Thursday, April 2, 2009

Activation: Part One

So, just what has it been like for me? Bells... lots and lots of bells... and nothing but bells. At first it was like standing in church tower with the bell clanging overhead and getting knocked around with the vibrations. Then, it was "reduced" to sounding like loud, mad, and ferocious wind chimes inside my head... just the constant tinkle tinkle of sounds times a thousand. Finally, it got to a point where it sounded like carrying on a conversation during a fire drill with someone 50 feet away and a hundred screaming teenagers between us. (If you've taught high school, you know what I mean!) Now, two days later, I've settled with the emergency broadcast signal continuously ringing all day long in my ear.

*****Disclaimer... this is a grumpy and cranky post. It gets better, but just not on this post... if you need some happy, light reading, skip this. :-) *****

I have a constant headache from the ringing, and it feels like I just got off of one of those gravity defying, death defying, spinning, nauseating rides at the carnival after eating two hotdogs, cheese fries, a shake, and cotton candy. Every tap on the key board is like the poor dog and the electric fence.. zap... zap... Why do I keep doing this to myself? ... and zap... Now, that I have elaborately described my utter misery with this fascinating life changing device and what a hero I am for typing at this moment (and did I mention the lawn guy is outside the window right now mowing), let me find my Wonder Woman cape and begin. (I know... eyes are rolling out there)...

Monday night, I went to bed feeling fine, but I couldn't go to sleep for anything. It was crazy as I only had about two hours total by the time morning came. On the way to the appointment, I found myself snapping at my poor husband and apologizing. James knew I was overly anxious and jittery, so he was more concerned about my emotional state going into the mapping than me being a bit snarly.

We arrived at the hospital where, unfortunately, I had no interpreter. They said I didn't ask for one, but the doctor's office gave me my appointments with them. I'd had interpreters for my surgery and just lamely thought I had one set up for activation. My friend, Becky, who works with the babies in a local deaf education program, came too. Aidan was with us since we didn't have a babysitter. We all got set up in the audiologist's office. I was hooked up to the computer and turned on. At first all I felt was a buzzing vibe and gradually some piercing beeps. It was not going to be a "Oh, baby, you can hear!!!!!!!" kind of moment (or day). I had to listen and listen and listen for sounds... and they were so quiet! I thought my brain was going to fall out while I was digging down there to hear something.

Meanwhile, Aidan played quietly for a few minutes with the quiet toys he loved the night before... He started getting chatty and acting like an almost 2 year old. *sigh* I knew that was going to happen. Meanwhile, my husband was standing due to lack of space and checking text messages (moving around) while I was listening for beeps. Are you laughing yet? I was so distracted. I finally was like.. "JAMES!!!" and then doing the cut throat motion. He was so sorry... poor guy! I must say my loyal hubby was awesome playing the paparazzi with the camera and video and trying to get a record of it, but it was just so crowded in there, it wasn't working. Please don't ask for video because I'd be embarrassed to show the world what a circus was going on in there and how cranky I was getting. Finally at some point, James apologized to Becky and me and said he was going to take Aidan out. That was really depressing because it had been important to me that James be there, and he'd taken the afternoon off at work to do so. He left at that point to take care of Aidan and couldn't come back in the office for the rest of the visit. I could finally concentrate better though, and James took Aidan to the cafeteria for corndogs and cake. I'm sure that was a lot more fun anyway. :)

A really big problem for me on Tuesday was communicating with my audiologist. She's the no-nonsense, extremely professional, and let's get to business already type of personality while I'm much more laid back and used to conversation that flows on both sides. Most questions I asked were greeted with... "and I'll get to that." I finally got to the point that I was too uncomfortable to ask any questions. I'm more used to working with men audiologists with big loud personalities, who listen to everything I say, give me feedback, and can crack a joke once in a while.

When she switched me from the test on the computer to actively listening with the external processor it was a shock to my system. The bells and beeps were all running all over each other and didn't stop. I couldn't wear my hearing aid in the other ear, and with all the racket in my head, I was supposed to lip read. Now all of a sudden the audi was talking a million miles an hour. It really felt like a torture test. I get motion sickness very easily and that's what all the bells and whistles were making me feel like. I finally realized that all the beeps and bells had a pattern. Each syllable would beep. There's a slight pause between sentences and some sounds would last longer than others depending on the rate of speech. That still didn't make it comfortable, but it was interesting. I wish I could say the words sounded like something other than beeps. Personally, I was really rooting tooting for Mickey Mouse and Donald Duck to make an appearance...instead it was more like bats in the belfry with church bells thundering. I did finally in the midst of the bells make out some actual sounds which was kind of exciting but the ringing just overwhelmed me.

My audi mapped one program at four different volume levels. We went over the equipment. At one point, I went out to the hall where Aidan was running James ragged. I wanted to see how they sounded. I actually made out Aidan saying, "hi mommy!" It wasn't an earth shattering moment, and I can understand him much better with the hearing aid right now. It's going to take time before I get that ah-ha moment. (Did I really just quote Oprah?)

It was good having Becky there because she occasionally she filled in the blanks when I couldn't understand. She's a teacher though and not a professional interpreter. The information was so technical and there was so much of it, I know I missed a lot. I did my best to lip read and follow. I requested an interpreter for the next day, and that brought a lot of drama that I didn't see coming. I was told I had to ask two weeks in advance by the audiologist and director, but I insisted that it was too much information for me to grasp without one, and they said whether I had an interpreter or not it was important I was there the next day. I felt bad about the confusion that day by not having an interpreter, but it was not without frustration and even tears at one point. Then I was told I could have one the following day but it was going to cost them twice as much. My head was really hurting at that point when I felt the pressure to decline the interpreter, but I was thinking of a local activist that would tell my students to stand up for their rights to understand and have an interpreter at all medical appointments. Her motto that she has kids repeat is "my mother is not my interpreter." She will have the say it again and again like a rally cry. It's funny but they were all in high school and needed to know that when they went in the big world they had a right to accessibility, and I knew I did too. Becky isn't my mother, but it isn't fair to make her interpreter either. I held my ground and said I'd really like one, but the situation was uncomfortable.

Finally two and a half hours after we started, we broke for the day. Except for a nap I had to take when we got home, I wore my CI til late that night, even through American Idol. Of course I had my hearing aid on too. Otherwise the singing just sounded like a hand bell concert gone wild.

I'm going to conclude part one here, but let me say that the next day was a big improvement when I went back for the second mapping... It was like night and day... interpreter included, baby in daycare, moral support sitting behind me, and a hearing test.

Stay tuned... this is as much as the bells and I can handle rehashing for now.


  1. Found your blog through and you commented on one of my post (Mapping #1).

    The first few days are a bit crazy isn't it?! ;-) It was a lot for me to handle but it's been gradually getting better even though I have been calling the CI my "torture device." Everyone says it gets better so it must! :-)

    I hope you keep these posts coming. Looks like we're about 1.5 weeks apart in terms of being activated so I am curious to see how our experiences compare.

  2. Thanks for sharing your early experience! I look forward to seeing all your audiograms. Hope your brain gets used to all the new sounds and frequencies with your CI and you find it better than your HAs. You may read and comment on my blog.

  3. Hang in there! It will get better! I remember being so overwhelmed with a range of emotions in the beginning. But practice, patience, and perseverance is the key!

    Laurie in TN

  4. Kelly, I plan to keep up with you too! Yours is the closest experience to mine that I've found so far, and I'm really frustrated. I called mine torture yesterday too. Some people just seem to transition so much better... luck of the draw for us?? or have we just been deaf as doorknobs too long? LOL!!

    Thanks, DD. I'm not sure when I'll get that audiogram up, but I'll try to do it soon. I'm pretty amazed at what it claims I can do! I just need to get my brain with the program.

    Thank you, Laurie. It's good to hear from you!

  5. Wow, what a interesting couple of days you've had.

    I'm sure in time it will get better and you will be amazed at what you will be hearing! I don't have a CI, but I enjoy reading about people who do and how excited they are to have one and what they go through.

    Best of luck to you!!

  6. Thanks, Jelly. Are you considering a CI in the future?

  7. =).... THAT'S GREAT NEW...hope ya get soon as I get better too!

  8. plz send me more details Sahar Afshan Khan