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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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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July 8, 2007

Problems with Linguistics, Grammer, Spelling, English in general?

by lette @ 2:53 am. Filed under Thoughts, Accessibility, Discussion

I just want to know if im alone here, I know that people who have been born Deaf, have a clear disadvantage in learning Language and linguistic techniques, as they have never heard the language.

But I wasnt born Deaf, It started when I was 7, waaaay past the first 3 years of my life which apparently is the learning curve of Language unerstanding, but my English skills are terrible! Namely my spelling, and I just cant get around it, my grammer can be very bad also and my punctuation is all over the place, I put it down to my hearing difficulty, because I had real difficulty in primary school after my hearing problem was first dectected, But I dont know should I blame my deafness, I have a tendancy to spell things according to they way they sound to me, which because of my deafness is already distorted.

Even if I go off and learn the spellings over and over, I will eventually resort back to the bad way of spelling them again after a while! I dont know what it is!

I found this link on Deaf Linguistic Experience http://www.ericdigests.org/1993/deaf.htm which explains a fair bit in our favour with reguards to having difficulty in the field of language!�

Have any of you a problem like this?

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June 28, 2007

I Wish the Internet Would Catch Up.

by Sara @ 7:25 pm. Filed under Accessibility

I don’t own a TTY. I haven’t since I started owning a computer. My reasons are simple: I never need one. I can make phone calls with internet relay. It works. Simple.

Until I need to be able to have someone call ME. Then it all breaks down.

This week I almost had to bring my 6 month old son to the ER for… Mosquito bites. All because I didn’t have a TTY that his pediatrician could call back from, and they don’t have a number that you can call to talk to a pediatrician- just a number that you can call, leave your number, and a pediatrician will get back to you within the hour.

My son had three mosquito bites that had developed a large rash around them, and he had a slight fever (most likely due to teething) and I was concerned. But because I didn’t have a TTY, I had two options: Wait until my husband came home from work, or trek a half mile in the NYC heatwave, to sit in the ER for a few hours around Very Sick People.

Not wanting to expose my son to something potentially worse than what he already had, I gave him a cool bath and waited for my husband to come home.

My husband came home and called the pediatrician’s number, left his number, heard back from them 20 minutes later that all was fine and no need to bring the little guy into the ER unless the rash persisted, got worse, or the fever rose.

I wish the internet would catch up enough for me to be able to take incoming relay calls, and not just make outgoing ones. Maybe I can convince Skype to make a SkypeTTY?

I could buy a TTY. But this is the only time I’ve ever needed to accept an incoming phonecall in the past 7 years. A $500 piece of equipment that will be used once in 7 years is obscenely high priced. It would make more financial sense for me to pay someone to accept a phone call for me and transcribe it. :p

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