months, I have also given lots of public talks to different groups of people about my experience, to raise deaf awareness and highlight the emotional impact of sudden acquired hearing loss.

I don’t know what the future will hold for me. All I know is that I can face whatever lies ahead of me with renewed optimism and inner strength. I also know that I owe a great debt to my wife, family and friends, who have shown me a huge amount of support and love throughout this difficult period of my life. I feel that my journey from a very dark time has now moved into the light.


Amina’s amazing art

Last month I was asked by audiologists at Charing Cross Hospital to do a healthcare work experience. This was a Q&A session with GCSE students who are interested in pursuing a career as a healthcare professional.

On the day, I met Amina Ansari, a British Asian artist, who also participated in the Q&A session. She has an acquired hearing loss, which she has had from childhood. After the session, I had a good chat with this talented young lady and I found out that she painted the Queen last year! In fact, her work has been placed in Buckingham Palace and she has received recognition of her work by her Majesty. I also found out that she is an artist who likes to bridge the gap between East and West in art.

After I got home, I looked at Amina’s website and I was amazed at how well Amina captured her subjects in her portraits and what I found most inspiring was that her hearing loss had not deterred her from carrying out her life’s purpose, which is to paint beautiful pictures. She told me that somewhere along the line eyesight can be a gift when losing your hearing, and she also said that she loves to bring out colour in her subjects. I noticed her brilliant eye for detail in her work and also the rich and vibrant colours that she uses on her canvases, such as brilliant reds, oranges and yellows. These seem to blend in so well with her subjects and also seem to somehow capture the richness and colour of her beloved Pakistan in a way that I find surprising and refreshing.

My wife and I are delighted that Amina’s next subject will be our feisty Jack Russell Terrier, Jake. This will be the first time she has ever painted a dog. We are honoured that our humble terrier is being painted by such an inspiring and talented young artist.

If anyone is interested in finding out more about Amina’s work, here is her website:

the QueenAmina

Tube travel trip

Today I went on a tube travel group organised by RAD (Royal Association for the Deaf). The purpose of this trip was to travel on the tube as a group and make our way to the Tower of London where we would have a tour in BSL when we arrived.

The idea is to help people become more confident using the tube network. This is something I could relate to, as since I lost my hearing, I used to find travelling on public transport a real challenge. This is because when you can’t hear, you lose a lot of confidence and things that were once simple, such as asking people for directions, suddenly became a real barrier.

I thought that this was a brilliant event and could see the people in the group being really engaged and enjoying themselves. We were helping one another get around and from the feedback at the end, I think other people would now be more confident getting around on public transport.  From my own perspective, I was a bit worried that my signing wouldn’t be good enough to communicate well with the others in the group. I am currently learning BSL Level 2, but I usually don’t get to practise it as much as I should. This event was an eye-opener for me in that regard. People were very friendly with me and I felt that I could communicate with them (despite my limited BSL). 

The tour of the Tower of London given by an amazing BSL interpreter called Laurence was brilliant. He explained things in such a visual way that I realised what an amazingly rich and visual language BSL really is. For example, when he was telling us about how people were tortured in Tudor times, his explanations in BSL were very graphic and captivating.  I also really understood what he was saying to us, which I was really pleased about. 

After this tour, I now feel that I really want to learn BSL more and practise more often in this kind of informal and friendly environment. As the day progressed, I could feel my receptive skills getting better.

The highlight of the day for me was when the tour finished and I saw the group all being very enthusiastic about the day with big smiles on their faces. I would like to thank Natalie, Julie and Aiysha for organising a great day out. I am really looking forward to the next event!


Making cinema more accessible

Today my friend and I went to test new personal subtitling technology in a Central London cinema, along with many other deaf and hard of hearing people. One of the big things I have missed since becoming deafened is the ability to just go to my local multiplex cinema with my wife and make a choice of which film to watch there and then. I have really missed going to the cinema, as the choice of which films and show times I can now watch is extremely limited and normally not at suitable times. This means that until recently I had only watched one subtitled film in the last three years.

Today’s experience was extremely positive. This new technology will mean that in the future, we will be able to watch any film at any time. This will give people a better choice of both film and show time, resulting in more people attending the cinema. There is still much more work to be done on this new technology in this country and it is still not available in cinemas nationwide. Hopefully, in the not too distant future, I will be able to enjoy a nice meal with my wife on a Friday evening, followed by a good film at my local multiplex.


Hadrian’s Wall Training Walk

Joanna and I are walking along Hadrian’s Wall in Northumberland at the end of May to raise funds for a great charity, Hearing Link, which provides emotional support and practical assistance to deafened adults and their families. Today we did a 5-mile training walk with our dog Jake in Epping Forest, near where we live.

We really enjoyed walking through the forest, despite the pouring rain. In fact, we got completely soaked! It was nice to go into the local pub afterwards and enjoy a pint while we dried off.

If you’d like to support us on our walk and donate to this really worthwhile cause, we’d both appreciate it a lot. The easiest way is donating directly via our justgiving page below. Thanks.