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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.
Day2
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!
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