Somewhat Silent

I took a risk and sent him an Email!

by lette @ 10:29 am. Filed under Thoughts, Accessibility, Experiences, Discussion

I have just sent an email to my Specialist, I hope he doesnt think im a wierdo or anything, Im just deeply interested in finding out this puzzle that is the ‘Breathing through my ears’ phenomenon! This is the Email:

Mr Fenton, My name is Colette McNamara, a longterm patient of yours, please forgive me for emailing you on this email, as it was the only one I could access through the web to get in contact with you.

I realise you are busy, and I never get a chance to speak with you in the clinic, but I was hoping when you had the time if you would check out this weblog about the condition I complain and research about.

I write for a site called Somewhat Silent, and international weblog about deaf and hard of hearing and also medical issues.

The one subject I wrote about was well recieved with over 150 responces respectively about the title, ‘Breathing Through My Ears’

The condition of which I originally came to you with, and of which you have worked excellently to figure out, In april I got T-Tubes inserted and only called into see you last week about an irritation in my left ear which you perscribed ear drops to solve, and I have to return to you again in January.

I appreciate your help in trying to solve my ear problems that have been with me for 17years now! Prior to you there was Mr Keogh and now yourself!

I wanted to thank you personally for your efforts and wanted to share with you the responces I have recieved in trying to figure out this problem, of which many people all over the world also live with and have no name for, I started to write about this problem in June 2006 here is the link to that initial discussion:

http://somewhatsilent.com/2006/06/25/im-breathing-thru-my-ears/

Then I updated the discussion as I had met you and had worked a little through it:

http://somewhatsilent.com/2007/02/03/breathing-through-my-ears-discomfort-continued/

The Site itself is Somewhat silent and its link is here: http://somewhatsilent.com/

We would also love to have your say on the site, please feel free to email me back with your thoughts on the matter, I have undergone all this since I was 7 and have a deep interest in the medical side of things, not just the basics The face that there are an infinate ammount of people out there and their specialists are just saying its a simple ear infection intregues me, and I hope you too, I would love to learn more about it!

I hope you find it of interest, I go under the name Lette on the site.Thank you for your time, and I apologise for emailing you here again.

Colette McNamara.

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November 17, 2007

Im Totally Deaf…

by lette @ 10:47 am. Filed under Misc, Sounds, Thoughts, Experiences

Written in my own blog : www.lette.kimododreams.com on the 13th Nov.

I went in this morning for a visit to my Hearing specialist because of some trouble I have been having since the operation in April.
My right ear is as dead as a doornail, it doesnt do anything it causes me no trouble whatso ever, It doesnt hear anything and I dont know its there, and thats fine with me!
I wish I could say the same about my left ear!! Its a mess, since early July it started acting up with, pain discomfort and unbearable itching that is impossible to get at and horrible!! There are noises of all sorts and sometimes it sounds like I have a living thing running around inside my ear!!

So in I went this morning and told him everything, and the fact that im slowely loosing it because of all this stuff going on in my ear. He looked in, and said your right ear looks healthy, your left is alright but the Tube that we incerted in there is leaning against your ear canal and that is probably causing you all the discomfort…were going to have to move it.

“WHAT?? WHILE IM AWAKE??”
“Yeah it will be uncomfortable but shouldnt be painfull…”
He also told me my ear was wet inside in it and that leaves it open to infections so he needed to dry that up by putting powder in it.

We went through the ‘magic door’ I call it that, because its a room iv never been in, and every time I have gone into the ENT clinic I have been very curious to know what goes on in there.
Now that I was in there, I wished I hadnt been so curious!!!
He got me to lie down on the bed thing, it looked like a dentists chair, and he asked for what looked like the longest tweesers iv ever seen in my whole life, positioned my head, a light and himself, and began to move the T-Tube in my ear, it was uncomfortable to say the least!

The only way to describe it is like when getting a tooth pulled at the dentest, you cant feel it but the sounds, and other horrible feelings are going on and its a horrible experience.
As soon as he moved it my ear exploded into itching and it was the worst iv ever felt! a little sharp pain but nothing I couldnt handle, although I would have rathered no pain at all!
Then after about 5 mins at pulling and moving the tube, which is stuck through my ear drum remember, he said now thats that and you will feel a little puff and ill put in the powder to dry up the ear.

“PUFF”

…..and everything went…blank! all hearing I had left in that ear went dead, it was so strange!
“You may not hear anything out of that ear for a few days”
no shit im gone completely deaf! all I could make out was his lips, no sound in the least, nothing at all.
“Can you get by with only one aid?”
…”sorry what?”
He repeated slower and more pronounced,
“well if I have to” I said, but my right ear is dead.
“I dont want you to wear your left aid for a week, 2 weeks if you can go without it, to give your ear a chance to dry out. Ill call you back in a month to have a day procedure to trim the T-Tube, if its shorter it may calm down a bit, and if it doesnt we will have to take it out, and that may screw with your remaining hearing, but we will take this in steps and see how it goes”

So here I am, I cant hear a blessed thing, Keith god bless him was wonderful at lunch, scared shitless I might add, but tried a mixture of broken sign and carefully pronouncing his words, it worked
its strange though, I always thought id be prepaired for this if it happened, even if it is short term but its still scary, I cant hear anything at all, not even my voice and thats wierd.
So over the next while I have no hearing im taking advantage of learning to fine tune my sign language, im going into the DCC in the morning and sitting down with Sandra and saying nothing and just signing, and ill do that every day to bring my sign level up, so that if this does eventually happen long term, ill be some bit prepaired.

……………Nothing………absolutely nothing……..its strangely peacefull you know, and its funny to walk through town and watch cars and trucks fly past, and people talk and shout at eachother, lots of loud commotion, and hear…..nothing!!!

well its an experience, and wether I like it or not im stuck with it! and for now im doin alright…college is going to be a problem though!! meh, ill deal with that when it comes to it, and its only for a few days.

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October 20, 2007

Between a rock and a hard place!

by lette @ 6:55 am. Filed under Misc, Sounds, Thoughts, Politics, Accessibility, Experiences, Discussion, Discrimination

Here comes a rant, and im sorry, Im not talking to anyone in particular, I just need to get it off my chest!�

So I find most days I have to explain to people about my hearing, and it nearly always doesnt work in the sence that I can say the official title of my hearing loss is, �Severely deaf�, and yet I can answer people when they talk to me!
As I have explained before, Im neither completely deaf or completely hearing, im severely deaf, thats the title, and yet when I answer someone who asks me a question there like, WTF?? I thought you were deaf!! Deaf awarness is the problem, or the lack thereof! I have bilateral hearing aids, I lipread, and I sign only a tiny bit, my Lipreading is my main means of communication, my speach and voice sounds like that of a hearing person�.but Im not! I cant hear a lot of things, and with that EVERY DAYYYY without fail I find myself like a broken record explaining, that I understand what you say and I can talk but I cant HEAR you!! People cant seem to understand that! and the days your tired and cant concentrate on lipreading and they ask you questions and you cant answer them, their like, I thought you said you could understand me and today you cant?? People actually think I make it up! But I dont, I suffer, and Sometimes its enough to make you want to lock yourself away, but you cant because life goes on and tough shit!

If we all cant learn to understand that deaf is deaf HOH is HOH and yes we actually can in a way all be lumped in together as a group and get on with it, but no�I see it so much, mainly in the Deaf community itself, that Profoundly deaf people dont want to know you if you can speak, that means you can hear and your not the same as them!!� Actually my situation can be worse, I believe, and this is a horrible thing to say but sometimes iit can be true: �What you never had you never miss�
Now this is only a small minority of deaf people im talking about here, the most iv met and spoken to are lovely and im mad about them, but there are those few, and it makes no sence to me, why anyone should be treated differently for any reason!

I had perfect hearing, and now I dont and I have had to adjust and its a much harder thing and it messes you up, and the fact that some people dont want to understand is so upsetting.
Im in the middle of all this, I have no rock to call my own, Im neither completely deaf or completely hearing, no doctor, no interpreter, no person, can understand unless they have had this proplem, and so few do� Iv spoken to people online�to you lot and its great to discuss the problems on here because�ye understand, but in real life iv only ever met, HOH people or profoundly deaf people, no one like me in the middle. I have no one to truely Understand�I have people to talk to about it, Keith is the best in the world, but sometimes I feel so isolated and even though it seems like im doing so well and understand everything, the truth is sometimes I cant, and sometimes I just want to be on my own. Most days it doesnt bother me, but other days it does, and theres nothing I can do about that! Its up to other people to understand, not me, im the one who has to live with it already, why should I have to to change any more, iv enough adjustments to make!

Yet there is a part of me who wonders should I just be deaf, as in only use sign, but that wouldnt be the truth, I can hear little things, and I lipread really well, and im well able to speak, so NO I dont need to send myself to a group because it bothers other people!

Yet there is a danger of me waking one day soon and ill have no hearing at all� I cant lie anymore it does scare me, it scares the living shit out of me, and yet if it happens I know ill adjust again, and get on with it, but still I cant help feeling scared about loosing the hearing I have left. I have had hearing, and loosing it is a big deal� I have adjusted this far, but could I really live without Music, Keiths voice, My families voices, birdies, everything we take for granted�
Im sure I could but it would be so hard, I am loosing frequencies on a regular basis, and im trying so hard to deal with it, and adjust�. but will there be a time where I cant adjust anymore? what then?

Currently im involved in the Deaf Community Center in Limerick, and they are great, Sandra there so so nice and I feel like for once I have a place in the deaf community where im actually accepted for the problems I have, everyone is welcome there, and everyone gets on, no matter how severe, profound or mild your hearing problems are�I feel more people and places have to take that attitude.
I for one would welcome it with open arms.

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