Hello from a New Member!

[Guest guest]

Hi there,

I too am from Atlantic Canada....Nova Scotia to be exact, where abouts are

you located??

Suzy

Atlantic Soul Bodyworks

http://home.klis.com/~atwood5

" Greetings from Atlantic Canada!

I was quite excited to find your group. I have..... "

[Guest guest]

> Hi there,

> I too am from Atlantic Canada....Nova Scotia to be exact, where

abouts are

> you located??

> Suzy

> Atlantic Soul Bodyworks

> http://home.klis.com/~atwood5

>

>

> " Greetings from Atlantic Canada!

> I was quite excited to find your group. I have..... "

>

>

[Guest guest]

Hi everyone,

My name is and I just joined the list tonight. I'm from Wisconsin and

am currently persuing a Bachelor's degree in social work.

As far as my hearing loss is concerned, I have a severe to profound loss in

my right ear and a profound loss in my left. I've been wearing HAs for 17

years. My hearing loss was diagnosed at age 3 (mild), progressed to a

moderate loss at age 16 and a severe to profound loss at age 25.

I'm now 33. Two weeks ago, I learned that the hearing in my left ear has

progressed to a profound loss. Thankfully, the hearing in my right ear

remains stable.

Over the past several months, I've had increasing difficulty with

communication and mobility since I can only hear/understand sounds and

speech with my right ear. (I should also mention that I am totally blind.)

The change in hearing between my left and right ear is 20 dB. The hearing

loss in my right ear starts at 70 dB, slopes down to 80 dB and below

starting at 2000 Hz. The hearing in my left ear starts at 90 dB, slopes down

to 110 at 1500 Hz and goes off the chart from 2000 Hz on.

After serious consideration and extensive research, I've decided to apply

for a CI. I'm at the point where it's becoming increasingly more difficult

to function independently.

I've discussed my decision to get a CI with my audiologist who encouraged me

to apply for candidacy. Mind you, I've gone back and forth a thousand times

before finally deciding to send in my application. <smile>

My expectations for the CI are to achieve speech understanding with my left

ear. (I don't understand speech with that ear and only hear very loud

environmental sounds with a super power BTE HA.) I'm active in my community

and would like to get a CI in order to maintain my social life and future

career as a social worker.

I've submitted my application and should hear back regarding my candidacy in

4-6 weeks. If I'm a candidate and the CI is successful, I will be very

pleased!! If I'm not a candidate (or the surgery is unsuccessful), I will

have lost nothing by trying. <smile>

I'd love to hear experiences from the list about your decision to get a CI.

What made you finally decide to get a CI? How did your family and friends

react to your decision? Finally, how did your life change after getting a

CI?

If any of you have any questions for me, just ask and I'll be happy to

answer them. <smile>

Thanks and I look forward to being on the list!!

[Guest guest]

,

Hi and welcome to and congrats on your decision to try and

get an implant.

I have been implanted for almost 2 and 1/2.. I grew to adulthood

with normal hearing, but in my early 20's began to develop

hereditary bilateral sensorineural nerve hearing loss (nerve

deafness)

I coped quite well in the hearing world for several years with the

help of hearing aids and lip reading. Finally, I got to the point

where hearing aids were no longer of any use to me and I made the

decision to be implanted after giving it much thought and also

seeing what the implant had done for my mother who had been

implanted several years prior to me.

I went into the process hoping to be able to at least communicate

with family friends through hearing, but my implant has far exceeded

my expectations and hopes!

Although several members of my family are hearing impaired/deaf, we

were always raised in the hearing world so it became very difficult

for me to communicate with others and I withdrew socially, went into

a severe depression that lasted many years, felt sorry for myself

and the whole bit..Life definitely wasn't fun for me anymore.

In Oct. of 2001, my younger sister and I went into surgery on

Halloween Day.. yep.. scary huh We decorated our head bandages for

the occasion. LOL About 4 weeks later after we healed, went for our

initial activation.. All I can say about that day is WOW.. From day

one, we were both able to hear well, use the telephone and

understand speech even from another room.

From that day forward, my life did a complete turn around and I find

myself doing things I never dreamed of, speaking in front of groups

of people and being, in general, a very social person once again.

Hearing the true laughter and voices of my grandchildren

saying " Grandma, will you come play with me? " without any tears

because grandma just couldn't hear what they were saying, personal

conversations with family and friends has given me a new outlook on

life again and the impact the ci has had on our family is just

unbelievable as we now have 4 implantees amongst us.. Including mom,

there are 2 other sisters and myself who have been implanted.. This

means.. no more note writing notes, No more having to depend on

anyone else to make phone calls for me and in general not having to

depend on anyone else to be my ears for the most part!!

Our family is a closely knit bunch and family gatherings are now so

much more special to me as I am able to visit and converse with

everyone..

Friends I once put on the back burner because it was so

uncomfortable for us to try to communicate with each other are now

back in my life sharing day to day things through phone

conversations and regular visits.. My far away friends, people I've

met and grown to love on the internet are no longer just a face;

I've heard and talked to several them in person.

This list could go on and on but I'll stop here for now.

I'm sure you will hear several stories from folks on this forum and

their experience with their ci will be as individual as the person

is..No one has the exact same experience.

Please let me know if there are any questions I can help you with,

either here on the forum or privately and once again, welcome to the

forum.

Wishing you the best in your quest to get a ci.

Have a great day,

Silly MI

In , " Kozlik " <lisak70@t...> wrote:

> Hi everyone,

>

> My name is and I just joined the list tonight. I'm from

Wisconsin and

> am currently persuing a Bachelor's degree in social work.

>

> As far as my hearing loss is concerned, I have a severe to

profound loss in

> my right ear and a profound loss in my left. I've been wearing HAs

for 17

> years.

[Guest guest]

hi lisa

i think you would do great with a ci. i think thats a very good idea especially

with your vision issues.

i have masters in social work. i hope you will keep going to your ma as well.

joni

[Guest guest]

,

Thanks so much for sharing your experience. <smile> All I could say after

reading your post was wow! It's wonderful to see how much a CI has changed

your life!

When I was first diagnosed with a severe to profound hearing loss, I shyed

away from social activities. I also stopped doing the things I loved

most...singing in the choir, playing the piano, flute and violin -- and

listening to a mass collection of LPs, tapes and CDs I had accumulated

over the years. I went through a bout of depression for a number of years

before I finally decided that it was up to *me* to change my life and not

let my hearing loss take complete control of it.

The alternative communication techniques I've learned (such as tactile sign,

real-time captioning with Braille output, Braille/print alphabet card,

TeleBraille, etc.) have served me well but now that I'm about to graduate

with my Bachelor's degree, getting out there and being able to communicate

is going to be more important than it ever was before. The last thing I want

is for my deafblindness to limit my social interactions and my career as a

social worker. I'm tired of feeling like an outsider just because I can't

hear. I want to get out there and enjoy life. I'm hoping a CI will allow me

to do just that.

I'm so amazed by the messages I've read so far on the list. It makes me want

this more than I've ever wanted anything else in my life.

Some people have asked me why I want a CI instead of eye surgery. I tell

them that blindness is something I've lived with all of my life. It's

something I've adjusted to and feel quite comfortable with. Not being able

to see doesn't limit me the way not being able to hear does. As Helen Keller

said, " Blindness separates us from objects. Deafness separates us from

people. "

That's exactly the way I see it, too. Having the ability to understand

speech in my left ear would do wonders for my ability to communicate and

function independently in any environment I find myself in. And if a CI

gives me the ability to hear sounds I haven't been able to hear in years

(birds chirping, children talking, phone ringing, etc.), that will be the

icing on the cake that will make this whole experience even better! <smile>

[Guest guest]

Joni,

Thanks for your reply! <smile>

I didn't know people with severe-profound losses were being implanted. I

thought the CI was only for those who had profound hearing loss. I'm glad

the FDA has relaxed their requirements...

What school did you receive your Master's degree at? I'm pursuing my

undergraduate degree at the University of Wisconsin-Milwaukee.

Are you currently working in the social work field? Since that's considered

off-topic for the list, please feel free to write me privately. <smile>

[Guest guest]

,

I want to tell you how much I enjoyed your message to . You are a very

special young woman who is beating down the doors of defeat by forging on even

though you have multilpe disabilities. You are turning them into abilities and

that is something that you should be commended for.

You can't go wrong getting a CI. I agree that the ability to communicate is

very dependant on what you can hear and relate. It's very obvious that you are

going to be successful just by reading your accomplisments.

There is a wonderful miracle out there for you with the CI and I am going to be

looking forward to your progress with this in your life. Thanks for being a

part of CI Hear. Welcome to the group.

Alice

The alternative communication techniques I've learned (such as tactile sign,

real-time captioning with Braille output, Braille/print alphabet card,

TeleBraille, etc.) have served me well but now that I'm about to graduate with

my Bachelor's degree, getting out there and being able to communicate

is going to be more important than it ever was before. The last thing I want

is for my deafblindness to limit my social interactions and my career as a

social worker. I'm tired of feeling like an outsider just because I can't hear.

I want to get out there and enjoy life. I'm hoping a CI will allow me

to do just that.

[Guest guest]

,

Thanks for sharing such a wonderful story..

I admire the way you are coping with multiple disabilities and I'm

sure you will go far in life with your attitude and I sincerely hope

the ci helps you achieve all your dreams and goals.

I've always wondered if those who were both deaf and blind had a

choice of sound or sight which they'd prefer, and while I know yours

is only one persons opinion, it's interesting to know. I'm curious

though.. You said people were surprised that you would rather have

the ci than eye surgery.. Is this a possibility for you as well?

Could you have surgery to help you see better? Just tell me MYOB if

I'm being too nosey<smile>

Hope everything goes well with you and I look forward to your

sharing more of your journey here.

Hugs,

Silly MI

In , " Kozlik " <lisak70@t...> wrote:

> ,

>

> Thanks so much for sharing your experience. <smile> All I could

say after

> reading your post was wow! It's wonderful to see how much a CI has

changed

> your life!

>

[Guest guest]

Hi !

Thanks for the compliments!! <smile>

The result of my blindness was from receiving too much oxygen at birth

(called retinopathy of prematurity or ROP). I weighed a little over 2 pounds

at birth and spent several months in the hospital in a respirator. As a

result, my retinas were completely destroyed and unfortunately, there is no

corrective surgery available to correct it. When a person's retina detaches,

time is of the essence and the more time that is lost, the less of a chance

there is of saving the vision in the affected eye.

If I were given the chance to see again, I'd take it in a heartbeat. (Of

course, I'd also get a CI, too! <smile>)

I feel more limited by my hearing loss than I do my blindness. I could

function quite well for most of my life (having learned Braille, independent

travel with a white cane, daily living skills, etc.) until my hearing loss

set in. When that happened, it made mobility a challenge and it affected the

way I resumed my education.

When I started college, my hearing loss was considered moderately

severe/severe. I could still hear in a large lecture hall provided that I

sat in front of the room. In other situations where I had more trouble

hearing (group work, noisy environments), I got by with the help of friends

who gave me class notes and explained anything I might have missed.

After struggling for about a year, I finally sought help from the

university's Deaf/HoH Program. Strangely enough, I can still remember the

first conversation I had with the director of that program. She told me that

my knowledge of Braille is what saved me and allowed me to continue my

education. Even if I didn't know Braille back then, I could have learned ,

but that would have meant adding an extra semester of classes in order to

make up the time I would had lost.

If you were to ask a handful of deafblind people which they'd rather have --

eye surgery or a CI -- the answers you'd receive would vary widely. How a

person responds to this question depends largely on whether they lost their

sight before their hearing or vice versa. Typically speaking, a deafblind

person regards their secondary disability as being more problematic than

their primary disability. For example, in my case, I consider my hearing

loss more of a challenge than my blindness. A person who was born Deaf may

feel more limited by low vision or blindness. The reason for this may have

to do with how familiar a person becomes with adapting to their primary

disability. If I were D/deaf, the last thing I'd want to lose is my sight.

Since I was born blind, my hearing is my primary concern. Being totally

blind and having a significant hearing loss poses some interesting

challenges. For instance, I can't rely on lipreading or written

communication to communicate with someone. (Having said that, let me make it

clear that I know lipreading isn't a perfect solution for all D/deaf and HoH

people. I know lipreading can be very exhausting and that some people are

impossible to lipread.) Thus, I must rely on an interpreter, captionist or

other means of communication such as fingerspelling, Braille/raised print

alphabet card, Tellatouch, or a TeleBraille. And while it's certainly

possible for a deafblind person to communicate using these methods <smile>,

it can be very difficult to find a work around when an interpreter or

captionist isn't available. The good news is that most deafblind people try

not to get themselves in this kind of a situation. When and if they do, they

will find *some* way to make communication possible.