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.

 

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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/

 

 

 

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.

 

Deaf Awareness at Gatwick? Not yet.

A week ago I flew from Gatwick airport for a holiday. Having heard of their new scheme to provide additional access support to disabled travellers, including deaf people and involving an identification ‘lanyard’ (last time I wore one I was in the girl guides and it had a whistle on the end), I decided to trial this, in the interests of research, hoping that my, admittedly low, expectations (as a result of previous experiences) would be met.

I don’t think it’s particularly helpful to only complain, I do want to see improvements made at Gatwick for all deaf travellers, so I’ve amended my original blog to provide suggestions for improvement under each observation.

On my early morning arrival, the new reception area was closed and empty. I flagged down a member of staff to unlock the area. They did this, gave me a ‘lanyard’ (which did not appear to indicate what the specific issues were), did not ask what my access needs were, was not easy to lip read and ushered me to a chair in the area marked unnecessarily with the ubiquitous wheelchair symbol. They sat behind  desk too high for many to make a phone call. I assumed the call was to someone who would provide communication support. No – another person arrived, took my case and beckoned me to follow.

~The first action should be to discover what the person needs and provide what is actually needed.

The staff member (who was not at all easy to lipread) rushed off with me following and whizzed through baggage drop and security too fast for me to collect my thoughts and prepare – I forgot I’d left my kindle in my  bag as a result so was called aside by security. This person was impatient with my request to speak slowly and clearly. Yes  it’s nice to queue jump, who doesn’t want to avoid hanging around, but that was not what I asked for or needed.

~All airport staff need to demonstrate a minimum of awareness training in relation to all access needs.

The next thing was that the person accompanying me ushered me to what I can only describe as a holding pen area, where wheelchair users and others with mobility needs were,  slung a buzzer on another lanyard over my neck and set it for a certain time. I was told to return to this area when it buzzed.

~It’s not necessary to lump all disabled and deaf people together in one area. I think a buzzer is potentially a good idea if it could show your boarding gate number and buzz an hour before the gate opens, but not to ‘herd’ us together.

The buzzer went too soon for me to get the newspaper and chocolate I was about to buy. On returning to the ‘pen’, I was corralled with another woman onto a mobility vehicle, despite my protestations I could walk to the gate. We were ushered to a priority boarding area. I’m sure this works very well for many people with mobility issues, but was not necessary for me. As a result, I had to wait longer at the boarding gate than I would have normally done and missed the chance to buy a paper or even select the free newspaper I wanted or to get the drink & chocolate I had intended to get. I asked for one and did get it – but not the one I asked for. Deaf people need access to communication and information first; we may also have other needs, but if not, we don’t need priority boarding, we need communication support, especially at check in and security.

~Staff with at least basic sign language skills should be part of each airport team; an on site interpreter should be available when requested (this may already be provided but was not offered).  These staff need to be the ones to escort deaf people through check in etc.

Thumbs up to Gatwick’s service to people with mobility needs, (although it seems they too would miss out on the free newspaper of their choice as a result of being trollied!) Thumbs down to their service to deaf and hard of hearing people. Room for improvement and one star for the attempt. I’m well aware of the challenges inherent in managing so many passengers going to so many places but the main lesson for Gatwick is to treat people as individuals and find out what they actually need first. Then ensure those needs are met.

 

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…