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Farewell Tweeters.

I write this having just closed my twitter account. The lead into this decision has been over the last two years – since my unwanted birthday gift of a certain vote in 2017. When asked why, my answers are generally along these lines:

  • I’ve had enough of the increase in unwanted adverts popping up, particularly the videos;
  • I’ve had enough of being told about likes/retweets etc that are from people I don’t follow;
  • I’ve had enough of extreme view points aggressively and nastily promoted; too many personal insults, not much reasoned debate;
  • I am increasingly bored with tweets from people getting over excited about trivia and ‘celebs’, people who think the world revolves round them and people with one track minds who refuse to consider other perspectives;
  • My intense irritation (that I rarely express on line because I’m nice) with poor grammar and spelling;
  • My realisation that it is addictive and takes up too much of my time;
  • I want to read more books instead.

Social media, especially twitter has the capacity to magnify or diminish; to clarify or distort. The pernicious anonymity of it enables the worst of human nature to be displayed without fear of any comeback. The best of human nature is rarely to be seen. When I first set up a twitter account, I felt, for the most part, that I was managing the account to fit my preferences. In the last few years, that feeling has vanished and it became ever more clear that twitter and associated commercial concerns was doing the managing. I’m not naive. I know that media in general controls us much more than we control it, but it now feels far more blatant than it once did. I ignore the majority of advertisements, wherever they appear, skimming past them in newsprint, focusing on my book or puzzle when they appear on screen. I prefer to make decisions about what I spend my money on first, then research options, not have my spending driven by ads. That approach doesn’t stop me feeling irritated at the prevalence of them and I was weary of constantly blocking unsolicited ads from my twitter timeline.

The feeling I got when I deactivated the account, then deleted the icon was one of great relief.

My CI op and after

July 11th 2018Since I last blogged, I’ve had my cochlear implant operation and five ‘switch on & tuning’ appointments. It’s no exaggeration to say the experience so far has been painful, weird, exciting, pleasing and, most of all, surprising. Before the operation, I went to an information meeting in November 2017, where all my practical questions were answered and we heard from someone who had a CI. That same week, I filled in a questionnaire and had an assessment to see if I was a suitable candidate. I think these preliminaries are essential – CIs are not suitable for all deaf people for a range of reasons. In early January, I had MRI & CT scans to check if my cochlea & brain were in good shape to receive the electrode array & internal magnet. On February 21st, I paid another visit to be told yes I was ok to receive a CI and given a date for the operation at the end of April. Alongside these things, I spoke face to face and on line to other people who had had CIs at various times. Their words and support were so helpful, I’ll always be thankful for them especially to Stephen Iliffe, whose blog about his CI was also invaluable. I read as much as I could about CIs, including a book about one man’s experiences* and all the leaflets and websites I could find. I also had one session with the counsellor I’ve turned to at other tricky times in my life, to disentangle my complex feelings about why I was doing this.My husband, Charles, has been unfailingly loving and supportive practically and emotionally during the tough times. I had interest and support from my lovely family and friends, and FaceBook and Twitter followers, both hearing and deaf.Operation day arrived, seemingly moments after my original decision. We prepared by booking a room in a nearby travel lodge so Charles would be able to stay if I was kept in overnight, or we could both stay and avoid travelling until the next morning. I wore clothes that buttoned down the front in anticipation of the head bandage I knew I’d wake up with, trackie bottoms and slip on shoes to avoid bending down too much afterwards. I’d been warned of all possible complications – none of which transpired, aside from temporary bruising and numbness of the side operated on and increased tinnitus up to switch on. Preparation done, hospital gown donned, consent form signed. We had brought our kindles in anticipation of a wait and we read until, at 2.30pm, I was summoned. Charles took himself off for some food and to check out the travel lodge and I began my journey to – quite what, I wasn’t sure. In a little room I hopped on to a trolley, the anaesthetist reassured me and (very gently) inserted the cannula for the knockout stuff. I looked at the time (2.45pm) chatted to the nursing student about her plans to become a midwife and then zzzzzzz. I woke, feeling cold, in the recovery room, with a large pad on the site of the implant operation and my head tightly turban bandaged. It was 4.20pm. The surgeon came, told me all had gone well, and shook my hand. He’d obviously finished for the weekend – it was a Friday – wearing jeans and shirt and a big smile. One of the nurses, when I said I was cold, covered me in something like bubble wrap and blew warm air from a machine into it. It expanded so I felt as if I was in a warm cocoon – lovely feeling. When they deflated it, I was quite disappointed.Back in the ward, I demolished a plateful of stew and vegetables followed by apple crumble and custard. Later on, I had coffee – and several more biscuits than I’d normally eat. The care given by the nursing team was superb, they kept an eye on me and carefully escorted me on my first trip to the loo.I felt slow and wobbly but was soon able to make it to the loo independently. I was monitored regularly and had oxygen for a few hours, then discharged at 8.45. Charles came to fetch me. Slowly, holding his arm, I made my way to the travel lodge, where we had a top floor room. We didn’t sleep very well but the next morning, our early taxi ride through a green, sunny, deserted city to Victoria station was a lovely start to our journey home. A fast train to Brighton, another taxi along the coast and we were home for lunch. Charles carefully took the bandage off and took photos of the wound and bruising. If anyone reading really wants to see them, let me know! My poor ear stuck out disturbingly and I had to take one arm off my specs to wear them for the next week. The bruising stretched down my neck and around one eye and my tinnitus was horrendous. I was exhausted too. That exhaustion gradually lifted over the next week, the bruising faded, my ear, though numb, started to return to its usual place and only the tinnitus carried on, although that vanished with my switch on.Not being able to wash my hair for a fortnight was a nuisance, but not as awful as I’d feared. After a week, I managed a good walk and within a fortnight I could do my usual long dog walks. Percy, my Hearing Dog, was delighted. Two weeks later, I was back in London for a post op check. All was well with the operation site – the stitches were dissolvable – and I then went for an X-ray to establish the location of the implant and magnet ready for switch on in another two weeks. Back for switch on, with anticipation but low expectations. Having been profoundly deaf since I was two, I was unaware of many sounds, other than those received via hearing aids, and was only hopeful to hear voices, if nothing else. I lipread very well and use BSL. My personal experiences and those of my many deaf friends have shown me that these skills are hugely desirable for all deaf people, including children, regardless of whether or not they have a cochlear implant. While waiting to see the audiologist, Charles & I got into conversation with a mother and her daughter aged about five. The daughter was having her post op check after a double CI. While Charles chatted with the mother, I signed with the daughter about my Hearing Dog, Percy – who was being his usual friendly self – and we communicated with ease. I don’t think it is helpful to tell any deaf person of any age to stop signing or lipreading if they have a CI or to avoid using visual communication. If the CI breaks, or is lost, and there is no option for signing, that is potentially very isolating. I’m not suggesting not encouraging listening and speech, just not presenting it as the only valid method of communication. My view is that life is much richer with a range of ways to communicate. I also accept, however, that for an adult who has grown up with only hearing and spoken language, this may not be a realistic perspective. I also understand that many hearing parents of deaf babies want their child to communicate as they do and believe CIs will achieve this. Providing BSL and/or lipreading lessons free of charge to parents and siblings of deaf children and to deafened adults would help many people. The operation removes any residual hearing in most cases, so is highly likely to make anyone who has it more, not less deaf, albeit with access to a high performance piece of technology that connects directly with the auditory nerve.A CI is NOT a miracle life changing cure for deafness and its success depends on many factors. There are so many ways to be deaf, depending on age of becoming deaf, family, upbringing and schooling, contact with other deaf children and deaf adults, with level of hearing loss possibly the least crucial factor. If the person has used hearing aids, the brain has already become used to deciphering artificially produced sounds, so doing it from a CI will usually be easier and quicker for them than for others. If not, as in the case of babies born deaf, or people deafened later in life, it will be a harder job for the brain to adapt and take longer, although a baby’s brain is much more receptive to new signals than an adult’s. In my own case, I had barely any useful residual hearing in either ear, so losing it totally in my left ear didn’t trouble me and I can’t wear hearing aids now anyway. My turn – in we went. Did I want ‘the moment’ videoed? No thank you. After a lot of keyboard tapping and screen scrutiny, I ‘heard’ a low rumble, which became slightly clearer and recognisable as Charles’ scouse accented voice. Did I cry? Just a bit – it had been a year since I had heard that voice. Was I overcome? No. Intrigued is a better word, as I began what many call a ‘cochlear journey’. A bit more tuning, presentation of a gallimaufry of extra equipment to protect the processor for swimming, for drying the processor overnight, for recharging the batteries – I have one that lasts 11 hours and one that lasts 23 hours – plus a attachment for hearing aid type batteries. Chargers for any country in the world. All this and – just as we were considering nipping into the Co-op for a carrier bag to tote it all home – a posh rucksack for it all.Four days after my ‘CI ‘switch on’ (Charles said it sounded as if I was Blackpool Illuminations and wondered if I could have a ‘celebrity’ to do it) I could now hear voices, which was my main wish. I was full of anticipation about hearing my daughters and granddaughters as well as seeing them and It was as lovely as I thought it would be. We have had more conversation than we’ve had for a year and it’s a huge pleasure to hear, as well as watch, the little one singing and signing nursery rhymes. Being able to resume brilliant conversations with the older one is wonderful too. Other sounds continue to filter through too, but at first they were often weird and I didn’t feel the same thrill as I did at hearing the voices. Some sounds were pretty awful to my ear. One unexpected treat was being able to hear a song that was once a favourite of mine, Leonard Cohen’s ‘Suzanne’. It made me think of yesterday’s achievements for women and a Helen Reddy song that I heard and loved many years ago – these lyrics feel right, especially in Ireland and America. ** Another treat was being able listen to a double LP I used to love as a teenager on my iPad, streamed direct to my CI while doing a stack of ironing. It finished exactly as I ironed the last tee shirt. Ironing while watching tv with captions isn’t so easy!I listened to a Beatles CD while driving & that was good too.I think rediscovery of my favourite 60s songs will be a pleasure for some time – there are plenty of them. Now a month on, after five post op appointments to add more frequencies, tune the CI to suit my needs and check my hearing/listening my CI has become part of my life, just as my hearing aids were. I’ve not stopped signing or lipreading and I’m still a deaf person. My general views on CIs haven’t changed but it was absolutely the right choice for me and makes my life easier. I’m gradually tolerating more sounds and deciphering more when wearing it. Some are lovely, others not so much, though tuning their reception by the CI has improved the sound greatly. I think some voice telephone and possibly even radio might be part of my future hearing. A huge bonus for me after a year of increasingly distressing intrusive and continuous tinnitus was a near total reduction of it. I haven’t yet risked trying the waterproofing gubbins for my CI though, that all seems too much faff. I’ve swum all my life quite happily without hearing and expect to continue to do so. There are activities where conversation is just a distraction. But perhaps if I take my younger granddaughter swimming…*Connected: How a Cochlear Implant Made Me More Deaf – John Cradden**”I am woman, hear me roarIn numbers too big to ignoreAnd I know too much to go back an’ pretend’Cause I’ve heard it all beforeAnd I’ve been down there on the floorNo one’s ever gonna keep me down againOh yes, I am wiseBut it’s wisdom born of painYes, I’ve paid the priceBut look how much I gainedIf I have to, I can do anythingI am strong(Strong)I am invincible(Invincible)I am womanYou can bend but never break me’Cause it only serves to make meMore determined to achieve my final goalAnd I come back even strongerNot a novice any longer’Cause you’ve deepened the conviction in my soulOh yes, I am wiseBut it’s wisdom born of painYes, I’ve paid the priceBut look how much I gainedIf I have to, I can do anythingI am strong(Strong)I am invincible(Invincible)I am womanI am woman watch me growSee me standing toe to toeAs I spread my lovin’ arms across the landBut I’m still an embryoWith a long, long way to goUntil I make my brother understandOh yes, I am wiseBut it’s wisdom born of painYes, I’ve paid the priceBut look how much I gainedIf I have to, I can face anythingI am strong(Strong)I am invincible(Invincible)I am womanI am womanI am invincibleI am strongI am womanI am invincibleI am strongI am woman.”

Philistinism is here, watch out ‘public’ libraries

I began borrowing 8 books a week – 4 from from Boots Lending Library and 4 from our local public library at the age of four. As a profoundly deaf person, books have been – and are – my window on the world, my escape, my salvation, my comfort and my teachers.

My mother had a friend who had what I thought was a dream job managing county library services to people needing audiobooks, needing home visiting and other ‘special’ services. Aged 11, having ‘classified’ my own books, this friend asked me what I wanted to be when I grew up. With no hesitation, I answered. “I want your job.” Reader, some 30 years later, I got that job, via several other public library positions, all of which I revelled in. Earning (albeit not riches) doing what I loved – what a privilege.

Before the first stirrings of monitoring public services as if they were businesses and regarding them as soft options for downgrades and cuts, the libraries I worked in were safe havens where nobody queried what you were reading, where you could find all human knowledge and imagination free of charge to take home. What a privilege and delight; what development opportunities; what a world.

That people would seek to damage it in the way that is now a terrifying norm was far beyond my comprehension in those days of my pleasure in demonstrating Ranganathan’s Five Laws of Library Science:
1. Books are for use.
2. Every reader his / her book.
3. Every book its reader.
4. Save the time of the reader.
5. The library is a growing organism.

I’m sad, I’m cross, I’m upset at the sheer philistinism of today’s library authorities. “A comprehensive service”? Hah.

Resignation

Resignation

This ringing in my ears;
This ‘tinnitus’ so called – I googled it of course – from
“mid 19th century: from Latin, from tinnire ‘to ring, tinkle’, of imitative origin”
Its sound on left is of a roaring ocean’s unceasing waves;
On right a high pitched tintinabulation of bells.
You might think that’s quite pleasant.
Perhaps it is if you can turn it off, tune it out at your behest.
Not so for me.
No other sounds pierce its insistent tones.
Wine, coffee, weariness and stress;
Even the things supposed to help me hear.
All encourage it to persist.
Unheard by others, it belongs to me; I’ll live with it.

 

Charlie Gard and my cognitive dissonance

My cognitive dissonance about Charlie Gard

Charlie Gard has died, after unimaginable trauma and suffering. Yes, I mean his trauma and suffering, not that of his parents. And certainly not that of the bandwagon jumpers; the shockingly exploitative media, religious, political and medical figures who intruded unnecessarily on what should always have been a private situation between Charlie’s parents and Great Ormond Street.

I can’t get the situation out of my mind. It is too close to home. 37 years ago I was pregnant for the second time. I had a wonderfully engaging and loveable two year old daughter. She and I had been through some hard times since her birth with her treatment for the cleft lip she was born with, and would still go through more during her growing up. I was looking forward to seeing how she would be with her expected sibling.

In late September, my son, Benjamin David (after my father, who had died far too young earlier that same year) was born at home after a long but not painful labour. The midwife gathered him up and handed him to me. He did not feed well from me. I cuddled him and talked to him. Two days later, on our doctor’s advice, my husband took him to hospital (the same one which treated my daughter) and returned alone to tell me that Ben had Down’s Syndrome and serious stomach complications. I thought, that’s ok, I will love and raise him as he needs to be loved and raised; we’ll get through this too.

The next day we met the consultant caring for Ben. He explained gently that Ben’s digestion would never work, never allow him to receive nourishment other than by tube, that he would die within days if we agreed to palliative care, in weeks if he was given nutrition medically. The Down’s Syndrome wasn’t the issue, his ability to live and grow was. Such a momentous decision. In the years since I’ve rethought it many times, especially when similar cases become public. I don’t think my decision was wrong, but when I read about parents like the Gards and see their evident passion, I do wonder if I was horribly cold hearted. I had my daughter to consider, myself to consider, most of all my son to consider. We agreed to palliative care and eight days later, Ben died peacefully in my arms.

Here is my cognitive dissonance. I have many disabled friends. I don’t agree with those who want to change the law to allow assisted dying. I believe the law is sufficient as it stands. I don’t equate disability with illness. I want much much better support and care for all disabled people (not cure, unless that’s what they want) and excellent palliative end of life care available to all who need it. I support the Not Dead Yet campaign. And yet…..

My view now is that nobody can judge another’s situation, even if you have been in it; that believing you are truly thinking of your child, rather than yourself as parent can result in different outcomes for different families; that I need not feel guilty about my decision; that involving the media circus creates a public monster from a private dilemma; that both death and disability are part of life and perhaps we are too reluctant to accept that in our society. Live ‘perfectly’ or die? Live suffering pain or die? Who can really judge? If I believed in a god or fate, maybe I would have different views, but I don’t. Life really isn’t what happens to you while you are busy getting on with stuff, it’s what you decide to do with what happens to you.

I was given a little book on my marriage, these words were in it:

http://www.thepoetryexchange.co.uk/poem/on-children-by-khalil-gibran/

 

 

 

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.