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.”

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A Day for BSL

Many academics and educationalists, as well as lead organisations have much to say and much information on the topic of deaf children and their communication needs. My take is as a lay person who has been through ‘the system’, having become almost completely deaf at the age of two in 1953 from the high dosage of streptomycin given me to save my life when I contacted viral encephalitis. There’s a whole story there – one day I’ll write it all down, but not just yet.

Yesterday two momentous events highlighted the importance of communication for deaf people and made me feel I needed to write something.

The Silent Child won the Oscar for best short live film. For hearing people, the message was stark. Deny children who are born deaf (or become deaf before acquiring speech) and you deny their rights – to language and to their place in family life. For too many deaf people it illustrated the isolation they felt growing up, often leading to frustration, depression and despair. Some had flashbacks, bad dreams and experienced the surfacing of agonising memories.

On the same day deaf people were celebrating that marvellous Oscar, a debate was held on the inclusion of British Sign Language in the national curriculum, following a petition. The minister’s response was disappointingly negative and the debate was held in Westminster Hall, not the House of Commons. That reminded me of something someone said on twitter about The Silent Child – that it was ‘niche’. Pretty dismissive comment, I thought, and replied politely challenging that term.

Many efforts are (and have historically been) made to ‘fix’ deaf children so they can hear and speak. I was going to talk about my own experiences, but so many others I know have had the same or similar, it’s probably more important to say a few things in general about the effects on a child of this ‘fixing’. Imagine spending weeks, months, years being taught to lipread, to hear with aids and to say, for example, the word ‘apple’. Does that enable the deaf child to know what an apple is; where it comes from; that there are varieties; to understand the part an apple plays in the story of Snow White? Not having sign language means educational achievement is skewed from day one.

How about the psychological and social effects? Hearing people in the majority of situations begin chatting to their babies the moment they are born. There are many brilliant hearing parents who make every effort to give their deaf baby visual information as well, and some learn sign too. This gives the child every opportunity to find friends they can communicate with and to feel included by their own family.
Too many, influenced by medical professionals, by their families, by their own fear of being isolated from their child, by the mistaken conviction that speech and hearing is the holy grail, seek only audio and surgical solutions. To me it seems perverse to do this, when the brain of a baby and young child can learn so much from visual input, whether deaf or not. Baby sign classes are very popular; makaton (a sign system, not a language) can be seen on popular children’s television. Yet sign is too often discouraged for the very people who need it as their first language. Growing up, finding your own identity and place in the world is tough enough without having to struggle to lipread all the time. Whether or not you have hearing aids or cochlear implants (not a miracle solution, rather an advanced hearing aid) having other means to communicate can make life less stressful, less exhausting, and more fun too.

This isn’t an polemic anti hearing aids, implants, radio aids, induction loops, alerting devices, captions, lip reading classes or hearing dogs. Those are all here to stay, and benefit many people. It’s just a fervent wish that all these things weren’t seen as reasons not to have sign language too.

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.

A first step – what came after my Deafision

A first step – what came after my Deafision

Since I last blogged, I’ve tried wearing one hearing aid with the sound set low just on occasions when I need to moderate my voice or try to hear my granddaughters. This week began with yet another bad reaction to even this tiny input, as did last week. Every time this happens, it leaves me like a limp rag for the next two days – interfering unacceptably with how I want to live.

I wrote in my Deafision blog:

“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.”

Since then, I’ve realised this does need to be my next step. I’ve listened to good friends who have CIs, I’ve done my research pretty thoroughly, talked to my family and spent many hours turning the issue over in my mind and I know I’m potentially what’s termed “a good candidate” for one. My view has shifted from once being totally anti (for myself – I’ve never judged other people’s choices) to reluctantly conceding it might one day be right for me to now accepting that that day has arrived. I’m not concerned with how anybody else may view my choice; we all have our particular reasons and situations for making our life choices.

For those who think I should “teach my family to sign”, I’d say:

“Be realistic. My family are all hearing, they don’t sign enough to keep it up for my benefit. I did not meet other deaf people or encounter sign language until I was 17, after being brought up completely orally, lipreading and attending mainstream schools. My first language is English, BSL is my second language and however much I love it, however much I prefer to use it and to communicate with my deaf friends and acquaintances, I am a pragmatic person who deals with the world around her as it is, not how I wish it was.”

Yes, I could change my mind, or I may not be accepted for one, but those are next steps. My first step is an CI information group meeting in November.

I feel a mix of trepidation and anticipation. It’s a new adventure for me.

 

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/

 

 

 

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.