Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story

30 October 2008

Ear Pain and Random thoughts...

My implanted ear is playing up! I have a sore little ball in my ear lobe. I dont know why I get it but its sore and annoys me. It makes me paranoid in a way because the slightest little pain I get with my ear, I assume it's the start of an ear infection and I'm terrified i'll lose the cochlear implant that I have treasured for many years and has become a part of me. My parents reassure me that now I'm getting nutrients from the liquid feed in to my PEG and it will protect as much as it can do from ear infections. It was around November in 2000 that I lost my 1st cochlear implant in my right ear and although it wasnt a big deal at the time, it is now because I worry i'll lose this one too and I wont be able to have another one implanted should it ever happen. I TOUCH WOOD & CROSS MY FINGERS AND TOES that it never will lose my cochlear implant!!
Another thing I find myself thinking about is the quality of the implant that is embedded in my skull as I grow up, time moves on and technology gets better etc The external part of the cochlear implant equipment moves on too so in the future, maybe my internal implant wont be compatible or updated enough for the new external pieces. Whcih would mean I may need to have another operation to get a new internal implant in the future to keep up with the technology? I always think iF IT EVER HAPPENS, I will deal with it at the time and make my choice.

Cochlear implant sounding board...

I have discovered through the DEAF BLOG that they have launched a new sounding board for Cochlear implants with any questions they wish to ask or help others with you experience of their cochlear implants!
I think its very good and well thought out and you can read on other people's answers and experiences towards their CI's.
Here is the link for the forum on the ear foundation website.
I am also going to put the link for the Ear Foundation website on my links on the side of the blog as well as the forum link!

29 October 2008

Deaf Backgrounds...

I was watching See Hear (a Deaf related programme on BBC2 on TV) It was about 4 different deaf children from different backgrounds. There was:

A child with a deaf family
A child who had a cochlear implant at 18 months old who mixes with both hearing and deaf children
A child with a hearing family
A child who from a hearing family that signed AND speech. They then changed the child to a hearing school so had to mix with hearing people.

I thought it was very interesting to see different points of view from different backgrounds; however I was angry and thought the deaf family were selfish to deny their child a cochlear implant because the rest of the family was deaf as the child will still have been deaf. I always thought that parents would want the best future for their child so why is it right to deny their chance of hearing and stay in their silent world to suit them? They could learn to sign AND hear! If she grows up and decides she wants a cochlear implant to experience the hearing world she will have lost out on months or years of speech and listening skills because she has been in her deaf world for so long and it would be more difficult to adjust?

I have always seen myself that I am deaf with a cochlear implant therefore I have the best of both worlds. It hasn’t changed my outlook because I have a cochlear implant and I can hear with it on, I am still interested in the deaf world as well as the hearing world and have both hearing AND deaf friends regarding I am not fluent in British Sign Language and I have good speech thanks to the help of a cochlear implant and speech therapy.

I was brought up with a hearing family and feel they made the right choice to give me a cochlear implant when I was 9 years old. They sent me to hearing schools with the help of teachers of the deaf and in High school where there was a deaf base so I had interaction with other deaf children as well as hearing children. I feel it has shaped me into the person I am. An adult who is deaf with a cochlear implant who has good speech and basic finger spelling sign language which I want to learn more! I can also be sociable with both deaf AND hearing people.

Rant over :0) Thank you for listening!

27 October 2008

How a Cochlear Implant works...

I found this on YouTube and thought it was an intresting way of showing how a Cochlear Implant really works!! Hope people find it interesting!!

Bonfire Wishes...

It's now half term so the school I volunteer at is closed! I have no plans whatsoever ha!
Lots going on with Halloween etc although I never really celebrate it... but I do enjoy the trick and treaters we get! There's not many young kids on my road now that celebrate Halloween so we dont get many! I am however really looking forward to Bonfire Night!! The fact I love about Halloween is that Bonfire Night is the week after. If you do not know what Bonfire Night is about and what it represents here is a link to show you what this annual celebration means.


I love the fact you can huddle up to someone, keep warm in the cold and watch the fireworks displays. I will be going to an organised firework display that is arranged by the police.
The firework display they do are fantastic! Although I go with my mum to the display, I cant help but wish I had someone special to share the moment with but ah well I'm sure it wont be long before I have some one to share my thoughts and dreams with and hold his hand while we walk down the street! Ah a girl can dream can't she!!! :0)

24 October 2008

Worn out...

Since its half term next week at the school, I spent the last Friday there to help out. I was on reading duties today so every 5 minutes of reading with a pupil, they go back to class to get another pupil to read to me etc…

Sometimes I do the reading tasks in the classroom which can be a challenge as its noisy! I was in the staffroom today although there were still other teachers in there talking so I moved seats so that the pupil talk in to my LEFT ear because that’s which ear my cochlear implant is on therefore I hear the sounds better on that side in a noisy environment.

Hopefully, I’ll spend most of the week in bed coz I have been soooooooooo tired lately & keep dozing off!! I have been getting up early a lot lately what with volunteering and meeting friends! Not that I haven't enjoyed the volunteering and meeting my mates but I’m looking forward to a nice lie in!

22 October 2008

Art week...

This week at the school I volunteer at, its art week! there's lots going on in different classes!

The class I help out were doing aboriginal painting which originates from Australia and I did one of my own plates with the class! To see it closer click on the picture!


I also watched another class do the Haka dance which was VERY loud! If you havent heard of the Haka dance then there's a link below that shows you what it is.


18 October 2008

Spooky Going ons...

What with Halloween looming, I couldn't not post this spooky picture of the pumpkin that my friend Ben created, how evil does it look!!! I also challenged him to make one with a cochlear implant so watch this space to see if he does and I'll put it as the main blog picture on the day of Halloween! (31st october) :-P
Mwah ha ha ha!

15 October 2008

More pictures of the 1st cochlear implant journey...

These are pictures from my 1st Cochlear Implant when I was 9 years old in 1994

On the left is where I had my "special" cream & was just about to go for my operation. Below is me just back from the operation and sleeping it off...

Showing off my get well presents after waking up!

Below: Me with fellow cochlear implantee Laura! (yes 2 Lauras!!) She had her cochlear implant operation the day after mine and we made friends!

Newspaper Clippings...

These are articles that have been in my local paper about me. They are related to my cochlear implant and the condition I have. To look at the articles more closely click on the pictures.

This was a front page article with me when I was 8 pictured with my mum. We were enquiring for funding for my first cochlear implant.




This was a page 5 article when I got a laptop for a Christmas wish as I was nomminated by my mum.



10 October 2008

Quiet & Noisy Enviroments...

I always hate it when I have to go somewhere noisy because I know I’m not going to be hearing the people I’m going there with. I always like to go to a nice quiet cafĂ© or if there’s an upstairs to a building, I will go upstairs away from the noisy conversation and music blaring. I always take a friend to a quiet place if it’s up me or I’m going to have a good chat with them. My main friends always seem to pick noisy restaurants or we get placed on a table next to a kitchen with a lot of noisy clattering going on. I just find myself going quiet most of the night because I can’t hear a thing that’s going on which is a shame because when my friends all get together and we talk about what we have been getting up to & I always want to know what’s going on with them but I can’t hear a word they are saying because of background noise or they are all talking all at once so I can’t lip-read everyone. I can get the gist of what they are talking about if we were somewhere quiet and put my opinion in, but if we were in a noisy background place. I can’t even do that no matter how hard I try to focus on doing it!

If I can’t hear what a friend says or if they are at the far end of the table and I can’t hear what they are shouting, I sometimes give them my mobile and tell them to write it in text , then give it back to me so I know what they said or something they wanted to say. If the noisy places keep getting picked, I might have to start bringing a notepad with me so they can write stuff down!!! So that’s one my bad points of being deaf/having a cochlear implant which can be a shame because I don’t get to show off my personality and seem shy and quiet which I’m not on a one to one basis! I do let people know my concerns but it always seems to happen and it slips their mind while everything is going on or they think I am ok with listening with my cochlear implant

Cochlear implants can make you hear and give you the confidence to listen & use your speech but not the social interaction with people or group situations. I always tell a new person I’m deaf if I’m in a noisy place because the first place they go for is my ear to talk in to it and I need to see their face so I can lip-read. If it’s a quiet place with not much noise and a one to one basis or two people, I can be more confident and not have to tell them that I am deaf because I can hear them and know what they are talking about. I know some people can be surprised when I tell them in person that I’m deaf as they think my speech and hearing is good which is always a good side to a cochlear implant but it takes a good few years to get to that point but it’s all worth it!

6 October 2008

Cold days...

The autumn days are here once again and now the cold days too! I have caught the common cold bug going round and experiencing tinnitus in my cochlear implant ear because of it but at least I’m getting a flu jab on Saturday!
I always get a flu jab at my doctors free of charge in autumn because I am prone to catch infections easily than most people. I was supposed to have it last Saturday but I had to make an appointment! I usually go with my dad too because he has diabetes Type 2.
I shall be back nice and fresh when I’ve got over my cold!!