Three days and counting...

I did something weird tonight...

The battery in my right hearing aid (the best ear) went. Instead of replacing it, I just took it out and spent the evening using my left hearing aid, an unsubconscious valiant effort I guess, to remember how my current residual hearing sounds like - before it is gone for good.

I currently hear a strong resonating 'NNN' sound in my left ear. Dull, flat, nasal, underwater - nnNNNnnnnermmmmm. Watching 'The League of Extraordinary Gentlemen' - I'm reading the subtitles: 'To the end...' and hearing: 'nu ne emmed'; while 'Seal it off!' is 'neam in omm'; and 'Fear, no doubt' is coming across as 'nea no mouunt'. The Tiger growls 'Nnrrrrrr! Nnrrrrr! NNNNNnrrrrrr!' It just hit me I have decent enough auditory perception - enough to describe just how I am hearing in the left ear... to know it isn't natural. Is it perceptive enough to enable me succeed with the CI?

Talking to Vincent McArdle this week about getting his implant at the age of 12/13, he told me how he found his father difficult to understand before he had his implant. I found this strange. Growing up I was able to understand both my parents.

My most vivid memory of my father is from when I was 9 years old: standing in the kitchen in front of the cooker; supervising a huge bubbling pot of indescribable-coloured soup with a kitchen towel thrown over his right shoulder surrounded by every pot, pan, spoon, fork, cup, dish lying around used and tossed aside... the child-me just arriving on the scene and looking around in stunned-fascinated horror. Knowing my house-proud clean-nik quick-tempered mother will go absolute SPARE at the this sight of my father still half-drunk, just woken from a sleep by Donny Collum. Probably after one of his legendary 2/3 day binge-drinking outings that I hear so much about now! He had tossed his dinner she had saved him into a saucepan with water, a few spoons from the catering tin of vegetable soup, scraps from the fridge (including the left over half-ring of black pudding!) and proceeded to make soup. As the list of ingredients grew, the soup got transferred to bigger and bigger pots til all that was left was the frying pan. My dad is talking and laughing with Donny. Donny opens the fridge, I watch as he sniffs a plate of fish (smoked cod I think!) and makes appreciative noises. I wrinkle my nose and declare fish as 'Yucky!' My Dad grimaces, turns to me and replies sadly: 'Ahhh Gilly... fish tastes beautiful! Beautiful! I LOVE fish... (smacking his lips loudly) beautiful fish! Beautiful!' And I understood every word he said. He died the following year, I struggle to remember his face at times but I remember his voice, those words... and play that scene over and over in my head.

Our mother on the other hand speaks with an almost neutral accent with a slight northern twang that gets more noticeable every time she is in Cavan. Her siblings have a far more pronounced accent than she does. Pointing this out to someone, who replied that it is natural to see our mothers voice as 'the neutral/normal accent' and everyone else in differing dialects away from this. Interesting theory? Does anyone agree?

Mum always speaks ninety-to-the-dozen, so fast I often pick her up totally 'arseways' as she puts it... she can whip between conversations carrying 2 or 3 topics simultaneously, which adds to the confusion too. When she was told that I was deaf she didn't bother changing her way of talking - I swear she decided there and then that I had either had to learn to follow 'her way or the highway!' Over the years I learnt to adjust and second guess the words I miss, successfully I might add; I do this for a lot of people, not just my Mum.

Recently this was brought to the fore by my 4-year-old daughter, sitting between Mum and me at my kitchen table; Théa often repeats things for me e.g. when the shop girl asks if I like 'cash-back' on my laser card and my head is turned - when I don't reply my daughter will tap me and interpret the conversation: "Maaaaam, she said: Do. You. Want. Cash. Back?" Emphasising each word fully and properly.

On this day, Mum was flying along in full-flow as usual; with me sitting there silently - getting one word in every four and 'expertly guessing' the rest! Théa kept tapping me on the arm to 'translate':
-Mam, Nanny's just said X had a baby...
-Mam, Nanny said X died last week...
-Mam, Nanny is talking about a man who....
You get the gist? When suddenly Mum just stops chattering mid-flow "Miss Théa, there's no need to repeat what I say, your mother understands EVERY word I'm saying!" Théa takes offence to this and pursing her lips primly in reply "No Nanny, she can't - she's DEAF and you are speaking TOO fast! Tut!" LOL! While I was admiring the innocent wisdom of my daughter, Mum stopped and looked at me, saying: "Well, once upon a time I think she used to be so much better at hearing me than she does now.... she takes up a lot of things areseways!"
-Yes Nanny. ARSEWAYS!
(AND you can't blame me for that one, Mum!)

I am looking forward (with trepidation if I'm honest) to seeing if their voices sound any different post-switch-on...

Just thinking about the operation is making me restless, I am not sleeping well at all! I better start packing my bag and sort out last minute stuff etc. I've just finalised my travel arrangements with my friend Ray, if there's a bed available on Tuesday he'll come over and pick me up. If I don't - I'll stay the night with them on Tuesday night and he'll bring me in early on Wednesday morning. I'm fasting from midnight.

Two more sleepless nights ahead... Just hope I get enough sleep in there to catch up on it!

8 days to go...

I got my letter from Beaumont Hospital confirming the operation on 4th November, admission date 3rd November... Well I'm to call on 3rd to check if there is a bed available, if not then I stay at home on 3rd and go in early on 4th.

Oh my god... that's barely 8 days!

I've always said I'm not nervous about the actual operation, but its still nerve wracking. I've met 15/16 people out of 20 who admitted to having issues after the operation - balance problems, dizziness/vertigo, nausea, extreme/loud tinnitus, loss of sensation/taste/smell, sore throat and for one person - a lot of pain. But the good thing is I will be kept in hospital for 5-7 days to treat any complication that arises.

I've been reading several CI Journey blogs lately I was struck by some of the experiences, especially the American ones, most of them are usually in for one day for the operation then sent home once they wake up! B's blog tells of her post-op experience that left her bed-ridden, her op scar is even more scary! None of the Irish CI'ee scars (that I've seen) are as big as B's either.

Meeting Susie H again this week, she recounted her operation experience (which was very positive) summing it up she was very glad to go home because the four walls were beginning to close in on her... she mentioned one thing that I was not prepared for: She was unable to drive for 3 weeks. Oh. I told my manager I needed 2 weeks off from 3rd November... hope she will be accommodating if I go over that! Driving is part of my work, plus living in Blanchardstown and travelling to Tallaght, get my hours in then be back home within 9 hours (childcare limitations) is nigh impossible using public transport!

Fiona also met me this week and reminded me that I will hate not washing my hair! My hair gets greasy after 3 days, I will be really mingling for 2 weeks! Both girls joined me as part of my new video diary on my CI Journey that I am preparing for Hands On the TV magazine programme for Deaf people in Ireland. But neither are 'Deaf' so I will need to meet and chat with other people who have a CI in the Deaf community...

As I mentioned before my identity is undergoing a huge change, when you have accepted what you have been for so long - this new aspect is huge to re-accept. I had this argument with a work colleague who pointed out that I was still 'technically deaf' but that's not the point. Anyone who watches ER will recall the ER Chief Dr Weaver going through personal and emotional torment while under going a 'new fanged' operation to repair her birth defect that left her with a hip dysplasia; which will enable her to walk without her crutch that she's used her whole life. She breaks down in one scene and hugs her crutch that she connects with her identity and struggles to accept that she will give it up... I'm going through that same parallel too; I'm replacing my hearing aid that barely works for a bionic equivalent, that may (or may not) offer a much more superior (I genuinely hope!) level of sound. A sound that may change my perspective of life, that will increase a lot of opportunities, possibly open a lot more doors... it is a huge change to consider.

8 days... that's a lot of thinking!

It's all happening sooner...

Last Monday I went into Beaumont for my final assessment, this was supposed to be the assessment by which future post-op comparisons would be made... but it didn't happen. Instead I had the most oddest waiting room experience ever!

How many of you have walked into a waiting room then engaged in a group conversation with everyone in the room? When I attend my GPs surgery, everyone usually sits in silence...

As I arrived in the CI department reception 15 minutes early, before being directed to the ENT section two doors down. Waiting the seating area, I met another Deaf girl I know, I had spotted her at the Lunch so the surprise wasn't there. As we fell into an easy chat, she claimed to be just starting her journey but the more she talked, I started getting it in my head that she was going to get her operation date today... as I shared my thoughts, she was pensive - that would be brilliant news but she didn't want to get her hopes up.

Two more patients joined us, one I knew - Karl got his CI in July, but was finding it tough to get used to the CI sounds since his switch on 2 months ago. The other was an adult deafened guy that Karl introduced me to, who had his operation on same day as Karl. Both of them were back in for 2 month check/re-programming. It was interesting listening to them compare notes, as us girls quizzed them on various CI aspects. Both found the operation easy, and got over it quickly.

Two more people joined us, I recognise one of the faces from the group meeting last August, as we acknowledged each other he asked if I had my operation date yet, as I replied, he beamed "Hey, I'm getting my operation on 18th November too!" The other person was a bigger shock for me - it was a work colleague! LOL! She isn't a member of the Deaf community but a terrific advocate for the Irish Hard of Hearing Association. As I confirmed my date, she added that her date was set for 11th November " ...and I've hundreds of questions to be answered here!" patting a folded sheet of paper. Wow, she came better prepared than me. I've tons of questions but when I get in that room - my mind goes blank...

By the time the doctor called me in 35 minutes after the appointment time - there was a great group conversation buzz going on in that waiting room!

As I entered the doctor's room, she asked to check my ears, then I had to sign a consent form for the operation "...later on this month" WHAT?! Actually I'm scheduled for 18th November... "We have a new surgeon, means we can do twice as many adults, so we have brought some of the operations forward including yours..." I was stunned! That can't be right... I've a HUGE workload to get through the next month, I can't afford to have my operation this month.

Pressing for a definite date, the doctor shook her head as the Surgeon came into the room, Dr Viani answered that Jacki will be calling me later with my new date. She asked if I had my Meningitis Vaccine yet. I hadn't but planned to get it 'this week', as this vaccine was supposed to be received 'at least 4 weeks before the CI operation' I queried if this week would still be time enough and Dr Viani reassured me it would be fine. I asked if I was getting a hearing assessment, she shook her head, they had several assessment results going back years that they can use as comparision.

As I left, I was wondering how will Jacki contact me?! Email? Text? Bewildered, I headed straight to my GP to book my vaccine. The GP offered to fit me in that afternoon - brilliant. I hardly felt it, but boy, my arm was really sore the next day!

No news from Jacki, and by Wednesday I was getting worried, so I sent her an email. She replied immediately apologising, explaining that she assumed I had been informed by Dr Viani last Monday... then the bombshell - the operation was to take place on 21st October. I panicked, the 21st was the start of a very busy week in our office and my sister's baby was being christened that weekend. I replied begging for an alternative date, and Jacki offered to ask another person to swap dates with me.

I spent two sleepless nights worrying about it (that's how serious our work schedule is!) it was Friday before I got the confirmation of the new operation date - Wednesday 4th November! Phew! Now to inform and prepare my work for the disruption of my absences... just hope my manager is in a good mood this Monday, LOL!

CI Adults Luncheon

The CI Team hosted a special 'Luncheon' for all the CI and CI-to-be Adults on 26th September to coincide with their 15th anniversary.

It was a great opportunity to hook up with CI adults and get more information on the process and gather various individual experiences. Throw in a scrumptious raffle, a few Irish Dancers, one generous buffet, an introduction to the new surgeon and the simple Luncheon became a mad hatters tea party (in my part of the room that is!) as most deaf people ignoring the speeches (no ISL Interpreters/speed text available!) the dancers (some CI'ers complained that the music was just noise to them, plus it went on too long... 65 minutes!) and us calling for the expected coffee that never came - our serving staff only had tea left by the time they got to our table, they promised to come back with coffee but... none was forthcoming still it was a strange but enjoyable day!



I met some Deaf people there, like me, waiting to get the CI. For some seeing me was a total shock, one of my good friends did a double take at the sight of me, and just stared at me til I asked if my mascara had ran down my face or I had something gross stuck to my chin! 'What are YOU doing here? You never told us you were going for a CI!' she ranted. Off we went to find a table together and swap stories. Another Deaf CI'ee joined us, not only had she a CI herself but 3 of her children were also implanted; she confessed that herself and her Deaf husband had a 'very tough time' with the Deaf community after allowing CI team to Implant their daughter 6-7 years ago, and still gets the odd criticism now thrown in her face and then. Hubby was evaluated for CI but doesn't meet the criteria "...yet!" she's also considering getting a Bilateral CI (Bilateral CI is where you have a CI on both sides) but the fact that it took her a long time to 'recover' after the CI operation is putting her off somewhat. Speaking of Bilateral there was a man there who was Bilateral Implanted; I was totally stunned seeing him - I remembered him and his 'then girlfriend' as one of the most outspoken critics of CIs years ago... what a turnabout for the books! When I asked him about the benefit of having two CIs over having one CI, he ignored me and walked over to the next table... guess he was afraid I'd bring up the past and embarrass him? Hmmm!

As I sat at the table, a suave young man proffered his hand and introduced himself 'Hello, I'm Conor...' as I gave my name I noticed he was sitting with another young Deaf CI'ee who sometimes plays with Irish Deaf Poker. I asked if he was involved with the Deaf Community, but Conor shook his head. He knew the other lads via the CI programme, he had been mainstreamed and had just finished his masters degree in Computer Applications. He had no sign language. We got talking about his CI experiences. Conor had no difficulty hearing the speeches, and everything going on about him, when I lowered my voice he picked me up fine. I was amazed to discover he only had the CI 5-6 years, but it wasn't all rosy he admitted. His 'hearing journey' took a 'long slow 3-4 years' to peak to the level where he is now with 85% word recognition. His only regret was that he didn't have it before he started second level, as some of the issues he had would have been lessened. We had a great conversation going all throughout the meal.

I was delighted to catch up with another 'mainstream Deaf' who got the CI 2-3 years ago. Like me, Cathy (pictured below) only 'discovered' the Deaf community late when she was in College, and had concerns with this when getting the CI. While she did noticed a 'subtle change' in some Deaf people's attitudes after her CI she refuses to let it bother her. Personally I think her sports status helped big time (she's the Top Lady Golfer on the Irish Deaf Golf Team with several awards under her belt, plus she was on the Deaf Women's basketball team at the height of their success on the women's premier league) plus her degree from Gallaudet garnered enough brownie points to minimise any damage. Cathy is happy with her CI but pointed out that there were several people who were far more successful than her, pointing out a very confident, Californian-looking individual to me. He was to her immediate right holding court on her table with a group of young girls hanging on to every word. As I joined the conversation, I discovered that he only had his Implant switched on February 2009 and achieved 75% word recognition in quiet environment and 61% in noisy environments at his last assessment, compared to his previous score of 39% in quite mode and <10% pre-CI - very impressive results! I wished I had asked more about his 'Journey' - was he late deafened, born deaf, hearing aid user, etc. He did admit that music was still strange, Cathy agreed with him "It's just noise... "

Moving on to the next table, I was delighted to bump into Maria O'Gorman from Limerick. I first met Maria 6 years ago on a Deaf Information Roadshow I did in Limerick. Maria had lost her hearing 3-4 years previously and was not getting any benefit from hearing aids. She was finding life very tough at the time, had lost her confidence, found it hard to keep her speech level and was learning ISL to enable her to communicate and finding it hard to get used to it. Today's Maria was a totally changed person! Brimming with confidence, speaking clearer and praising her 2 year old CI for it all! "I can follow the radio in my car no problem!" Wow... I want to be able to do that too!

Spotting Fiona from the CI meeting on the other side of the room, surrounded by an audience. I was disappointed not to be able to say hello but there was too many people around. I counted 20 tables with 10 people at each... I must to text her to apologise in case she thought I was ignoring her!

Bumping into a nervous young man, on discovering I was waiting for my operation, confessed the reason for his nervousness - he is facing the operation NEXT WEEK! Wishing him the best of luck, he asked me if I had made a decision on which implant to go with? Advance Bionics (AB) or the Australian Cochlear? I admitted that I hadn't given it any serious thought but I would like to talk with someone with an AB implant... he admitted that he was looking for someone with AB too! I left him to his search.

Apart from some of the initial CI Team who came back especially for the occasion, the guest of honours also included the first man/woman adult-CI operated on in Ireland by Beaumont CI team. But as far as my memory serves: they don't have the distinction of being the first person in Ireland, that falls to Melanie O'Grady - who was the first Irish person to go to Manchester and get an implant 20 years ago. I was good friends with Melanie before we lost touch as she moved to UK to study then on to USA with her new husband. I recently discovered her on Facebook, that's the amazing thing about facebook... finding long lost friends!

Saying my goodbyes to the Team, I had a brief chat with Gary Norman (in photo holding microphone) as I was leaving. Gary was the first CI Team member I met, a really nice guy - easy to talk with. He assigned me my first digital HAs then broke the news that I was 'outside the criteria' way back in 2005. I was sad to hear he left to go home to the UK, it was lovely to see him again! We had a brief conversation about the Deaf community, are they more accepting of CIs now? Might be best to ask me again after my operation Gary! LOL! I hope he returns to Beaumount some day!

Beside him was an man in his mid-50's who asked me 'How are you getting on with your CI's?' replying that I hadn't been implanted yet, adding my operation date in November. He beamed at me "I have my implant 14 years! And there's not one day that I don't regret it! Nor will you..." I hope so too, Sir!

In the Ladies, just before I left, I got talking to a young pretty girl in her mid-20s. Susie just got switched on 4 weeks ago and declared it 'too soon' to comment on the benefit of her CI. She is 'hearing everything' but finds it hard to place the sound, to differate between the words being spoken and make sense of what she is picking up. She also showed me her scar, which had completely healed and looked really neat! We exchange numbers, I look forward to hearing how she's getting on...

Going home I felt more positive about getting the CI... one common thought I got from them was the operation itself was doodle, apart from one woman. No one mentioned any problems with the actual operation but the Switching On week was 'tough'. They were 'tired', 'emotional', 'stressful, and/or 'all over the place - couldn't concentrate on ANYTHING! Advance warning to take time off work for this I guess.

Strangely enough apart from the people I shared a table with, the rest of us Deafies practically avoided each other and sought out the CI'ees to hear their experiences . A few days later I bumped into one of the Deaf people from the Lunch the conversation went like this:

- Hey! So sorry I did see you at the CI lunch but I was too busy getting information to talk to you, then I had to rush home...
- That's okay, me too!
- Urm... do the (DEAF) Community know you going for a CI?
- Some do, the rest will find out soon enough I guess
- Ah... okay... well I haven't told anyone that I'm on CI list yet...
- Don't worry, I won't say anything!
- *big relief on face* Thanks, I really appreciate that... so when is your CI?
- 18th November...
- Wow! THAT soon? I just had my first appointment earlier on this year... how long did it take you from then til you got your date(of operation)?
- I was referred by my GP in 2003!
- 2003???!!! SIX Years??!!! My... you kept that quiet!
- Yeah... I may talk a lot, but I am VERY GOOD at keeping secrets!

LOL!

To be or not to be? That is the DEAF Question...

"It is not the extent of hearing loss that defines a member of the Deaf community but the individual's own sense of identity and resultant actions." (Anna Mindess, 2006)

While general definition of deaf is "lacking or deprived of the sense of hearing, wholly or in part" we use Deaf with a capitalized 'D' we signify those who belong to the cultural community of Deaf people. Big D Deaf Communities do not automatically include all people who are clinically deaf nor does it exclude hearing people either.

To be regarded as a member of the Deaf Community you are either: prelingually deaf (deaf from childhood)and attended one of the deaf schools or you use Sign Language as a main form of communication (in Ireland we use Irish Sign Language - ISL) or you were born to Deaf parents and can claim the native sign language as your first language; and you possess social and cultural norms that differ from the surrounding hearing communities. There is a collective sense of pride and identity of belonging that we all share as members of the Deaf community.

"Deafness is an identity, a community, a culture, a mode of being. You can be deaf and not Deaf, or alternatively, considered Deaf but not (be) deaf." (Inside Deaf Culture, 2007)

Carol Padden reminds us that a person is only a member of the Deaf community if he or she "identifies him/herself as a member of the Deaf community, and other members accept that person as a part of the community." (Padden, 1978) It also boils down to the fact: if you follow the 'rules' of the Deaf community you are 'accepted', but if you don't, you risk being ostracised by your Deaf peers. For many Deaf people already cut off from the hearing community by the barrier of communication, this fear is real: don't upset the equilibrium within the Deaf community or you may be left in limbo.

Our Irish Deaf Community is made up of a mixed bag of individuals, the Community comes with its own social standings to rival the cultural caste system in India!:

1. At the top are the extended Deaf families with 2/3/4 generations of Deaf people claiming the top 'Elitist' rungs in the Community, constantly displaying the arrogance and nous to go along with it.

2. Just below them is the radial 'ofDeaf, byDeaf, forDeaf' Deaf advocates that rage at the disability tag, and INSIST on pure ISL, lobby for ISL information and model themselves as the Deaf Culture Police stamping out Audism. You do not cross them. Ever.

3. Next are the have children of Deaf adults (CODAs) that evolve into ISL Interpreters/Deaf Community Workers in adulthood and retain the same respect due to 'elitist' Deaf groups. They are passive activists, they prefer to stay neutral on controversial topics.

4. The older generation use Total Communication (no oral communication at all, no new-fanged ISL here, thank-you-very-much!) while dominating the deaf club scene - quizzing anyone who visits with genuine curiosity and phenomenal fingerspelling skills that faze the most confident level 4 ISL student.

5. Then there are profoundly deaf 'oral' (talking) people who 'only use ISL for information' but model themselves of the hearing community e.g. liking music, playing with hearing sports clubs or going on about their 'HEARING' friends. And yet are still revered as bonafide members of the Irish Deaf Community by virtue of their 'Bovvered' attitude.

6. We do have Deaf ISL-signers with mild-moderate hearing losses who refuse to wear hearing aids although it would benefit them; they are not radicals they just go with the flow and milk the system for what its worth, accepting the 'poor disabled me' tag.

7. Next is the mainstream-educated deaf people who struggled with identity in the 'Hearing World' before discovering the Deaf Community in their late teens/early twenties and are ridiculed in their attempts to master ISL and gain the acceptance of their Deaf community peers.

8. Then there's the late deafened people who embraced ISL as their 'new' form of communication, socialise in the deaf community out of need, who are treated same as mainstream-educated deaf people, with disdain but choose not to let it affect them.

9. Last we have the 'Deaf Groupies' - a group of hearing who went out of their way to learn ISL, socialise/mix with Deaf people, marry or live with Deaf people, become ISL interpreters or work in the Community even but will always be considered bottom-feeders.

There is a lot more to the Deaf Community than this but I am just focusing on the CI perspectives within this group. As you can see, there's no 'place' for a CI individual in this list. You will not find a CI person in the first three categories. Ever.

Some of the younger recent Deaf school leavers who were among the first batch of CIs done in Ireland, have the CI but they play it down: 'it doesn't work' they moan, when in fact it DOES but they are not going to admit it.

The group listed at 6 would not meet the criteria for a CI at all; but it doesn't stop them from telling all and sundry how they were 'offered, begged, bullied' into accepting a CI but naturally they 'Refuuuuused!!!' with one or two adding an exaggerated version of how they 'punched, thumped and fought' their way out of the place!

Seventh Group (which I fall into) will really wrestle with the dilemma of getting a CI. 'If we get an Implant: will we still be accepted by the Deaf community? Will all our hard work in getting accepted be in vain? Will we have to start all over again? Will our identity be impacted?' These are all valid concerns... these are MY main concerns too.

Will I still be regarded as Deaf? Will I still retain the respect (begrudgingly awarded, I have to add) from the Elitist crowd? Or am I throwing myself back into the limbo mode I was in age 17-20 again?

In America there's a strong rejection and hatred of CIs within the American Deaf Community and this rejection forms part of their cultural 'core beliefs'. When you visit the Deaf.Com website the first thing that hits you is not the flashing news banner, but the COCHLEAR WAR!

On entering the link, there is a statement that looks reassuring that they do not judge Teenagers or Adults that chose to have a CI but the underlying context is clear - you may be 'our friend' but beware: you are also 'choosing' to leave the Deaf Community by 'your own free will' in getting an Implant.

Whoa... Strong words!

They go on to describe how CI children grow up to join the Deaf Community, learn ASL and reject their implants. They also highlight Adult 'failures' and 'disappointments' with their CIs while lambasting media representation of CIs. Hardly reassuring for someone like me!

"Let it be said right away that we have no objection whatever to deaf
teenagers and adults who choose cochlear implants for themselves. They’re making their own decisions, understand the risks involved, and undergo the surgery and post-surgical process voluntarily. We do not summarily reject these people, nor do we consider them "hearing wannabees" or defectors trying to deny their deafness. We count some of them among our friends. Those who choose to reject the Deaf community, or who deny any affiliation with it, are doing so of their own free will. That’s fine with us. " (Cochlear War Website, 2009)

Ah c'mon... This is unfair! I have no plans to reject the Deaf Community... I am NOT going to give up ISL... I will not be come hearing, even with the CI I will still be, and always will be DEAF.


Thankfully for every yin there's a yang; the American Inside Deaf Culture website gives information impartially without any bias towards Hearing Aids or CIs in anything other than a neutral positive tone. There also a reassuring growing trend of signing Deaf undergoing CIs judging the huge amount of personal blogs on this subject out there already.

Dr Paddy Ladd (another mainstream Deaf) in his book "Understanding Deaf Culture: In Search of Deafhood" highlights the struggle to belong, the unique journey to discovering and understanding themselves as a Deaf person. Ladd coined DeafHood as the key concept to expand the Deaf Community to include the various segments on the fringe of the group including Clued Speech users, wholly oral (non-signing) deaf and Cochlear Implant users.

“Deafhood is a process by which Deaf individuals come to actualize their Deaf identity, positing that those individuals construct that identity to their heightened forms by various factors such as nation, era and Class.” (Ladd, 2003)

There are many definitions of DeafHood out there but for me this one by Rob Rice sums it up beautifully:

"....Deafhood is about the introspection and process a deaf person undergoes to accept themselves as being Deaf. It is a detailed, documented process that will undoubtedly help deaf people and the parents of deaf children rationalize decisions and have conversations that concern deafness. Related decisions and conversations could include educational choices, communication and perhaps maybe even the cochlear implant procedure." (Rice, 2006)

Going on Rice's definition it seems I am currently in a very valuable process of DeafHood in my CI journey. There's a few key stages I need to 'travel' and explore:

1. Discovering, thinking, rationalising my need for the CI. That's what this blog is for!

2. Incorporating the belief of positivity on the CI into my core values. Finding other people who have CIs and get some feedback; check out other CI blogs before/after progress

3. Re-developing my Deaf Identity to include the CI. I am unsure yet how this will happen, as this process will technically begin when the CI is switched on, and will not be completed for a few year. Til I know my limits/my CI abilities/improved hearing etc.

4. Finding common grounds within the Deaf Community to ensure acceptance as a CI person within the Irish Deaf Community. This will be a tough one to crack; the CI will always be viewed with negativity. I have started this already by informing key members of the Deaf community of my decision to get a CI... only time will tell!


In a nutshell, the Deaf Community distrust and dislike the medical view that deafness is something to be fixed. They see CIs as part of that medical model, they see CIs as a threat to the future of their culture, they regard people with CIs as non-Deaf. This this the emotional dilemmas that has been bothering me since I agreed to having the CI. I was mainstreamed, never realised taht a Deaf Community existed til I was 17 years old and my Deafhood journey to 'acceptance' and mastering of ISL lasted seven-eight long, painful years, and there's been several times when I feel my journey is still not done!

I've accepted that this CI process is a necessity for me, means that I'm entering a new phrase in my Deafhood journey: it will be painful, maybe cruel, definitely tough but I have every faith that I can do this!

Which Ear to Implant?

I've always said from the beginning - I will only accept the CI if they implant my left ear. My reasoning was always along the lines of - well if it doesn't work (an inserted CI will destroy what little residual hearing you have left) I wouldn't not be bereft of speech.

Granted the left ear has the worse word recognition score, it also hears all the low environmental sounds. When I take my left hearing aid out: I miss the phone ringing on my desk, I miss the beep the Eazypass Scanner makes as I pass the Toll Readers on the M50, I don't hear the warning noise my car makes when I leave my lights on... The right ear always picked up the speech tones and high frequencies. If I had a choice of one ear to keep it would always be my right one. Until the next time I leave the lights on in my car that is!

I always assumed this weird notion that my right ear was my 'best' because I was pre-dominantly right-handed. Although I use a right-foot first and right arm/hand motion for signing, it wasn't until I had my eyes tested that I realised I was wrong! My right eye was slightly worse my left... and in the hearing tests my left ear outshone the right with slightly higher readings in the low-mid frequencies.

But several links including this one, in Ballenger's Otorhinolaryngology Head and Neck Surgery, advocates implanting the 'better ear' over the weaker counterpart on the grounds that the dominant ear with more residual hearing exhibits a better nerve reaction with a 'possible' higher success rate for CIs.

And nearly 95% of the people I'm meeting with a CI are implanted on their right not the left! Eeek! Am I making the wrong decision here?

Then I found an opposing school of thought that poohs this idea that a CI works better in one ear over the other. Howard Francis MD reported in the 'Ear and Hearing' Journal August 2005(yes... there IS a monthly journal that is published specialises in Hearing and Ears!!!) that the brains ability to distinguished electronic signals sounds does not matter as to which ear is implanted plus preserving the 'better ear'

"There is growing evidence that the amount of hearing in an ear prior to
surgery is unrelated to a patient's ability to interpret speech using an
implant, says Howard W. Francis, M.D., lead author of the study and an
associate professor of otolaryngology-head and neck surgery. Therefore, the
better-hearing ear could be saved for the continued use of a hearing aid or
future technology to complement a cochlear implant, Francis says."

Small reassurance there! All scientific reasoning aside there's several minor issues that factor in my decision to pick my left ear:

• I drive a lot, which I love, but I cannot have a conversation with someone in the car unless I'm looking at them. My children often get frustrated with my inability to communicate with them. We drive on the right hand side, so having a CI on my left would optimise hearing... but will it be the opposite if I am a passenger? Guess I'll just have to position myself behind the driver!

• I sleep on my right side, there's a strobe house alarm/fire warning alerting light in my bedroom and I have always slept 'facing' this light (the CI will be switched off and removed at night) This probably won't matter in the long run, but in the early days Post-implant a good night's sleep vital to me and sleeping on the scar will be difficult. I've a fear that if I sleep on my right the light won't wake me if I have my back to it... I don't see myself changing this habit unless the position of the light gets changed... no matter how hot the guy sharing my bed is!

• In my work place my desk is to the far left of the room, with all the bustle/chatter on the right. I already find this bustle/chatter a distraction, a CI on the right would be a killer to my concentration!

• And there's the possibility of a second implant (or better) in the future... it would make more sense to start with the left then move on to the right... I'll worry about the strobe light if and when this happens!

Hmmm. Yes, I'll take the CI on my left ear... pretty please!

Decisions! Decisions!

"As a fair warning, its going to be an emotional process so any ranting and
raving isn't intended to milk for sympathy but just more of an outlet. So
apologies in advance if I sound like an emotional wreck ;)"

from: Nikki in Perth http://ci-borg.blogspot.com/2005/11/how-it-will-work.html

Nikki has worded it better than I! I've a lot to think/do before I have the Implant... its starting to keep me awake! I'm getting emotionally over-stressed about everything!

I have to make a 'realistic' list of sounds I hope to hear after the CI. This helps with the AR work, gives goals to work towards, etc. But how do you know what sounds you want to 'hear' if you have no idea what the sounds are?!

I have to decide if I want a CI in the right ear or the left? The team have left it to me to choose. I'm favouring the weakest ear (left) for obvious reasons, but there is this school of thought that its better to use the 'stronger' ear.

Which implant do I choose: USA's Advance Bionics 'Harmony' or the Australian Cochlear 'Freedom'?

Then there's the morbid stuff to sort out like getting my finances in order, finalising my will (very important!) and leaving special ensuring everything is in place in the event of my demise. I know there's only .1% of that happening during my CI but the worry is still there... as a single mum to two children age 4 and 11, I have to be prepared for EVERY possibility. That is one of my biggest fears: dying before my children have grown.

Waking up with bad dreams about the latter isn't helping me either! The lack of sleep and the distraction is affecting my work too...

AAARRRRRRHHHH!!!! Decisions! Decisions!