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We survived. 3 days after activation, bucket-free and smiling at my son's first communion. |
Remember how I claimed I had no expectations for the
activation? In fact, my exact words
were, “Instead of high expectations, truly, I
have no idea what I'm about to experience.” I apologize.
I lied.
I did not believe I would go to the audiologist’s office and
walk out understanding everything around me.
But I had excitedly daydreamed experiencing some minor improvement. Nothing big, but maybe noticing a bird
chirping, for example, or maybe a sound in the car, or possibly understanding a
word or two said to me without having to look at a person.
It didn’t happen.
On the morning of activation day, Jeff informed me that our
five year old, Claire, was burning up with a fever. Our original plan was for Jeff and I to
attend the activation and leave Claire with her babysitter, but the fever
obviously changed our plans. I figured
I’d get the temperature under control and Claire would just have to come with
us. Jeff then reminded me how our son,
Colin, had wanted to attend the activation all along. We discussed how pissed Colin would be once
he found out Claire got to go and not him.
So we decided I would pick up Colin early from school so he could go
too. The activation would be a whole
family affair.
Since this was a last minute decision, the school wasn’t
prepared, so when I arrived to retrieve Colin (after putting poor, sick Claire
in the car), the office staff couldn’t
locate him at first. I was already
behind schedule, and I started to worry we weren’t going to
make the appointment, and in effect,
I wouldn’t be able to savor my blissful, miraculous moment for as long
as I’d like.
When Colin came out of the school, he was totally confused
and angry at me for surprising him. So I was late, Colin was mad at me, Claire’s
facial coloring had taken on a greenish hue, and I was also really thirsty. When
situations like this occur in my family, we have a special retreat we go to and
our world becomes a more peaceful place: Dunkin Donuts. Yes, I knew we were late, but I also knew my
angst would be calmed with a hazelnut iced coffee.
At this point, I was still only equipped with my left ear
and its 20% hearing, so I couldn’t pursue the time-saving option of the DD
drive thru. I had to go in.
The kids requested strawberry coolattas; once I was in
Dunkin Donuts, I gave my order, and the person behind the counter looked
totally confused. She finally told me
why.
“I’m sorry,” she said. “I’m new.” Of course she was new.
So Dunkin Donuts took longer than normal too. At that point, I was definitely running late,
I was an hour away from the audiologist
, and I still had to pick up Jeff at his office.
Then Claire announced she
had use to the bathroom. Sigh. So I called Jeff and he decided to stand in
the office parking lot so that as soon as we arrive, he could grab Claire, run
her into the bathroom, and we’d be on our way as soon as possible. And that’s what happened (Claire peed the
fastest she ever had in her life), except that when Claire got back into the
car, she accidentally knocked over her bright red strawberry coolatta. Though I typically store extra paper towels
and tissues in the car, I had just run out.
Coolatta was all over the backseat, Claire, and me. But we had to continue. Mama must hear!
Just when I started to think we were going to be on
time for the appointment, my maternal instinct kicked in. I JUST KNEW something bad was going to
happen. I turned around and asked Claire if
she felt alright, but it was obvious she felt terrible.
“Are you going to throw up, Claire?” I asked. She nodded and it happened. EVERYWHERE.
Remember, I had no paper towels, and no spare tissues. Luckily, I had
a blanket I had packed for the car ride, so we were able to clean Claire up
a bit with it. I felt horrible for
her because I knew she was trying to be strong. And I selfishly admit, I was also feeling terrible for
me. This was supposed to be my happy
day, a milestone I would happily remember… and it was falling apart.
When we got to the audiologist’s office, Colin and I went in
while Jeff stayed with Claire to help clean her up some more. The staff wanted me to go in the office right
away, but I explained I was waiting for my husband and daughter to meet me because
I wanted them to be part of the activation too.
I also explained that we had “quite a trip,” and told them about Claire
getting sick. Right on cue, the office
door opened, Claire walked in, and she puked right on the carpet. Just awful.
I could not believe what was
happening.
In the mean time, I still had to get activated. The audiologist had fit me in her very busy
schedule because I had made a special request.
Being that we were at an office specializing in ear, nose, and throat
issues, the staff had much professional experience working with patients who
struggle with balance and motion sickness.
They had many vomit materials ready, luckily, and Claire was given a “special
bucket” for the rest of the visit. The
whole family, and the bucket, sat together in the office as the activation
appointment started.
Another part of the original activation plan was that Jeff
was going to record the event. If you
haven’t seen an emotional youtube video of a recipient’s cochlear implant
activation, I strongly recommend them. I
can watch them over and over again and I cry every time. They are just the most beautiful moments
captured on film, and prior to my activation appointment, I anticipated that I
would capture my own experience complete with happy tears and praise to
God. However, with Jeff now having to
watch Claire closely, Colin had filled in as the day’s videographer.
The audiologist started with a simple hearing
test. I was instructed to raise my hand when I heard a beep. It was very simple, and I heard tons of
beeps. And then I heard a sound I had
never heard before.
“Was that a high pitch?” I asked Dr. Susan.
It was—for the first time I can remember - I heard a
very high pitch tone during a hearing test.
And the happy tear rolled down my cheek.
I then recalled we were documenting this on video. I
looked over at my cameraman, but I guess he had found a game to play on my iPhone that was much more exciting than his filming responsibilities.
Oh well. In any case, that was
truly the “high note” of the appointment for me. It was all downhill from there.
After the hearing test, it was time for the real activation—the first moments I
would hear voices with the device. Dr.
Susan told me it was on, and Colin started talking to me. On my left side (the unactivated ear with its
natural hearing), I heard what I always have-- Colin’s voice.
And on the right side, I heard total bizarreness.
I had heard that during activation, voices could take on a
robotic quality, but it wasn’t as if Colin was talking in a “robot voice.” It didn’t sound like “speech” at all. It was more like a synthesizer or some very
odd soundtrack to a science fiction movie.
And then the weird tones started to layer on top of each other as more sounds
came in, though I didn’t know what they were—maybe the audiologist’s phone, or
the tapping on a desk, the crumpling of paper.
Whatever those sounds were, they just sounded like keyboard notes. Dr. Susan talking: a keyboard note. Cars outside driving by: a keyboard
note. Snapping my fingers: a keyboard
note. And meanwhile, my left ear and its
20% hearing was trying to hear OVER all of this ruckus to make sense of the
world. And my reaction to my new world of sound was, “What the
HELL is THIS?”
Dr. Susan instructed me that she would continue to talk
about my implant materials as I got used to the device. So she was talking and my left ear was
hearing her, while I read her lips (as I always have) but the activated ear was
still hearing nonsense, and I started to feel incredibly defeated. Dr. Susan continued talking but I wasn’t following. My focus was slipping, and I was starting to
feel as though I had screwed up. In my implanted head, I asked myself: What have I done?
When Claire wasn’t vomiting (Yes, the bucket was in-use during the ENTIRE appointment), Jeff was paying attention to Dr. Susan. They both knew I was totally
overwhelmed, as well as disappointed. Not only could I not hear, but I couldn’t even
keep the damn device on my head. The
magnet that came with the processor was not strong enough for my thick skull,
so we had to upgrade to the next level.
As I struggled to put on the processor and it continuously fell to the
floor, the ugly cry started. My internal
dialogue was telling me how bad I sucked at cochlear implants! This was NOT my beautiful moment I had so
desperately hoped for.
As my sad-looking family left the appointment, my sobs reached a new level of ugliness as we headed to our car.
Jeff, per usual, remained calm, gave me a hug and told me he accepted that this
was a common scenario for an activation (minus the spilling coolattas and pukey
kid). He reminded me: It will take time.
It’s been four days since the activation and for the most
part, I’ve worn the device when I am awake.
My one success is that I am doing much better at keeping the strong
magnet stuck to my thick-skulled head. Other than that, I’m still awaiting my
miracle moment.
For example, as the oven timer counted down on the stove
yesterday, I waited anxiously to hear that high note. 3, 2, 1… and… nothing.
At my in-laws, I saw the kids with their hands over their
ears as breakfast was being cooked. I
turned to see, and my mother-in-law hurried over to turn off the smoke
alarm. I didn’t hear it.
I don’t want to lead readers to believe that my implant
doesn’t work; the first hearing test proved that I was not given a defective
implant, and I hear a difference in my environment each time I turn it on. The reality is that for years, without
knowing I was doing it, I trained my brain to make sense of the world with the
limited hearing I was given. Once again,
I have to work to train my brain to make sense of all of this new
information. And the audiologist will
help. My first mapping appointment is
May 7th, and this is when Dr. Susan and I will start to fine-tune a
program that is unique and individual to me.
Once again, I am struggling with my unrealistic expectations. My activation was not the emotional, youtube-ready grand
finale I desired, and at the time, it hurt pretty bad. I understand now that it was a step forward toward the happy ending I have to believe I will one day experience. And the journey continues, one day at a time.