The Deaf One

Knowing me? Knowing you.

Tomorrow I have an appointment with the CI clinic, to look at progress (which is none) and perhaps work out where I go from here (hopefully forward).

I have some plans to ask them to try. One idea is that as the distortion I get is primarily dominated by high pitched whispering hushes enveloping every sounds I am “hearing” I wondered about re-programming the processor to start from scratch and only activating the lower frequencies for the time being. Perhaps, this’ll make it that bit clearer, and then I’ll work my way up wards. I don’t know if I’m thinking along the right lines, but it’s better than no plan isn’t it! I’ll update you tomorrow!

In the meantime, I’ve noticed that I get quite a few reads on this blog now. Initially I started this blog up to get all the ramblings in my head, down on paper as it were, and share my thoughts and experiences with anyone who might stumble across this page. I love that there seem to be regulars now, and I’d love to get to know you a bit more.

I challenge you to comment on this page and tell me 3 things about yourself, which can be ANTHING plus how you came across this blog. It would also really help me as a blogger, to get to know the type of people (apart from the fact that you’re all lovely of course – I already know that!) that are interested in my, as far as I know, rambled dull witterings!

I’ll tell you three things about me to get started:

  • I am a regular writer for the fabulous newspaper the Hearing Times
  • I always eat the foam eggs first, from a pack of Haribo
  • I am due back at work in 8 days, after 16 months off and am petrified!

Your turn :-) x

Mummy? Muuuuuummy?

You may know that I have two little girls. Something has been on my mind an awful lot lately, and that’s been not just my role as a Mum, but as a deaf Mum.

My oldest is almost four. She’s practically four, she has the speech, understanding and mobility of a four old, so she may as well be four so from this point on will be known as the “four year old”. My youngest is one. She is very much the baby of the family, still keeping in her little baby ways and has very little speech but can sign “Duck” with pride and has a wicked smile. She only turned one in January and it’s almost her month anniversary, so she’ll be known as the “14 month old”.

My four year old, is the funniest little thing. She comes out with the cutest of remarks and very cleverly put together sentences, for a four year old. This evening, she declared that when she’s bigger and older, she is going to be a princess and her little sister could be the fairy. I asked her how old was old, and she announced “Twenty”. You can only laugh can’t you? :-D

As much as I absolutely adore my children, I find them quite hard work at times, like any parent. However, additionally to the usual parenting woes, I have found that as my four year old gets very frustrated when I can’t understand things she’s said. At first I thought she was picking up reactions from others to me, so using a tone of impatience in her voice when having to repeat things time and time again that perhaps she’d heard someone else use. But then I realised that there are hardly any situations when people are like that with me on a regular basis when she’s around. My husband doesn’t, my parents and my sister certainly don’t. The only time I can really think of, is when I’m out shopping, or perhaps with someone who doesn’t know me very well. Some people do it without thinking, if they’re having a bad day, others do it because of a lack of awareness or plain ignorance. In fact, the tone of impatience makes me fluster and I struggle even more to pick up what is being said. I can’t actually hear the tone particularly well with the hearing aid, but I hear the tone nonetheless through lip-reading and facial expressions.

I think, it’s therefore become a bit of a natural thing to do for her as she’s now at a stage of development to realise just how different I can be to other people. She doesn’t have to repeat what she’s saying all the time to other people, and she knows how much easier that is. My guilt involved in this is as follows:

“Mummy, can I have a drink please?” She’ll ask very nicely.

“Sorry, what did you say?”

“Can I have a drink?”

“Pardon?”

“Drink! I want one!”

“Don’t be rude, where are your manners?”

And I wonder why she gets annoyed with me. I struggle to remember that she’s only four, she is normally a lovely polite little girl, but she struggles to get my attention sometimes, and I sometimes have told her off for something that wouldn’t have been necessary had I heard her the first time.

Mother’s guilt is such a terrible thing. I’ve mentioned it before, in an early post when I first started this blog (here) and it still haunts me. I wish I had been more consistent with her signing, if she had signed to me in the first instance, I’d have got it right away. But I suppose I got lazy. She can sign, she knows many words and can ask for a drink, or to watch the telly, or to play in the garden beautifully – but she doesn’t do it automatically. Only if I ask her to. I need to change this, otherwise she’ll get more and more frustrated with me.

I do explain to her by the way, the implications of me not being able to hear. She does understand, but she’s only four after all. She’s already got quite a lot of responsibility on her shoulders to tell me if the baby is crying, or if there was a knock at the door. She surprises me sometimes, with her mature head in the way she’s realised that she needed to tell me something I might not have heard.

I hate that I miss out on the best conversations. My friend e mailed me one night after dropping my daughter home one evening after we’d been to a show and I had gone on to college afterwards. She told me what her daughter, the same age as my four year old and mine had been discussing all the way home. How I loved to hear about it, the best conversations with children, can be in the car. Mine consist of:

“Oooh, did you see that tractor?”

“Yes!” She’ll say excitedly, and then she’ll say something else……

“Sorry darling, I’m driving at the moment so can’t see what you’re saying… tell me when we’ve stopped”

And then that’s it and the car returns to the sound of nothing :-(

I’ve got to share with you the e mail that my friend sent me. I really felt I was there after reading it, I felt I hadn’t missed out on it quite so much. But I was sad, that if it had been me driving, I wouldn’t have been able to share the same conversation with my friend.

It’ll make you smile though, I can guarantee that, aren’t four year olds amazing? :-)

A – Sometimes I go to see my Daddy at his work
I – Me too, I visit Uncle Greggy there too but not very often.
A – I haven’t been to your Daddy’s work.
I – I haven’t been to your Daddy’s work either.
A – No I haven’t either…oooooooh MACDONALDS! I can see the ‘M’!
I -  I like MacDonalds, it’s yellow.
A – Me too, Old Macdonald had a farm, e i e i ohhhhhhhh!
I joins in.
A – I like Kinder eggs too.
I – What’s a Kinder eggs?
A – They have yummy chocolate and toys inside them.
I – I like Happy Meal toys, they’re Scooby Doo
A – I like being happy.

Writing this blog post has been more about me letting off a bit of steam, but it also has helped me realise what I need to do. That is to sign more often with my children. OK, we won’t be able to have a conversation in the car, or walk and talk easily, but perhaps the friction that is sometimes caused by my inability to catch what she’s saying will be eased.

She’s a stunner you know, and the 14 month old. I’m so lucky. I’ll share a picture of my four year old signing something to me tonight, can you work out what she’s saying?

A quick CI update is that I turned up last week at my appointment only to find that there had been a mix up with dates on my part and actually, my appointment had been the week before. The next appointment they had was 1st April, so I’ll update after then.

In the meantime, enjoy your children and cherish every word they say. They are special x

Grumpy Deaf One

I’m in a huff.

A seriously bad mood, don’t cross me.

I love the cinema. I love the atmosphere, the feeling of going out, having a treat. The open tubs of warm popcorn, the watered down coke and the padded seats you have to hold down before you sit on them.

However, I hardly go because the films have to be subtitled.

When I first met my husband, the second date he took me on was to the cinema to see the very first Lord of the Rings film. It was over 3 hours long but thankfully was very visual so I really enjoyed it. The second film we saw together was Dog Soldiers and I found it very hard to hide my boredom as I did not have a clue what the story line was, who the characters were. It was very dark film of soldiers in a forrest and some creature was chasing them I gathered that much. It became apparent afterwards, that as well as words you needed to hear, the sound effects were pretty important too.

Said now husband, vowed never to take me to the cinema again, unless they started releasing subtitled films. DVDs and bagged popcorn were the way forward.

Then subtitled films slowly crept in. Next, www.yourlocalcinema.com, a website devoted to the cause of collecting dates and times of subtitled films in cinemas all around the UK, was up and running, whoop whoop! I lived in London at the time, there was always a film on subtitled in the surrounding areas. Leicester Square in particular was good at showing them.

9 years on and two children later. the cinema is more and more of a novelty to me. Films in my home town that are subtitled are a rarity shown at all, let alone at times that people who work full time can attend. Tuesdays at 2pm? Are you having a laugh? More weekend and evening shows please!

I have been known to travel all around the Midlands for the cinema, but the films seem to be getting fewer and far between, again. Why? I hear that cinemas are fed up with low attendance rates – well you will get low attendance if you mostly show them in week days! Deaf people work too you know!

I was very excited to be seeing the Lovely Bones at the cinema a couple of weeks ago with my parents. Only the small one was quite poorly, so I had to cancel the trip :-( Not to worry, there’s another showing at a cinema a few miles out of town, the week after – we’ll go to that one instead. My leg was in plaster by the end of the weekend.

Now I’m able to get about, and I have a check to see when it’s on next. Can I find anything? Can I heck. There are no showings listed at any cinema within a 30 mile radius of anything out at the moment, let alone Lovely Bones! A hearing person could have just gone to the cinema the next day instead. I have to wait for the DVD.

Hence the huff commenced.

Toby

Toby is the youngest son of a special friend of mine. He was born at just 32 weeks gestation and that was after labour had started a whole 8 weeks before. His mum did fantastically well, and somehow she held on.

He was born quite a poorly baby at first and had a lot of treatment in hospital before he could come home. Eventually he was diagnosed profoundly deaf.

When he was first diagnosed, he was issued with standard hearing aids:

(Photo courtesy of Nicola Corazzo)

But before long, it became apparent that they weren’t doing the job. At 16 months old, he was implanted with a cochlear implant of which at first, when initially switched on, looked like this:

2 years later, at 3 and a half years old, he has a processor that looks just like mine, hooks behind his ear, and has stars on the cover. He is an inspiration to me, in just 2 years he has done so well.

Nicola and Toby visited the other weekend, it was at a time that I was feeling particularly low about my CI and was just what I needed. Toby amazed me with how much he had changed since I saw him last. He was so much more grown up, he played happily with my daughters and laughed and smiled and chatted throughout the whole visit. But most of all, the most fantastic thing was – his understanding.

Several times throughout their visit, Nicola would say something when he wasn’t looking and he would repeat it without hesitation. His speech was clear, his sign language fantastic and wow, oh wow, oh wow. He can understand things without lip reading?

I was in shock, I know that this is one of the benefits of a CI, I know there is a high possibility that anyone with a CI can succeed doing this and my hopes are high that I too will be able to – but to see it actually happening, in a child with no previous experience of hearing and so young? Not only did he hear things, but he understood them too. Wow, it will never faze to amaze me, just how miracles can happen and it couldn’t happen to a lovelier little boy.

Its been such a pleasure watching Toby grow up into the handsome adorable young boy he is today after meeting him when he was just months old. At three and a half, he’s got the whole world at his feet. Credit to his wonderful Mum and Dad, and gorgeous older brother Oliver. Such a lovely lovely family.

Here’s to Toby x

(Photo courtesy of Nicola Corazzo)

“Don’t give up on your dreams”

Said a lovely friend of mine called Rachel.

Thank you, the smallest gestures mean so much. And I won’t, promise x

 

Link to original photo here

An apology and an explanation

I feel I owe my regular readers an explanation.

I am sorry for not being a regular blogger over the last few weeks. Normally at this time, people who have just had a CI and have a blog, write regularly with their updates and stories, I’ve kept a low profile, passing the time away talking about Tinnitus Awareness week and um, nothing much else.

I feel almost embarrassed to write to be quite honest. And I’m frankly, scared to write too.

I have harped on for months now, about the wonders of the CI and how utterly brilliant it was going to be for me. And my main idea was that anyone who was thinking of a CI for themselves, should they stumble across this blog; would find helpful answers and support towards their decision by reading this my witterings.

I love writing, it would be my dream to make a career out of writing and taking photographs. But I know this is a tad unrealistic – I’m not that good. However I really have, over the last few months enjoyed having my two blogs – this one to write on, and the other to share my photographs to fill in that gap of yearning, just a little bit.

My blogging mojo for both writing and sharing photos, completely disappeared when I felt that I had fallen flat on my face, after struggling to get to grips with the CI. I feel silly about all the good things I wrote – but also worried that I’ll put people off getting a CI. I am also in denial a little bit, and not really wanting to write much about the negatives as it means facing up to them.

The truth is this:

I still have faith in Cochlear Implants. I still have faith in the system, the product, the audiologists, the procedure and the whole idea that is the most fantastic super hearing aid ever. I know too many people where it has been a huge success story for me not to have faith. I have read too many blogs by people who have taken to it really well, to not believe in them and I did enough research prior to my journey, for it not to make sense in my head.

But I feel at this stage, that it’s simply not going to work for me.

It may be, that time is still what I need. I hope and hope every day that one day I’ll be reading back on this and laughing at my impatience. It’s “only” been 5 and a half weeks after all, since I was switched on.

But it feels like so much longer than that when every day you hope this’ll be the day you notice that slight improvement.

By now I SHOULD have had SOME improvement, surely? It shouldn’t be like it was on day one STILL should it?

Time and time again, I read articles and blogs, watch videos of documentaries of other people’s experiences, none of them describe it how I do. Most talk of changes within days, or weeks. Not months.

What happens next?

I’ve got to keep trying, I owe it to myself, my family and friends who have supported me so wonderfully. My audiologists and my consultants who have taken such great care of me from their medical perspective. I will keep trying, I will keep wearing it. But it’s so damn hard.

Each day, I force myself to put it on, dreading it. Each day I find myself wearing it less and less. Can I be honest here? There have even been some days when I haven’t worn it at all. I’m just in despair, it’s so hard to tolerate. The distortion drives me crazy and I cannot cope with it on for long. If there had been the slightest improvement, the tiniest hint of clarity, that would be all I needed, to motivate me, to see the light at the end of the tunnel.

But it hasn’t happened. This is getting me down a lot. As you’ll know, I had such high hopes for the CI so I’ve had to reassess a lot of my expectations. I’m due back at work very soon, I’m on annual leave at the moment – but I know for sure that even in a month there is no way I’ll be able to use the CI at work, so that’ll bring my usage down even more.

I’m feeling sheepish, disappointed, angry, embarrassed, upset, frustrated, annoyed and most of all, a bit of a let down. I am not someone who gives up easily, I really am not. I am worried people will think I’m giving up at the first hurdle. I promise you I’m not.

The only thing keeping me going is that I cannot find a single story anywhere, where a Cochlear Implant has failed for someone. It may be that it has happened – in fact it must have happened. But it’s not recorded anywhere I can find online or on paper. So therefore that must give me hope.

x

Distort distorted distortion

Just a very quick update. On Monday it will have been 4 weeks since switch on.

There has been no improvement since day one. The distortion is still there, no clarity can be found anywhere amongst the rasping noise that my brain is interpreting.

I am wearing it every day. Some days I manage only 15 minutes. Other days I manage as much as 2 hours. Longer than that, and I struggle with patience, tiredness and general frustration.

I am starting to lose hope, am I going to be one of the very unlucky ones? I am trying to keep clinging onto it has hard as I can – in the long scheme of things – it’s still very early days right?

x

This week is British Tinnitus Awareness week.

I suffer from Tinnitus, and it has steadily got worse throughout my life, especially so since my operation in December. I have had Tinnitus for 20 years. I am only 28 years old.

My friends and I that take part in a Photo A Day project sometimes take a photo to represent an charity day or week and make an effort to try and raise awareness for such charity throughout the Flickr Community.

The British Tinnitus Association who organise Tinnitus Awareness week have a great website. They provide lots of information about Tinnitus, including what it, how you can recognise you have it and what you need to do about it.

Taken from www.tinnitus.org.uk

What is tinnitus?

Tinnitus is the name given to the condition of noises ‘in the ears’ and/or ‘in the head’ with no external source. Tinnitus noises are described variously as ringing, whistling, buzzing and humming.

The noise/s may be heard in one ear, both ears or in the middle of the head or it may be difficult to pinpoint its exact location. The noise may be low, medium or high-pitched. There may be a single noise or two or more components. The noise may be continuous or it may come and go.

What causes tinnitus?

Tinnitus is not a disease or an illness, it is a symptom generated within a person’s own auditory pathways. Although it is often assumed that tinnitus occurs as a result of disease of the ears, this is often not the cause. The precise cause of tinnitus is still not fully understood but is usually associated with some hearing deficits.

Who gets tinnitus?

Experiences of tinnitus are very common in all age groups, especially following exposure to loud noise, however, it is unusual for it to be a major problem. There is a widely held misconception that tinnitus is confined to the elderly, but various studies have shown that it can occur at any age, even quite young children. Mild tinnitus is common – about 10 per cent of the population have it all the time and, in up to one per cent of adults, this may affect the quality of their life.

I hope that you don’t suffer from Tinnitus. But if you do, you’re not alone.

And I’m proud to share some of the photos that my friends took. Mine is first, the rest are credited :-)

by Lily_S Description here

  by Janna78 Description here

by catcat78 Description here

Aren’t they great?

I’ll add more later, as soon as I’ve got permission to blog them! x

When companies are behind with the times.

When are big companies going to get with it? Perhaps I should write a letter…

Today I took a trip down to London on the train. A friend of mine was due to join the train at her stop and we’d have a natter together on the train for the remainder of the journey before arriving at Euston and making our way to a lovely party. At one point during the journey before the train had arrived at my friend’s station, the train stopped in the middle of nowhere and was at a standstill for ages. I was quite worried as I was exchanging texts with my friend to check that she knew the train was delayed and to make sure she didn’t get on the wrong train (easily done as trains to London from her station are far more frequent than from mine).

There was the familiar ding-donnnnng sound that my hearing aid picked up and then some mumbled echo of the tannoy announcement. Did I understand a word? No, of course not. Did I approach anyone to find out what it was? Um, I would normally, I guess, but considering the entire carriage existed of just me, and two other groups of rowdy blokes then I can honestly say no, I wouldn’t consider it. No conductor went my way either during this time, so I couldn’t ask them either. But that’s not the point is it?

If trains now have those lovely rolling red word screen things with details of where the train is stopping next and the time of arrival (including changes of times) and warning you not to leave your bag unattended, yada yada, then why can’t they also provide a brief interpretation of what a tannoy announcement said? It’s common sense to surely regardless; what if a hearing person had their Ipod on, or if they were on their mobile at the time? But anyway, come on Big-Name-Train-Companies – It would provide such relief for someone like me, who then was wondering if it had been important or not if you could organise for relayed messages on those fancy screens.

Fortunately we were soon on our way and I could text my friend and let her know that we were approaching her station, she got on the right train, she found me and we had that natter we planned to have before commencing onto the party which was simply Just Lovely. Thank goodness for text messaging. Isn’t text messaging simply the best thing since sliced bread? I might write that letter though. Don’t you think its about time really that tannoy information was made more accessible?

As an aside, I can’t believe it’s been nearly 6 weeks since my operation! It’s also 2 weeks tomorrow since the switch on.

You can hardly notice that there’s an area behind my ear where the hair is so much shorter than the rest now. Although the photo below doesn’t paint such a pretty picture, rest assured I don’t walk around with my hair like this all the time. I prefer plaits these days – it hides the bald-er (yes I know that’s not a real word) quite nicely. The skin is covered, the rest of my long hair does the job. I fancied a change from the purple today, so switched to this snazzy green colour to match my new glasses. You like? :-)

I have another appointment tomorrow at HARC so I’ll be having a long hard chat with them about the worries going through my head. The distortion still hasn’t improved and the biggest thing playing on my mind is that nothing has improved even slightly, in the two weeks I’ve been wearing it. On the plus side, during my trip to the Village today, I was told that an old school-friend who had a CI implanted a month before me is also finding it hard. I was sorry to hear that she’s struggling a little bit too, but  it was indeed reassuring to find I’m not alone in my little boat as up until now I’ve felt a little bit singled out with how hard I’ve found it compared to the many blogs I follow and forums I read. A friend who had one last year has empathised, and explained that he found it very hard too at first (but loves it now) certainly helped but knowing someone is at almost the same stage at me currently helps put it into perspective.

Will keep you posted, hope your January has been a good one. See you next month!

A rant! Options for Deaf people.

Oh my goodness me, I need a rant!!

I’m not sure if I should name the website, but I found the following Question and Answer in a FAQ article today about CI’s:

What are options other than a cochlear implant?

For patients that are profoundly deaf, the only other option is sign language.

Whaaaaaaaaaaaaaaaaaat?!

No! No! No! No! No!

I am very much in the FOR camp when it comes to Cochlear Implants. I am still in the early stages of Switch On so I can’t comment myself, but I know plenty of people who have had a CI and it was the very best thing in the world. For the right people, the CI can be absolutely amazing, and life changing.

But for the Profoundly Deaf people who choose not to have an implant? The Profoundly Deaf people who aren’t suitable for one? The Profoundly Deaf people who can’t decide?

There are far more options than sign language thank you very much! My regular readers will know that I sign to my Deaf friends, I love sign language as much as the next sign language user but it is far from the only option.

Communication by voice is perfectly do able, even for those who don’t wear any form of hearing aid at all. We can be understood, heck, we can even have clear speech! Dare I say it, we can work perfectly well in the Hearing world without sign language – the hearing world does not always adjust to us, but we always have adjusted to them.

I am SO cross to have read this. It was written in April 2000, so just a teeny bit outdated, but even for an FAQ article written nearly 9 years ago, it is so SO WRONG!

Grrrrr!