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 ........