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My ‘Deafision’

image‘These are the earrings I mention in my last paragraph – read on to find out why.

My ‘Deafision’

After weeks of increased intrusive tinnitus on both sides, with vertigo, nausea and fatigue, triggered every single time I wore my hearing aids for more than an hour, I’ve been thinking more often about making a ‘Deafision’. (My word for a decision on choices linked to being deaf.) These words are very personal to me; I’m not offering any advice, just indulging myself in sharing my thoughts here.

What do my hearing aids give me?

Some sounds, but not sound recognition or directional information, and only inside the room I am in. Whether I pick the sound up or not is variable.

Some speech, if from someone facing me in the right light within a couple of feet and speaking clearly, to boost lipreading, signing, or captions/speech to text a little. Background noise at any level through the aids makes speech sound worse than useless. If outside, this includes wind, traffic, crowd noise.

Some sound with television programmes if I use an induction loop, but only if I also use subtitles. Loops in other places are not enough for me without captions.

More tendency to itchy ears and ear infections.

Things needing cleaning & maintenance, regular battery, tube & mould changes.

Trips to audiology where deaf awareness and communication skills are often in short supply.

Annoying loud feedback when wearing a hat or hood.

So, given the above, why do I wear them at all?

To hear something of the voices of my family – most especially my 2 & 10 year old granddaughters, who are hearing in hearing families so not exposed enough to sign to be able to use it to communicate with me. It’s hard enough to lipread them. If only it were taught in schools and if only I’d been given access to it growing up (in the 50s/60s) so my children had grown up bilingual. I love my family dearly; they all speak clearly enough so I can lipread them with ease and my daughters can sign a little, but how lovely it would be if they could all sign. I’ve become accustomed (not at all resentfully but peacefully with understanding) and resigned to not being part of family group conversations.

To hear some speech & music sounds in television/DVDs/theatre performances – subtitles or sign still needed for understanding.

To hear car engine sounds when driving, but this is only from long habit, probably not essential.

I can’t honestly think of any other sounds I’m desperate to hear. Not the birds singing, or the wind rustling, or even music. Perhaps the roar of the ocean, but while I can see the sea daily from my window, I’m happy it’s a strong visual presence in my life, if not a noisy one. Sound, to me, is a functional thing, not the thing of joy it clearly is to many.

What about other outside sounds?

I manage fine out and about in my small town where I live (and where I grew up). All the staff in shops, restaurants & pubs know how to communicate with me on the basic level necessary. I have had hearing dogs for over 30 years, a clear enough sign that I am deaf. (I will never wear a badge!) I’ve got great peripheral vision and observational skill. I’m a confident person who will ask others to face me, speak clearly etc without embarrassment. Buses, trains & planes are more likely these days to have visual signs as well as verbal, so, even though I always have an underlying nervousness in case of unannounced change or emergency, I can travel confidently and will ask the person next to me if I have to. Yes, I do sometimes have to give an impromptu deaf awareness lesson, but hopefully that will help the recipient to communicate better with the next deaf person they encounter.

I’m part retired and interpreters are always provided for the few days a month part time work I do. I’m happier nowadays to be more of a supportive observer than an active participant in society and community, with no FOMO (Fear of Missing Out!) troubling me. I need captions or communication support even when wearing hearing aids, so not wearing them makes very little difference to my activities. Text, FaceTime, email, social media, etc are all available to me to keep in touch with many friends.

My conclusions?

I’ve often thought that hearing aids are really for hearing people, so they can believe they don’t have to make any effort to communicate with the wearer. Everyone who is severely or profoundly deaf who wears them knows they are nowhere near perfect solutions, or solutions at all.

Cochlear implants are increasingly provided, is this for me? I feel very resistant, are they really more for hearing people as above? Do I value the possibility of increased sound enough to undergo an operation and thereafter have a foreign body inside my head with the other bit stuck on the outside? Remember, I said it’s just my family’s voices I want to hear, few other sounds matter much to me. Not all are successful and I abhor those emotive switch on videos.

What will I do?

My ‘Deafision’ is – for as often as possible (grandma days will continue to be the exception) – to go hearing aid free with only earrings adorning my ears.
I love wearing them and have a vast collection. My current favourites are my book ones – see above. If you know me, you will know just how appropriate they are. Thank you to my lovely man for giving them – and so much else – to me.

 

Desk Work

I thought I was managing pretty well clearing my mother’s house for sale now she has moved into a care home – no tears, no sentimental attachments to ‘stuff’. But when I emptied the Desk, repository of millions of memories, and realised I had no room for it in my home, although my mother wanted me to have it, that felt rather different. It’s a massive old roll top job. I loved the vibration rattle the lid made opening & closing – it never failed in the 60 odd years we used it. There was a secret drawer,  although we often forgot how to open it. Cries of delight greeted each time we remembered, even though there was rarely anything in it once opened.

Golf trophies; dominoes, solitaire, lexicon, snakes & ladders, chess board & pieces; old school reports with phrases like “must try harder”, “tennis could be county standard if her footwork improves”, “he is doing his best and must keep up his effort in all subjects”, “mysterious bits of paper with equally mysterious writing; love letters from my father to my mother during WW2; ancient chocolate bars; ten pairs of sunglasses; knitting needles; family photographs dating back to the 19th century. A treasure trove.

Well, it’s going to auction but I’m saving the photograph I took -odd to think we will no longer  be saying, on mislaying things, “Have you looked in the Desk?”

image

 

Where does sentimentality lead us?

I love my family, my friends, my dogs, my books and where I live. This latter, however, doesn’t mean the bricks and mortar of my current living location. It means the swell of the south downs; the grey, blue, green, smooth, wrinkled or furious sea; the memories of my childhood in the streets, on the esplanade, in the shops and pubs; the love of my parents and grandparents expressed in cuddles, stories and time.

Sentimentality is different – I have a sentimental attachment to very little – some of my books; my grandmother’s wedding ring; the silver bracelets once belonging to my brother; a painting my daughter did for me of the Seven Sisters; some of my photographs. That’s it really, there’s a freedom for me in knowing that I’m not sentimental about my flat – I do enjoy the sea view but the place itself is just where I lay my head in reasonable but not luxurious comfort.

I know it’s not the same for my mother and for many more older people now living solo in increasingly cluttered and dilapidated houses with once beautiful, now jungly, gardens. But how I wish it was – if we could only learn not to invest so much of ourselves in bricks and mortar and ‘stuff’, how much easier to recognise when the time comes to be practical and move somewhere smaller, easier and safer. When a house becomes a millstone for the occupant and their family, it creates tensions in the family, makes things hard for everyone. I know there are as many options for living as there are sizes and shapes of families and no one solution works for all, but right now in my own life, I wish the solutions could be practical and not for sentimental reasons.

We are lucky to have choices. As write, I feel self indulgent and think of those living on the streets, and dying on those streets; of those in refugee camps; those in makeshift shelters; in cramped one room accommodation; in damp flats with peeling wallpaper; those affected by floods. Then I think of those with second homes; with mansions; with castles; with empty properties earning money for their owners through no effort of theirs and wonder again at how skewed our society is.

It’s been a while

I haven’t felt like writing for a while; my writing brain seems to have atrophied. Why? I think my mourning for Peter, although not worn externally, has had a truly deep effect on me. This effect first showed in spending money more than usual – and I am a fairly thrifty person that dislikes all advertisements and avoids buying unnecessary stuff. But Peter was the opposite; was I being him?

Then there is the actual physical pain that strikes somewhere around my solar plexus every so often when something said or done or seen reminds me of Peter and the loss of Peter.  I almost welcomed me these occasions because somehow it seems wrong to just carry on as usual.

I think it will be a long while before we can tell each other Peter stories, say “what would Peter think” or “Peter would like this” as we do about my father (who died in 1980) quite comfortably.

Its been a tough six months for other, more prosaic, but demanding reasons. So that’s probably why I feel so drained, yet along with that is the excited anticipation of the birth of my second granddaughter next month.

Life – it’s such a cliche…

 

My brother

It’s a week since my brother died. I feel as if a piece of my heart has been torn out. This last week has been full of arrangements and sorrow. Next week is the funeral – it’s billed as a celebration of his life but he was just 61, too young, too much living to do. My mother at 89 says she should have gone first – it’s hard to disagree with her. Poignantly, my younger daughter is expecting her first baby next January, a year after the diagnosis was made of the virulent and untreatable cancer that took my brother’s life away from us. On the day he died she felt the baby kick for the first time. I’m a cynical old thing but that was a precious coincidence for me. I have been so touched by the kindness of friends, I wasn’t sure about facebooking this but it turned out to be the right thing to put the picture and the words up that reflected my mood. So many comments from lovely friends.

I’ve planned my talk and poems for next Tuesday; I’m going to be a pall bearer. What else can I do to salve this ache? Time will soften it, memories will heal – but not yet, and so my tears fall…

This could be me

This could be me

This could be me

When I saw this photo on twitter, physical memories threatened to overwhelm me of the trips to Grays Inn Road with my mother that seemed to take up our whole lives in the years before I began school. Scratchy train seats; station smells; the cold green stuff I was sure was icecream that was pumped into my ears to make hearing aid moulds; the tears I wept copiously when instructed to LISTEN when I could not make my ears do it. But afterwards, my mother always took me first to feed the feathery, nibbly, jostly pigeons in Trafalgar Square, then to the cartoon cinema on Victoria station on our way home.

Sign or Speech – why the conflict?

Last night, I contributed a couple of comments to a long string of posts on a social media platform for deaf people and – yet again – felt sad at the apparent antagonism of those who prefer to use English (whether spoken, lipread or read) against British Sign Language. There seems to be a perception that the needs of BSL users currently trumps those of people who use English. I don’t think there is any evidence for this, personally. Provision of captions & induction loops, etc far outstrips provision of BSL on screen & in public spaces. Deaf people who are bilingual or have English as their first language (as I do) have many more options when communicating than those who use BSL alone, even with the frustration and exhaustion that communication with unaware people can bring. One of those advantages is being able to share their views in text on social media. I find it distressing to read extreme views that show little acceptance of both the differences and similarities in the barriers we all face. Poor access to language & education for those who were born deaf or became deaf before speaking does not result in lack of intelligence but in lack of the knowledge we all need to function in society. Not having BSL as an option for communication does not result in being somehow not really deaf or in not having communication problems. When face to face, most of us get by as best we can without overtly insulting each other, but the anonymity of social media gives licence to make provocative & antagonistic statements. This is nothing new, of course, we are all familiar with trolling behaviour on all platforms, but it would be good if it was not between those who share many common difficulties.