It’s been a while since I last blogged. It’s been a difficult last few weeks, to be honest, and I didn’t feel able to write about it, but I’ve now decided that I want to blog again and tell you what’s been happening to me since then.
A couple of weeks ago my hearing dropped suddenly, virtually overnight. I woke up and everything sounded muffled and distant. I couldn’t hear my wife’s voice and I could hardly hear my own voice either. I knew that things weren’t right and my hearing was dropping dramatically. It felt just like it did before when I first lost a lot of my hearing three years ago.
I managed to get an urgent appointment to have my hearing checked out at the ENT hospital on Gray’s Inn Road at King’s Cross the next day. To cut a long story short, I ended up on high dosages of steroids in the hope that they would restore some of my hearing. However, a few more hospital trips later and I am now left with hardly any hearing at all.
This has been really difficult to come to terms with, even though it has not been as much of a shock as it was three years ago. I have a much more developed support network now than I did then. But even still, it feels just as hard. I now feel excluded from so many things that I used to take for granted when I was hearing. I am finding it hard to communicate with other people when I can’t hear what they are saying and I can’t join in their conversations. I now can’t use the phone at all, and everything just sounds really muffled and distant with my hearing aid.
I feel like I have now entered a new stage in my deaf journey, which is a very lonely place to be. I know that anyone with a hearing loss will identify with this sense of isolation, particularly as deafness is such an unseen disability.
Yet I am so lucky that I have the tremendous support from my wife, family and close friends, who are really helping me through this. I use a mixture of communication tactics with them, like lip-reading, looking for visual clues, some basic sign language and fingerspelling as well as talking, and asking them to write down what they are saying as a last resort. It’s all incredibly tiring and frustrating, particularly as I now have to concentrate really hard to rely on lip-reading much more, but we manage to just about get by.
These communication barriers make me even more aware of just how important good access to everyday things is to deaf people. I come across new obstacles and barriers everyday, which I previously was completely unaware of when I was hearing. For instance, the other day I found out that my local Blockbusters DVD shop is closing down soon. I actually feel really sad about this because I now won’t be able to rent DVDs anymore, because DVDs rented online from companies such as Love Film don’t have subtitles, so I can’t watch them anymore unless they decide to introduce subtitling.
Even when I was at the ENT hospital in Gray’s Inn Road I had major communication barriers. While waiting in the outpatients’ waiting room, the VDU screen wasn’t working, so they were calling patients’ names out for their appointments. I would have had real problems with this if my sister hadn’t been there with me, as I would not have heard them calling my name out when it was my turn and I would have missed my appointment. I have learned from experience that whenever I have a hospital appointment, I have to take my wife or a family member with me to help me as few hospital staff members have any deaf awareness. This makes me feel disempowered and too dependent on other people, which I shouldn’t be at my age.
I now can’t attend most meetings or events anymore unless they are made accessible to me via speech-to-text reporting (STTR), which is usually not available as there is no funding for it. I have been told that a “reasonable adjustment” would be made in meetings via the provision of a working hearing loop, but this is not “reasonable” for me at all as a hearing loop is now useless to me, so I wouldn’t be able to follow the meetings at all.
But thankfully it’s not all bad news and lack of inclusion and equality for me. Carol, a wonderful lady who I volunteer for at Action on Hearing Loss’s ‘Hear to Meet’ service in Barking and Dagenham, has really supported and encouraged me, so I’d really like to thank her for that. She has asked someone to help support me in meetings with lip-reading, signing and communication tactics. It is a learning curve but it is working for me. It is total communication support, which is a big help to me and I’m also improving my sign language. It’s great to have support like this from people who genuinely want to help me.
Now that my hearing loss has become really profound, it has got me interested in improving my sign language. I studied basic BSL to Level 1, but I now find that I’m increasingly using it more, so that I don’t have to totally rely on struggling to lip-read people. I’m learning with a brilliant BSL teacher called Joe Collins, who has helped improve my confidence through signing and he is an amazingly patient teacher. I feel like it is such an achievement to actually have a conversation with him in BSL.
I am also increasingly using some basic sign language with my wife Joanna at home, and she is benefiting too by learning from me. I feel that using some basic BSL enhances my ability to manage my wellbeing as my hearing has deteriorated. I think that I am trying to compensate for my hearing loss by improving my visual language. I’ve now signed up for a BSL Level 2 course, which I am starting in January. I only wish that these BSL courses were cheaper and more affordable for people like me.
It has also really made me appreciate the importance of captioning and remote speech to text reporting (STTR), as they are accessible and universal to people with all levels of hearing loss, unlike hearing loops, which are fine for hard of hearing people, but not if you are severely or profoundly deaf.
Last week, for instance, I went with my wife to the British Library to see a talk by Lucy Inglis, an historian, journalist and writer. Her talk was called ‘Georgian Londoners: The Making of a Modern City’. It had live speech-to-text reporting by STAGETEXT, and it was related to the new exhibition currently on at the British Library, called ‘Georgians Revealed’. This was to celebrate the 300th anniversary of the accession of George I to the throne.
I really enjoyed her talk in the auditorium and it was great not to have to struggle to lip-read her from afar. She gave some fascinating insights into a wide variety of aspects of Georgian London life. It was great that I could follow what she was saying from the live speech-to-text reporting, although she spoke really quickly and covered so many different topics.
I enjoyed her talk so much as I learned so much and I felt back to my old self again. Last week we followed it up by going to the actual exhibition at the British Library itself. That too was fascinating and I’d recommend anyone to go and see it. I really felt like I’d learned something and could relate it to how we live our lives today. The British Library, together with STAGETEXT, does these accessible talks so well and the exhibitions are great too.
I now want to focus on enjoying doing all the things I love doing, such as going to captioned theatre performances and accessible talks with my wife and friends, volunteering in my local community, walking my dog Jake and trying to help increase deaf awareness.
I’m just trying to enjoy life as much as possible, taking each day as it comes and trying to focus on the positives, rather than the negatives. I’m also trying not to worry about the future, as I don’t know what it will bring. My new motto to live my life is ‘Carpe Diem’ and I intend to enjoy every moment as much as I can. I’ve recently had a new tattoo done with those words tattooed on my arm, although my wife wasn’t quite as thrilled about it when she saw it as I was!