Lobby

I no longer have to lobby the cinema industry for captions on movies. I read in the paper yesterday that one of my local cinemas caters for deaf and blind patrons, YAY! If you are blind they have earphones that give a description of what's happening on the screen and if you are deaf there is a device that you attach to the seat with captions. Now I have to think of something else to lobby for. Stay tuned.

Whispers in the Dark

Today I took the kids to a movie at the cinema. I haven't got around to my intended lobby of the cinema industry to include special screenings of movies with text but it's on my to do list. Anyway, it went surprisingly well as I found I could follow the movie fairly well and could understand most of the dialogue. The hard part was when my youngest tried talking to me half way through the movie. He whispered in my processor (the word processor doesn't sound as romantic as ear, he whispered sweet nothings in my processor .........). I digress, Ayden whispered in my processor and I didn't have a clue what he was talking about. Trouble is, you can't really talk any louder than a whisper in a movie and as I discovered today, I can't hear whispers. There was no other option than for him to wait until the movie was finished or think of some other way to communicate to me what he wanted. Thankfully, he wasn't trying to tell me that he needed to go to the toilet!
After the movie we went to an electronics store to pick up a game remote. These stores are always noisy and at the counter I couldn't hear what the guy was saying to me. I noticed that I've developed a habit of looking at a family member when someone speaks to me and I don't hear them.  Either my family will interpret and tell me what the other person has said or they answer for me. I don't mind either option, I'm just grateful that I have a back-up!

Christmas

Merry Christmas!!
My first deaf Christmas, easily one of the noisiest times of the year. The positive is that most of the noise is excited screaming from children and happy chatter from the adults. I don't think Christmas would be the same for me without the noise that comes with it.
I even tried putting on some Christmas music. Music, especially instrumental, sounds dreadful to me. I endured several Christmas carols until the kids, thank God, turned it off in favour of cartoons on the TV.
When the kids are busy watching TV this gives me the opportunity to turn my CI off for a little silence. As I mentioned before, my tinnitus is all but gone and the wind noise that made life difficult in the early days has gone as well. This means that when I turn my processor off I experience dead silence, total deafness. There are times, at the end of the day or when reading, when total silence is a blessing. It seems strange that I can turn my hearing on and off when I please. At least I can turn it back on!!!!!

I dont have a violin

My youngest son asked me the other day, "do you have a coconut in your violin?" Pardon? "Do you have a coconut in your violin?". I don't have a violin to put a coconut in, I reply. Puzzled look. "Do you have your cochlear implant in?!". Early days.

Tune In

I had an appointment with my audi this morning for a tune-up (official term is mapping). Oh how I love a good tune-up of the ear, well, the electronic device replacing my ear anyway. Each time sounds become a little clearer, especially voices. It's like getting faster internet, only in my case, it's getting a faster clearer brain function for hearing (and understanding). At the moment I'm on a fortnightly plan (attend audi every fortnight) but soon I'll move to a monthly plan.
Another good thing about a tune-up is the tinnitus (the most annoying condition in the world after voices in your head) gets better each time. I hardly hear it now, even when I have the implant off. YAY! Merry Christmas to me, minimal tinnitus!

The Day!

I couldn't blog yesterday. I had one of "those' days and thought that if I blogged I might scare people. You know 'those' days? When you stub your toe, can't find the end to a new roll of toilet paper, fill the car with the wrong petrol. Well I had one of those days but as well as the above I also managed to get sand in my CI (major disaster), get hit in the head with a surfboard, get sunburnt (despite sunscreen), get abused by some bloke who couldn't back up his car without 10 metres of space either side of him and then when I decided to take the dog for a walk to calm myself, someone had already taken off with her! Best not to blog on those types of days!

The Christmas Lunch Debacle

You'll realise why I've called it a debacle (Collins Dictionary: an overwhelming defeat) in a minute.

I arrived at my work Christmas lunch early as planned. I had my name ticked off the list, was given my little card with my pre-ordered vegetarian menu on it and spotted an empty table. Even better, the tables are rectangle which is perfect (round tables are a nightmare), yes! I make a bee-line straight for the far right chair which means nobody can sit on my right side and my CI side is facing the rest of the table. Perfect. Then one of my colleagues pops up in front of me, " Jane, over here, we already have a table". Damn. Move over to their table, spy the far right chair and it's empty, problem is,  my colleagues are sitting further down the table, about four chairs down. Think quick. I have two choices. Choice one is to sit next to them and pray that the person sitting on my right side is mute and doesn't like any social contact. Choice two is to look like an idiot and take the far right chair leaving a gap of four chairs between us. Take the idiot choice and then have to explain why I've chosen to sit four chairs away when they look at me strangely. Surely they've spent the last  24 hours planning how to accomodate my deafness like I have? I'm shocked to realise that not everyone's life revolves around my deafness. Anyway, my kind, understanding colleagues move up happily and leave a space for my husband on my left side (CI side). I'm feeling good, I don't have to worry about the right side, there is no chair there and no chance of anyone ending up there. I don't have to worry about the left side as my husband is sitting there and he doesn't expect any stimulating conversation from me. I spot someone I know walk in and practically fall over myself to get them to sit opposite me. I know I can lipread them if needed.
I'm feeling confident and then I realise that I can't hear a thing, not a single word, oh, except for the (deafening?) background noise that sounds a bit like I'm standing under a jetfighter with it's engines on full. Here we go.............

The lunch lasts three hours, three hours of nodding and smiling and making excuses to leave the conversation (lucky the toilets are nice). I have one conversation that lasts twenty minutes and I have no idea what it was about. A few people try to talk loudly in my CI microphones but this is worse as shouting is distorted by the CI and I can't see their face as they are leaning towards my ear so I can't lipread. I don't blame them when they give up, I would too. Three exhausting hours of pretending that everything is normal, I feel defeated.

As I'm leaving I hug a few of my colleagues and wish them a merry Christmas. One of them says to me "you are my inspiration, I need you to know that". I don't hear a thing for three hours but I hear that.

Lunch Stress!!!

In my last post I mentioned how being a deaf person with a CI dominates my thoughts all the time. Today I have my work Christmas lunch. Already (it's 6.45am) I'm thinking about getting there early so I can pick where to sit. I'm worried about sitting next to someone who will want to talk to me (highly likely at a lunch!) so I'm deciding if I should ask Steve (we work at the same place) to sit on my deaf side or my CI side. I've also worried about the person sitting opposite me, what if they want to talk to me as well?? I'm also concerned about the noise level. With 200 people at the lunch there will be alot of background noise which makes it impossible to hear. I also left my remote at the university yesterday which means I can't change my settings for the CI to cope with the noisy environment. The whole idea is very stressful but I have to plan my strategies now in order to get through it. I guess I could always fall back on the old "mirror their body language trick" and nod like I know what they're saying. God knows what I'll end up agreeing to after a few Christmas drinks!

Kids

Yesterday the kids and I were interviewed for a short teaching video on communication difficulties at Edith Cowan University. The speech therapist conducting the interview asked Jaxon (12 years) what the difference was between before I went deaf, and now that I have the cochlear implant. He said there was no difference, I'd been able to hear him, then I couldn't, now I can. A simple admission like that reminds me that having the surgery was well worth it. Being deaf was very difficult for the kids. Having the cochlear implant, for them, means everything is back to normal. Nobody sees the constant struggle I go through every day to be a deaf person with a cochlear implant. It dominates every part of my day from the minute I wake up to the minute I take it off at night to go to sleep. Most importantly, the kids don't see that struggle, as far as they are concerned, mum is back to normal!

Being Grateful

I've spent the last week feeling a bit down about my new life being deaf. Sometimes the effort of learning to be deaf and training my brain to hear with the CI takes it toll and I spend some time in self-pity mode.

Today, however, I've decided to concentrate on what I'm grateful for. Top of the list? I'm grateful for my cochlear implant. Without the cochlear implant I am totally deaf. This is a frustrating and isolating way to live in a hearing world, especially living with hearing family members and working in a job that involves speaking and listening. This morning I was running and stopped to let a lady through the gates at the top of an alley. She said 'oh no, you go and then you can keep running". I went, said thank you and then whispered a thank you to Professor Graham Clark, the Australian inventor of the cochlear implant. Simple exchanges with other people are how humans make connections, build relationships, become involved. I'm so gateful that I can do this.
I'm also grateful to Steve Jobs (RIP) for the Apple iphone. My phone and I are never apart and it is the other tool I use to connect to the world. I can't use a normal phone which is very annoying when trying to contact people and organisations. Try making a doctors appointment without using the phone!
Yes, I'm also grateful for my great kids and lovely husband and amazing family and wonderful work colleagues and fabulous friends, I would fall apart without them. However, I connected with them originally in the hearing world and I'm grateful that I can maintain that connection, in the hearing world. Thank you cochlear implant!!!!

xx

P.S I'm not grateful for birds as their tweet, heard through the CI, is one of the most excruciating sounds I currently experience (also running water and plastic bags).

Tip for the Day

This is my tip for today:
Next time you see or meet a deaf person, be nice, at least offer a friendly smile. Why? Because being deaf is bloody hard! In fact, most days, it's exhausting.
Those who have been deaf all their lives probably don't even know how hard they're working every day because they've done it all their lives and they don't know any different. However the act of listening (for those wearing CIs and hearing aids) and watching (lip reading) takes concentration and great effort. It takes just as much effort to ask people to repeat themselves (I do this ALL day), and it can become frustrating having to always explain to people that I'm deaf and have a cochlear implant (again, I repeat this all day). I'm reflecting on this tonight as today I had a big day, out of the comfort zone of my home and workplace where everyone watches out for me.

I had to catch a train into the City. I asked a train guard how many zones I needed to travel and she said something that I didn't catch so I asked her to repeat herself. I thought she said "free", so I said free, great. She then put this annoyed face on and replied with a condescending tone, "I said three". I then explained I was deaf and couldn't hear her with all the noise of the train station and she softened her tone, smiled and said "zone three". This was before 9am!
The train wasn't so bad as I knew the stations and where I had to get off. I then had to walk down the busy City streets to the law courts as I was a witness in a case. The walk presented me with all sorts of noises but I couldn't identify any of them. A bit scary actually as I also couldn't tell what direction the noises were coming from.
I finally got to the law courts and had to explain to the Judge that I was using a cochlear implant to hear. I spent two hours on the stand having to have everything repeated to me. Honestly, I felt like a small child who didn't understand what the big grown-ups were talking about. I stayed for a while after my evidence to hear what the other witnesses had to say but wasn't getting any of it so I left.
Heading home I arrived at the car park to find a parking fine on my car. This has got nothing to do with being deaf but didn't help my already frustrated disposition!!

I was then scheduled to attend a work social event but the thought of having to talk to people in a noisy social environment and look like I was having a great time and doing the secret 'copying everything you do (see previous post) in the hopes that you won't realise that I have no idea what you're talking about' thing was too much and I went home.

Got home and said to the kids "Hungry Jack's night", so the little one and I headed out to buy dinner. This was my first time through the drive thru using the CI. Regular readers will remember my previous attempts at the drive thru. Anyway, I order and then the girl taking my order says something that I don't get so I look at my son to speak for me. I thought he would say something like "small juice or no sauce". He says clearly into the speaker " hello, my mum wears a cochlear (perfect pronunciation) implant and she can't understand you when you speak so you have to say it again and be slower". Silence from the speaker, the pause lasts for a while. Eventually I say, "I'll come through to the window shall I?"

The point I'm trying to make is that I'm trying as hard as I can but believe me, it takes a lot of energy to navigate this hearing world, even with the CI. xxx

Does the cochlear cure deafness?

The cochlear implant is not a cure for deafness. It is an aid that can assist with the understanding of speech. It is brought home to me every day that I am a deaf person wearing a cochlear implant.
This morning I had to take my youngest son to emergency with an allergic reaction. I didn't hear a thing the triage nurse said but Ayden was on the ball and answered his own medical questions. Then when the clerk called his name to get further details he was on to it. He knew I was having great difficulty hearing in the hospital environment so he switched to signing to help me. When he sees that I'm struggling he changes. His shoulders become bigger somehow, he stands up straight, and he becomes protective of me, almost like a parent. Anyway, we were there for a few hours and thankfully the doctors spoke clearly and loudly enough that I understood their instructions. While we were waiting I noticed that Ayden's nails were starting to grow back. During the emotional time when I lost my hearing and had the CI surgery he had bitten his nails down to the skin to the point that they were often bleeding. I'm so pleased he is no longer biting them.
The last time I was in the emergency department of this hospital I had just lost my hearing and they were trying to work out what was wrong with me. I clearly remember the young doctor writing, "don't worry, it will all be OK". It wasn't OK, the hearing didn't come back.

The Big Secret

I've discovered a huge secret. Deaf people the world over have been keeping this secret for centries but I feel it is time for hearing people to know the truth. Here it is ................

Sometimes, when you talk, we can understand you. Sometimes, we can't. Doesn't matter. I have recently dicovered and put into practice the ancient art of copying your facial expressions and even if I don't have a clue what you're on about I'll smile when you do, laugh when you do, frown when you do and nod when you do. This indicates to you that I totally agree and understand what you're saying and you keep talking, encouraged. This makes me a great listener!
It works really well with children and repeating the last word said every now and then just adds to the allusion.
It is also very effective at shows, concerts, assemblies, presentations etc where there is a large group of people. I'll laugh when everyone else does (no idea what's so funny but you seem to think it is) and I'll clap when everyone claps. Works a treat.
I've even tried it during a one-on-one converstaion at work. I got about half the conversation (wearing the CI) but by mirroring everything the other person did they assumed I was with them 100%.

Shhh, don't tell ........

Every Day

Being deaf requires thought in how to navigate the every day. When I get up in the morning I'm deaf. I hop straight in the shower and wash my hair, still deaf. I don't put my CI on until my hair is dry so essentially, for the first half hour of the morning I'm deaf. This means that my communication with the family is limited until my hair is dry and I have the CI on.
Then when I'm heading out the door for work I need to make sure I have a charged battery (mine always die right in the middle of something important). I also need my remote control which controls the settings on the CI. I use this to turn sound up and down or change the setting to match the environment I'm in (noisy, quiet etc).
Once at work I find that I need to be more alert. I can't tell who is talking to me unless they are standing in front of me which is tricky in an open office. Sometimes I'll go walking around the office trying to find the person talking. I also can't hear if two or more people talk at the same time (common problem in an open office with seven women who are all good friends). I also spend the day saying "bless you" to any noise I hear just in case it's a sneeze. I don't want to appear rude!

When I sit down for a meeting I need to think about where I'll sit to maximise the chances of me catching sound. For me that means that other people have to be on my left side as my right ear is still deaf. Therefore, I make sure I'm early to every meeting so I can choose the best seating position.

In the afternoon it's time to pick up the kids from school. If it's windy then I'll avoid stopping to talk to people as the wind makes it impossible to understand speech. The kids will start talking to me, telling me about school things but we have to wait until we get in the car where I can block outside noise.

In the car, I can't have the radio on as I can't understand speech with noise in the background and the radio is the worst.

Back at home, all is well again unless there is a knock on the door or the phone rings .....................

Milestones

Two and a half weeks since switch on and I've nearly ticked off all my hearing milestones. This weekend I watched a movie on the TV without text. I have to be hooked up to the TV using my audio cord which means that nobody can watch the movie with me because the sound is directed straight to the CI. I've also watched a movie at an outdoor theatre and while I didn't get all the dialogue, I got enough to follow the storyline and enjoy the movie (OK, it was a kids movie but small steps people). 

I also heard the phone ring yesterday! It rang and I just stood there watching it, not knowing what to do with it. Do I answer and risk not hearing and hang up on the person? I let it go to the answering machine but low and behold, I heard the message too!!!

I also went to the shopping centre with my eldest son to get some shoes for him. As we were looking in a shop, two retail assistants smiled at us and I smiled back. When we left the shop my son said "that lady in the shop must think you're really rude because she asked you how you were and you ignored her".  I had to explain that he now had to listen for me and either tell me what people say or explain to them that I can't hear well. He's really embarrassed to do either. Early days.

Mapping

I had my second mapping appointment today which means I had a tune-up. Each time this happens voices are a little more clearer. People are starting to lose the chipmunk sound now and they sound more like themselves. Voices are still a little high pitched but still clear. My audi tells me that sounds will always have a robotic sound but over time will sound more natural. I have to remind myself that I'm not hearing with my ears (like using a hearing aid), I'm using an electronic device to send electical impulses directly to my brain. That still spins me out. If I can't hear someone clearly, instead of saying, "talk in my ear", I'll say "talk in my microphone".

I've attended two work meetings (I chaired one) over the last two days and I've understood about 98% of what people have said. Sometimes I have to ask people to repeat what they've said but even hearing people do this. I've been singled sided deaf all my life, so I usually miss bits and pieces anyway. With the CI on I feel comfortable and confident communicating in the work environment.

I also went for a run this morning with my CI (Lucy) on. While I felt more confident being able to hear, I couldn't work out what most of the sounds were. Animal sounds are the hardest to work out as I usually can't identify the animal or where they are. Birds are very difficult. Car engines on the other hand are very clear and I can identify a car horn.

Hearing with the CI takes a lot of concentration and effort and I am very tired at the end of each day. I've decided that a weekly massage is a good hearing reward, starting tomorrow!

This is why I have a cochlear implant .....

Listening to Ayden (7) singing.

Update

An update on my progress:
This week is the third week since my switch on. I think I'm doing OK. I have a list of things that I want to hear again and I'm slowly ticking them off. My list includes watching a movie without using the text (almost there), listening to my seven year old read a story, follow a conversation in a restaurant (tried it Friday night but not ready to tick that one off yet), have a clear conversation on the phone (people stopped ringing the home phone months ago so I haven't heard it even ring yet) and listen to the radio and follow a song I haven't heard before.

There are a few noises that drive me mad (water running, the dog barking) and I automatically reach up and block my ear with my finger. It takes me a second to realise that my ears are now for decoration and sticking my finger in the ear has no effect on sound, but grabbing the coil off my head does! While I'm discussing the dog barking, to my brain she sounds like a baby crying. It's a very high pitched noise and I never realise it's the dog until I see her barking.


There are also a few girly things that need to be considered when getting a cochlear implant. Firstly, there isn't a lot of room for sunglasses so I can't wear sunglasses that have thick arms. I also have to think about wearing hats. They can't be too tight against the coil and they can't sit too low or they rub against the microphones on the processor. I also can't fluff up my hair or give myself a quick finger comb as I always end up knocking the coil off (the magnet isn't that strong). I also had to cut my hair as I couldn't tuck it behind my ear anymore like I've done all my life.
Another annoying problem is that the batteries only last a day or two and usually decide to go flat in the middle of a movie or half way through a work meeting. I carry a spare battery with me but I've got to pause my life, change the battery and then continue on.

Every day sound gets a little clearer and people sound less like a chipmunk. The sound, especially a voice, is still very robotic and not natural sounding. I still struggle to hear well, and it's impossible when two people are talking at once, a bit like listening to an answering machine message while someone is talking to you at the same time.
 I ask my husband all the time, "what's that noise?" so I know I'm still learning to hear again. Slowly, slowly, as my mother always says (she with hyperactive tendencies). x

Best of Both Worlds

Having a cochlear implant gives me the best of both worlds, the hearing world and the deaf world. They are very different worlds and each has advantages and disadvantages. A CI means I can choose which world I want to be in at any given time.
Here are some examples.
It's very handy to be able to hear when out to dinner with hearing friends. It's also very handy to be deaf when the seven year old is having a crying tantrum (is it wrong that I whip off the CI when he does this?).
It's really handy to have hearing going through the take-away drive-through (see earlier posts) but great to be deaf when the husband starts snoring at night.
 It's nice to be hearing when my twelve year old wants to tell me about his day but I love to be deaf when an annoying kids TV show is on and I want to read the paper in peace.

Imagine having the choice to either hear everything or hear nothing? It's makes for a very peaceful night's sleep :)

Child's Play

My youngest son has discovered a new game to play with mum. Take mum's CI (cochlear implant) off, put mum's CI back on, take mum's CI off, put mum's CI back on, take mum's CI off .......... Finding the magnet in my head and watching the coil attach itself to it provides hours of amusement.
It's not only my youngest son that has found my CI a new form of fun. My eldest has experimented with sticking fridge magnets to my head, again, hours of amusement.
It's a new way of bonding with my children but I'm happy that they are comfortable with the CI and able to laugh and have a bit of fun with it. As long as I don't walk out the door with a "Kevin's Lawmowing" magnet stuck to my head!

It's all about you....

Now that I can hear again I'm starting to think about the changes other people have had to make for my hearing impairment. Apart from the obvious ones like writing or typing a conversation or learning to speak slowly and clearly; friends and family changed their communicative behaviour when around me.

They became so good at it that they still do it, even though I can hear them now. My husband and youngest son are still signing, pointing and tapping me on my arm to get my attention. This morning my husband tapped me on my arm and then waited for me to turn around and face him before he spoke. I didn't face him so he tapped again. I eventually had to remind him that he could just speak and I would listen. My youngest son still 'mouths' words so I can lip read him. I have to remind him to speak! My eldest son hasn't stopped talking. We haven't really spoken in three months and he has a lot of talking to make up.

My work friends are still using their hands to enhance meaning and writing things down. Some are still asking "can you hear me?" like they just can't believe I can go from profoundly deaf one day to hearing the next.

So far, in the last five days I've listen to the radio and recognised songs, I've used the phone (my beloved iphone) with an audio cable, I've listened to music through a speaker while exercising, I've socialised happily and easily participated in conversations, I've watched TV and understood about half the spoken words (still have text on to help), I've heard a knock on the door, and I've heard people in other rooms of the house. This cochlear implant is truly a little miracle. Imagine, deaf one day, hearing the next!
x

Three Days On

It's now three days since I got switched on. I've been wearing the processor as often as I can to expose my brain to sound. I take it off last thing at night and put it on first thing in the morning.
Voices are sounding more clearer now but they are still robotic and high pitched. My husband sounds cute with his little squeaky voice.


 I can hear things like the kettle boiling, the toilet flush and people talking in the next room. I don't know what they are saying but I know they are talking.
I made a phone call to my mum last night. I used my mobile and the audio cable that comes with the CI. I could hear what my mum was saying as long as she spoke slowly and clearly.
I can listen to the radio now too. I can recognise songs and can hear the words clearly. I really missed music so this is very exciting.

Switch On

Today was switch on where the audiologist turned my computer on. As soon as she turned it on and everyone started talking at me I burst out laughing. I couldn't help myself. Everyone sounded like chipmunks with their little high pitched squeeky voices. I was expecting Darth Vader, not the chipmunks! As expected, I could hear what my family were saying. The first thing I heard was my husband asking "do you want sushi for dinner?". To which I replied "yes!".
It's a very robotic sound but not so unpleasant that I want to take the processor off. I can only hear people when they stand in front of me and talk slowly and clearly. I can't hear anything or anyone more than a metre away but that's enough to have a conversation.
I have been given a suitcase full of accessories including batteries, cables, a travel case, a dry-store case, charging station, covers for the processor, spare wires and various little spare accessories for the processor.
The back of my ear (the surgery scar) is a bit sore after wearing the processor for the last two hours so I'm letting it just dangle at the back of my ear for the moment.
My youngest son has spent the last three months signing and speaking so I can lip-read him, so I've had to remind him several times to talk to me.
So far, I'd have to say, so good.

........and it's on!

Funny for Some

I was busy doing housework last weekend and I decided to give the whole house a good vacuum. I was in the bedroom, giving the floor a going over when my husband walked in and started laughing. "What are you laughing about?" I said, he looked at me and said "you know that vacuum isn't turned on?". Damn!

The Effort

I mentioned a few posts back that my social life has doubled since going deaf, while others, who lose their hearing suddenly, report a loss of social life and self confidence. I've been deaf for three months now and I'm only just beginning to understand why this happens. It is simply exhausting to communicate with hearing people. Especially when you haven't built up the skills (lip-reading) needed to aid that communication. While my lip-reading is good, it's not great and there is no way I can follow a conversation easily. I also can't lip-read everyone. Young children, people with thin lips, people who mumble and people who talk too fast are impossible to read. Lip-reading also requires you to watch people's mouths all the time and sometimes this feels creepy, especially when I've always looked people in the eye.
So rather than face the stress and trauma of trying to communicate in the outside world, sometimes it's easier to remain in the inside world.

The Final Countdown

Less than a week before I get switched on. Today has been a frustrating deaf day. I've boiled the kettle dry several times, I've not been able to understand what my youngest was wanting (turns out he wanted me to make a paper plane out of a perfect square - how could I possible get that!!!), I've wanted to make several phone calls but can't and I left the dryer on for a lot longer than intended. Needlesss to say, I'm looking forward to being switched on and joining the world of the hearing.
I'm now 16 days post-op. The wound behind my ear has healed nicely but the wound on my head is still a bit tender and sore. The feeling in my ear has come back but I still get jaw pain now and again. I'm also very very tired despite sleeping well at night.
Here's the weird bit. When I had my surgery I lost all my residual hearing. Well, today, I got some back. Yesterday I couldn't hear myself clap, today I can. Not sure what's happening.

Monday

Today is Monday, twelve days since surgery. This morning I went for a 4km beach run and felt great. It has been a long time since I felt like Jane.
I had a few chores at the shopping centre, Medicare, post office etc and each time I said to the attendant, "I'm deaf and I'm lip-reading you". This seems to work for me and them and I'm able to do all the normal stuff I did before.
However, I got a little cocky and as I had a late doctors appointment I got the kids Hungry Jacks for dinner on the way home. It didn't occur to me that I couldn't use the drive-thru until I was actually in it. I had to get the hubby to tell me when to say yes, no, small, orange juice etc. It was funny but we did it! So, there are a few things I can't do, bungee jump and go through the drive-thru.

                                                            Ear wound at 12 days post op

Healing

Eleven Days Post-Surgery: wound is healing nicely, already it's flat and the redness has gone. Still a little bit of swelling around the actual implant but the swelling has gone from around the ear. There is still also a bit of numbness in my ear. Tinnitus hasn't changed, still sings to me on a regular basis and I still have regular dizzy spells. Otherwise I feel great, count down to switch on starts tomorrow.

Back to Normal?

This morning I went to the beach for the first time since losing my hearing. We went for a long walk (kids and husband) and then had a swim and a play on the sand. I bought a few hot drinks from the cafe and when the man asked me a question I said "I'm deaf and I'm lip-reading you" so he pointed to the different sized cups. "Regular thanks" and he nodded. I've found that if I let people know I'm deaf and lip-reading them they switch modes and start gesturing, pointing, acting out or writing things down. Not one single person I have dealt with has ever been annoyed, frustrated or difficult with me. In fact I have only ever experienced positive reactions.

Back to the beach. It didn't occur to me until hours after we came home, that I didn't hear the sound of the water. Usually this is the best part, listening to the lapping of the waves against the shore. The beach is such a beautiful place and such a visual place that experiencing it in silence was not a bad thing. Phew!

Staples Out!

Today is six days post-surgery and I had the staples taken out and my wound cleaned up a bit. I had ten staples all together and it was not pleasant having them out but it was over and done with quickly.
The best part of the day? Having a shower and washing my hair! I hadn't washed it for six days (since the morning of my surgery) and it was so nice to have a good head scrub. I'm sure there were small animals living in there.
There is still some minor pain in the ear and the wound site is a bit tender. My surgeon had to cut my jaw muscle to get to my cochlear so my jaw hurts a bit and I can't open my mouth very wide. This should improve over time.
I told my youngest son that I had ten stitches taken out of my head today and he turned around and said "can you hear me now?". Broke my heart to say no. He has started using my iphone to type me messages when we are out (using the Notes app that comes installed on the phone).

My surgeon has told me to resume all normal daily activities such as exercising, driving, etc, but no bungee jumping. Oh well.

                                                     I'm calling this look "Punky Mother".

When things go bad .............

When life takes a turn for the worse people cope in different ways. Some turn to drugs and alcohol, some turn to God, others throw themselves into work. Me? I kept myself going with inspirational sayings. Not old fashioned, harps playing in the background type of sayings, ones that reminded me to keep going. So here are a few of my favourites:

Get up, get dressed and go anyway - this one I used many times and I was always glad I went.

Everything comes to an end, even the bad stuff - you just have to hope the end is the one you want.

What doesn't kill you, only makes you stronger - this one I like the best.

It's OK to ask for help - and you know what, people like helping.

Approach life with energy, enthusiam and empathy - I stole this one from "Tuesdays with Morrie" by Mitch Albom but I love it.


Here's the ironic part, two weeks before I lost my hearing I asked a friend for advice on a personal goal to set myself. She suggested "listen to people more" which I thought was good at the time. I never got the chance to put it into practice. So instead, I've changed it to "hug people more". That works much better for me at the moment :)

Technology

There are two things that have helped me to communicate with others since I lost my hearing, the ipad and my latest toy, the iphone. Apple inc have clearly put a lot of thought into the development of their products to assist and support those with disabilities including sight, hearing and physical impairment. I have included a link to the Apple website explaining some of the features of the iphone for hearing impairment - I use them all!!!

Accessibility for Hearing: iphone

There are also a number of applications (apps) that I've been using to help me. My favourite is the RIDBC AUSLAN Tutor. This app basically teaches sign language and with or without the cochlear implant, sign language in the home has been a blessing to help me still parent my children. I have a saying in the house "I didn't see any manners"....

What does a cochlear implant sound like?

This website gives hearing people an idea of what I will hear when my implant is turned on. I will hear a little bit better each week. Click on "Tuning In" and play through the video with the sound on.


What does a cochlear implant sound like?

The Amazing Brain

I've just finished reading a great book called "The Brain that Changes Itself" by Norman Doidge. It describes the adaptability of the human brain and cites research conducted by doctors all over the world to confirm such. It is amazing how, when faced with change (sudden disability), the brain adjusts to the changed situation to enable us to get on with life.  Therefore, it stands to reason that I should, about now, aquire an amazing ability, bordering on genius, to compensate for my deafness.

Anyway, the book also includes interviews with the first doctors to invent the cochlear implant. When they realised that the brain could adapt and change they knew that a person could hear again using a "computer" to hear, instead of natural mechanisms. It's just a matter of training the brain to interpret the sounds coming from the cochlear implant instead of the real cochlear. That is what I am about to embark on now, training my brain to understand sounds that come from the implant. Still looking forward to the strike of genius................................

Better Days

Five days post-surgery report: I still have trouble sleeping as most positions cause pain (pulling on the wound site). I end up sleeping on my back with my head propped up on a thick soft pillow.
Vertigo is still around but because I've had it for so long I don't notice it as much and get on with things.
Tinnitus is less intense and not so noisy. It's still there but not as bad - or - I've had it for so long I don't notice it as much!
At first I missed not having the tiny bit of residual hearing I had pre-surgery. However, my head is a quieter place without it. The noises that I did hear, loud voices, dog barking, door slams, were not pleasant noises, they were tinny and muffled and often hurt my ear, so I'm happy to be in complete silence now (with the tinnitus to keep me amused).
Looking forward to the next step!

Three Days On .....

Three days since my surgery and doing a little better each day. Today is my eldest son's birthday (the last of the October birthday run) so I had to drag myself out of bed at 5am to lay out his gifts (stupid family tradition that I will stop next year!). He was thrilled, so despite feeling rotten I'm glad he had a good start to his birthday.
I had a terrible nights sleep last night, mostly because I can only sleep on one side of my head but also because the whole thing is a little uncomfortable. I also have dirty hair and can't wash it for seven days so my head is itchy as well.
The dried blood on the wound is a little itchy too but I try not to touch it too much to avoid infection.
Otherwise, just feeling tired, very, very tired, and looking forward to my post-op doctors appointment to get cleaned up.

Post Surgery

Well, I've done it! Had the cochlear implant and come out the other end!
Surgery was simple, walked into the operating theatre, jumped up on the table and went to sleep. Woke up a couple of hours later with my head wrapped tightly in a huge bandage with a tuft of hair sticking out the top. Not much pain but got bad nausea which I had heaps of medication for. I had the nausea for about 20 hours before it got any better. My jaw is a bit sore but nothing too major. The vertigo is sticking around but I have medication for that too, not sure that's it's working. 

My residual hearing is gone, beforehand I could hear the dog bark, doors slam, that sort of thing. Now I hear nothing, nothing at all. Thanks goodness I learnt to lipread otherwise I'd be in real trouble. My youngest son asked last night "can you hear me now"? I had to say no.

Otherwise, things are going well and it's just a matter of waiting for the next step. x

Not my best look!

The day before ......

Tomorrow I go in for surgery to have my cochlear implant in the left ear. Two hour surgery, an overnight stay, then home to wait for the wound to heal (and my hair to grow back!). After three months I've worked out how to be a deaf person so while I'm excited about the prospect of hearing again, I'm not looking forward to learning how to be a hearing (hard of hearing but still hearing) person again. I suppose it is just another journey I have to take!!! Stay tuned, surgery update to follow. x

Naughty Forty!

It happened, I turned 40, today in fact.

Musings

I've been rather reflective this past week, my last week in my thirties. I'v been waiting for the "devastation" of losing my hearing to come, but it hasn't. Yes, I've been a bit down, but generally I'm as happy as ever, despite nearly turning the big 40. I've proven to myself that I don't need my hearing to function as I did before, yes, it's harder, but not impossible.

Last night I had a small gathering, the inner-circle and family, for a birthday celebration for the two boys and I. It was wonderful seeing everyone and the kids had a ball with their friends. My eldest had a few mates sleep over after the party. Husband tells me they talked all night, I didn't hear a thing and had a blissful sleep. It was also a great lip-reading environment, not one pad or pen in sight!

 I shopped for the party (driving again as of yesterday thank goodness) and I'm sure that not one of the shop assistants had any idea that I couldn't hear a thing they were saying. Even the deli man chatted away while I bought ice and I just nodded and said "really" and it seemed to be the right response!!

Then I was up at 6am to head off to the local flea market with a friend. I just asked stall holders to hold up their fingers to show me how much things were. I got some great designer pieces for a few dollars each.

Tonight I am heading out for an intimate dinner with my husband. Tomorrow it's off for breakfast and a shopping trip to Tiffanys, thanks to my generous friends and family for your contribution to the "Tiffany Fund".

I read on other people's blogs that they become socially isolated when they lose their hearing, I'd say the opposite has happened to me. I've had more invites and requests to visit over the last three months than ever before in my life.

Life doesn't need to change, just tweaked. x

Things I Miss ....

I miss hearing the rain fall.

I miss hearing birds sing in the morning.

I miss hearing the kids say " I love you".

I miss hearing waves crash on the shore.

I miss knowing why everyone is laughing.

I miss hearing the magpie before it swoops to peck me on the head!

Tribute to Friends and Family

It has now been three months since I lost my hearing. It has been at times frustrating, tiring and depressing. However, by far the most overwhelming part of my experience has been the kindness, thoughtfulness and generosity of the people around me. I underestimated how wonderful people can be.


In the first month my house was filled with flowers and chocolate. These were lovely and I enjoyed the sensory pleasure of having my house filled with beautiful blooms and the other sensory pleasure of stuffing my face with chocolate. I also had people drop off meals for the family and bring presents like whiteboards, magazines, books and DVDs. As I couldn't drive (vertigo) I had friends offer to take the kids to school and back and then they would take me out for a coffee as well.
As word got out about my hearing loss I recieved cards and emails from people sending me their best wishes for a positive outcome. These came from family members, work colleagues, the Principal of my children's school, my parent's friends, the soccer club where my son plays, school mums, friends I haven't seen for years, and even ex-boyfriends. My family were there every day, in one form or another. Either offering to drive me to medical appointments, buying me gifts, just visiting, and emailing every day to keep me connected.

I also contacted some people online in the same situation as me and they have been very supportive and understanding, having already been through what I'm experiencing now.

Three months on and I still recieve emails and texts from people checking on how I'm doing. Every week I'll get a text from someone asking how I am. These are people who have their own worries, stresses and families but still have enough time to care about me.


When this all happened I thought I was so unlucky, that the universe was against me. Now I realise that I'm the luckiest person alive and that no matter what happens to me I'm surrounded by people who will take care of me and ensure my happiness.
Thank you x

Cheers to the Ears!

Eating Out

It's now the October school holidays and the start of my family's birthday month.

We have celebrated my brother's birthday at a vegetarian cafe in Northbridge called Utopia where everything on the menu is vegetarian, even the beef. Going out to eat at a restaurant is the most difficult activity for me (after work meetings). It's OK if I'm dining with one person as I can usually lip-read them or we use the ipad. Any more than one and it's like I'm not really there. I feel almost like a ghost, watching people but not able to interact with them. I can't join in their conversation as I don't know what they are talking about and I don't know when there is a break in the conversation to have my turn speaking anyway. So I busy myself with the menu, play with my mobile phone, look around at other people in the restaurant and go to the toilet ..................... what else can I do????

Today it is my youngest son's birthday. He turns seven today! He wants to see a movie which is fine and I'm looking forward to taking him except I know that movies don't come with subtitles. I'll have to make a note to lobby the cinema industry to have special screenings of new movies for deaf people with subtitles. Maybe I can get away with taking a book?

Cause of my hearing loss.

Today I went to see my ENT doctor to discuss my cochlear implant surgery and get the results from the MRI and CAT scans. I have been diagnosed with vestibular aqueduct syndrome, a genetic syndrome that causes sudden deafness. This explains my profound deafness in my right ear when I was four years old and the sudden loss of hearing in my left ear at 39 years old. This syndrome is passed on from both parents who carry the recessive gene and the hearing loss occurs after birth, usually due to trauma to the head.
Next step is to have the cochlear implant surgery in order to restore some hearing in the left ear so I can participate in family, social and work life as normal. The surgery is three weeks from now at a private hospital in Perth. I've chosen my implant, Cochlear Nucleus and have chosen some groovy zebra stripe covers for it.

Waiting for the MRI

"How are the kids doing?"

The question I'm most asked since I went deaf is "how are the kids going?"
My children are 6 years old and 11 years old, both boys. The youngest responded quickly to my deafness by learing some signs from AUSLAN (Australian sign language) using an app I found on itunes. He is a very expressive child and while I can't lip read him (he is missing three top teeth) I can usually work out what he is communicating just by his signs, facial expression and body language. He is also very affectionate and gives me many kisses and cuddles. He has, however, started to bite his nails. I assume this is a symptom of stress and it concerns me.
The eldest has withdrawn from me. He is a quiet child at the best of times! He doesn't sign (only one: food) and will only write things down when he REALLY needs to communicate with me. He hates to go out in public with me as he hates it when I don't hear people and he thinks they think I'm rude.
I can't help him as much with his homework so he has had to manage this on his own, this is a little stressful as he is in his last year of primary school.
I understand now how difficult it is for deaf people to maintain relationships with people who are hearing, even family members.
So, the kids are OK, but they would be better if mum could hear them.

Where to from here?

I received a letter in the mail yesterday from my audiologist advising that I meet the criteria for a cochlear implant in my left ear (my right ear didn't meet the criteria and it's feeling rejected). I've since done a bit of research on the success rate of cochlear implants and it seems that this could be a good option for me. I'm not keen on having a device put in my head and wearing the processor behind my ear for the rest of my life, but I'm also keen to hear my kids laugh again and my husband say "I love you".
I still have my speech and I still have a "sound memory", so the sooner I can have the implant, the sooner my brain can start adjusting. I have appointments next week to determine my surgery date and which implant I'll get but at this stage it looks like I'm getting the Freedom from Cochlear as the Nucleus has been recalled.
I know I'll never get my hearing back but I'm looking forward to being a part of the hearing community again.

Returning to Work

Today was my first day back at work at West Coast Institute of Training (tertiary).  I'm not able to drive until my vertigo clears (and I have at least 40% hearing according to WA law) so I rode my bike to work. It's a 45 minute trip and it was windy and wild and a bit rainy too. I can't say I enjoyed the ride! 
My first task after returning to work after six weeks on sick leave, was to turn my desk around to face the office. This allows me to see who is coming and going and stops people sneaking up on me. Then I said goodbye to my phone, I've had that phone for fifteen years, and hope one day I'll be able to use it again. I have an amazing work team, seven intelligent, dynamic women who I love and adore. They seem unfazed by the changes they have had to make for my hearing loss and happily type meeting conversations on my Ipad (using a wireless keyboard) or face me to aid lipreading. Life would be so much more difficult without them. They even made me a 'welcome back' to work sign and had fresh flowers on my desk for when I arrived!

The Easy Parts: reading emails, working on documents, researching the internet, getting on with my work and not being distracted by office noise. Having my workplace happily accommodate my needs.

The Hard Parts: talking to more than one person at a time, saying hello to someone and then having to explain why I can't understand anything else they say. Not knowing why people are laughing. Even if they tell me afterwards, the moment has passed. Not knowing when I can speak and not talk over someone or interrupt. Not hearing the office chatter that I loved so much in my past life!

Party Hard!

I'm writing a bit bleary-eyed today because I went to my first "post hearing loss" party last night. It was a friend's 50th birthday party and wow, did he and his wife put on a great party. Food, wine, music, open fire and plenty of people to enjoy it. Luckily, I only knew a few people there and they were close friends, all aware of my hearing impairment. This meant I didn't have to make small talk and pretend I had any idea what people were talking about on too many occasions. The girlfriends I hung around with were easy to lip-read. Their husbands on the other hand both had heavy Irish accents and I couldn't lip-read them to save my life. Does that make sense? No, not really. The difficult part of the night was when they got the music going and everybody was dancing. I could hear a muffled base beat but I had no idea what the song was and wasn't really inspired to dance. I tried, but felt awkward. I really miss music.

The Frustrating Bits

I have only just joined the world of the profoundly deaf. Up to this point I had enough hearing in my left ear to get by in the hearing world, most of the time without people even knowing I had a hearing impairment. Now, things are different. I'm not part of the hearing world but I'm not part of the deaf world either, I don't know any deaf people who live in Perth. That is the most frustrating bit, trying to establish a new identity, a sense of belonging.

This is what I've had to do to connect with my family and friends: I've had to learn to lipread very quickly, this is easy if I know the person well and I know the topic we are talking about. I've got notepads all over the house, my eldest son (11 years) and husband (can't mention his age) use these but it can be frustrating for them writing everything down. My youngest son (6 years) uses a combination of AUSLAN signs and his own made up signs. He also writes things down when the situation requires it. He knows I'm deaf but that doesn't stop him from chatting away, I have no idea what he is talking about but I love that he does that. Being a mum I know how to pretend I'm listening when I'm really not, this skill has come in very handy but doesn't work on the eldest, he's on to me. I use my phone to text my friends. Most people have a mobile phone these days so that part is easy.
My all-time favourite communication tool? The Ipad (free plug for Apple). I carry it around with me everywhere (with a wireless keyboard) and use a number of different apps like notebook and whiteboard. This has been great in cafes, when friends come over to visit, and during medical appointments. The other good thing is I can read over the conversation later if needed (my memory is not that good since my hearing went). Saving up for the iphone next!!

The Day it All Happened

10th August 2011: I'd taken the day off work as I didn't feel well and I had been having dizzy spells for a few days. I'd complained to my husband that when he talked to me he sounded like he was under the water. The kids went off to school, my husband left for work, and I took some time to relax. I took a few phone calls on my mobile but it was getting hard to hear people talking. Just after lunch I sat down to watch TV but couldn't hear speech clearly so I had to turn it off. The dizzy spells were getting worse and I was feeling really unwell so I went to bed. When the kids arrived home at 3pm I couldn't hear them talking and the dizziness was so severe I couldn't move from my bed. That's when we went to the hospital. I was first diagnosed with labyrinthitis but after several weeks I saw a specialist who informed me that my hearing loss was permanent, possibly due to hereditary factors (my uncle and cousin were born with complete hearing loss). At this point, I leave the doctor's surgery and go shopping.