Tuesday, May 1, 2012

My Unforgettable Activation Experience

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.






9 comments:

  1. I am glad your surgery went well. There is never enough preparation for post op. I remember after my colectomy having to sit and move funny. I felt like everyone could see through my clothes, like x-ray and see my ostomy. Even though my close were looser. The surgery was a 20 pound weight loss. My second part i woke up say, is my ostomy there. I was feeling around my stinging belly. Same days were good, others not so much. After a few days I had to go for rides in the car to get out of the house. I cannot imagine the equilibrium issues you face. Just think of yourself as at step one. Each day is a step up the journey. Sometimes will be like a platform. Before you know it after time passes this will be like a dream. I do not even remember life pre-surgery. Soon that memory will fade and a new normal will be replaced. Life is full of progress adn set backs. Your support system will get you through. Trust a woman who just spent 5 days in the hospital with 4 different opinions and diagnoses. You are are sharing something great and it will only get better! Keep our head up!!!

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    1. Thank you! I am excited for the first mapping appointment on May 7th. Stay tuned.

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  2. This was such a beautiful, honest narrative. Of course there was vomit and frustration (insert profound mom empathy). I hope the next several days move your reality closer to your hope.

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    1. I questioned if this "Amanda" was the fabulous Amanda of the blog I've been following. So excited to hear from you... your writing is great! I appreciate the mom empathy and the kind thoughts. Thanks so much, and I look forward to learning more from you at The Wink.

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  3. I take it that you don't use sign language of any kind?
    I hope your implant will start to work for you soon.

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    1. I work at a community college and the sign language course is extremely popular. The students approach me all the time to practice signing because they assume as "the hearing impaired lady on campus," I must know sign language, but unfortunately, I don't. It's definitely on my to-do list to learn though. My five year old daughter is also interested. Thanks for commenting.

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  4. Hi, Pam,

    My 10-year-old daughter just went through her first implantation surgery last Thursday. She is still in a lot of pain, poor thing.

    I just want to thank you for your candor in telling the story of your extremely anticlimactic activation. It helps me to know that if things aren't going well, it's not just us.

    Wish us luck for my daughter's activation on the 15th. I can only hope there won't be vomit involved!

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