Hi everyone my name is Mela (short for Manuella). I am 46 totally deaf, married with 2 grown teenage boys I live in the Cape in South Africa. I am so happy to have found your site. I have spent the last 2 days reading all the posts and must say you all sound like a lovely group of people. It is so nice to be in a situation whereby we dont need to worry about lipreading, signing or repeating ourselves to be heard. Here we can share things like everyone else without our hearing or lack thereof being a problem.
I want to share my story with you as i am sure you will understand just how i feel. I had constant tonsilitis from the age of 3 and eventually i developed repeated ear infections. In those days the doctors refused point blank to remove ones tonsils. When i was 9 i had my 1st ear op due to acute mastoiditis. This was the beginning of years of repeated surgery for mastoiditis and cholestiatoma. They removed my tonsils when i was 10 but by then the damage to my ears was already done. I received my first hearing aids (ones with ear moulds and fitted behind my ears) when i was 13 and it was an amazing experience. I couldnt believe how noisy it was and still remember saying so to my mother.
Due to having so many operations sometimes 3 a year i would miss alot of school not to mention not being able to hear made school hell. Even though the teachers knew i couldnt hear so well they still walked up and down the aisles reading notes which we had to write down needless to say i had more blank spaces than words. I failed 3 times because of being in hospital so many times and missed so much work. My father kept telling me i was stupid and that hurt. I eventually was in the same grade as my younger sister which was very embaressing but also helped as i would get my notes from her.My mother tried to get me into the deaf school but the nuns at the school turned me down as they said i was not deaf enough and my speach was perfect and if i was to mix with kids who had speech defects from being deaf it would have a negative effect on me. I went to art school in grade 10 but battled and dropped out at the end of that year. I did not have the techniques which were taught in grade 8.
By the time i was 14 I was totally deaf in my right ear and from all the surgeries i had no nerve hearing left and my canal collapsed. I developed an allergy to the plastic tubing that fitted into the ear mould and the top of my ear was constantly raw, i would ease my aid on in the morning and remove it when i went to sleep. The pain was awful sometimes i would wrap a piece of cottonwool around the tubing to give my ear some protection. I remember having one of my ops and because they removed so much bone they were worried my ear canal would collapse so they made me a hard mould and every day twice a day i would have to take it out clean my ear and the mould and put cream on the mould and reinsert it. I had to keep it in 24/7. Every week for 6 weeks i would go back to the audiologist who would make a bigger one. Those days were absolute hell.
Oneday when i was having a check up the professer told my mom he was sure my hearing was worse than we thought and that i was actually lip reading. He said hello but with no vocals and asked me how i was and i answered him. I have been lip reading ever since.
When i was 18 i had a major op on my left ear and the professor told me it was a miracle I should have been dead as the damage and infection had been so bad. I guess its a case of only the good die young. I had new hearing aids every 2 years. I must add that with each op my hearing got worse and worse. Communication became harder and harder I became very introvert.
When i left school and tried to get a job it was a major battle as my hearing was always made to be a huge problem. When i did get work i had to work 100 times harder to prove that my hearing was not the issue but ignorance most certainly was. Unfortunately here in South Africa handicapped people have a very hard time getting jobs. It is only in the last few years that the law states that if we have the qualifications we are entitled to get the job. I remember one interview where the manager told me all about the job and said i was perfect for it BUT my hearing was an issue as he didnt know if his staff would cope with it. I asked him if he had had any problems communicating with me and he said no but still felt it would be a problem. I told him i was very sorry for him as he had a bigger problem than i did and left.
Having my father constantly telling me i was stupid I began to believe i was and by the time I started working I had no self esteem and my self confidence was non existent. My ears settled down for 12 years
In 1984 I developed a very serious ear infection in my left ear, I always had a problem with infections from the moulds they used for the aids, I dont know how many different types they tried but to no avail. Anyway for 18 months i went from ENT to ENT none of whom were prepared to operate as there was a 50% chance i would not make it. Eventually i saw an old professor who had a few patients who he saw at home. He took one look at me and booked me in for surgery the next morning. It took 8 hours to clean up all the infected tissue. I had 4 surgeries to rebuild my inner ear. They used skin from my thighs to make grafts for my canal, if i have hairy ears i will know why. Needless to say that was the end of my nerve hearing. I was fitted with my first bone conducter aid and it was great that i could hear but i got headaches from the band but if it was the only way i could here i would put up with the discomfort.
Last year that aid was no longer strong enough and I was fitted with a BAHA. I have the cordelle 2 it has the box and cord and the bone conductor that fits in the rod. It is the best thing that happened to me. Having the rod inserted was extremely painful but oh so worth it. The sound is so much better, for the first time in my life I can hear people talking in another room, and just generally hear when i am spoken to. Its such a wonderful feeling.
I think I will end here for tonight. Till next time bye.
September 16th, 2006 at 12:07 pm
Hi, Mela! Yes, you’re right we’re a lovely group of people.:)
Your story was overwhelming. Everything you’ve been through was
really tough. I’m happy for you that you can hear best now with the
Cordelle. Nice you joined Somewhat Silent- the site for beautiful
people.
September 18th, 2006 at 5:20 am
Welcome Mela!
Sorry you’ve been through so much. I can’t begin to imagine how painful all of those operations must be. Not to mention dealing with people that didn’t know how to cope with your hearing loss and that made life difficult for you.
So glad to have you here! Welcome.
Thank you for sharing your story.
September 18th, 2006 at 10:14 am
Hi Sara thanks for the kind words. I already feel like i am amongst friends something i have never had the privelege of experiencing.
September 19th, 2006 at 6:35 pm
Howdy welcome abord
I kinda know how u feel there, but im severely deaf, not completely deaf! my hearing has being slowely dying since the age of 7 and I have had 8 operations on my ears each leaving them worse than the last, im sire uv read this already, but its great here, to know that ur not alone
so welcome abord again
September 20th, 2006 at 2:48 am
Thanks lette it is great to know that we are not alone. I have always felt like a misfit could not follow conversations with the normal hearing and couldn’t cope with the deaf. I lipread very well and with my new aid can hear quite well. Still only one on one but that suits me fine. I tried joining the club here for the deaf and hearing impaired and just felt so out of place. I dont sign i was told it would not be a good idea as it makes one withdraw and only communicate by signing. So here i am posting instead no communication barriers.
September 21st, 2006 at 8:07 am
Yup I know exactly how u feel, im in college with 2 completely deaf individuals, who i get on great with, but i still feel left out, because I can talk, and lipread, and for all intencive purposes dont behave anything like a ddeaf person, but it doesnt change the fact that I am!! but im only currently learning sign language, which I will grow to depend on more, they would be flying in conversation and I wouldnt get the half of it!! and with everyone elso who can hear, I dont fit in there either, they can hear everything and I can only pick up certain things, and other things I cant hear at all even with the 2 hearing aids on!! so the misfit feelings bears heavy here too
thats why I love the internet, I can come on here and communicate without being judged.
In reallife because im in an inbetween stage with the hearing loss, the hearing people look at me and soy, ’she’s not deaf, look she can talk and answer you back, she must be fine, and the deaf people look at me in a similar light!! so its nice to escape on here and say how I feel without someone judging me
September 21st, 2006 at 10:27 am
I was interested to note you say you are learning Irish sign language, i always thought it would be the same all over the world. Another thing that makes communicating difficult is when you get older and your vision isnt as sharp as it used to be, i now wear glasses as well. I find by late afternoon i just want to switch off and close my eyes and give myself a well deserved break. I dont think the hearing realize just how much work it is for us to communicate. I went without my aid for 3 months at one stage and i just withdrew. I could not watch tv and family conversations were hopeless so i would go to bed and read. Hubby got very upset as he knew it was tiring to lipread and so we communicated as little as possible. It was very lonely, i felt like i had been dropped down a hole and there was no light. I said to him that i think being deaf is worse than being blind. The reason being when you are blind people can see it and will go out of there way to help, but when you are deaf no one knows and if you tell them you are and you speak fluently they dont believe you and if they do they have no idea what to do. I believe if you are blind you can visualize say waves in the ocean but you cannot recall the sound if you cannot hear. You can see them breaking on the rocks but it loses its splendour without the sound. Another observation is that while losing my hearing my other senses sharpened. I have a very sharp sense of smell and can feel when someone walks into a room. I think it is amazing how our bodies work.
September 21st, 2006 at 11:12 am
yeah I didnt know till a few years back, that sign is different in different countries, oh well I guess it would be!! like any other language
I know what you mean about the other sences, I used to wear glasses for reading and such and since iv becone more reliant on lipreading, I no longer need my glasses, my eyes are great again!! also my sence of smell is very sharp 
which is an up side to the hearing going on the down side!! :p it is hard tho when you tell people that ur deaf and they take it on board and because ur speech and understanding is great they for get the next day!! I feel like a broken record sometimes!!
September 21st, 2006 at 9:00 pm
Wow, long and unfortunately not uncommon story you have there Mela… I know several people who have had similar medical histories to yourself, who now wear BAHAs.
South Africa explains why you write English in such a way that made me think you were not British, but didn’t seem to be American either… Interestingly South African Sign Language is related to British and Irish sign languages with some American as well.
In comparison to yourself I was very lucky, I have always had my deafness, which is mostly conductive. I always had a bone conduction hearing aid (one on a pressure band) and then the first BAHA in 1992. I have recently got a second BAHA implant, and been playing with BAHA aids on loan this week.
Your husband and children sound great, as families of deaf people often are - pragmatic and sensitive. I’m sorry to hear your father was so unpleasant and damaging - sadly not all that unusual, several of my deaf friends have very unsympathetic, or outright hostile parents
Anyway, welcome to Somewhat Silent, where the knowledge that lipreading is exhausting and hearing with hearing aids isn’t the same as with ears… Where you have seen we discuss the good and bad facets of deafness.
September 22nd, 2006 at 3:24 am
Hi Barakta. Yeah my family are great i am really blessed although when i havent had my aid hubby would get very frustrated as he hated me feeling so cut off. It upsets him more than it does me. Its the same with my aid he gets very upset when people stare, what with the cord from my aid showing I tell him to ignore it as it doesnt bother me. I generally wear shirts with breast pockets and make a small button hole in the back of the shirt/blouse pocket. I then fit my aid in my pocket and pass the cord through the button hole into the top and out the top and connect it into the conductor. My hair is shoulder length so the cord and conductor are not visible.
Thanks for the input about sign language. What are your feelings with regards to signing.
As i have said before my B.A.H.A. really has made such a difference. Do you also wear a Cordelle?
September 22nd, 2006 at 3:29 am
Have any of you found that when you tell people you are deaf/hearing impaired but lip read well so when they talk to you they must face you and keep there hands away from there mouths the person gets all self conscious and immediately puts there hands over there mouths?. I find it very amusing.
September 23rd, 2006 at 2:33 am
hi again
I wear bilateral hearing aids, both ears, I used to be so self consious wearing them first, but now its nothing, like wearing a pair of glasses i suppose! they are very handy in that they have the ‘T’ facility of which iv never had before, and it is so handy for the cinema and such.
My feelings regarding sign language?? I love learing it, I think its wonderful to have a language with out words, I find it so interesting to learn and great to use, I find I use it more and more in college, and at home my fiance has the basics and fingerspelling so if I miss something he will sign as best he can, he is so good to make the effort, I dont think it can be easy for him all the time, he could be talking away beside me and I wouldnt even know!! but he is the best, he is always trying
and about the lipreading thing,, yes its hilarious when people see me staring at their mouth and eyes and face in general they get a little freaked out!! even after telling them my situation!! I think its funny!!
October 2nd, 2006 at 7:16 pm
Hi Mela,
I wear a BAHA Classic which is an ear level BAHA which is being discontinued in a few months. I am not quite deaf enough to be allowed a Cordelle and there is the disadvantage of the Cordelle being a body worn BAHA. I wore box-aids for a bit as a child and found them very annoying. I often get tangled up in the wire from my Classic to my audio-adaptor plugged into my MP3 player or computer.
It may be useful for you to know that Entific are considering and working on developing an ear-level Cordelle a like BAHA. I.e something which is small and behind the ear which does not need to be body-worn for power. Also if you are interested in receiving a newsletter written by and for BAHA users then let me know an email address my friend can send subscription information to. It doesn’t cost very much (even international from UK) and is very interesting to read.
I am learning sign language at the moment, as I have been on and off for about 6 years. I found out yesterday that I have not failed my level 2 sign exam as I thought I had - my tutor put in an appeal for me and it passed. I need to see if I can get onto a level 3 course now, or if I’ll have to wait until Jan/Sept 2007.
I think sign is useful, for me it was a sign of independence from audiologists and hearing aids, a way for me to have the choice of another option. I am no way near to being fluent which is my eventual aim, but I could get by without my aids using sign alone if I had to. This is useful for putting uppity audiologists in their place when they don’t listen to my genuine requirements for a hearing aid. They find the idea that I would renounce existing amplification options in favour of sign if the options aren’t good enough to be very frightening
I think the politics surrounding sign language and oralism to young deaf children is extremely complex. Ideally I would support a policy of bilingualism where deaf children (if not all children) were taught both speech and sign. If their residual hearing and auditory processing abilities meant that speech was not useful, they would still be provided with the essential language (sign) which they need for mature and complex linguistic development.
Research shows that children need to be exposed to A language before the age of 5 or they will be unable to use some of the more complex grammatical features of a language. Sign languages are languages and this is now universally accepted. I get angry when I see deaf children of 9 or 10 years of age who have very poor language skills. They are still doing tasks 2 or 3 year olds should be able to do. If they had been taught/exposed to sign they may have had a chance to develop an understanding of language which would not be limited by their hearing. By giving deaf children both sign and speech they can mix and match to suit the various things we use languag and communication for. They can try their best to speak when in the hearing world, while still having sign for using with other deaf people or family.
I personally mix and match sign and speech by preference. My partner has studied sign for 3 years despite having a lifelong hatred of languages. I often unplug my BAHA and give my brain a break as I find that I get tired easily and sometimes my brain just can’t process speech and it is only a garbled mess of gibberish. I think learning sign has enhanced my life and increased the number of options available to me. I have no regrets.
Natalya
October 3rd, 2006 at 1:46 am
Hi Barakta
Thanks for the info regarding the BAHA. When I heard I was getting the BAHA last year I thought it would be cordless and must say was very disappointed when I found out I would still have the cord and box aid, at least I can hear and thats more important. I would really appreciate getting the newsletter. My e-mail address is melac@cidev.com
Thanks for your imput regarding signing I found your views and info very interesting. The more I hear about the benefits the more i like it especially as my hearing will continue to deteriorate to the point where i will no longer be able to wear an aid. It would be so great to have another way of communicating then and even now when I get tired and need a break from lip reading or even for those days when I get a headache from all the noise. Having three men in my house there is always music blaring and it is so nice to be able to switch off.
When I got my first bone conduction aid with the band I had to go to group sessions as I got it through the government hospital so all the training audiologists got to work on us for practice. There were a few people in the group whose hearing was way better than mine but still required hearing aids and they refused to wear them. One was studying to be a teacher and said she didnt want her students to know she was hearing impaired, I could not help but think how silly that was. There was something that could make her life so much easier but she was refusing it. I sometimes wonder if it is vanity or fear of having stigma attached to them once people knew. Its sad very very sad.
Mela
October 3rd, 2006 at 6:49 pm
Hi Mela,
I will pass on your email address and name to my friend Lyn who runs the BAHA charity so she can send you some stuff by email. She’s the loveliest lady I know - one of those people who instantly puts people at ease.
If you are interested in BAHA specific deaf places online then there is Lyn’s BAHA charity/organisation website which has a forum at http://www.baha-users-support.com. There is also a Yahoo group which I run which is called BAHA_PPL which can be found at http://groups.yahoo.com/group/BAHA_PPL/ . You will need a Yahoo identity to join the yahoo group. The membership of both groups has a fair amount of overlap, baha-users-support has a higher proportion of active Brits, and BAHA_PPL has lots of US/Canadian folk, but otherwise they are pretty similar. We operate on a very friendly sister-like way… If you get stcuk let me know and I’ll see what I can do to help.
I find a little bit of sign language goes an awful long way. When my partner met my good friend P whose first and main language is sign it was the work of a few weekends and patience and using a computer at times to get them to a level where they could communicate.
Sometimes we deafies find it difficult to disambiguate two words which have different letters but similar lipreading pattern. For example M, P and B all look very similar on the mouth. If we can’t hear the appropriate frequencies then ball, mall and pall all look the same and if we’re low on context for the conversation the whole thing can get hung up on one word which doesn’t make sense…
One of the things that fingerspelling can help with is the ‘cueing’ of words if there is confusion, or even fingerspelling the whole word out quickly without resorting to pen and paper. Especially useful once you’ve have a little practice and need to introduce new words, or two words or names which look and sound the same. I got my mum to fingerspell at me when she had been talking about one of my older sister’s friends called ‘Pash’ and I’d thought she was talking about the sister’s dog which is called ‘patch’. I realise there was something odd going on so interrupted to disambiguate things.
I learned fingerspelling as a child and used to use it to communicate with my friend in school. We got a lot of flak for it because the other children didn’t know what we were saying so assumed we were ’swearing’ about them. Still it was useful if she needed to say something to me and I couldn’t hear or wasn’t close enough to her to lipread.
I did a quick Google to see what I could find that links to South African sign language:
http://www.cyberserv.co.za/users/~jako/lang/signlanguage/index.htm
There doesn’t seem to be a great deal out there but I shall ask around and have a look and see if I can find anything useful for you. Your local audiology department may be able to point you at deaf clubs or sign language classes in your area.
It is not uncommon for people to get very hung up on having to wear a hearing aid, as if the wearing of the aid makes the disability of deafness real. I think there is a lot of stigma against hearing aids, when it is silly not to wear them, and using aids shows that the user is aware of their deafness. Hopefully those who struggle will work their way through it all and get the aiding and support they need. Denial is often an important part of grieving, and losing hearing is a definite thing which is difficult to deal with.
Natalya
October 6th, 2006 at 7:26 am
Hi Natalya, Thank you so much for all your help and imput it is greatly appreciated. I will have a good look at the sites you have given me. I will also speak to my audiologist to find out where I can learn signing. Personally I feel it will help me alot especially as you say when its tough making out different sounds. It will also be better to learn it now than wait until my aid gets too weak again.
Mela