The Sign of True Friendship

Sometimes I thoroughly dislike being deaf.* There, I’ve admitted it. I don’t like to. Give me a couple of minutes and I’ll thoroughly dislike myself for 1. Thoroughly disliking being deaf and 2. Admitting it.

• People have bigger things to put up with than I do.

• Not being able to hear isn’t life limiting, on a basic level anyway.

• And the biggie: there are some GREAT advantages to being deaf and I will wax lyrical about these in future Substacks.

• And the even bigger biggie: I have amazing hearing aids. The tech blows my mind and keeps me firmly rooted in the hearing world in which I grew up. I am very lucky. It isn’t available to everyone.

I had a mild loss probably from birth but as a child, I thought everyone was making a fuss because I was fine. But I kept that to myself because my hearing loss meant an annual trip into Newcastle on the train with my mum, fortuitously around Christmas time. I’m one of four. I adore my sisters and LOVE being from a big family, but you know, you don’t get much time on your own with your mum as a child from a big family so yeah, I loved that day: just me and her.

After my ENT appointment, it was a tradition to marvel at Fenwick’s window which had those enormous, all singing, all dancing displays that the large department stores would pull out of the bag every Christmas. It was all cogs and pullies, moving fairgrounds, skating elves and tiny pixies tumbling through snow in the shop windows. I never wanted to be a princess as a child, but I’d have swapped places with one of those mischievous pixies in a heartbeat.

Our final ENT day tradition was to go to a café for a glass of orange. Big family in the Seventies? The closest I got to a glass of orange in a café at any other time of the year was in an Eden Blyton. I always had orange juice. My mum always had tea.

One pivotal year, I remember asking if I could have a cup of tea instead.  

‘Of course!’ my mum said, adding, ‘Oh, you are really growing up.’
I was horrified.

I was almost not a child? Was this the beginning of the end of our annual trips together into Newcastle? Were the Fenwick’s window displays to be consigned to the scrapbook of a childhood I’d recently departed? So I did what any self-preserving eight/nine year old would do and quickly changed my order back to orange juice, and all was well again.

The mild hearing loss became more of an issue in lecture theatres and meeting rooms of my twenties but after a test revealed I had the hearing age of a 52 year old – horrifying when you’re 25 – ‘but not to worry, 52 year olds tend to hear very well indeed,’ the consultant said. ‘It’s if they make it to their 60s that the decline really starts.’ Yes, he actually said that! Welcome to the bedside manner of the early 90s – I decided to just crack on. I’d pretend there was no issue, cover it up, get very good at nodding effusively in the right places and offering grave shakes of the head in others.

Once into my thirties however, Ménière's disease struck, many times, bringing with it tinnitus and further hearing loss. Cancer treatment seemed to deliver another blow although we’re not really sure why. Some forms of chemo can cause hearing loss and increased tinnitus. Not mine, though. So that’s a bit of a mystery, although one wise consultant said that we don’t understand everything by any means and chemo loves our weaknesses, and it’s fair to say that my ears are my weakness. Chemo or otherwise, my audiogram took another dive deeper into profound deafness.

But this is where the story is much more hopeful, because by now the complicated new tech to deal with complicated hearing loss was available, and finally I was able to benefit from hearing aids.

I have been incredibly lucky because my hearing continues to deteriorate but it seems to manage to nudge in just behind the latest tech. Put another way: the tech seems to manage to keep one step ahead of the deterioration. Indeed, this 21^st century technology has averted me from becoming the stereotype little old lady ignored in the corner whom people occasionally shout at when they remember she’s there.

But it isn’t fool proof. And I do struggle. And Christmas party season with its big family groups and crowds which I love with all my heart, but my hearing doesn’t, is always a big test and one which me and my aids often fail. I admit, it makes me sad.

I filled out a detailed questionnaire** for the RNID last week and couldn’t help feeling comforted, slightly vindicated by the questions asked. They weren’t even of the: Do you ever…? variety, but the: How often do you feel… (ignored, left out, annoying, stupid… etc.)? type.

 So, I’m not alone. Sometimes knowing that these feelings for which you berate yourself are felt by other people in a similar situation, is comforting.

I had a bad night the other night. It was nobody’s fault, but there were too many people for me to lipread and too many conversations so I heard about 5% of what was said and that wasn’t enough to contribute anything meaningful. And when I thought I’d got it, I hadn’t and everybody laughed. It’s normal. But sometimes the planets collide like that and you’re all out of being able to laugh with them and you have to just go home, take out your hearing aids, and charge them up again for battle next day.

We’re getting to the Nice News everyone!

Giving myself a slap after this incident, I was reminded about the other side of hearing loss and the true friendship that melts my little heart on a regular basis when friends look out for me. They’ll choose the café or restaurant where they know I’ll hear best: walls are preferable to windows, carpet over concrete floors please, edges of the room rather than middles, round tables rather than square (for lipreading) and as far as humanly possible from the coffee machine… oh, and it has semi-circular booths, with padded sides and wooden rather than glass tables? Race you to it!

Or, when the conversation stalls for a moment and you realise one friend is searching for a film showing with subtitles. That kind of loveliness.

Or, when the other suddenly says: I’ve had an idea: Sign language!

Sorry?

It’s a wonderful idea and one I’ve thought of many times, but how could it work in my situation? Who would I sign with?

No, she says, that’s what I mean. We learn it with you then we can sign together
or we can sign for you when you can’t hear.

I was incredibly touched, quite emotional just at the suggestion. But learning sign language would be a massive commitment and the two friends in question do have a life and don’t have a real need for sign language. I’ll be honest, I didn’t really take it seriously, whilst really appreciating the sentiment.

Around the same time, and another touching moment, was the most thoughtful Secret Santa present I’ve ever had the fortune to receive. It was a book: BSL 100 Everyday Signs (thank you, lovely Beth). If someone has been so thoughtful, it would be rude not to try, wouldn’t it? And like any foreign language, it has made me realise that you wouldn’t need to learn too much before you could start to sign simple ‘sentences’. I mean, my signing conversation isn’t too inspiring so far… but you have to start somewhere, and this book is where I’ve started.

The third link in the chain was an offer on Lisa Mills’, BSL Sign Language page on Facebook. Lisa is a prolific sign language teacher and is utterly inspiring. I followed her originally because I had great intentions of watching the signing video clips she puts up most days, so I could ‘learn a bit’. Obviously, having followed her for years, I can count on one hand the ones I’ve watched. That’s Facebook for you, huh?

But one momentous day in the middle of January, an offer popped up for lifelong access to Lisa’s online, level one signing course. Lifelong access, I mused, start any time… why not pay the (ridiculously cheap) £29 now and then I had it, ready to start in oh, the early 2030s.

My big mistake was to tell my adorably caring friends that I’d bought the course. What did they do? They bought it too. So now we are three and nobody is talking of waiting for the next decade. We have our very own bijoux WhatsApp signing group. We have to practise because otherwise we’ll be in trouble. I doubly have to do it because let’s face it, they are doing it for me and it would be exceedingly ungrateful for me not to bother. We are getting faster at finger spelling. To put ‘faster’ in context, it would still be way quicker to write everything down, but you have to start somewhere and we are faster than we were. Our next face to face session is booked for the 4^th March and we have to have finished, practised and learned chapter one by then.

I think it’s time for me to go and do my homework.

But first I had to share this story of the kindness of people. They are true friends and their love and friendship far outweighs the uncomfortable relationship I have with my hearing loss.

Hearing loss or otherwise, if you’d like to share your Nice News about friendships, I’d love to hear it. You can comment HERE 👇

*I was brought up never to ‘hate’ anything, hence the ‘thoroughly dislike’ but you know, my mum was right, ‘thoroughly dislike’ does have more clout than hate here, don’t you think?

**If you are hard of hearing, please consider filling out the questionnaire to help the RNID in their work and research.