Saturday, April 4, 2009

Activation: Part Two.... the drama continues...

Well, I feel like a drama queen with all my "woe unto me" tales of the first two days of mapping and beyond. Nonetheless I'll carry on with the story for anyone interested in hearing me moan about it even more.

Why does it make me feel so tired to just think about activation and having the implant on? I have to turn it off to write, and right now the right side of my world is heavily silent but much relieved at the same time for the break. Silence has never been so still as it is after a busy day with the .... hmmmm... what's a new way to describe today's listening pleasure??? Okay.. so silence has never been so still as it is now after a busy day wearing the device that sounds like a squealing microphone with feedback in a huge cafeteria bouncing off the tiles and walls (the kind where baffled students pause everywhere to grab their heads flinching at the inflicted agony upon their ears.... Seriously, can you tell I used to teach?)

I'm four days (and a few hours) past the initial activation, and I've finally decided to leave my map for most of today at P1 (the quietest level, which is actually an oxymoron to call it quiet at all.) If I accidentally hit anything higher than P2, it's very much like that painful squealing microphone so I'm not pushing it. As it is, I'm adjusting to the high pitch squealing a little in that I can finally ignore it somewhat, but I'm not really picking up anything specific sound related that doesn't sound like bell or whistle ringing. If I read James' lips it seems like I'm getting a little something in there with the din of the ringing, BUT my brain has a way of hearing when it's really not if I am at close range to speech read, so I just don't know.

Anyway, stepping back to the night of initial activation, I finally took my CI off for the day around the time I went to bed. My brain was highly overstimulated. When I tried to sleep the strangest thing happened. I'd start drifting off and I'd have vivid dreams that would jar me awake before I was even fully asleep. Every time I started and was stunned to find that I wasn't really somewhere else and was actually in my bed. The room would spin a bit (motion sick feeling) and I'd slowly go back to sleep only to jump up again with the feeling I was somewhere else in the world. The splicing dreams were like a kaleidoscope of images and places and conversations swirling in my head making me extremely anxious. I finally told James I thought I was flipping out. He patted me on the back and reassured me, but I just couldn't stop tossing and turning and shut my mind off. As tired as I was from wearing the processor all day, my mind was working overtime from the shock to my system. I got out of bed, went to the computer and wrote my CI email group. They've all been supportive and just getting up and telling them I was going batty was therapeutic, and I was finally able to get some sleep after sending the email. I told them I felt like I was being taking over by a symbiote that lives in towers with ringing church bells of the thundering variety. (I'd just watched Spiderman 3, so don't be impressed with the word "symbiote" being used in my blog, if you even were impressed... :) If they thought I was loony tunes they haven't let on, and I've gotten so many responses from them with advice and encouragement in the last few days. They are a great group of people, and I really appreciate that they have and continue to humor me.

The next morning James had arranged for Aidan to spend the day at a daycare near us that he'd gone to a few times before when James was in the hospital. When Aidan came in to tell me goodbye, I was sans glasses, hearing aid, and CI... 100% Helen Keller mode. I told him I loved him, and the little stinker told me for the first time ever that he loved me and gave me a big sloppy kiss. I had not a clue what he said. James told me. Of course he hasn't said it again at any time that I've been plugged in and in tune with the world, but I cherished the moment regardless and felt extra bad sending him away for the day.

Aidan is not a fan of going to daycare whatsoever. To make matters worse, the daycare is next to one of Aidan's favorite places in the world, McDonald's. The poor baby was so excited at the prospect of his daddy taking him to McDonald's (or Donald's as Aidan calls it). When he saw where he was really going he just lost it. James took him into the daycare screaming and crying... and James had to leave quickly after taking him to the breakfast area so Aidan could transition and calm down. This is how I know this is indeed my child. He called after his daddy yelling, "SHOPPING! SHOPPING!" Had I been there I might have snatched him up and run away to the mall or Walmart. He loves shopping at Walmart because Walmart always has a "Donald's" in the house. Oh, I love that baby!!!

James went to work for a little while and then came home to pick me up for the second appointment. We arrived to find not one, but TWO interpreters waiting for me. Don't you love it? It was a mix-up, but I was covered. Only one ended up staying, and Sophie was great. The whole appointment went so much more smoothly. James and my friend, Shelly, were both sitting behind me for moral support. No chaos... no drama... straight to business... more listening.... more mapping... Audiologist was more pleasant. We went over all the equipment in the box... the cords, the batteries, the paperwork. It was pretty straight forward. There wasn't much change as far as how the CI sounded to me after the second day of mapping but having an interpreter there for anything I missed made me feel a lot less dazed, confused and frustrated.

Before I left, I went to the sound booth for a quick test. It was just the usual dinging and ringing sounds. I was no where near testing speech of course. When I saw the audiogram a few minutes later, I almost passed out. All I can say is... holy smokes... Even without having a clue what's going on with all the ringing and buzzing and whatnot, I was hearing sounds across the audiogram between 15-40db (it goes up and down in that range across the audiogram in a zigzag pattern). I have a sloping loss that completely wipes out and goes off the charts, so that is just dumbfounding to me. That also explains why I'm losing my mind. My brain hasn't got a clue what it's been hit with this week with those piercing high frequencies. I'll post my audiogram soon since I'm not explaining it all that accurately, but you probably get the idea. I must say I choked up a bit, and when I showed it to Shelly (also a former deaf ed teacher) I don't think she knew whether to jump up and down or cry.... so I think she was doing a bit of both.

That afternoon James and I picked up our little angel (with the lopsided halo) and were told he'd been telling the staff "bye bye" since noon. He was thrilled to see us, and we took him out to eat as a treat. No one felt like cooking anyway. No, we didn't make it to Donald's place, but I think the little guy was perfectly content just hanging out with his parental units.


  1. Good Morning Michelle!

    Wow, you and I seem to have had a very similar CI turn on experience. Bells, Bells, Bells and everything sounds like it has a ring to it.

    A good way I can describe my turn on is this: Before we started, I was sitting in a nice steam room all comfy, cozy, and feeling lazy. Then five strong men picked me up and dumped me into a swimming pool full of ice.

    After the second mapping my CI response was better for me too. I wonder if any studies have been done to initially map the CI with the patient's last know hearing audiogram, then, over a series of weeks (not two days), bring up or add in the deficit hearing frequencies?

    Would this not "ease" the integration and system shock?

    Something to ponder.



  2. I am so with you and your idea to map according to a previous audiogram initially, at least so something would be a little more recognizable. I'd like a boost in the low frequencies already. Are you wearing a HA in the other ear? I don't think you've mentioned it.

  3. Still looking forward to seeing all your audiograms. 15db is impressive, can your 40db be improved?

  4. Wow! Well, I'm finally all caught up! I hadn't had a chance to sit down and read your blog the last few days. I'm sorry that the baby sitter didn't work out and that Aidan had to go to the daycare. :( I have to admit, you had me rolling at "Donald's" and "SHOPPING!" LOL I love it! The apple definitely doesn't fall far from the tree! :D

  5. DD, you know as impressive as 15db is at the moment, I'm more concerned with improving the quality of sounds than the amount of sounds. Hearing at such high frequencies is extremely overwhelming when IF I've even heard those pitches it would've been before the age of 3.

    Melissa, I knew you'd appreciate the latest with Aidan! LOL! Get this, yesterday morning he got up and grabbed my HA and glasses and handed to me. How funny is that?! I think he realizes it's more to his advantage that I have them than to run streaking across the house with his stash. The CI is NOT within his reach. I don't trust him that much. :-P

  6. Hi Michelle - I saw your post on Deaf Village. I am wondering where you found the CI email support group? You can resond at if you get the chance. Thanks, Joshalyn