Sunday, January 18, 2009

Total Deafness Brings out my Evil Streak

I'm now totally deaf. I hear nothing. Nada. My cochlear implant processor has been relegated to a drawer until I can be reimplanted. This is not America where I can dial up private health insurance to get it done quickly - no private health insurance will touch anything to do with ears with a 10 foot barge pole. It makes me wonder if they think helping deafness is like cosmetic surgery. Ear job, boob job?

Instead I'm reliant on a Government Department to fund my reimplantation. I'm sure that Government Departments are the same world over, and work at one pace. Slow. Stifled with red tape and bureaucracy. New Zealand is no different.

Anyway. Being thrown into total deafness has its moments. Sometimes I cry. Sometimes I laugh. I saw pity in the mans eyes at the supermarket. He stopped to help me pick out the best tomatoes - nice dear old man. He had a beard and tried to talk to me. I couldn't lipread him, so I pointed to my ears and told him I'm completely deaf. I didn't apologise for it. HIs eyes changed and I could see pity. But it's not pity I want. It's understanding. Go and shave off your moustache and beard, then try talking to me again.

Being totally deaf brings out my evil streak. I would like nothing better than to play a practical joke. You know those places that advertise free hearing tests? Oh how I would love to turn up there.

'I think my hearing has gone down a bit - could I sign up for a free hearing test'

And when they start testing...

'Have you started the test yet?'

'I think your equipment is malfunctioning'

'I can't hear I can't hear'!!

However, I can't bring myself to be this mean - I can only think about it. However if one of my friends knew an audiologist and wanted me to play a practical joke on them, I'd sign up straight away! But I couldn't be mean to stranger. Not today anyway.

Besides knowing my luck, I'd get one that didn't have a sense of humour!! So far I've only met a couple of audiologists that have my sense of humour. But I guess that's not so surprising as my humour is a bit out there!

21 comments:

Bron said...

Hmmm just thinking what I would do if I met a deaf person in the supermarket and they couldn't lip read me....????? Get out a piece of paper and write stuff down? If I could sign I could try that I guess but I only know the alphabet. What if they didn't know sign? Mime?

I guess if I was deaf I would just take a pen and paper everywhere and ask people to write down what I couldn't work out. But I would feel like a dickhead.

Robyn said...

Been a hearie in reality, I always forget to take pen and paper with me.

What I really need is a new implant!

Bron said...

Yep!

In the mean time you could just tell little old men with beards that you are allergic to facial hair and that you have to run away as soon as possible.

MM said...

I completely empathize. There is nothing worse than hearing then not hearing. I too rarely go anywhere without a pen or paper in my pocket, nobody signs around here ! Luckily I have a good speaking voice. Tears ? yep we have all had that... You get much the same thing when a hearing aid fails for no reason.

My mother was very deaf with an hearing aid, and when the battery went, she had palpitations, profuse sweating, and downright fear and terror in her eyes. When she was in hospital and it failed, a nurse drove to my home to fetch me as she was trying to get out of the hospital on her hands and knees, because the nurses couldn't change her battery.

The fear of being deaf was very real and tangible.

MM said...

I completely empathize. There is nothing worse than hearing then not hearing. I too rarely go anywhere without a pen or paper in my pocket, nobody signs around here ! Luckily I have a good speaking voice. Tears ? yep we have all had that... You get much the same thing when a hearing aid fails for no reason.

My mother was very deaf with an hearing aid, and when the battery went, she had palpitations, profuse sweating, and downright fear and terror in her eyes. When she was in hospital and it failed, a nurse drove to my home to fetch me as she was trying to get out of the hospital on her hands and knees, because the nurses couldn't change her battery.

The fear of being deaf was very real and tangible.

Anonymous said...

What you should do is start a conversation, then ask a good question.

Unfortunately, you then realise that you're deaf and can't hear the response. :)

I do that all the time, really bad habit!

SpeakUp Librarian said...

Keep venting, Robyn. Writing about your experience is therapeutic for you and raises awareness for the rest of us.
[To NZ government: get her that implant already! Really do you want her to get any crazier?]
We're rooting for you, Robyn! Hang in there.
Sarah

SweetMind said...

Learn to live with your own being deaf and cope with it.

That is a co-dependency for people who depends on those materialism.. As far as I am not gonna to feel pity on people who desperate for not able to hear because you refused to accept or deal with your being deaf as is.. It s not my issue anymore.

I don't whine because I cannot able to hear that gives me a peaceful mind without having any stress from the sounds or pressure by Audism who thinks they have the right to force us to hear after all, we do not hear the spoken languages. AUDISM and MEDICAL professional lies to our parents and to the society people. Scoffs!

These noise pollution and the unnecessary surgery for us to deal with that shows that it is not healthy for everyone especially Deaf babies/children with or without disability..

Now IPOD is dangerous for those people who have HA and CI devices that you should be aware of it by now. It makes you more deaf so you cannot avoid it. There is more evidences for me to see those devices are dangerous and unhealthy for us to deal with our mind, sould and body. People need to see the truth, no matter you like it or not.

Those devices are full of junkies and scams by the corporations. It s all about $$$$$$$$$$$$$. It can makes you more sick and might have to face the life and death risks.

So therefore I don't feel sorry for people who whines for not being able to hear while they do not have any respect for our visual languages of Deaf Community and along.

Good luck and Hope you'll learn how to live by being deaf as is which is very important for you to accept and deal with. That is all I gotta to say.

Thank you.
DeafSweetMind

Nia Knowles said...

Hi Robyn,

At what age did you learn ASL? Do you think it was harder for you to learn/embrace because you could also hear?

~Nia

Robyn said...

Hi Sweetmind,

Thank you for your comments. But I need to address a few things in your comments.

Firstly, I can sign, and I do accept my deafness, but I know there is a better way for ME, and that a cochlear implant works best for ME. If the CI doesn't work for me, then I will accept the way I am and make the appropriate changes, but right now, that is not an ooption.

My friends are all hearing. I'm not about to abandon them and only socialise with Deaf people. That's not who I am, and it's unfeasible to think that my friends and family, who lead busy lives also, will learn sign just to accommodate me. I wouldn't want them to.

As for iPods being dangerous? Theyr'e dangerous for hearing people yes, when they turn up the volume too loud, for too long. Too much exposure to this will amke them deaf. But for people with Implants, well - the ipod is not going to make us deaf as we're already totally deaf, so an iPod cannot do any harm. More to the point, the CI is programmed to only bring in noise to a certain level of loudness and you can't make this any louder - so iPods are as safe as anything.

The Cochlear Implant does not cause death, and is not full of junk.

Your comment only shows you how misinformed you are.

Cheers
Robyn

Robyn said...

Hi Nia,

I learnt NZSL (not ASL) when I was about 26. I used it between the ages of 26 and 33 just before I had my first cochlear implant.

Whilst I am not fluent, I am easily understood. One of hte reasons I'm not fluent is that most of my friends are hearing, so I was never fully immersed in the Deaf Society.

Most of my Deaf friends are oral deaf, still very profoundly deaf, and they do sign, but mainly lipread like myself.

Whilst I can sign, because I'm so reliant on lipreading and facial clues, I forget to look at the signs, so don't really follow sign language myself.

My only reason I didn't embrace it fully was that not enough people know sign language that are in my life, and they're not about to learn. I will not abandon my friends just because I'm deaf. They do make an effort so I can lipread them more easily, and they would never abandon me just because I'm now deaf.

Even with no sound, I'm a fairly good lipreader, except when it comes to people with beards and moustaches, or people with accents. I can get by, just not as well as I do with a cochlear implant - it definitely makes a difference so I'm definitely gunning for another one.

Cheers
Robyn

Liz said...

Hi Robyn,
You are certainly giving me a different perspective on how "successful" my CI's are--I have so much to be thankful for. Ok, things sound "funny" and music doesn't have melody--but I still have SOUND, and I can comprehend so much speech!

My stomach aches to read of you being plunged ~back~ into silence after such jubilation with your reimplantation. My heart hears you, and I totally agree with the person who said keep venting. You need it. And it doesn't hurt the rest of us any--it helps us, too. I'm more patient (with my own hearing) and more compassionate (of those waiting for a CI) coming out of reading your posts.

Blessings on you my dear--and wishing your government some fire in their bellies to get your reimplantation done SOON!

A hug for you from across the big pond...
Liz

SweetMind said...

"Your comment only shows you how misinformed you are."

Oh yeah! For ten years, these CI users with their negative audist attitude who fought and turn against me for telling the truth before the evidence shows up. I have a strong instinct and know the truth from the bottom of my heart. Guess what, a lot of evidences shows up that I already said it all along. So many of CIers and the parents do not read everything before and after, they or their kids got it. Some are very upset for not having their honest to them. Guess what they removed my truth messages that these people do not want people to know the truth.

You better check www.cochlearwar.com and find the cw forum. NO one can take that away from me anymore after all I DID showed the evidences in my blog and other forums who prevents/blocks me to make the comment or post my own blog in wordpress to show the evidences. So I got punished for having their wishes to cover up the truth which is a description of HATE CRIME. Censorship people who shut me out after all I did not violated anything, MIND YOU!

Check this out in DeafNotes.com :)

I find this is funny for you to say this to me. Congrats for being so rightful to determine that I am not giving the right information. How about having the nervous system of Brain and Eyes disorders that affects from the loud noises and CI makes it too louder? MIND YOU!

It's a real not good choice for the nervous system, people allowed to abuse Deaf babies/children's eyes, deaf ears, and brain systems that distort them in many ways with no full knowledge.

Robyn, You don't need to explain as I can read your profile. Since you are being legally deaf since ten years old that it seems that you have not accepted your being deaf yet. I don't need to hear anybody's whiners and their being so negative messages about Deaf community and our being deaf as well all those years. It is your issues not ours.

I don't understand you anymore since you whined about for not being part of the conversation with your family and nurses/doctors in the hospital. I can see that you do not able to hear/understand the spoken language from a start. IMO, they are rude and do not respect your needs. So therefore they should get an interpreter for you anyhow.

It s getting more mixed messages going on from you lately. It s not the answer to solve the problem for having the barrier of communication that is still to be continued the conflict interests. So I pointed that out to make you think before you are saying it.

So you take care and have a nice life since you are wasting my time with your audist attitude. So long!

I gotta to say I love this man named CSN who is latened deaf and deaf-blind who told the truth about his non-abilities to hear the spoken language with his hearing device after all he can still hear the sounds that annoys against him all along if you mind. He is not the only one who said it all along so keep that in your mind.

I like to say this again. "Learn to live with your own being deaf and cope with it." That's part of life that we faced it every day if you care enough to accept that is the way of life.

CURE and MIRACLE are the biggest nonsense for them to say it because too much flawed ideas by CI corporations. The devices affects human beings that is when it happens. They lies too much that you accept their lies. HOW 258?

So long! :)
Deaf SweetMind

Robyn said...

Sweetmind,

Just where is my audist attitude?

I'm not pushing for implants on everyone - I never have. I'm pushing for another implant for ME, as it works best for ME. Surely thats My choice? That dosn't make me Audist.

I advocate for chlidren who have implants to learn to sign as well - I believe in total communication.

I just pointed out that iPods aren't dangerous for people with implants, and nor do people die from them. This is where you are misinformed.

Yes - I get upset when I can't join in with big groups, but signing for ME is not the answer. My friends and family will not learn sign, and I'm not about to abandon them - nor them me - just because I can't hear. They're still my friends and family.

As for you being misinformed - well - I'm sorry but you are. The implant does not cause brain or nervous system disorders. It's simply a hearing aid, when no other hearing aid works. And the reason I know is that Ive been an implant user for 16 years, and I also have done my research.

And it works. It works very very well, and I speak from experience in that regard too. It's just so disappointing for ME that through no fault of anyone's, that my electrodes hae migrated and I'm currently waiting for revision surgery.

My blogs aren't here to whine or carry on, my blogs are giving you my own personal experiences, what I'm going through right now. All very valid when you've gone from near normal hearing for 16 years with an implant, to total deafness again.

I accept who I am and what I am very well. But at present, I'm just grieving for what I once had, and hope to have again. I'm not quite ready to give up hope yet - giving up is not in my vocabularly.

Should my new implant not work because of my deformed ears, I will simply adjust once more, probably get a hearing ear dog, and make a few changes to the way I do things.

Cheers
Robyn

Rachel @ Cochlear Implant Online said...

SweetMind,

Everybody has the right to choose how they should live their life. No one should dictate one person on how they should live their life. Just because you personally enjoy being deaf does not mean that it works for all deaf people. We all have our own personal preferences.

I'm deaf, and I've been using a cochlear implant since I was two and a half years old. I enjoy hearing and speaking very much, and I'm very happy, and that's a personal choice of mine.

Robyn's life was very happy and fulfilling when her cochlear implant was working very well, and all she is saying is that she can't wait to get a new cochlear implant. That's her personal choice.

You enjoy being deaf and using ASL, and that's your personal choice.

So, please respect people's choices.

Morgan said...

Sweetmind,

God, I am so sick to death of deaf people abusing hearing and CI people! *** Does being deaf give you a special licence to be intolerant towards other people or something? You bitch and moan about being judged unfairly but then turn around and do exactly the same to others. What gives???? I'm unapologetically a hearing person so I am sure it will seem somehow "wrong" of me to say this but quite frankly I don't care if it does. I hate intolerance no matter where it comes from. My beef here is that you have read Robyn's blog an made stupid assumptions about her that are untrue.

For your information, just because we are able to hear does not mean that we are automatically insensitive arseholes who disrespect deaf people or sign language or want to force deaf people to hear. I for one want to learn sign myself so I have the option to talk in sign if I want or need to. I also feel very strongly that deaf people not be judged or treated unfairly by the hearing community (as they sometimes are unfortunately). And I respect everyone's right to choose what is right for them.

Your attitude towards Robyn is disgusting considering you haven't even bothered to read carefully and think about what she is really saying before posting. You are reading things into what she has written that aren't even there. She certainly isn't interested in forcing anyone to get an implant. Robyn respects everyone and perhaps that is why she can communicate so effectively regardless of whether it is in sign, writing or by talking. She isn't into playing "us and them" or excluding anyone. What about you? You haven't bothered to change your english syntax to match that of everyone else on this blog. Should we make (probably wrongly) hasty assumptions then that you are incapable of having the same sort of respect for other people that Robyn has? These things go both ways.

One thing you certainly are is misinformed. Ipods do not make you deaf - unless you are stupid and turn them up too loud. And the volume is controlled by the CI for those with one so how can that be dangerous?

If you feel that people should have a more positive attitude towards the deaf community and respect your culture maybe you should start by not presenting such a negative one yourself and making everyone else in it look like an unapproachable twat.

*** Apologies to deaf people who are not intolerant like this. I realise this is only a small number of people.

SweetMind said...

*Sigh* It's that pity about being deaf that the CIers *want* to see. They want deafs to feel bad about being deaf so they can promise to "fix" it. But the people who have pity don't want to admit that being deaf cannot be "fixed" like the CIers promise them. It's the CIers - not the D/deafs - that need to be "fixed" about their attitude.


She needs to grow up. AND learn how to exist being deaf. Many people have done this for a lot longer than she's been around. The thing about audism is that it leads DIRECTLY to CIs! Audism does not respect deafies. Pah! If she has been deaf since 10 years old then she should know that there is nothing to be afraid of.

That's a real nasty rude abuses toward Deaf community and Deaf babies/children all along for so many years. Mind you. What a real ashamed for these audist attitude people who treats us and our Deaf community like that. After all, you are not part of the Deaf community which it s okay with me. Dont come here to destroy everything what we asked for our Deaf rights. MIND YOU!

We, The Deaf people do need our Deaf rights to protect ourselves and being deaf if you care enough to know better while ADA do not applied toward us in many ways.

This is gonna to be the last time to reply because I am not gonna to pity you at all.

THANK YOU VERY MUCH for blame me for everything that I didnt do, if you mind. Scoffs!

Being deaf is Okay for us to live with and cope with it.

GOOD BYE!

DeafSweetMind

Robyn said...

"*Sigh* It's that pity about being deaf that the CIers *want* to see. They want deafs to feel bad about being deaf so they can promise to "fix" it. But the people who have pity don't want to admit that being deaf cannot be "fixed" like the CIers promise them. It's the CIers - not the D/deafs - that need to be "fixed" about their attitude."

Let's pick your comments apart paragraph by paragraph. With this paragraph.... just WHERE have I promised that CI can fix other Deaf people. I have NEVER pushed CI's onto anyone. You're obviouly mistaking me for someone else. I agree the CI is not a cure, but I've always known that. Take my CI off and I'm still deaf. It's not the CI companies that have used the word 'CURE', it's the media, and they can never be trusted anyway. So let it be known that I'm not, and have NEVER pushed a CI onto anyway - I respect people's choices. Do you respect mine?

Paragraph two...
"She needs to grow up. AND learn how to exist being deaf. Many people have done this for a lot longer than she's been around. The thing about audism is that it leads DIRECTLY to CIs! Audism does not respect deafies. Pah! If she has been deaf since 10 years old then she should know that there is nothing to be afraid of."

I need to grow up? Just who is judging who here? I have been HEARING IMPAIRED since I was born, and I went PROFOUNDLY DEAF at 31. If you read my profile correctly. I know I'm totally deaf now, and I'm not afraid it, but why should I just accept total deafness? The CI has worked for me before, so why shouldn't I want or have it again? Again - this is MY choice, and you should not be scoffing at this. IF the CI doesn't work, then i will make changes and adjustments to my life. I am not AFRAID of deafness, but right now I simply don't want it knowing there's a chance that I can and will hear again with the CI.

I am not blaming you for anything, all I did was point out where you were wrongly informed. As for the ADA - you are extremely lucky you live in a country that have laws like that - I am extremely envious. We have NOTHING like that here in New Zealand, so deaf and Deaf are not protected, we do't get subtitles automatically, we have to fight for them. We have only very recently got relay services.

Cochlear implants is not abuse. It's a way for people, both adults and children, to have a chance to hear or hear again, and to give them a very valid chance of having more success in the hearing world, if they want it.

Cheers
Robyn

MM said...

Robyn is perfectly entitled to grieve for her lost hearing. I really cannot understand the critics of that, it shows lack of knowledge, and lack of empathy too.

I rather fear this HUGE divide of the issue of CI's has gone from the operation and choice of, (An Argument that is already lost in the 'Deaf' community), to undermining those that have them instead. This is pretty petty and unworthy of deaf people, who otherwise expresss the view, live and let live', it is a lie isn't it ?

I've not read spo much ignorance on CI's since they posted ant-VI views that contained gems like "You are left with a hole in your head, and when it rains the water goes in..." DOH !

Robyn said...

Thanks MM,

I cannot believe the misinformation that Sweetmind is spreading, nor can I believe the misinformation that is in the website she quoted where she gets her 'information' from. (www.cochlearwar.com) It's simply 'old'.

Anyway - she is not listening or taking in what I'm saying - she just spouts the same thing over and over. So therefore, she's actually not interested in communicating, empathising, or even respecting what I am currently going through.

She does seem to have a huge chip on her shoulder though, which makes me wonder if she herself is some sort of denial.

Cheers
Robyn

Karen Mayes said...

Oh, ignore DeafSweetMind... she appeared on Mike McConnell's blog who later blocked her from his blog. She got banned from AllDeaf.com a while ago. Even her Wordpress had to close her blog after she copied and pasted another blogger's postings, taking credit.

You don't want to know. Just ignore her.