Living life with a disability

It took me a while to get the title right because it’s a disability I am truly learning to live my life with each day. There are days when I forget my deafness, there are days when others don’t notice my deafness and there are those days when I long to regain my 100% hearing again.

 To listen to music crystal clear, to follow conversations in groups, to enjoy the nuances of the language like I once used to.There are those odd moments of loss. 

How much a disability affects  one’s life depends entirely on how much one allows it to. I don’t think it’s just about accepting it. It’s more about focussing on what one can do with this challenge. And there are always going to be moments of sheer frustration and helplessness. I don’t hear the alarm clock ring and oversleep, I miss the doorbells many a time and rely on my cat to look towards the door and then to me as an indicator. I am poor in balance. I miss birdsong and even thunder.There is the tinnitus and the eye fatigue due to constant lip reading. I could go on an on.

I use hearing aids which do not function the way spectacles do (I need to write this here because everyone I know has this misconception). I need to take care of them every day, clean them and dehumidify them and keep them protected, change their batteries and make frequent visits to my audiologist for fine tuning. I have no problem telling people I am profoundly deaf but I have a problem with people assuming they need to shout and speak because I am deaf. Loudness impairs the clarity even further,it amplifies sound adding to the cacophony. All I need is clarity.

On the optimistic side, I don’t hear a thing once I have taken my hearing aids off. I sleep through fireworks and arguments. I'm also blessed to live in the digital age so I use a digital hearing aid that connects to my phone and through Bluetooth, music streams in for clear hearing. Same applies for telephone calls.

 As I blog this,my hearing loss is at a 105 decibel loss already. Learning to live a fulfilled life with whatever hearing I have is my thought for the moment :-)

On Hearing and Phonak

On Saturday I finally managed to visit my audiologist after 3 long months and many cancelled appointments. I have recently shifted to using a Phonak hearing aid (Exelia art) since April this year. It was a major shift for me as I have been using Siemens for the last 12 years. Perhaps a disillusionment in my hearing quality, perhaps faith in my Pune audiologist and the fact that he was willing to give me a trial of an expensive hearing aid so that I could understand its nuances made me go in for the Phonak eventually..


Saturday was a new experience for me. I began using the Click n Talk wireless transmitter which turns my hearing aid into a wireless headset when I need to use the phone. My hearing aid uses the Phonak HiBAN (Hearing Instrument Body area network) and the click talk mechanism streams in telephone calls into both my hearing instruments simultaneously. The quality is digital and crystal clear. It does shut off outside sounds while I talk, so sometimes that can be a disadvantage. (When am on the phone, I may not hear my door bell).But the joys of having clear phone conversations is something I am beginning to cherish and delight in.

The click talk transmitter is part of my hearing aid and comes in as a valuable accessory. However it is not compatible with a Nokia hand set. It has to be used with only with Sony Ericsson mobiles.

So that meant in order to use it, I had to purchase a Sony Ericsson mobile.Amit and I soon realized that there were very few Sony Ericsson mobile outlets in Pune and sourced two of them. One outlet in Viman Nagar was hell bent on selling me the upper end mobile phones of touch screen. It put me off totally. I am such a non tech person that it takes convincing to tell the man, all I need a mobile is for talking, messaging and also a good organizer. For me it’s a necessity not a designer accessory. Anyway that outlet was not an option for me. Customer service and good quality at that works for me brilliantly. Not otherwise.

So Tilak road it was. After 2 hours at the audiologist, we headed for the outlet and finally managed to find the small little store.

We spelt out our needs. While the proprietor-a well heeled, intelligent person was really clued on to the type of mobiles, he had never handled a click talk and pairing it to the new phone and the processes involved. Initially he was perplexed by me and asked me where my hearing aids were. I told him I am wearing them and that the audiologist had already paired my hearing aid with the Phonak click talk. He looked at me in wonder and genuine curiosity waiting for me to speak more. He was keen to know how the devices had been paired and where. His questions were many but it delighted me when he told me that this was the first time he had handled a hearing impaired customer and figured out the click talk transmitter pairing...

I sensed his curiosity about my challenge .To many who meet me for the first time the challenge seems invisible because I am carrying on conversations like a normal person does. There are times I forget myself that am impaired. I was reminded of my challenge yet again at the audiologist where in the course of conversation the topic of television came up and he asked me how I was hearing the TV.Immedietly I blurted out that I watched the programmers with subtitles and not otherwise. He ofcourse sent me away with a warning that I did not want to make the effort to hear and how would I handle it 10 years hence when the hearing got worse. I ofcourse had to tell him, how much worse can it get when it’s already beyond 100 decibels. He is an encouraging audiologist while am the stubborn customer who tries to have an answer to anything he has to say….

The truth of his words still ring with me. I am at times just too lazy to make the effort to hear. I would rather understand the subtle humour of “Whose Line is it anyway’? through sub titles than having to struggle to hear what those brilliant actors are saying...

Understanding hearing impairment.

Of late I have begun to understand hearing impairments better. I am more intrigued about it. It’s not the reason why it occurs that intrigues me. It is the way it differs from person to person, from someone who is born with it to someone who has acquired it say once they have completed their education and crossed language/speaking barriers. After the discovery of my hearing impairment in 1998 when I was 31, there followed a brief period of denial, counseling and ultimately acceptance and now I am at a stage when I can even laugh over it. Especially when I mishear things and it comes out all funny.


I seem to dislike using the word ‘deaf’. I don’t know why. Maybe ‘deaf’ , ‘blind’, ‘mute’ sound harsh and blunt ,like a label that refuses to peel off.( I know that is a reality).I seem to prefer using the words hearing impairment maybe because impairment sounds more gentle, less judgmental and less labeled.

I need to give credit for this sudden revival of interest to my new found friend Ruchi who has a 6 year old daughter, Prisha who has been hearing impaired since birth. As a mother it has been an amazing and challenging journey for Ruchi.When one meets Prisha and hears her speak it would be very difficult to determine that she is totally hearing impaired and has successfully crossed her language barriers. She speaks fluently and does not lip read. She can hear even in the dark with the help of her hearing aids. When I see her and since I am hearing impaired, I begin to see a bit of me in her and a bit of her in me. Maybe a bond that links us though we are ages apart. Although there is very little to give away her impairment, there are subtle nuances that make me aware of it. I also realized that here the challenge is for her mother-caregiver as Prisha has never known a world of sound. Instead she has been guided in to that world of sound with the help of her parents, speech therapist along with the indispensable hearing aid.

My hearing loss is so vastly different from hers yet am also hearing impaired. I rely on lip reading which is more or less guess work. I also tend to gesture more. I cannot hear in the dark even with my hearing aids on. I always need to face the person I am speaking with. My hearing loss was however discovered when I was 30 although the process of degeneration must have begun much earlier when I was unaware of it. It’s a progressive hearing loss that is to do with nerves or medically put- a Sensorineural hearing loss...Understanding that this condition came from ‘deafness’ genes took me a long time. A journey of blame and regrets followed which fortunately I have passed through now. I recollect my childhood of sign language and raised voices to communicate to my mother but then I never really understood the ‘difficulty’ in that situation. As a child it came naturally to me and naturally enough to accept my mom the way she was.

From a world of language, music and being able to carry on normal conversations even from a distance, I progressed into a new world where I adapted myself to my dis-ability.I miss, missing out on witty comments, wry humour, jokes and even gossip. There are times I laugh when everyone is laughing. I have to tune in to the group around me and this I notice is becoming more frequent. The struggle to cope with group conversations where sometimes I just tune myself out is really becoming a struggle.

Does it matter? Yes, it does.
Is my communication lesser than before? It is.
Does it leave me feeling sad? It does at times especially when am in a conversational mood and I know phone conversations don’t come easily to me.

I struggle in a movie theatre or while watching a play. Its tough to lip read then and I settle down to tune into body language and doing my usual guess work.I cannot hear an alarm clock or my mobile buzz in case I need to wake up early morning. I have stopped using them and rely on my body clock that doesn’t seem to go wrong as long as I believe in her. I long to hear the words of songs as they play on my CD or on the car FM and have to keep asking my family, ‘Which song is this?’, that’s one part I miss the most because music was always an integral part of my early life.

Are these regrets? Now after 12 years of hearing aids and slowly losing out on sounds, I also value this world of silence. It has honed my other senses remarkably. I am far more intuitive than most. I am also better at reading facial cues and eyes. And I love it because I have a partner who refused to let me become dependant on him to hear and carry on with normal life. Instead he encouraged me to hear, make mistakes and move on. My daughters who in turn empathize with me as well as roll with laughter over it. They can say something perfectly ordinary and I hear it as something so different that it results in peals of laughter all around. It has its merits. At night, I don’t hear the sounds of traffic and I don’t hear the watchman sing aloud to keep himself awake. The watchman by the way sits right below our 1st floor apartment. And I can conveniently miss out what I don’t wish to hear. ‘Selective hearing’ as A puts it.

I love to watch movies with subtitles because it makes my world a lot easier. I am so glad for sms’s and the internet (when I use it) although they by no means replace actual direct conversations. Thank god for technology.

I just wish I do not reach a day when I am unable hear my own voice, the voice of my girls and of A.