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.