Second switch on last Friday was more eventful than the first.
Hooking me up to the computer, Jackie started by going through all the electrodes again, upping the sound to a higher level 'just tell me when it is comfortable...' she said starting at electrode 22, then 21, then 20, going all the way back down to 2... I discovered Electrode 1 is perma-off as during the testing after the operation, it set off the facial machine. No one told me that! When it was switched back on, I was expecting things to be higher more definition, but disappointingly it wasn't. It was basically just the same just... louder. Trying to adjust a few things Jackie tried a few combinations but I wasn't noticing any major difference only the voices did go from squeaky to underwater to monotone-nasal... urgh! Jackie decided to try out a few sentences and I was to repeat was I hearing, counting the number of correct words Jackie announced I was hearing 12% using my CI. I was so shocked! Pre-CI with the hearing aid I was getting 21% in my left ear... a drop from 21% to 12% wasn't how I estimate myself to be going.
Sensing my disappointment, Jackie had an idea, and switched off the implant to try a different map. When she switch it back on, I swear, I heard her say almost CLEARLY "Well, how is that?" the second she spoke I was about to respond excitedly when my entire left side of my face just crumbled into a gigantic twitching frenzy. Jackie went pale "oh sorry!" and immediately switch the implant off. "Hmmm, there's an electrode that is causing trouble, we need to find out which ones and isolated them." But my time was already up and I had to go to AR, Jackie decided to leave it til the next appointment.
Before she left, I was back on the new map that we had measured out. She switched me back on the old map from the first switch on, it really hit me just how low the old one was in contrast to the new one! Hmmm, okay that has got to be positive right?
Heading into AR with Catherine the speech therapist, she asked how I did in Mapping session, discussing the 12% score I got for 5 sentences. Catherine pointed out that I was only '4/5 words' short of 21% and not to be too hard on myself, apparently it was perfectly normal for new CI'ers to drop back <10% and grow back up and beyond their score after a few months. Her best advice to me was to wear the implant as often as I can (which I am doing) and follow the listening exercises as much as possible. This will require a lot of free time that I am already tight for coming up to Christmas. I got an audio book to listen to with the book to read as I follow the audio, the plan is to train myself to recognise the vocal sounds. Sounds easy enough, but the hardest part is finding the time to do it... I have a hard enough time keeping a blog updated!
A next appointment was sourced for me the following Tuesday to find the rouge electrode. The re-tuning and mapping started again, each electrode was tested, higher and higher. By the time we got to the last electrode (2) I motioned it was comfortable to go higher, then all of a sudden my left eye started to twitch manically. It wasn't sore, just involuntary twitching. Jackie brought the level down and made a note on it in the file - Electrode 2 (E2) will not be going any higher in the future. A new map was created for me with E2 switch on low and another with E2 switched off completely and a third with E2 off for quiet places. Plus a new fourth programme with auto-sensitivity that adjusts the sensitivity in noisy places.
I went back to work on Monday, the clicking keyboards, the whirl of the photocopier-printer had me distracted. But the amazing thing was in the kitchen, when I went down to join two colleagues for lunch, there was a loud tapping noise. I couldn't join in the conversation at all it was so loud... Finally I copped on it was the clock on the wall! I had never heard that before! Telling my colleagues - both couldn't hear it at all - they were amazed that I found it annoyingly loud and distracting!
Like people's individual footprints noise, I have started to realise that vehicles have their own individual sound too. Some of them I actually hear them before I see them others they have to be on top of me - I'd see them before I hear them. But voices are still squeaky/cartoonish - I've given up on trying making sense of speech... it'll happen sometime I hope!
Saturday, December 19, 2009
Thursday, December 10, 2009
First week's over...
I've worn my CI every day since switch on, the buzzing 'hum' is still there, with horns and other consistent noises. I'm getting used to it... I think(!) Voices are just like having conversations with Donald Duck!
There's been no major progress this week, apart from weird moments like standing at top of queue for toilets in a pub - hearing the click of the lock turning in the doors... discovering the keypad on my mobile phone still beeps although I have the keypad sound switched off. The sound of footsteps in public places - there's a general bustle of noise but the clearest thing coming above it is footsteps. As the week went along, I started to 'realise' that everyone seems to have their own different walking sound!
Straining to make sense of the sounds this week was really tiring. I took the week off work on the advice of Jackie that I would need it... she was right, I did need it. With less than 3 weeks to Christmas - I'm trying to cram in all my Christmas shopping while I'm off too. I've had no time since Halloween to do anything - its all been one mad rush... between that at the CI, I'm totally exhausted.
I'm getting LOADS of Deafie asking me how the CI is working, trying to be neutral as it is too early to pass judgement just yet. If you don't read this blog - don't bother asking as 'Ah its too early' is going to be my stock answer for the next while!
My 'second switch on' appointment is tomorrow to be followed by my first aural rehabilitation (AR) appointment. The aim of the AR appointments is to accustomise to the new sounds and train myself to recognise sounds better.
I am supposed to bring in a set of goals to work towards. I had a set of goals but after a week on the CI, I am not as optimistic in producing these in AR tomorrow! Have narrowed the choices down to:
1 - Use phone
2 - Follow the banter
3 - Hear the radio
Eeek... I'm still thinking I'm being tooooo optimistic, especially as I'm barely making sense at it is. Here's hoping the second switch on produces a more positive sound.
There's been no major progress this week, apart from weird moments like standing at top of queue for toilets in a pub - hearing the click of the lock turning in the doors... discovering the keypad on my mobile phone still beeps although I have the keypad sound switched off. The sound of footsteps in public places - there's a general bustle of noise but the clearest thing coming above it is footsteps. As the week went along, I started to 'realise' that everyone seems to have their own different walking sound!
Straining to make sense of the sounds this week was really tiring. I took the week off work on the advice of Jackie that I would need it... she was right, I did need it. With less than 3 weeks to Christmas - I'm trying to cram in all my Christmas shopping while I'm off too. I've had no time since Halloween to do anything - its all been one mad rush... between that at the CI, I'm totally exhausted.
I'm getting LOADS of Deafie asking me how the CI is working, trying to be neutral as it is too early to pass judgement just yet. If you don't read this blog - don't bother asking as 'Ah its too early' is going to be my stock answer for the next while!
My 'second switch on' appointment is tomorrow to be followed by my first aural rehabilitation (AR) appointment. The aim of the AR appointments is to accustomise to the new sounds and train myself to recognise sounds better.
I am supposed to bring in a set of goals to work towards. I had a set of goals but after a week on the CI, I am not as optimistic in producing these in AR tomorrow! Have narrowed the choices down to:
1 - Use phone
2 - Follow the banter
3 - Hear the radio
Eeek... I'm still thinking I'm being tooooo optimistic, especially as I'm barely making sense at it is. Here's hoping the second switch on produces a more positive sound.
Switch On... OMG!
Meeting Fran outside Beaumont at 1.45pm, she was coming in with me to film my video diary, I was running late and had two pieces I wanted to film before the 2pm Switch On appointment!
It was 2:15 before I got there - we were racing through the PTCs before heading down to the CI department. Jackie must have been thinking how odd I was for not being there early, never mind on time, hoping to get switched on sooner, and went off for a break! I had to wait 20 minutes before she came back... LOL!
I was brought into a room I had never been in before, and handed over the big yellow Nucleus Freedom box that I was given in the hospital. Talking all the stuff out, Jackie went through the list and noticed a few things missing, then went off to the store room to fetch spares.
She started with determining the magnet strenght I needed. "This one is the average adult size" Jackie explained waving a packet with the number 2 on the front. But it wouldn't stick, so off it came "let get number 3, you have very thick hair..." but 3 was no good either. Jackie opened a 3rd packet with the size 4 in it. I lifted up my hair and it stuck initially, but as I let my hair fall down the magnet came off! Jackie just laughed "well, there's one more size if that doesn't work you might have to have a bald patch!" and off she went to rummage through the store room again. Thankfully the last one worked... I think I would have cried if I had to wait til I had my bald patch before having the switch on!!!
Once the magnet was firmly in place, the processor was hooked up to the PC and the tuning started. The tuning was basically a series of sounds similar to having a hearing test, and I had to indicate when the level of each pip (that's what they sounded like to me - pips of noises) was comfortable. Some of them I was literally jumping at the sensation! Ow! Ooooh! Eeek! After only adjusting 5 or 6 of these pips Jackie turned to look at me... "Okay? This is it - I'm switching you on now!" I was stunned...the tuning was over already? That was really fast!
The switch on was electric, the power was overwhelming, it was like silence then a BooooOOOOOOOOOOOM! Like sonic waves going through my brain... The first think I noticed was a loud hum.
"eeeellll? Waaan do yoooo tiiiin?" Took me a moment to figure out that Jackie was talking to me. The sound was nasal, cartoonish and just not 'right'... as Jackie continued to talk to me I was getting more bewildered. WTF was this?!!!
"Do you hear a buzz?" I lipread her, the sound wasn't matching what I was hearing but I trusted my lipreading skills mkre right now... "Is the computer making a noise? Like a hum?" I asked, Jackie shock her head "no it isn't, the hum or buzz is the implant - its the world. The world IS noisy! Don't worry you will get used to it eventually!" used to it? OMG! It is horrible - I don't think I like this constant humming at all!
"Can you hear me talk?" Jackie continued, the cartoonish-underwater sound continued to evade my senses. Telling her what she sounded like, she nodded and adjusted a few settings on the PC... "How's that? Is that better?" hmmm a little - but you still sound weird! Cue laughter all around...
Fran continued to film us silently. Catching the camera, I signed into it "oh my god - this is just... NOT what I was expecting! Its nothing like what I had before... " Jackie asked how I felt, I was honest - its not perfect but I came in expecting nothing more than the same hearing I had before... nothing more. Jackie offered to test me with 3/4 sounds:
aa
ee
oo
sh
ss
I got more of them right(!)
Someone knocked on the door and I literally jumped, what was THAT?! Seeing Jackie turn her head to talk to the person at the door, I copped on that I had just heard knocking. But it didn't sound like knocking! Screechy-scratching more like, interspersed with that consistent hum... Jackie did a few more adjustments then announced that I was finished 'for today'... what?! She's sending me home with this hum that had started developing hooting and whoosing noises... urgh! I was certainly NOT impressed with it at all.
Reminding myself that I'm a long way off from perfect hearing and it will take time... that no CI'ee I met ever enjoyed the switch on, in fact Fiona pointed out the first 3 months were "awful" for her. Just have to grit my teeth and get on with it... it can only get better.
Asking me what my plans were for the week (as my next appointment was in 6 days time...) I mentioned I was going to the pub later for my friend's farewell do before flying back to her new home in Oz. Jackie then created a 2nd map for 'noisy places' encouraged me to use it in pubs and busy places. Along with a louder programme for 'quiet places' I had the base map plus another with two electrodes on different settings. And was sent packing with the bare supplies and a card outlining the various programmes on the processor and the lenght of time the batteries would last - 39 hours, just over 3 days.
Once outside, the hum wasn't as noticeable, there were other sounds but nothing was making sense. Fran asked if I would explain how I felt the the camera, a security guard interrupted us asking if we had permission to film, waving the signed slip from the Hospital Director he apologized and toddled off - I was so distracted signing to the camera because I kept hearing his footsteps as he walked away!
I drove to my friends' house in Swords for coffee, confessing my disappointment, they reminded me that getting new hearing aids is like that. We all need time to adjust "You need to give it time" very true. Vowing to keep the implant in as much as I can, the hum was still there, but every time it got noisy the hum went! Weird!
As I drove to town the noises in the car were heightened; the indicator was so loud, so sharp! The sound of the gears changing was scary, even though I was using my clutch - it still grinded as if I wasn't!
Parking my car 500 yards from where I was due to meet my friends, I had to cross Westmoreland Street, what an experience... with all the street noises - I started to feel overwhelmed, it felt like a rugby scrum was coming at me from all corners! I kept looking around me (and above to the sky too!) expecting to see something charging at me...But no, nothing! Walking down the street, I jumped as a group of lads passed me by talking loudly. It was as if they were shouting directly into my ear!
Meeting the girls in Starbucks while waiting for our table to be ready in Montys, I couldn't hear them talk at all - the noise was so great, it was drowning out their voices. I heard a chair being scrapped back - the sound came clearly above 'the noise' and registered itself with me first before I turning my head... I saw the owner get up and move the chair again. Yes it was definitely that! Wow!
After our meal we went to the Globe bar and by 1am I was too tired and overwhelmed by the noise of the music (it wasn't music - it was just 'ner-ner-ner-ner' noise!) and went home.
Taking the implant off that night I had a small tinnitus effect that died down very quickly. I keep reminding myself that its only early days... lets give this thing a fighting chance!
It was 2:15 before I got there - we were racing through the PTCs before heading down to the CI department. Jackie must have been thinking how odd I was for not being there early, never mind on time, hoping to get switched on sooner, and went off for a break! I had to wait 20 minutes before she came back... LOL!
I was brought into a room I had never been in before, and handed over the big yellow Nucleus Freedom box that I was given in the hospital. Talking all the stuff out, Jackie went through the list and noticed a few things missing, then went off to the store room to fetch spares.
She started with determining the magnet strenght I needed. "This one is the average adult size" Jackie explained waving a packet with the number 2 on the front. But it wouldn't stick, so off it came "let get number 3, you have very thick hair..." but 3 was no good either. Jackie opened a 3rd packet with the size 4 in it. I lifted up my hair and it stuck initially, but as I let my hair fall down the magnet came off! Jackie just laughed "well, there's one more size if that doesn't work you might have to have a bald patch!" and off she went to rummage through the store room again. Thankfully the last one worked... I think I would have cried if I had to wait til I had my bald patch before having the switch on!!!
Once the magnet was firmly in place, the processor was hooked up to the PC and the tuning started. The tuning was basically a series of sounds similar to having a hearing test, and I had to indicate when the level of each pip (that's what they sounded like to me - pips of noises) was comfortable. Some of them I was literally jumping at the sensation! Ow! Ooooh! Eeek! After only adjusting 5 or 6 of these pips Jackie turned to look at me... "Okay? This is it - I'm switching you on now!" I was stunned...the tuning was over already? That was really fast!
The switch on was electric, the power was overwhelming, it was like silence then a BooooOOOOOOOOOOOM! Like sonic waves going through my brain... The first think I noticed was a loud hum.
"eeeellll? Waaan do yoooo tiiiin?" Took me a moment to figure out that Jackie was talking to me. The sound was nasal, cartoonish and just not 'right'... as Jackie continued to talk to me I was getting more bewildered. WTF was this?!!!
"Do you hear a buzz?" I lipread her, the sound wasn't matching what I was hearing but I trusted my lipreading skills mkre right now... "Is the computer making a noise? Like a hum?" I asked, Jackie shock her head "no it isn't, the hum or buzz is the implant - its the world. The world IS noisy! Don't worry you will get used to it eventually!" used to it? OMG! It is horrible - I don't think I like this constant humming at all!
"Can you hear me talk?" Jackie continued, the cartoonish-underwater sound continued to evade my senses. Telling her what she sounded like, she nodded and adjusted a few settings on the PC... "How's that? Is that better?" hmmm a little - but you still sound weird! Cue laughter all around...
Fran continued to film us silently. Catching the camera, I signed into it "oh my god - this is just... NOT what I was expecting! Its nothing like what I had before... " Jackie asked how I felt, I was honest - its not perfect but I came in expecting nothing more than the same hearing I had before... nothing more. Jackie offered to test me with 3/4 sounds:
aa
ee
oo
sh
ss
I got more of them right(!)
Someone knocked on the door and I literally jumped, what was THAT?! Seeing Jackie turn her head to talk to the person at the door, I copped on that I had just heard knocking. But it didn't sound like knocking! Screechy-scratching more like, interspersed with that consistent hum... Jackie did a few more adjustments then announced that I was finished 'for today'... what?! She's sending me home with this hum that had started developing hooting and whoosing noises... urgh! I was certainly NOT impressed with it at all.
Reminding myself that I'm a long way off from perfect hearing and it will take time... that no CI'ee I met ever enjoyed the switch on, in fact Fiona pointed out the first 3 months were "awful" for her. Just have to grit my teeth and get on with it... it can only get better.
Asking me what my plans were for the week (as my next appointment was in 6 days time...) I mentioned I was going to the pub later for my friend's farewell do before flying back to her new home in Oz. Jackie then created a 2nd map for 'noisy places' encouraged me to use it in pubs and busy places. Along with a louder programme for 'quiet places' I had the base map plus another with two electrodes on different settings. And was sent packing with the bare supplies and a card outlining the various programmes on the processor and the lenght of time the batteries would last - 39 hours, just over 3 days.
Once outside, the hum wasn't as noticeable, there were other sounds but nothing was making sense. Fran asked if I would explain how I felt the the camera, a security guard interrupted us asking if we had permission to film, waving the signed slip from the Hospital Director he apologized and toddled off - I was so distracted signing to the camera because I kept hearing his footsteps as he walked away!
I drove to my friends' house in Swords for coffee, confessing my disappointment, they reminded me that getting new hearing aids is like that. We all need time to adjust "You need to give it time" very true. Vowing to keep the implant in as much as I can, the hum was still there, but every time it got noisy the hum went! Weird!
As I drove to town the noises in the car were heightened; the indicator was so loud, so sharp! The sound of the gears changing was scary, even though I was using my clutch - it still grinded as if I wasn't!
Parking my car 500 yards from where I was due to meet my friends, I had to cross Westmoreland Street, what an experience... with all the street noises - I started to feel overwhelmed, it felt like a rugby scrum was coming at me from all corners! I kept looking around me (and above to the sky too!) expecting to see something charging at me...But no, nothing! Walking down the street, I jumped as a group of lads passed me by talking loudly. It was as if they were shouting directly into my ear!
Meeting the girls in Starbucks while waiting for our table to be ready in Montys, I couldn't hear them talk at all - the noise was so great, it was drowning out their voices. I heard a chair being scrapped back - the sound came clearly above 'the noise' and registered itself with me first before I turning my head... I saw the owner get up and move the chair again. Yes it was definitely that! Wow!
After our meal we went to the Globe bar and by 1am I was too tired and overwhelmed by the noise of the music (it wasn't music - it was just 'ner-ner-ner-ner' noise!) and went home.
Taking the implant off that night I had a small tinnitus effect that died down very quickly. I keep reminding myself that its only early days... lets give this thing a fighting chance!
Thursday, December 3, 2009
One day to go...
I've been up to my eyes these last couple of days with work (am soooo behind work at the moment) I genuinely haven't had the time to sit down and think about how I am feeling...
But every time someone mentions it or I remember, my stomach does backwards flip!
I can't think or imagine what it will be like - I've just gone over my list here... I know its not going to be perfect on switch on - that it will be weeks, months perhaps, before I start to benefit from it.
Only a few more hours to go!
But every time someone mentions it or I remember, my stomach does backwards flip!
I can't think or imagine what it will be like - I've just gone over my list here... I know its not going to be perfect on switch on - that it will be weeks, months perhaps, before I start to benefit from it.
Only a few more hours to go!
Tuesday, December 1, 2009
3 days to Switch On
I've not posted in a couple of weeks, it has been a tough few weeks... but none of it was implant related!
I went back to work on Thursday 19th November - too soon in my opinion, as I was very tired and unable to concentrate much with the raging tinnitus. A lot of family issues came up that necessitate taking day off on Monday 23rd to sort out things properly. Back into work on Tuesday and that was my first 'proper' day back work and I haven't looked up for air since!
Strangely enough I have had no further attacks of tinnitus since Friday 20th November... Not that I am complaining mind!
The numbness to the left of my tongue is still there, my taste has changed too. I'm not tasting sweet any more, thinking of chocolate my mouth no longer waters! But think balsamic vinegar, rich savoury meats, chili-spicy food, salty crisps etc and my mouth salivates like mad!!!
I really miss my left hearing aid - I really notice that its gone and keep putting my hand up to check if its 'switched on' or the battery must be gone only to feel the lump and the realisation that I can't wear HAs there any more! The scar has healed up - no scab (there was hardly any) left either thanks to Bio-Oil.
But in the mist of all this it just hit me today - there's only THREE DAYS to my switch on! Whooop! Whoop!
I know, I shouldn't be over excited, I keep reminding myself that most people don't like the sensation/sounds/experiences of first few weeks... they are disappointed, they find it hard to adjust, they experence regrets, then it starts to get better. I don't care - I just want to hit the ground, feel it all and start the work! It feels like limbo all this waiting for activiation - I have a CI techically, but as of yet I don't actually have one...
Hurry up Friday!
I went back to work on Thursday 19th November - too soon in my opinion, as I was very tired and unable to concentrate much with the raging tinnitus. A lot of family issues came up that necessitate taking day off on Monday 23rd to sort out things properly. Back into work on Tuesday and that was my first 'proper' day back work and I haven't looked up for air since!
Strangely enough I have had no further attacks of tinnitus since Friday 20th November... Not that I am complaining mind!
The numbness to the left of my tongue is still there, my taste has changed too. I'm not tasting sweet any more, thinking of chocolate my mouth no longer waters! But think balsamic vinegar, rich savoury meats, chili-spicy food, salty crisps etc and my mouth salivates like mad!!!
I really miss my left hearing aid - I really notice that its gone and keep putting my hand up to check if its 'switched on' or the battery must be gone only to feel the lump and the realisation that I can't wear HAs there any more! The scar has healed up - no scab (there was hardly any) left either thanks to Bio-Oil.
But in the mist of all this it just hit me today - there's only THREE DAYS to my switch on! Whooop! Whoop!
I know, I shouldn't be over excited, I keep reminding myself that most people don't like the sensation/sounds/experiences of first few weeks... they are disappointed, they find it hard to adjust, they experence regrets, then it starts to get better. I don't care - I just want to hit the ground, feel it all and start the work! It feels like limbo all this waiting for activiation - I have a CI techically, but as of yet I don't actually have one...
Hurry up Friday!
Saturday, November 14, 2009
Stitches out!
Had a wee bit of a lie-in on Friday, basking in the silence free from the annoying tinnitus! Got up and cleaned my room, fresh sheets on the bed etc. I decided to wash my hair before I go in to the doctor - was really, really... REALLY! looking forward to having a bath and washing my hair this morning!
Had a bit of a strop when I realised some eejit had just went and used up ALL the hot water!!!!!! GRRRRRR! Instead of a bath had to use the electric shower. The bath had to wait... I was so cross, I was almost late for the doctor's appointment!
The new GP, Maya, was young, pretty, chic and pregnant; I felt so drab, fat and ugly beside her! I didn’t feel the stitches coming out at all. The Swine Flu Vaccine was another matter - it hurt like hell! Inspecting my scar, Maya thought it would benefit from staying dry for a week at least and asked me not to wash my hair til next weekend(!) Urgh!
Later on that evening I felt really cold, achy, run down and really miserable - a side affect of the vaccine I guess? I was still snapping at everyone too. By 6pm the tinnitus came stomping back with a vengeance.
Had to stay up and wait for my mum to arrive. She came back to Dublin for her cousin's wife's removal/wake and was staying with me til the funeral next day. Mum didn't arrive til after 12:30am... at 10pm I was so bored, I broke my self-imposed break from playing poker and started playing with my free player points (I deliberately emptied all poker accounts for this month!) on PokerStars. And won my seats in the Joe Cada 100k game (Joe Cada won the World's biggest and most prestige poker competition WSOP last week) and the Sunday 250k game! Naturally my mum arrives as I'm in all these... and the criticism starts. She really doesn't see what I see in poker, she thinks its 'correct' to gamble on 'any two cards' that it is not a sport, there's no skill in it, its all luck, gambling and vice! I just ignored her - just wait til I get my big win and lets see what she says then! LOL! The tinnitus was roaring away and I was dying for my bed.
I just hope this tinnitus is just temporarily due to stress of the operation, tiredness, overdoing things and being slightly run-down from the affects of the antibiotics pumped into my system last week. Would hate to see it continuing...
Had a bit of a strop when I realised some eejit had just went and used up ALL the hot water!!!!!! GRRRRRR! Instead of a bath had to use the electric shower. The bath had to wait... I was so cross, I was almost late for the doctor's appointment!
The new GP, Maya, was young, pretty, chic and pregnant; I felt so drab, fat and ugly beside her! I didn’t feel the stitches coming out at all. The Swine Flu Vaccine was another matter - it hurt like hell! Inspecting my scar, Maya thought it would benefit from staying dry for a week at least and asked me not to wash my hair til next weekend(!) Urgh!
Later on that evening I felt really cold, achy, run down and really miserable - a side affect of the vaccine I guess? I was still snapping at everyone too. By 6pm the tinnitus came stomping back with a vengeance.
Had to stay up and wait for my mum to arrive. She came back to Dublin for her cousin's wife's removal/wake and was staying with me til the funeral next day. Mum didn't arrive til after 12:30am... at 10pm I was so bored, I broke my self-imposed break from playing poker and started playing with my free player points (I deliberately emptied all poker accounts for this month!) on PokerStars. And won my seats in the Joe Cada 100k game (Joe Cada won the World's biggest and most prestige poker competition WSOP last week) and the Sunday 250k game! Naturally my mum arrives as I'm in all these... and the criticism starts. She really doesn't see what I see in poker, she thinks its 'correct' to gamble on 'any two cards' that it is not a sport, there's no skill in it, its all luck, gambling and vice! I just ignored her - just wait til I get my big win and lets see what she says then! LOL! The tinnitus was roaring away and I was dying for my bed.
I just hope this tinnitus is just temporarily due to stress of the operation, tiredness, overdoing things and being slightly run-down from the affects of the antibiotics pumped into my system last week. Would hate to see it continuing...
Thursday, November 12, 2009
Pain, tinnitus and tiredness...
I really overdid things last Monday/Tuesday after I came home from hospital.
My mum who had stayed up minding my children while I was in hospital had to go home to Roscommon on Tuesday night; I made most of her (while she was still in Dublin)on Monday to take me to another medical appointment (non-CI related) food shopping, bank, etc., as I wasn't allowed to drive. I love my mother very much but she has a different way of doing things, I spend most of Tuesday putting stuff back in their proper places! My clothes were mixed up - some of my good tops were in my pyjama draw, while the pyjama tops were ironed and hanging in the wardrobe! LOL!
By Tuesday evening the whole of my left side of face/ear/head started to throb painfully! I took two paracetamol - had nothing else and it barely took the edge of the pain... I got rip-roaring tinnitus in the left ear, which went on for hours! By 11pm I was so bad, throwing all caution to the wind, I took off in the car to the local 24 hour pharmacy to get a stronger painkiller. The pharmacist recommended Solpadine; I took it gratefully and zoomed the 2 miles back to my house. The Solpadine worked really fast!
They must have given me a slow-releasing painkiller in hospital, can’t believe I’m getting all this pain and trouble now! Am kicking myself for not asking for prescription leaving hospital.
Waking up on Wednesday morning, the throbbing was still there but the tinnitus was gone. Dosed up again on Solpadine, I plonked myself on the sofa with a blanket, barely moved from there all day! But the tinnitus came back in the evening. Urgh! I went to bed at 10pm totally fed up!
I rarely get tinnitus. Previous attacks usually start as a loud 'Ooooooo' in my ear gradually getting lower and lower til its just 'white noise' that fades after a few seconds. I tend to get them in my right ear more than my left. Previous attacks usually last about 3-5 minutes, no longer... This week the tinnitus is mindblowing! It's following in the same pattern, but in my left ear, the 'oooooOOOOOOoooo' keeps going - resonating high then low then high again. And lasting for hours! It's not painful - just annoying...
The rest and early night on Wednesday did the trick (or perhaps it was the Solpadine?!) I felt great on Thursday morning! Resting up all day, I wanted to be fit to attend Deaf Artist Jane O'Brien's art exhibition in the Loving Spoon Cafe that evening. Popping into my GP to make the appointment for Friday to remove the stitches and get the Swine Flu vaccine, the receptionist was astounded to see me. ‘You had the operation already?!’ Yes, my dear I did! We had a chat about the operation; I showed off my scar and secured an appointment the next day with one of the new GPs working in the Clinic. I usually see Dr Fiona or Dr Orla, but both were not available.
The exhibition was so interesting! As a deaf artist Jane uses a lot of deaf materials in her work. A set of (now obsolete) minicoms had been painted and devilled to create a interesting sculpture; ear mould impressions feature heavily in a most of the sculptures. She had several pieces that really intrigued me and I related a lot to. My favourite was the 'Big D/Little d' paint-sculpture – it really sums up the identity crisis that I struggled with as part of the Deafhood process – really wish I had the money to buy it!
Art is something I appreciate and love; I started out looking for a career in art before realising I wasn’t talented enough to continue. I count some well known artists as good friends including the renowned artist - Amanda Coogan. I enjoy going to Art galleries and losing myself in them... since the arrival of my children I haven’t devoted as much time as I like to artistic endeavours. My house is not full of the art work that, when moving in I had promised I’d fill the walls with! A resolution I plan to make good on in future...
Heading home after the exhibition the tinnitus came roaring back strangely this time I had it in the right ear! Then the throbbing started again. Urgh! No more outings for me for the next few days...
Rest! Rest! Rest!
My mum who had stayed up minding my children while I was in hospital had to go home to Roscommon on Tuesday night; I made most of her (while she was still in Dublin)on Monday to take me to another medical appointment (non-CI related) food shopping, bank, etc., as I wasn't allowed to drive. I love my mother very much but she has a different way of doing things, I spend most of Tuesday putting stuff back in their proper places! My clothes were mixed up - some of my good tops were in my pyjama draw, while the pyjama tops were ironed and hanging in the wardrobe! LOL!
By Tuesday evening the whole of my left side of face/ear/head started to throb painfully! I took two paracetamol - had nothing else and it barely took the edge of the pain... I got rip-roaring tinnitus in the left ear, which went on for hours! By 11pm I was so bad, throwing all caution to the wind, I took off in the car to the local 24 hour pharmacy to get a stronger painkiller. The pharmacist recommended Solpadine; I took it gratefully and zoomed the 2 miles back to my house. The Solpadine worked really fast!
They must have given me a slow-releasing painkiller in hospital, can’t believe I’m getting all this pain and trouble now! Am kicking myself for not asking for prescription leaving hospital.
Waking up on Wednesday morning, the throbbing was still there but the tinnitus was gone. Dosed up again on Solpadine, I plonked myself on the sofa with a blanket, barely moved from there all day! But the tinnitus came back in the evening. Urgh! I went to bed at 10pm totally fed up!
I rarely get tinnitus. Previous attacks usually start as a loud 'Ooooooo' in my ear gradually getting lower and lower til its just 'white noise' that fades after a few seconds. I tend to get them in my right ear more than my left. Previous attacks usually last about 3-5 minutes, no longer... This week the tinnitus is mindblowing! It's following in the same pattern, but in my left ear, the 'oooooOOOOOOoooo' keeps going - resonating high then low then high again. And lasting for hours! It's not painful - just annoying...
The rest and early night on Wednesday did the trick (or perhaps it was the Solpadine?!) I felt great on Thursday morning! Resting up all day, I wanted to be fit to attend Deaf Artist Jane O'Brien's art exhibition in the Loving Spoon Cafe that evening. Popping into my GP to make the appointment for Friday to remove the stitches and get the Swine Flu vaccine, the receptionist was astounded to see me. ‘You had the operation already?!’ Yes, my dear I did! We had a chat about the operation; I showed off my scar and secured an appointment the next day with one of the new GPs working in the Clinic. I usually see Dr Fiona or Dr Orla, but both were not available.
The exhibition was so interesting! As a deaf artist Jane uses a lot of deaf materials in her work. A set of (now obsolete) minicoms had been painted and devilled to create a interesting sculpture; ear mould impressions feature heavily in a most of the sculptures. She had several pieces that really intrigued me and I related a lot to. My favourite was the 'Big D/Little d' paint-sculpture – it really sums up the identity crisis that I struggled with as part of the Deafhood process – really wish I had the money to buy it!
Art is something I appreciate and love; I started out looking for a career in art before realising I wasn’t talented enough to continue. I count some well known artists as good friends including the renowned artist - Amanda Coogan. I enjoy going to Art galleries and losing myself in them... since the arrival of my children I haven’t devoted as much time as I like to artistic endeavours. My house is not full of the art work that, when moving in I had promised I’d fill the walls with! A resolution I plan to make good on in future...
Heading home after the exhibition the tinnitus came roaring back strangely this time I had it in the right ear! Then the throbbing started again. Urgh! No more outings for me for the next few days...
Rest! Rest! Rest!
Tuesday, November 10, 2009
Home Sweet Home!
The rest of the time in hospital was fine, had a few visitors and watched all of Grey's Anatomy series 3 DVD. Mum brought me home yesterday morning, trying to chill out but its not easy - I keep moving around, cleaning this, sorting that... didn't get to bed til late last night. By 6pm today - I knew I had overdid things, my ear started to throb something awful! This was the first time I felt any pain in the implant area...
The doctor forgot to give me a prescription leaving the hospital so I had to make do with soluble solpadine and paracetamol. It's taken the edge off the pain but its still throbbing something funny... feels like the magnet part above my ear is trying to pop out! Hope that feeling is gone tomorrow. I'm also shattered - early bed for me tonight.
I've been instructed to go to my GP on Friday to get stitches removed plus get the Swine Flu vaccine... THEN I can wash my hair!!! Looking forward to that! It feels like I've greasy manky smelly rags on my head every time I reach up to touch it. I love to be one of those people who leave their hair be and let it self-cleanse itself as nature allows but the dried blood, disinfectant residue and god-knows-what-else left behind after surgery will need washing first! Don't know if I have the patience to let it go...
Have a friend's art exhibition launch on Thursday night - really hope I'll be fit to attend, need to find a hat to cover the manky mop first though!
The doctor forgot to give me a prescription leaving the hospital so I had to make do with soluble solpadine and paracetamol. It's taken the edge off the pain but its still throbbing something funny... feels like the magnet part above my ear is trying to pop out! Hope that feeling is gone tomorrow. I'm also shattered - early bed for me tonight.
I've been instructed to go to my GP on Friday to get stitches removed plus get the Swine Flu vaccine... THEN I can wash my hair!!! Looking forward to that! It feels like I've greasy manky smelly rags on my head every time I reach up to touch it. I love to be one of those people who leave their hair be and let it self-cleanse itself as nature allows but the dried blood, disinfectant residue and god-knows-what-else left behind after surgery will need washing first! Don't know if I have the patience to let it go...
Have a friend's art exhibition launch on Thursday night - really hope I'll be fit to attend, need to find a hat to cover the manky mop first though!
Saturday, November 7, 2009
Post-Op day 2
I woke up with horrible stomach cramps, feeling wrecked! Ray stopped by as I was just finished breakfast – my phone battery died so I asked him if he could charge it for me. We were signing away in ISL when NFH appeared. She just stood there watching us warily. Ray then signed ‘I think your new friend thinks we are talking about her...’ I responded ‘don’t care, let her think that!’
NFH made a big show of checking my wristband every time I was due to get my medication (none of the other nurses did this – just asked me my name or DOB), joking at her to ease the tension that I was hardly going to be different identity every time but NFS replied dourly ‘Its regulations we have to check every time’ Lovely beside manner hasn’t she (!)
The Ward Doctor and Surgeon Team called around to confirm they are happy with my progress I can go home on Monday. YAY!!!!
I’ve a discharge letter to give to my GP for priority request to get the Swine Flu vaccine. I’m not allowed back to work without it; clarifying with Ward Doctor about the myths surrounding the vaccine – she put my mind at ease declaring them all to be ‘Bullshit!’ Asking when I would be allowed back to work – the doctor says when I feel fit but no driving for at least 14 days post-op, meaning back to work on or about Thursday 19th November – as I need my car for work.
Jenny popped in after lunch looking a million dollars with her snazzy new haircut and bringing me the best thing ever – hair bobbles to tie my matted hair back up! She’s considering the CI herself... and had thousands of questions to ask!
Catherine came around in the afternoon with this huge box from Cochlear containing the processor, warrantee, carry bag, DVD etc. Some things are missing and will be given to me on the switch on date. We chatted about the AB-v-Cochlear choice being unavailable and she apologised that the choice was not available not just for me but for 3-4 other patients recently. But if I was insistent on getting silver (red, blue or green even!) processor, multi-coloured covers or re-chargeable batteries - I can order it especially from Cochlear in UK, paying the cost myself; will look into this for sure! When Catherine handed me my letter confirming the official switch on I was dismayed to discover the date had been set for 13th January 2010! Eeek! Work won’t be too impressed as that the whole month (4 weeks block Tues-Thurs) is booked up with our ISL film project for Department of Social, Family & Community Affairs! I actually asked for this to be pushed out to January as I assumed I’d be tied up with my operation in November, then week off for CI switch-on, mapping appointments etc, in December. As this is a very important project - I be in the dog house if I re-changed the entire project dates again! Urgh!
Mum brought in both children to visit me; Mum used to work in Beaumont, she wanted to go down to the various sections that she used to work in but they had all left early to attend the protest march in City. The kids ate all the mandarin oranges, blew up rubber gloves and jumped away on the bed and stared at my scar, as NFH strode up and down watching with pursed lips. The Ward Sister came in and cooed over them, asking their names, if they rubbed their hands with the disinfectant gel, etc. Théa demonstrated how they used it both coming in and going out. Cal confirmed his dad gave him the money for his Tae Kwon Do competitions (that man is a saint) and told me about all the people in his class going to his new school (Callan got accepted into the second level school he really wanted to go to... his dad and I had reservations, but once he’s happy, we are happy) Mum came back and took them home. I miss them so much!
One hour later I got a lovely text from Catherine confirming a new set of dates in December, means Switch on 1 & 2 will be a week apart on 4th & 11th December with various other mapping on 16th and 22nd (TBC) along with confirmation for January dates to be on Monday or Fridays. Hey I’m happy to accept this than change the project dates again! Just sent a text to my manager to book them all off for me before the other staff members get their dates in the leave book!
Happy days! I even smiled at our dour NFH this evening as she stuck her temperature probe right into my ear in her usual rough manner!
Gerdi just text to say she’s on her way in to visit! More juicy gossip plus House and Gray’s Anatomy for watching later... ye think I’d have enough of hospitals at this stage?! LOL!
NFH made a big show of checking my wristband every time I was due to get my medication (none of the other nurses did this – just asked me my name or DOB), joking at her to ease the tension that I was hardly going to be different identity every time but NFS replied dourly ‘Its regulations we have to check every time’ Lovely beside manner hasn’t she (!)
The Ward Doctor and Surgeon Team called around to confirm they are happy with my progress I can go home on Monday. YAY!!!!
I’ve a discharge letter to give to my GP for priority request to get the Swine Flu vaccine. I’m not allowed back to work without it; clarifying with Ward Doctor about the myths surrounding the vaccine – she put my mind at ease declaring them all to be ‘Bullshit!’ Asking when I would be allowed back to work – the doctor says when I feel fit but no driving for at least 14 days post-op, meaning back to work on or about Thursday 19th November – as I need my car for work.
Jenny popped in after lunch looking a million dollars with her snazzy new haircut and bringing me the best thing ever – hair bobbles to tie my matted hair back up! She’s considering the CI herself... and had thousands of questions to ask!
Catherine came around in the afternoon with this huge box from Cochlear containing the processor, warrantee, carry bag, DVD etc. Some things are missing and will be given to me on the switch on date. We chatted about the AB-v-Cochlear choice being unavailable and she apologised that the choice was not available not just for me but for 3-4 other patients recently. But if I was insistent on getting silver (red, blue or green even!) processor, multi-coloured covers or re-chargeable batteries - I can order it especially from Cochlear in UK, paying the cost myself; will look into this for sure! When Catherine handed me my letter confirming the official switch on I was dismayed to discover the date had been set for 13th January 2010! Eeek! Work won’t be too impressed as that the whole month (4 weeks block Tues-Thurs) is booked up with our ISL film project for Department of Social, Family & Community Affairs! I actually asked for this to be pushed out to January as I assumed I’d be tied up with my operation in November, then week off for CI switch-on, mapping appointments etc, in December. As this is a very important project - I be in the dog house if I re-changed the entire project dates again! Urgh!
Mum brought in both children to visit me; Mum used to work in Beaumont, she wanted to go down to the various sections that she used to work in but they had all left early to attend the protest march in City. The kids ate all the mandarin oranges, blew up rubber gloves and jumped away on the bed and stared at my scar, as NFH strode up and down watching with pursed lips. The Ward Sister came in and cooed over them, asking their names, if they rubbed their hands with the disinfectant gel, etc. Théa demonstrated how they used it both coming in and going out. Cal confirmed his dad gave him the money for his Tae Kwon Do competitions (that man is a saint) and told me about all the people in his class going to his new school (Callan got accepted into the second level school he really wanted to go to... his dad and I had reservations, but once he’s happy, we are happy) Mum came back and took them home. I miss them so much!
One hour later I got a lovely text from Catherine confirming a new set of dates in December, means Switch on 1 & 2 will be a week apart on 4th & 11th December with various other mapping on 16th and 22nd (TBC) along with confirmation for January dates to be on Monday or Fridays. Hey I’m happy to accept this than change the project dates again! Just sent a text to my manager to book them all off for me before the other staff members get their dates in the leave book!
Happy days! I even smiled at our dour NFH this evening as she stuck her temperature probe right into my ear in her usual rough manner!
Gerdi just text to say she’s on her way in to visit! More juicy gossip plus House and Gray’s Anatomy for watching later... ye think I’d have enough of hospitals at this stage?! LOL!
Friday, November 6, 2009
...AND THE NEXT
Slept fine til 6am – woke up feeling mucus in my throat and while coughing to clear it I had a slight nosebleed. Sitting forward to grab a tissue to catch it, I notice the pressure bandage had came off! Called the nurse – both came replaced the bandage, drips, took my BP/Temperature etc. This time the bandage didn’t cover my right ear so I was able to put in my hearing aid in the non-implanted ear. I had the oxygen mask back on again because of the nose bleed and went back to sleep.
Woke up at 7:30am to see Ray smiling at me, asking how the day went yesterday I told him about NFH (who wasn’t on duty thankfully) the bum-flashing episode and the annoying eye grit. My eye felt so much better – a little dry but better than yesterday. Breakfast was being served and I was delighted that I was allowed to get my tray! While eating I was struck by a pain in my left jaw, just under the implant area. And was conscious that the left half my tongue was numb, as if I had just been to the dentist, I couldn’t taste a thing on the left side! Texting a few CI’ees I asked if this was normal, I got reassurances that it was...
Dr Viani stopped by with the Ward Doctor, remarked that the operation yesterday was a success, they switched on the implant in-situ and it worked ‘really well, thumbs up all around!’ She mentioned the eye problem – I gave her the update, saying the grit was gone. She reassured me that the eye specialist will have a look later, adding that it didn’t happen in her theatre as both my eyes had been well covered during the operation. She ordered xrays and instructed the ward doctor to remove the pressure bandage if all is well
I went for an X-ray and came back with impressive pictures of the implant coiling thru my head and springing into the cochlear. Took a few picture of the x-rays with my phone, not sure how they will look on the PC yet! Before I could get the bandage off I was wheeled down to the Othamantist to get my eye checked out. There was some scrape to the eyeball noted but since the offending grit had gone – just keep putting antibiotic cream etc for 3 more days. When the bandage came off, I was eager to see my scar! Kept taking photos with phone, using webcam to shoot a video as I couldn’t see it in the mirror! It was really clean – no bloody or gore, very neat incision with 6 nylon stitches holding it closed, running along the ear fold almost parallel to my lobe, you can’t see it unless I pull the ear lobe back. My entire ear felt numb to touch.
Ray came up at 4pm to have a look at the scar. Mum and Théa came in with Aunt Rita, Théa was delighted to see her ‘normal mammy with no scary stuff’ she brought in a book for me to read to her in-between all the conversations going on and shared a mountain of grapes with Théa. After they all left, my friend Aidan popped in with a DVD region-code-breaker for my laptop which was stubbornly refusing to allow me to watch Region 1 DVDs that Susie had given me. We had a good natter about poker – discussing all the upcoming games, the book Derek Kelly gave me, update gossip on poker players we knew etc. Susie came in 10 minutes after Aidan left, we caught up from where we left off last week– I was giving her the low down on the recent Deaf Poker Deepstack Festival and she was telling me about how they almost drowned in sangria and rain in Edinburgh last weekend at Niamh’s hen party! I was on a high today after the miserable experience yesterday!
NFH wasn’t on duty today thankfully, instead we had this lovely 60-year-old warm motherly Ward Sister coming in all friendly chit-chat with everyone: ‘How is your eye now? Ah good, good! Is your lunch okay pet? Wasn’t that lasagne nice? The porter will be here for you in a moment, love, to bring you to X-ray... ’ She was a ray of sunshine, skipping into the ward with a warm smile on her face, making everyone feel special. Then stopping by all the beds saying good-night individually to all the patients before she left for the night.
I watched 5 episodes of House (series 1 DVD) back-to-back before falling into a restless sleep, kept waking up every 2-3 hours with mad dreams involving NFH, curtain-less beds and leaking bedpans!
Woke up at 7:30am to see Ray smiling at me, asking how the day went yesterday I told him about NFH (who wasn’t on duty thankfully) the bum-flashing episode and the annoying eye grit. My eye felt so much better – a little dry but better than yesterday. Breakfast was being served and I was delighted that I was allowed to get my tray! While eating I was struck by a pain in my left jaw, just under the implant area. And was conscious that the left half my tongue was numb, as if I had just been to the dentist, I couldn’t taste a thing on the left side! Texting a few CI’ees I asked if this was normal, I got reassurances that it was...
Dr Viani stopped by with the Ward Doctor, remarked that the operation yesterday was a success, they switched on the implant in-situ and it worked ‘really well, thumbs up all around!’ She mentioned the eye problem – I gave her the update, saying the grit was gone. She reassured me that the eye specialist will have a look later, adding that it didn’t happen in her theatre as both my eyes had been well covered during the operation. She ordered xrays and instructed the ward doctor to remove the pressure bandage if all is well
I went for an X-ray and came back with impressive pictures of the implant coiling thru my head and springing into the cochlear. Took a few picture of the x-rays with my phone, not sure how they will look on the PC yet! Before I could get the bandage off I was wheeled down to the Othamantist to get my eye checked out. There was some scrape to the eyeball noted but since the offending grit had gone – just keep putting antibiotic cream etc for 3 more days. When the bandage came off, I was eager to see my scar! Kept taking photos with phone, using webcam to shoot a video as I couldn’t see it in the mirror! It was really clean – no bloody or gore, very neat incision with 6 nylon stitches holding it closed, running along the ear fold almost parallel to my lobe, you can’t see it unless I pull the ear lobe back. My entire ear felt numb to touch.
Ray came up at 4pm to have a look at the scar. Mum and Théa came in with Aunt Rita, Théa was delighted to see her ‘normal mammy with no scary stuff’ she brought in a book for me to read to her in-between all the conversations going on and shared a mountain of grapes with Théa. After they all left, my friend Aidan popped in with a DVD region-code-breaker for my laptop which was stubbornly refusing to allow me to watch Region 1 DVDs that Susie had given me. We had a good natter about poker – discussing all the upcoming games, the book Derek Kelly gave me, update gossip on poker players we knew etc. Susie came in 10 minutes after Aidan left, we caught up from where we left off last week– I was giving her the low down on the recent Deaf Poker Deepstack Festival and she was telling me about how they almost drowned in sangria and rain in Edinburgh last weekend at Niamh’s hen party! I was on a high today after the miserable experience yesterday!
NFH wasn’t on duty today thankfully, instead we had this lovely 60-year-old warm motherly Ward Sister coming in all friendly chit-chat with everyone: ‘How is your eye now? Ah good, good! Is your lunch okay pet? Wasn’t that lasagne nice? The porter will be here for you in a moment, love, to bring you to X-ray... ’ She was a ray of sunshine, skipping into the ward with a warm smile on her face, making everyone feel special. Then stopping by all the beds saying good-night individually to all the patients before she left for the night.
I watched 5 episodes of House (series 1 DVD) back-to-back before falling into a restless sleep, kept waking up every 2-3 hours with mad dreams involving NFH, curtain-less beds and leaking bedpans!
Thursday, November 5, 2009
D-Day 4th Nov 2009
D-Day today –no going back now! Sorry this report is long... so much happened!
Was woken by nurse at 6am to take my BP, temperature, pulse and get measured for my white anti-clotting stockings. Got the stockings and gown at 7am, went for my shower. I didn’t bother washing my hair – most CI’ees told me that they washed their hair but said it was a waste of time; my hair was still clean from previous day so I left it. Went back to my bed, read my book, did a video diary entry via PC Webcam (don’t have permission to use camera in ward but can use PC webcam) and waited to be brought down to theatre.
Trolley came for me at 11am, I had expected to leave my hearing-aids at my bed and just bring my glasses but they said no, only hearing aids allowed in-situ in Theatre, not glasses! Was dismayed – my lip-reading skills is way better than my residual hearing, would rather have my glasses over the HA’s any day!
The guy pushing my trolley was a total joker very easy to understand, while waiting for the lift he started teasing this skinny petite blonde nurse carrying my file; as another trolley with patient came to share our lift he teased our nurse that there wouldn’t be room for her in lift! When the lift came – it was tiny! But they managed to fit two trolleys in side by side with the Joker plus the other guy pushing them plus two ward nurses... The Joker turned on my nurse “Wow! You manage to fit in did ya? Go on, I let ya push the button – pick any button...” as the lift went up instead of down to the Theatre floor, the Joker drawled at me really seriously “Jaysus, ya can’t trust a blonde to know the difference between up and down these days, can ya?” We all burst out laughing... The blonde nurse included! Great way to break the nervous tension I must add!
As I got into the Theatre waiting room, the blonde nurse handed my file to an African Theatre Nurse, who proceeded to talk to me – I was totally at loss! I didn’t understand her at all, not sure if it was because she was a non-national (very difficult to lip-read) or the fact I couldn’t see her clearly... I started apologising that I hadn’t my glasses on to see her properly. She gave poor Nurse Blonde a right ticking off for not allowing me to bring my glasses! She started to tick various boxes on my file, dumping my file on my bed and wandered off. I was curious and miffed to see what she had ticked for me, wanted to ensure she had put correct info but spotted nothing serious or incorrect... glancing thru the papers I noticed my blood test results had some odd results which concerned me – spotting a different name on top of the page ‘James ...’ waving Nurse Blonde over – I pointed it out to her silently, she gasped then removed the papers quickly before the Theatre Nurse came back to take my file adding the docket to clear me for admission into the Theatre. Just hope they had my results going in!
I was in the pre-theatre room for 5 minutes, saying hello to various people setting up my EGG monitor, drips, etc., none of whom I had met before! None of the team who visited my bed yesterday appeared either! Then the door opened and Dr Viani appeared –I was so glad to see a familiar face! Was having a moment that I might be in the wrong theatre! She grasped my hand and spoke to me – I motioned her to come forward as I couldn’t lip-read without my glasses. She repeated her greeting adding if I was alright, I nodded, asking if I would be implanted with the AB implant as I had hoped. She shook her head: ‘No I will be implanting you with the Nucleus. The Cochlear Nucleus is a more stable product. I would need to do a different operation for Advance Bionic Implant - I don’t have enough practice on implanting them just yet. Trust me, the Nucleus has a proven excellent track results, you will be fine.... Okay?’ She smiled at me, patting my arm reassuringly. I nodded. Instead of getting my aesthentic by injection into the drip, I got it via mask... it took forever! I must have counted to 50-something before I went under!
Coming around in the recovery room, I was in a sitting up position with oxygen mask on. Putting my hand up to my head, I felt the bandage but it wasn’t as big or tight as I was lead to believe. The doctor with the firm handshake from yesterday appeared. For some strange reason I thought, they didn’t do the operation! That I was opened up and closed again with no implant! Then suddenly I felt a horrible burning sensation in my right eye!
I asked “Did you do the implant? Is it over?”
-‘Oh yes, it went really well! Are you in pain?’
-‘There’s something in my eye – something sticking into it...’
-‘Okay, I’ll have a look... it looks red, can’t see anything, will get saline to wash it...’
When she came back with saline – two drops and my eyeball burned! ‘Owwww! ‘ I cried out, she backed off, “no, it is just initial burning – it’s still there, can you put more in please...” she poured the rest of the saline in, the relief was good but only temporary. I could feel the grit was still there scraping the eyeball as I moved my eye. Urrgh! I asked for the saline wash 3 times more, but no avail – the grit or whatever it was wasn’t shifting.
I don’t remember getting back to my ward, but the Ward doctor appeared concerned about the eye, which was getting worse. Begging for more saline to wash out the grit, she reassured me that they were trying to locate an Eye doctor for me. I kept asking, begging, for the saline – my eyeball was burning like mad! Finally a nurse appeared with the saline droplets as the doctor ran off to make a phone call - opening my eyelid, I asked the Nurse to put some on the top of eyeball, she squirted on the top of the eyelid, it ran down my face. I wasn’t impressed and was getting frustrated with the pain, snapped at her “No, not there – in the eye!” but the nurse just put my oxygen mask back on walked off!
Finally the Doctor came back, I explained what had happened, and she reassured me that she will get the nurse back with more saline. She also apologised that an Eye Doctor was not available in Beaumont; they needed to get one over from Mater. It would be tomorrow before he could see me. Brilliant, bloody brilliant! I started to get very upset – the pain was unbearable! The doctor tried to calm me down saying best they could offer was some painkilling eye drops for now, I agreed. While waiting for the eye drops I begged for more saline to dull the burning in the eye; the doctor agreed and a few minutes later the Nurse came back. This time she had a syringe, opening my eye she squirted saline onto my eyeball which really burned like mad!!! Howling with the initial pain of the burn, I removed my oxygen mask. She replaced it, I took it off again and she jammed it back on! I asked if I could please hold the saline and do it myself, but she refused. She then put an eye patch on the eye really roughly... I pulled her hand back and she slapped my hand! Whoa! WTF! I was in shock! Who gave this cow a job as a nurse!? She got up and walked away... 3 minutes later she came back took off the eyepatch and poured this cream from a tube into my eye. The cream stung for a moment (cue - more whimpers from me!) before the cooling action began to work and I was able to calm down. Then the Nurse from Hell (NFH) opened the curtains, seeing all the other ladies and their visitors staring at me (it was 3pm at this stage) I was mortified!
Mum came in with my 4 year old daughter, Théa, I was so glad to see them! Poor Théa was in shock to see me with eye patch, bandage, oxygen mask – she just stood there in shock, wouldn’t come near me! They didn’t stay too long as I was drifting in/out of sleep. NFH came back with BP, Temperature and pulse thingys; she woke me up jabbing the temperature probe deep into my right ear – I winced! The people were still there all looking on at me, catching sight of the male nurse-aid – I asked him to draw the curtains for some privacy, which he did. Still tired I drifted into a light sleep.
I woke up 3 hours later, the burning sensation in my eye was back, the curtains was open, lights in ward on full blast, my overhead light was on and the gauze was coming away from the eye... ringing the pager, the NFH came, I removed the oxygen mask to ask for the curtains to be drawn and more cream for eye, explaining it was burning up again. She shook her head at me, said something – I asked for my glasses as I couldn’t see her to lip-read what she was saying (didn’t have my hearing aids on either)... she gave the glasses to me and walked away. Grrr! What was the point of talking then giving me my glasses, then walking away?! Not very deaf friendly, are we, eh? Ringing the pager again – the Nurses-Aid came in. I asked him to close curtains and turn off the light over my bed, please. He nodded. I them asked for some water as my mouth was really dry... He went off to ask, before coming back with a cup of water and a paper bowl, I was only allowed to rinse my mouth and take one small slip. Bliss! Barely 2 mins later NFH comes back, whips the curtains back and tells me off!
-“You cannot have this curtain closed – we need to keep an eye on you!”
-“I’m finding the light too strong, my eye is sore again can I have more ointment on please?”
-“No! You have eye patch – that’s enough! Put that oxygen mask back on NOW!”
30 mins later, I was bursting for a pee... urgh! Pressing the bell with trepidation, the Nurse-Aid came... told him I badly needed toilet. ‘No problem - one moment.... ‘ off he went then came back with bed-pan! LOL! You gotta be joking me!? No, he was deadly serious, pulling curtains around the bed, started to pull back covers, lift my gown... and deftly placed the pan under my bum... I was in shock! But thinking I had a choice between him and the NFH, I was really in no position to complain! But I was so embarrassed – I couldn’t pee! I was BURSTING to go but I couldn’t! After 3 long minutes, I told him it wasn’t working. He went off and came back with a commode chair... I hope that was to bring me into the toilet but he nodded said no, I had to use it there(!) Helping me out of the bed for the first time, releasing my drip, I was about to sit down – NFS pulls the curtain back exposing my bum to the people visiting the lady in the bed opposite me!!! She pulled it back but I was soooooo embarrassed! I started sobbing my eyes out in frustration! I still couldn’t go... it took 10 minutes for me to calm down and relaxed enough to pee! When it was over, I asked Nurse-Aid to leave curtains closed but he shook his head sadly ‘sorry but the Staff Nurses says we have to keep them open...’
As they moved the bed to push in the commode the cup of water got knocked over and wet the bed clothes. My drip had leaked onto my gown (which was same one I wore for the operation) NFH came back, started tutting about the wet bedclothes/gown, and made a big deal about changing the sheets. The curtains were still open - god only knows what the visitors and the other ladies must have been thinking! That I soiled the bed and my gown?! I vowed to complain about NFH... her unsympathetic manner; lack of deaf awareness and non-respect for my dignity was just awful!
The crying episode I had earlier helped cool the eye a bit, but it made my eye patch really damp, so I removed it. Realising the grit or whatever it was had moved, I could feel it just under my eyelid. Grabbing a tissue, I dipped it into what was left of the water in the cup and gently rubbed under the eyelid – and it came out! The eye was still burning, spotting the eye cream on my bedside locker, I never noticed it before! Feck NFH! Grabbing it, I read the instruction paper inside, and following it poured some cream into my eye... Ah the blessed relief!
One hour later when the night shift nurses came on – I was still sitting up in the chair beside my bed with oxygen mask on. I had been waiting for NFH to put me back in my bed but she never came back! I asked one of the night nurse if I can take off the oxygen mask, she agreed. The catering staff came around with tea/coffee/biscuits at 10pm – I was suddenly ravenous! Asking the night nurse if I was allowed to have tea? She checked my chart – ‘Any sickness, or dizziness today?’ I said no. She then instructed the catering staff to give me a cup of tea and two digestive biscuits! It was best tea and biscuits ever!
Realising I needed to pee again... called the Nurse; she asked if I was able to walk. I nodded – I hadn’t a clue if I was able but I was determined to go to the toilet and not face the commode again! She helped me up and I managed to walk holding on to tables, walls... no dizziness, just was slightly off balance. Nurse offered to help me change out of the gown into my pyjamas. Washed my face, hands, got more eye cream and felt soooo much better going back to my bed! I had to sleep in a semi-sitting position, which I didn’t mind.
Was woken by nurse at 6am to take my BP, temperature, pulse and get measured for my white anti-clotting stockings. Got the stockings and gown at 7am, went for my shower. I didn’t bother washing my hair – most CI’ees told me that they washed their hair but said it was a waste of time; my hair was still clean from previous day so I left it. Went back to my bed, read my book, did a video diary entry via PC Webcam (don’t have permission to use camera in ward but can use PC webcam) and waited to be brought down to theatre.
Trolley came for me at 11am, I had expected to leave my hearing-aids at my bed and just bring my glasses but they said no, only hearing aids allowed in-situ in Theatre, not glasses! Was dismayed – my lip-reading skills is way better than my residual hearing, would rather have my glasses over the HA’s any day!
The guy pushing my trolley was a total joker very easy to understand, while waiting for the lift he started teasing this skinny petite blonde nurse carrying my file; as another trolley with patient came to share our lift he teased our nurse that there wouldn’t be room for her in lift! When the lift came – it was tiny! But they managed to fit two trolleys in side by side with the Joker plus the other guy pushing them plus two ward nurses... The Joker turned on my nurse “Wow! You manage to fit in did ya? Go on, I let ya push the button – pick any button...” as the lift went up instead of down to the Theatre floor, the Joker drawled at me really seriously “Jaysus, ya can’t trust a blonde to know the difference between up and down these days, can ya?” We all burst out laughing... The blonde nurse included! Great way to break the nervous tension I must add!
As I got into the Theatre waiting room, the blonde nurse handed my file to an African Theatre Nurse, who proceeded to talk to me – I was totally at loss! I didn’t understand her at all, not sure if it was because she was a non-national (very difficult to lip-read) or the fact I couldn’t see her clearly... I started apologising that I hadn’t my glasses on to see her properly. She gave poor Nurse Blonde a right ticking off for not allowing me to bring my glasses! She started to tick various boxes on my file, dumping my file on my bed and wandered off. I was curious and miffed to see what she had ticked for me, wanted to ensure she had put correct info but spotted nothing serious or incorrect... glancing thru the papers I noticed my blood test results had some odd results which concerned me – spotting a different name on top of the page ‘James ...’ waving Nurse Blonde over – I pointed it out to her silently, she gasped then removed the papers quickly before the Theatre Nurse came back to take my file adding the docket to clear me for admission into the Theatre. Just hope they had my results going in!
I was in the pre-theatre room for 5 minutes, saying hello to various people setting up my EGG monitor, drips, etc., none of whom I had met before! None of the team who visited my bed yesterday appeared either! Then the door opened and Dr Viani appeared –I was so glad to see a familiar face! Was having a moment that I might be in the wrong theatre! She grasped my hand and spoke to me – I motioned her to come forward as I couldn’t lip-read without my glasses. She repeated her greeting adding if I was alright, I nodded, asking if I would be implanted with the AB implant as I had hoped. She shook her head: ‘No I will be implanting you with the Nucleus. The Cochlear Nucleus is a more stable product. I would need to do a different operation for Advance Bionic Implant - I don’t have enough practice on implanting them just yet. Trust me, the Nucleus has a proven excellent track results, you will be fine.... Okay?’ She smiled at me, patting my arm reassuringly. I nodded. Instead of getting my aesthentic by injection into the drip, I got it via mask... it took forever! I must have counted to 50-something before I went under!
Coming around in the recovery room, I was in a sitting up position with oxygen mask on. Putting my hand up to my head, I felt the bandage but it wasn’t as big or tight as I was lead to believe. The doctor with the firm handshake from yesterday appeared. For some strange reason I thought, they didn’t do the operation! That I was opened up and closed again with no implant! Then suddenly I felt a horrible burning sensation in my right eye!
I asked “Did you do the implant? Is it over?”
-‘Oh yes, it went really well! Are you in pain?’
-‘There’s something in my eye – something sticking into it...’
-‘Okay, I’ll have a look... it looks red, can’t see anything, will get saline to wash it...’
When she came back with saline – two drops and my eyeball burned! ‘Owwww! ‘ I cried out, she backed off, “no, it is just initial burning – it’s still there, can you put more in please...” she poured the rest of the saline in, the relief was good but only temporary. I could feel the grit was still there scraping the eyeball as I moved my eye. Urrgh! I asked for the saline wash 3 times more, but no avail – the grit or whatever it was wasn’t shifting.
I don’t remember getting back to my ward, but the Ward doctor appeared concerned about the eye, which was getting worse. Begging for more saline to wash out the grit, she reassured me that they were trying to locate an Eye doctor for me. I kept asking, begging, for the saline – my eyeball was burning like mad! Finally a nurse appeared with the saline droplets as the doctor ran off to make a phone call - opening my eyelid, I asked the Nurse to put some on the top of eyeball, she squirted on the top of the eyelid, it ran down my face. I wasn’t impressed and was getting frustrated with the pain, snapped at her “No, not there – in the eye!” but the nurse just put my oxygen mask back on walked off!
Finally the Doctor came back, I explained what had happened, and she reassured me that she will get the nurse back with more saline. She also apologised that an Eye Doctor was not available in Beaumont; they needed to get one over from Mater. It would be tomorrow before he could see me. Brilliant, bloody brilliant! I started to get very upset – the pain was unbearable! The doctor tried to calm me down saying best they could offer was some painkilling eye drops for now, I agreed. While waiting for the eye drops I begged for more saline to dull the burning in the eye; the doctor agreed and a few minutes later the Nurse came back. This time she had a syringe, opening my eye she squirted saline onto my eyeball which really burned like mad!!! Howling with the initial pain of the burn, I removed my oxygen mask. She replaced it, I took it off again and she jammed it back on! I asked if I could please hold the saline and do it myself, but she refused. She then put an eye patch on the eye really roughly... I pulled her hand back and she slapped my hand! Whoa! WTF! I was in shock! Who gave this cow a job as a nurse!? She got up and walked away... 3 minutes later she came back took off the eyepatch and poured this cream from a tube into my eye. The cream stung for a moment (cue - more whimpers from me!) before the cooling action began to work and I was able to calm down. Then the Nurse from Hell (NFH) opened the curtains, seeing all the other ladies and their visitors staring at me (it was 3pm at this stage) I was mortified!
Mum came in with my 4 year old daughter, Théa, I was so glad to see them! Poor Théa was in shock to see me with eye patch, bandage, oxygen mask – she just stood there in shock, wouldn’t come near me! They didn’t stay too long as I was drifting in/out of sleep. NFH came back with BP, Temperature and pulse thingys; she woke me up jabbing the temperature probe deep into my right ear – I winced! The people were still there all looking on at me, catching sight of the male nurse-aid – I asked him to draw the curtains for some privacy, which he did. Still tired I drifted into a light sleep.
I woke up 3 hours later, the burning sensation in my eye was back, the curtains was open, lights in ward on full blast, my overhead light was on and the gauze was coming away from the eye... ringing the pager, the NFH came, I removed the oxygen mask to ask for the curtains to be drawn and more cream for eye, explaining it was burning up again. She shook her head at me, said something – I asked for my glasses as I couldn’t see her to lip-read what she was saying (didn’t have my hearing aids on either)... she gave the glasses to me and walked away. Grrr! What was the point of talking then giving me my glasses, then walking away?! Not very deaf friendly, are we, eh? Ringing the pager again – the Nurses-Aid came in. I asked him to close curtains and turn off the light over my bed, please. He nodded. I them asked for some water as my mouth was really dry... He went off to ask, before coming back with a cup of water and a paper bowl, I was only allowed to rinse my mouth and take one small slip. Bliss! Barely 2 mins later NFH comes back, whips the curtains back and tells me off!
-“You cannot have this curtain closed – we need to keep an eye on you!”
-“I’m finding the light too strong, my eye is sore again can I have more ointment on please?”
-“No! You have eye patch – that’s enough! Put that oxygen mask back on NOW!”
30 mins later, I was bursting for a pee... urgh! Pressing the bell with trepidation, the Nurse-Aid came... told him I badly needed toilet. ‘No problem - one moment.... ‘ off he went then came back with bed-pan! LOL! You gotta be joking me!? No, he was deadly serious, pulling curtains around the bed, started to pull back covers, lift my gown... and deftly placed the pan under my bum... I was in shock! But thinking I had a choice between him and the NFH, I was really in no position to complain! But I was so embarrassed – I couldn’t pee! I was BURSTING to go but I couldn’t! After 3 long minutes, I told him it wasn’t working. He went off and came back with a commode chair... I hope that was to bring me into the toilet but he nodded said no, I had to use it there(!) Helping me out of the bed for the first time, releasing my drip, I was about to sit down – NFS pulls the curtain back exposing my bum to the people visiting the lady in the bed opposite me!!! She pulled it back but I was soooooo embarrassed! I started sobbing my eyes out in frustration! I still couldn’t go... it took 10 minutes for me to calm down and relaxed enough to pee! When it was over, I asked Nurse-Aid to leave curtains closed but he shook his head sadly ‘sorry but the Staff Nurses says we have to keep them open...’
As they moved the bed to push in the commode the cup of water got knocked over and wet the bed clothes. My drip had leaked onto my gown (which was same one I wore for the operation) NFH came back, started tutting about the wet bedclothes/gown, and made a big deal about changing the sheets. The curtains were still open - god only knows what the visitors and the other ladies must have been thinking! That I soiled the bed and my gown?! I vowed to complain about NFH... her unsympathetic manner; lack of deaf awareness and non-respect for my dignity was just awful!
The crying episode I had earlier helped cool the eye a bit, but it made my eye patch really damp, so I removed it. Realising the grit or whatever it was had moved, I could feel it just under my eyelid. Grabbing a tissue, I dipped it into what was left of the water in the cup and gently rubbed under the eyelid – and it came out! The eye was still burning, spotting the eye cream on my bedside locker, I never noticed it before! Feck NFH! Grabbing it, I read the instruction paper inside, and following it poured some cream into my eye... Ah the blessed relief!
One hour later when the night shift nurses came on – I was still sitting up in the chair beside my bed with oxygen mask on. I had been waiting for NFH to put me back in my bed but she never came back! I asked one of the night nurse if I can take off the oxygen mask, she agreed. The catering staff came around with tea/coffee/biscuits at 10pm – I was suddenly ravenous! Asking the night nurse if I was allowed to have tea? She checked my chart – ‘Any sickness, or dizziness today?’ I said no. She then instructed the catering staff to give me a cup of tea and two digestive biscuits! It was best tea and biscuits ever!
Realising I needed to pee again... called the Nurse; she asked if I was able to walk. I nodded – I hadn’t a clue if I was able but I was determined to go to the toilet and not face the commode again! She helped me up and I managed to walk holding on to tables, walls... no dizziness, just was slightly off balance. Nurse offered to help me change out of the gown into my pyjamas. Washed my face, hands, got more eye cream and felt soooo much better going back to my bed! I had to sleep in a semi-sitting position, which I didn’t mind.
Tuesday, November 3, 2009
Greetings from the hospital bed!
Yes I’m here already! I shouldn’t have spoken too son, eh?! LOL! What a mad panic today was! I slept in having drifted to sleep sometime around 4:30am. My son called me at 7:45am... groan!
Getting up, I discovered that my four year old daughter had gotten ill in the night and instead of waking me she got into the bed beside me, with a trail of vomit from her bed to mine! URGH! By the time I cleaned up, got washed dressed etc. Hopped into car with my son, I drove him to school (15 mins late...) then sped off in the direction of Kildare where I had my first morning appointment at 10am. Or so I thought.
Upon realising it was actually at 10:30am, I decided to stop off at Kildare Outlet and do some PTCs for the video diary. A security guard kindly pointed me in the direction of the site management office to seek permission which took aaagggggeeesss. Then I had to dash for my appointment!
I left my phone in the car during the visit, which ended at 12:15pm. Once back in the car I noticed I had 5 missed calls and 6 messages(!) From work, au pair at home, my mum and Beaumont Hospital. I was to go in at 1:30pm! My bed was ready! Arrrragh!
Flying back down the M/N7 to Dublin, I text Ray to give him the update and see if he was available to bring me or should I get a taxi? He replied that he was bringing me in and would take his lunch hour to do it. Dropping files and stuff off at my work, gave up trying to set my out-of-office note (my PC froze!) I sprinted down the M50 to my house to drop off car, grab my bag. The lights on the M50/N3 roundabout were out causing a huge jam. Once home I checked on my daughter (running a temperature now.... gulp!) and gave her medicine. It was 2pm by the time I was finally on my way to the hospital!
On arrival I was sent to St Anne’s Ward. The nurse brought me over to two empty beds and asked me to pick one; I choose the one beside the window that had a lovely view of a beech tree: Bed 16. I am sharing the room with four auld ladies! My nurse also informed me I had missed dinner and tea wouldn’t be until 5pm. Realising how hungry I was, I set off to the cafe and treated myself to lasagne and salad. Came back to the ward and met the doctor who gave me a through going over, questioned my medical history, family traits, take bloods etc. Ray, who had dropped me at the hospital door then went back to work earlier, came in to see how I was before he headed off home. The surgical team popped by to say hello, that they will see me in the Morning. I asked what time would it be, the young female doctor who introduced herself to me with a firm handshake (I’ve forgotten her name!) replied that there was two of us for surgery tomorrow – myself and a child. They will take us first come first served... I am selfishly hoping I will go in first as waiting around all morning will be tough for me!
My nurse came back to take my BP, temperature and pulse – the first of many! She announced I had a slight temperature, hmmm? Could be all the running about I did earlier or the boiling hot radiator beside my bed (which I turned off!) I’m very calm today –tired from the lack of sleep over the past few days, hopefully I’ll sleep well tonight.
Settling back to watch one of Susie’s DVDs – I was dismayed to discover House (which I was so looking forward to watching) was Region 1. Grrrrrr! Need to get hold of manuals or advice online as to how to change the region settings to multi-region! Have to settle for first series of 24 or Prison Break (neither of which I am really in the mood for) or get back into David Kelly’s Poker Player Tales book... with some chocolate... cold 7up. Hmmmm! Now that’s a plan!
I decided to write this report first! Going for a walk to the shop now... might as well before I am completely bedridden for the next few days...
Getting up, I discovered that my four year old daughter had gotten ill in the night and instead of waking me she got into the bed beside me, with a trail of vomit from her bed to mine! URGH! By the time I cleaned up, got washed dressed etc. Hopped into car with my son, I drove him to school (15 mins late...) then sped off in the direction of Kildare where I had my first morning appointment at 10am. Or so I thought.
Upon realising it was actually at 10:30am, I decided to stop off at Kildare Outlet and do some PTCs for the video diary. A security guard kindly pointed me in the direction of the site management office to seek permission which took aaagggggeeesss. Then I had to dash for my appointment!
I left my phone in the car during the visit, which ended at 12:15pm. Once back in the car I noticed I had 5 missed calls and 6 messages(!) From work, au pair at home, my mum and Beaumont Hospital. I was to go in at 1:30pm! My bed was ready! Arrrragh!
Flying back down the M/N7 to Dublin, I text Ray to give him the update and see if he was available to bring me or should I get a taxi? He replied that he was bringing me in and would take his lunch hour to do it. Dropping files and stuff off at my work, gave up trying to set my out-of-office note (my PC froze!) I sprinted down the M50 to my house to drop off car, grab my bag. The lights on the M50/N3 roundabout were out causing a huge jam. Once home I checked on my daughter (running a temperature now.... gulp!) and gave her medicine. It was 2pm by the time I was finally on my way to the hospital!
On arrival I was sent to St Anne’s Ward. The nurse brought me over to two empty beds and asked me to pick one; I choose the one beside the window that had a lovely view of a beech tree: Bed 16. I am sharing the room with four auld ladies! My nurse also informed me I had missed dinner and tea wouldn’t be until 5pm. Realising how hungry I was, I set off to the cafe and treated myself to lasagne and salad. Came back to the ward and met the doctor who gave me a through going over, questioned my medical history, family traits, take bloods etc. Ray, who had dropped me at the hospital door then went back to work earlier, came in to see how I was before he headed off home. The surgical team popped by to say hello, that they will see me in the Morning. I asked what time would it be, the young female doctor who introduced herself to me with a firm handshake (I’ve forgotten her name!) replied that there was two of us for surgery tomorrow – myself and a child. They will take us first come first served... I am selfishly hoping I will go in first as waiting around all morning will be tough for me!
My nurse came back to take my BP, temperature and pulse – the first of many! She announced I had a slight temperature, hmmm? Could be all the running about I did earlier or the boiling hot radiator beside my bed (which I turned off!) I’m very calm today –tired from the lack of sleep over the past few days, hopefully I’ll sleep well tonight.
Settling back to watch one of Susie’s DVDs – I was dismayed to discover House (which I was so looking forward to watching) was Region 1. Grrrrrr! Need to get hold of manuals or advice online as to how to change the region settings to multi-region! Have to settle for first series of 24 or Prison Break (neither of which I am really in the mood for) or get back into David Kelly’s Poker Player Tales book... with some chocolate... cold 7up. Hmmmm! Now that’s a plan!
I decided to write this report first! Going for a walk to the shop now... might as well before I am completely bedridden for the next few days...
Monday, November 2, 2009
Craby! Craby! Craby!
Two days to go and I’m in a foul mood today - snapping at people, finding faults and nit-picking the small things. I even burst into tears at one point for no reason!
I’m blaming the conversation I unintentionally got involved with, we started talking about hearing aids and the topic drifted into CIs. Before I could mention that I was going for a CI, one person started talking about someone who had a CI, how that person ‘used to be intelligent’ but now ‘acts thick... it’s her CI, it damaged her brain!’ (!?) Another person pointed out a ‘friend’ of his got CI because he wanted to have‘hearing girlfriends’... cue laughter. I was stunned! Will people think that I am getting the CI because I want to get a hearing boyfriend?! Or that I will by lobotomized by the CI and be forever ‘damaged’?!
There are several things I expect from getting a CI:
1 – Use the Telephone again! I recall using the telephone much easier 10-15 years ago, but gradually lost my confidence as my hearing declined. I would really like to do this again
2 – Hear the radio/iPod. So much information is spread via radio, my kids always demand the radio on in the car; I would avoid traffic jams if I had advance warning of same via the traffic station! I envy those who can use a radio/ipod to pass the time on long journeys/poker games etc. I’ve done a few radio interviews but can’t hear what I’ve said, what was kept in/left out, how did I come across!
3 – Follow a group conversation. I cope and communicate well one-to-one but am always lost in groups. Family gatherings can be boring; I miss out on valuable information in poker games when I can’t follow the player banter, I miss vital words that could help me to read a player;
I got my hospital bag packed – I’ve way too much stuff to bring with me: 6-7 pyjamas; dressing gown; hoodie; toiletries; slippers; underwear; laptop; DVDs; books; DV camera & tripod for my video diary; special pillow; notepad and pens... and I am still thinking I’ve forgotten something!!!
A special visit from Debbie Ennis to my home this evening was a godsend – she reassured me by recounting the various experiences that she and 3 of her children experienced going for CIs. They all were affected differently. It helped to calm me down, but I am still restless! Right now its 3am... I am all jittery and unable to sleep!
I have a busy day in work tomorrow, during which I have to call the hospital between 3-5pm to check if a bed is available... I’ve a feeling that there won’t be one and I’ll have to hold on til Wednesday morning. Ah Time will tell!
I’m blaming the conversation I unintentionally got involved with, we started talking about hearing aids and the topic drifted into CIs. Before I could mention that I was going for a CI, one person started talking about someone who had a CI, how that person ‘used to be intelligent’ but now ‘acts thick... it’s her CI, it damaged her brain!’ (!?) Another person pointed out a ‘friend’ of his got CI because he wanted to have‘hearing girlfriends’... cue laughter. I was stunned! Will people think that I am getting the CI because I want to get a hearing boyfriend?! Or that I will by lobotomized by the CI and be forever ‘damaged’?!
There are several things I expect from getting a CI:
1 – Use the Telephone again! I recall using the telephone much easier 10-15 years ago, but gradually lost my confidence as my hearing declined. I would really like to do this again
2 – Hear the radio/iPod. So much information is spread via radio, my kids always demand the radio on in the car; I would avoid traffic jams if I had advance warning of same via the traffic station! I envy those who can use a radio/ipod to pass the time on long journeys/poker games etc. I’ve done a few radio interviews but can’t hear what I’ve said, what was kept in/left out, how did I come across!
3 – Follow a group conversation. I cope and communicate well one-to-one but am always lost in groups. Family gatherings can be boring; I miss out on valuable information in poker games when I can’t follow the player banter, I miss vital words that could help me to read a player;
I got my hospital bag packed – I’ve way too much stuff to bring with me: 6-7 pyjamas; dressing gown; hoodie; toiletries; slippers; underwear; laptop; DVDs; books; DV camera & tripod for my video diary; special pillow; notepad and pens... and I am still thinking I’ve forgotten something!!!
A special visit from Debbie Ennis to my home this evening was a godsend – she reassured me by recounting the various experiences that she and 3 of her children experienced going for CIs. They all were affected differently. It helped to calm me down, but I am still restless! Right now its 3am... I am all jittery and unable to sleep!
I have a busy day in work tomorrow, during which I have to call the hospital between 3-5pm to check if a bed is available... I’ve a feeling that there won’t be one and I’ll have to hold on til Wednesday morning. Ah Time will tell!
Sunday, November 1, 2009
Things I want to hear...
1 - Follow the Radio
Driving in car or via an iPod
2 - Attend Live Shows
particularly comedy shows and drama, I adore Tim Minchin
3 - Use the Telephone again
Yes 'again', I used to be comfortable with it one upon a time but...
4 - Follow the group banter
At the party, around the poker table, dinner soirees and work meetings
5 - Go to the cinema anytime anywhere, see any movie...
This would be a amazing thing to do - no more limited to Monday nights or Saturday mornings and not being able to see what I hope will be subtitled then finding out kits not and having to wait for the DVD.
6 - Hear my children in the next room
I never know whats going on in the next room when I'm not in it, often the children are outside playing, in the kitchen when I'm in sitting room, playing upstairs etc.
Just hope I'm not being too optimistic!
Driving in car or via an iPod
2 - Attend Live Shows
particularly comedy shows and drama, I adore Tim Minchin
3 - Use the Telephone again
Yes 'again', I used to be comfortable with it one upon a time but...
4 - Follow the group banter
At the party, around the poker table, dinner soirees and work meetings
5 - Go to the cinema anytime anywhere, see any movie...
This would be a amazing thing to do - no more limited to Monday nights or Saturday mornings and not being able to see what I hope will be subtitled then finding out kits not and having to wait for the DVD.
6 - Hear my children in the next room
I never know whats going on in the next room when I'm not in it, often the children are outside playing, in the kitchen when I'm in sitting room, playing upstairs etc.
Just hope I'm not being too optimistic!
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!
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!
Monday, October 26, 2009
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!
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!
Saturday, October 10, 2009
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!
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!
Tuesday, October 6, 2009
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 g
etting 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!
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 g
etting 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!
Friday, September 18, 2009
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 Amer
ican 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!
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."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)
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!
Thursday, September 10, 2009
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'
Small reassurance there! All scientific reasoning aside there's several minor issues that factor in my decision to pick my left ear:
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!
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