December 2002 archive


Tuesday, 3rd December 2003
Hi, you are now in Deepa's section... I made this area because from tomorrow, my life will change when I become Bionic Deepa. Okay so‚ I won't be fully bionic until January 2003. If you don't know what I am talking about, you can visit the implant section for a proper explanation. Otherwise, read on for the latest updates about my experiment with bionic hearing.



Saturday, 28th December 2002
Okay, no more updates until January 9th, 2003 - my Switch-on day when I will experience new sounds or maybe just sensations to start with. In the meantime, I am on an 'hearing' fast for one month from the day of my surgery until the Switch-on day. Yes even avoiding wearing hearing-aid on my other ear. You see, I don't think I have ever experienced being a completely deaf person for more than a day without artificial aids. I would even get upset whenever my hearing-aid batteries goes flat with no spare ones available straight away. So, for a change, I want to experience being naturally me and to my surprise, I noticed that I am not missing sounds - even after having seen many movies! Total silence. No wonder some Deaf people don't bother with hearing-aids, let alone cochlear implant technology. Anyway Phil, my partner is definitely frustrated as I'm no longer responding to his calls. At least he has more opportunity using his laser-pointer on me these days... aaah! He also claims with annoyment that my lipreading skill has gone down by 20% so he doesn't want to talk any further with me until the Switch-on.

Monday, 23rd December 2002
Phil here...I have been having a lot of fun with my sound and photo editing software making all kinds of examples to describe what Deepa's CI might sound like. My favorite latest additions to the implant page are two music tracks that combine a simulation of a 16 channel CI version of the track in the right ear and a hearing aid low frequency version in the left. I was trying to imagine what the music might sound like for Deepa if she wore both implant and hearing aid. There is no way to say if the pitch of the implant and hearing aid would match like this but it is fun to experiment. Make sure you use headphones when you listen...If you are on a slow modem it might take up to 20 mins for all 4MB's of the sound tracks to load.

Sunday, 22nd December 2002
I am surprised by some emails talking about hearing music for the first time after switch-on! So, I must clarify that I already enjoy listening to music with hearing aids - even the old aids I have worn since aged one year old. Of course, that includes dancing (my famous party trick) to one of my favorite singers, Frank Sinatra. Now you are confused! Listen to the audio examples on the implant page - they represent what I enjoy musically with hearing-aids (where high-frequency sounds are removed). Can you still enjoy this music? Hearing aids simply amplify all sounds. I just cannot hear high-frequencies, not even with powerful Senso C18+ digital BTE hearing-aids I currently have been using since August 1997. Whereas with my cochlear implant, I may actually have a less enjoyable time with music because this technology can only deliver a limited number of frequencies and they are normally selected from the speech range. After all, isn't that the whole point of going for the cochlear implant so that I will understand all your spoken language? My natural hearing probably has many more 'channels' than the 16 in the implant but it is just that they are all in the semi-useless low frequency range. I heard some people have a second program to switch to when listening to music that spreads the implant channels across a wider range.

Friday, 20th December 2002
Yesterday, I received a non-Christmas present from Phil - an internet messenger watch! It can receive text messages through a paging service or even email! I will put up the email address when it gets activated. This wrist-watch costs just 50 dollars and it comes with one year of unlimited nationwide paging service for free. Searching the printed manual unsuccessfully, we were deeply disappointed to find that there is NO vibrating facility for the alarm, only for the pager, unlike my existing Seiko titanium watch that vibrates for waking me up in the mornings. Phil then realized (after a few hours of trying to contact the manufacturer) that I may not need the silent vibrating alarm, now that I am implanted!!!

We had almost forgotten the very fact of being implanted so that I will hear high frequencies just as the high-pitched alarm noise. Funnily, this news did made me feel that it is justifiably worth the surgery to hear the alarm! Yes, I admit that at first I wasn't keen to hear and that I rather be deaf. You see, it took me a long time to accept my deafness, and that eventually as an adult, at the age of 24 years old when I first met Phil at Royal College of Art. It was him who introduced me to Sign Language. He was already learning British Sign Language before he even met me. He also encouraged me to mingle with other deaf people. Consequently, I became aware of how rich Deaf Culture is and eventually went on to be proud of being Deaf. I am even enjoying every moment of being deaf too! So, understandably I am not 'excited' to become a hearing person and especially when I keep hearing complaints from friends how unpleasantly noisy things are around... so why should I want to hear?

It was and is a very hard decision for me - to change my lifestyle from Deaf to Hearing person. It was also around this time of decision-making, Phil and I watched powerful documentary film named Sound & Fury - the controversy between the deaf and hearing members within one family over the cochlear implant technology. Phil and I are both realistically aware that if my partner/husband is deaf, I most probably would chosen to remain deaf. I know it sounds as if Phil is the one that is putting the pressure on me in our relationship - to hear :-) But you must remember that I was born into a hearing family and sent to mainstreamed schools throughout my educational life. So, I am culturally hearing person having hearing friends and working with hearing colleagues.

Now, I want to see how using this new technology will benefit me; perhaps it will lessen the strain on lip-reading, maybe I will speak even clearer so others can understand me better, or I may hear limited words when using the phone. Like yesterday at a nightclub for instance, where Kelly and I having been introduced for the first time... she actually thought that English is not my first language and that's why I speak 'funny'. Yeah, it was very noisy and I am not able to raise my voice to a certain pitch to be heard above the existing noise - a high-pitch voice, to be precise. So, I would be interested to know if my voice would change once my brain hears and accepts high-frequency sounds. What an interesting year 2003 will be, starting from January 9th - the day of my activation!

I haven't mentioned the pain - that's because I haven't experienced pain today. But I must say that last night, I slept on my right side, my usual favorite position. Yes, actually slept on my implanted ear!

I think my ears are now looking more symmetrical.

Wednesday, 18th December 2002
Today, I feel differently... whenever I speak, my inner ear tickles uncomfortably. Either it is in the process of healing or I have been too active!

Saturday, 14th December 2002
To my surprise, I couldn't take a bite off my bulky burger - ouch, my jaw hurt.

Friday, 13th December 2002
My right ear is still sticking out! Maybe the area around it is still swollen... but what can I do!

Last night, Phil peeled off the surgical tape... it was an overwhelmingly shaken moment of seeing the scar. So ugly and yet so real.

Then earlier this morning, I tried the digital hearing-aid on the operated ear and although expected, it was nevertheless a shock to experience NO responses from it - my right ear! So, there is truly no more residue hearing left :-( Anyway, on a brighter note, we just received the medical bill with the total amount we're expected to pay... $0.00! Much thanks to Blue Cross and Local 16, our medical coverage.

Thursday, 12th December 2002
9:55pm I have just come in from the gym... after a 2 weeks absence. Of course, not for weightlifting - Phil is not that cruel! :-)

I just did very light walking on the walking-machine for 30 minutes. I felt light and tired thereafter. I weighed 115lbs 2 weeks ago and today, I weigh 108lbs - so I've lost 7 pounds. I better start eating well from now on, especially protein to rebuild muscles. Also this afternoon, I have finally finished off my last antibiotic medication - hooray!

Yesterday, we met the Surgeon after one week gap from my surgery. His main concern was to make sure if my facial nerves are working... by asking me to give him a wide-eyed smile and to twitch my nose. And that's it - the checkup meeting is over! He just was relieved to see me alive :-) After asking his permission, Phil shouted to my right ear to check if my residue hearing is still there after the surgery... no :-( Yeah, Phil would sometime shout 'hello' to my ear which sounds nice and natural. Anyway, I still have left ear :-)

Almost forgotten to mention the pain... that's because the pain is lesser and lesser with each day! Today, I just feel a dull light pain - great!

Wednesday, 11th December 2002

...from 3:00pm appointment at UCSF.

Tuesday, 10th December 2002
I washed my hair today, after having been instructed not to wet the area for at least 5 days.

Saturday, 7th December 2002
8:10pm My right ear has been pretty sore practically whole day with occasional 'lightning' sharp attacking pains. Otherwise the daily soreness feels like as if a pencil is pushed thoroughly inside my ear - ouch! :-) But thankfully, I don't yet feel the need for painkillers. Earlier Phil made vegetable juice for a change, consequently it was funny seeing splashes of dark red-colored puréed vegetable on his t-shirt - oops! And Pooja is already tired from whole day of boring housework such as laundry, dishwashing, boiling water and being Phil's assistant for juicing...

Friday, 6th December 2002
Deepa is feeling better again today but is trying to sleep as much as possible which she is achieving well :-) She says thanks for all the emails and will try to reply in a week or so when everything has settled down. We have had quite a few questions about what Deepa might hear. I have tried to explain the difficulties on the implants page but maybe this example will better explain just how difficult the first experience can be with an implant for a person who has been deaf from birth.

Deepa has an email friend called Nithya. They made contact through one of the email forums for implants and share amazing similarities in their background and speech therapy etc. Both deaf from birth to hearing families with no real contact with other deaf people while growing up meaning no sign language as they both went to oral based schools. They have used hearing aids through out their lives so you would expect a reasonable understanding of sound. Oh and yes they are both Indian now living in the US. Nithya had her implant (the same Clarion CII device) a month before Deepa and by coincidence she was activated on the day Deepa was having surgery. Activation involves tuning the different frequencies of the implant. It should sound like higher and lower electronic tones and then they turn on the microphone to hear the world. So what was her reaction to hearing for the first time? Not quite what you would imagine...

Day 1
Hi Deepa:
How are you doing after surgery? take plenty of rest.. my activation was pretty unusual but Sherry a prelingual on the SWC forum said her activation was similar to mine... :)anyway my activation resulted not in beeps but only in sensations and feelings around the implant.. and when people talk around me and sounds happen, I am able to respond when my body feels the sensations.

Today the sounds are both sensations and crisper too.. some sounds I get sensations .. some sounds are like crisp when I clap my hands.. but they don't seem loud or very clear...anyway I will give myself a few weeks :)

Sound as feeling is a common description from pre-lingual (deaf before language) implanties but as a hearing person it is very hard for me to imagine the experience...phil

Thursday, 5th December 2002
Hi, fantastic emails I just read... I must say home feels normal than the weird surrealistic hospital environment. My right ear is sore but bearable and currently eating organic purple grapes. It tastes differently on the right side with a metallic taste. I am very grateful by the fact that my taste nerve was saved thanks to Dr. Lalwani and UCSF's team effort - whew! Today we came to know that it is pretty common to sacrifice the taste nerve if it gets in the way of inserting the cochlear implant.

Hi. Seems like everyone has forgotten about me, Pooja - Deepa's sister. I came all the way from Mumbai, India and have to make my own entry on the webpage. bye

The bandage came off this morning and Deepa is now home asleep after reading her 85 emails.

Wednesday, 4th December 2002
Deepa is still in the hospital but everything went well. Surgery took around 4 hours and the only difficulty was working around the nerve for taste. I did not get to see Deepa until 4.00pm but she had no real complaints, a little pain and just felt very sleepy and a bit sick if she got up. She was relieved that her face was moving normally and the nerve had not been damaged at all. Have to rush back now to see how she is getting on. Pics from today and a movie...

Tuesday, 3rd December 2002
Tomorrow morning at 8.30 am, I will be wheeled to the operation theater for my first ever surgery. I cannot believe it after all this time. It really started in March 2002, when we visited Deaf Fiesta 2002 in San Jose. Phil and I did think about a cochlear implant much earlier while living in London but we didn't think it would benefit much to pre-lingual deaf (profoundly deaf from birth) like me. Spoken language is usually acquired by the brain before age 3.

Deaf Fiesta 2002 was the starting point of optimism when we were introduced to the cochlear implant device manufactured by Cochlear Ltd. at their exhibit stand. We came away with a hunger for more information and what a better place than the Internet! We also were informed then, that this technology is usually covered by medical insurance in the USA. Suddenly the ball was rolling (with bumps too)...

I subscribed to 5 cochlear implant forums such as CI-Prelinguals, CI, etc. Reading these forums helped us greatly with our decision-making, especially Alex's site. Phil investigated the eligibility with his medical coverage from work and it was true! We would not have to pay $70,000. We attended a friend's housewarming party where some of the people have implants. It was great meeting them and seeing for ourselves the satisfaction and enjoyment they're experiencing hearing new sounds. They commented how much they're having fun and yet they're fully aware that they can't yet recognized spoken language without lip-reading. To qualify for an implant you have to fail many hearing tests. I qualified with zero ability to hear words - perfect! Everything was set.

Then, weirdly just before my surgery on August 23rd, 2002 - there was a recall of the Clarion device I had chosen! So, my surgery had to be postponed and this also delayed my parents' visit to see me. They had never been to America before! Eventually, they decided to come anyway before surgery.

The Clarion device came back to the market after a small design change. There had been a meningitis scare. I rescheduled my surgery for January as I wasn't yet prepared to go ahead during this confusion. But then a few weeks ago, we received a letter from our medical coverage that said the coverage will decrease to 90% in the new year. Luckily we got a cancellation for tomorrow and saved ourselves $7000 - hurray.

Now it is 11:45pm and I have got to go to bed now for tomorrow's morning surgery starting at 6:30am! So, I better stop now and try to get some sleep. Goodnight!