10 Month Evaluation

To be honest… I expected more.  I hear beeps at 15 to 40dB and my speech recognition is 55%. I am nowhere with the phone and the TV. I asked my audiologist if there will be more improvement to come and he said “absolutely”. Wouldn’t 70% word recognition be nice? Maybe in three months I can get there.

He mixed Autosensitivity and Beam and gave me a music program which is ADRO with Whisper. It’s neat.

The Cochlear Lapel Microphone

The Freedom comes with a bunch of accessories - all sorts of cables. My absolutely favorite one is the lapel mic. It’s a cable that connects to the processor on one end while the other one is a mic you stick on someone’s collar or shirt. That way you get to hear only their voice in a noisy environment. It has provided me with many fun times with my friends since the noise in restaurants (particularly Bulgarian ones, Bulgarians can’t eat or drink if they don’t have techno blasting) is absolutely UNBEARBLE!

The problem with it? Works only with one person.

The other night I had a date with two friends. They were agreed we look for a quieter place to have dinner and we found this great underground restaurant with yummy food. When we entered it was very quiet but as soon as we sat down, the waitress turned on the music. Waaah! Exactly my fear! Of course I started having great difficulty hearing them and the night threatened to be a failure. But then I decided to stick the lapel mic toa napkin in the middle of the table. Worked beutifully, picking up the voices of my friends across and to the left of me and deafening everything else! Absolutely better than an FM system!

I am really happy with this discovery! I had a wonderful night and I didn’t feel the usual fatigue that comes with conversation.

My Mom

My Mom passed away on March 6, in our home in Sofia. She will be greatly missed.

CapTel

I picked up my CapTel from an office in Bloomfield, CT. It’s a wonderful little gadget with a loud ringer and pretty much all the functions of a normal phone.

The captions are faster when I make the call. For incoming calls I have to wait about 15 seconds to get captions. My friend Ralph suggested that Anton picks up the phone and I take my time walking to it if the call is for me. But if there is no one home, I will have to answer, say “Hang on one second” and when the captions come up, respond. Any other ideas? I need to be a brave woman and learn to use it!

I was supposed to start an internship with a human rights organization in the city on Wednesday. Unfortunately, my mother’s cancer took a turn for the worse and I hopped on the first plane to Sofia (I had a feal easy conversation on the plane, can you believe that?!????) . So please say a little prayer for my mom.

To Many Worldwide Cochlear Implants Are Only A Dream

I came across an article in the Russian newspaper Kommersant (thanks to Bob, the CI Yahoo group admin) about three year old Rita who needs a cochlear implant now or she will never learn to speak and will have to spend her life in institutional care. Yet, she cannot have a CI because it’s prohibitively expensive at the price of $40, 000. Russia, which has state subsidized health care, does not provide the device for free. So Rita’s parents are pleading for donations.

I would have done the same had I not had the opportunity to be included in my husband’s health insurance (which we could never afford if his firm wasn’t taking on the bigger part of the cost). In Bulgaria, where I am from and where I originally tried to get an implant, adults have to pay for it and the price is similar - about 40, 000.

I am starting to question (more and more) the way CI manufacturers price their products. I am pretty sure my insurance company didn’t pay $40, 000 to Cochlear Americas for my device. It was more like $ 5, 000 and attention, I have two processors! What do my readers think about this?

A Little Update On Hearing

I rode the Metro North into the city today for an internship interview and I am very happy to report I heard many PA system announcements! It was a special moment when “Doors are closing, stand clear” naturally flowed into my ear while I was riding the 4 train downtown. Observe that the sound came to me while I was NOT focusing on auditory information. I am getting closer to normal hearing!

Angry

Ever since I started my job hunt I have been digging for information tailored specifically to hard of hearing job seekers. I would like to read about things like what my rights are as a hard of hearing person with a cochlear implant, how and when to disclose my disability to employers, what employer fears I am to anticipate, how to respond to request for phone calls, etc.

The internet has very very limited information on this and it’s almost entirely written by deaf people and targeted at deaf people. I came across many articles on “employment for the deaf and hard of hearing” only to discover that it’s talk about interpreters and video relay.

I went on the Hearing Loss Association of America website and … the information on employment there is insufficient. It’s just a little more than “Here is an ADA summary for you”.

Then I discovered the League for the Hard of Hearing who have an office in New York City, supposedly catering entirely to the hard of hearing. They advertised career services. So I emailed to set up an appointment. I got a response from a program director, an Amy Boyle, which consisted mostly of text, copied and pasted from their website, and a little something from Ms. Boyle herself: “We do not offer career service at the moment, but please don’t hesitate to email me with any questions”. So I emailed her, telling that I am an educated HoH adult who needs some advice. Ms. Boyle did not respond.

I am livid. Not only is the label “hard of hearing” stripped of meaning consistently, but apparently if I were uneducated and more deaf, I could have gone to one of the many social service organizations who would find me a WalMart job. This just doesn’t sound right to me.

I think that when my job search is finally successful, I will start a blog for hard of hearing job seekers.

Mornings

My husband gets up before me and brings me coffee in bed (I know, eat your heart out along with my processor. I sit up and hold my coffee and fight sleep. He is usually up and reading the news and his email and he is talking. But I am half awake and my hearing is also half awake. So we go like this:

Anton: Rudy dropped out.

Me: Huh?

Anton: Giuliani dropped out!

Me: Giuliani what?

Anton: He is out! OUT! (screams and gestures)

Me: Uh?

Anton: Drink your coffee!

We used to be like that 24/7, before the implant. Now - only in the mornings! What I want to say here, besides bragging with the wonderful man I married, is that bionic hearing is hard brain work. You need to be fresh and alert. So keep yourself in shape and don’t schedule important meetings before your morning coffee.

Kaw, Kaw

I am the last person to read anything supernatural in real events, but what happened today did actually creep me out!

Anton and I made an hour-long stop at the gym. The place appears to be right in the end of civilization (though in Southern CT that’s more an illusion than anything else), at the bottom of an uncultured hill of tree and rock. On top of the trees on the hill were over 100 crows “kaw kaw”ing their lungs out and flying in circles over what I imagined must be at least a corpse! Since my implant works so well for me I was able to appreciate every part of the racket - the deep kaw kaw and the beating of many wings together. They were mighty excited. And they were still at it when we left the lot. Brrr.

The Interview

I had a job interview yesterday.

I did well. I am happy. I heard many things without even looking at the two women I got to talk to. For my embarrassment though, I had to have the recruiter repeat some of her questions two and even three times. For some reason, the question “What are your three best qualities?” couldn’t get to me although she was sitting across from me in a very very quiet room. Go figure.

I observed the build up effect of talking to her for about 20 minutes. In the end I was getting every single word she said due to, I think, my brain becoming more familiar with her speech.

I really want the job. It’s with the Developmental Resource office of an old disability organization. It’s almost entirely computer work - recording and analyzing gifts, compiling reports, support for charity events - with HUGE opportunities to learn, including from the supervisors, and to grow. I just so want it. Please.