Day 4 – Post Activation

Starting to get used to the loudness, the wind, the sensitivity of the microphone.

Household sounds that I didn’t hear before:

–       The dog tags on my dogs make noise as they walk.

–       The buttons on the microwave make noise when I press them and the microwave beeps when it finishes.

–       The buttons on the washing machine make noise when I change settings.

–       Emptying and loading the dishwasher.  Gah!  Ouch! Loud.

In the car:

–       The fasten seatbelt flashing signal also beeps. Who knew? Not me.

–       The blinker makes a noise.

–       Road noise. OMG. I have to work not to tense up from it.

–       If I open the door with the keys in the ignition a beeping noise happens.

Other:

–       My footsteps sound so sharp and loud. Crack! Crack! Crack!

–       Turning the pages of the newspaper. Ow! Piercing.

I’m starting to realize just how deaf I was…

A CI friend said, “You are like a baby”.  Trying to absorb and make sense of all sorts of incoming auditory information.  And babies sleep a lot.  I like this analogy because it helps me to take it a little bit easier on myself.

And the Clock on the wall goes tick, tick, tick

This morning I was sitting in my sunroom reading the paper.  Alone. It was very quiet.  My processor is on and I start to hear beep (pause) beep (pause) beep (pause)…  I know this is not a natural sound because the intervals are too regular.  I look around and notice the clock on the wall.  I am hearing the sound of the clock’s sweep second hand as it ticks off the seconds.

Day 1 – Cochear Implant is live.  I try to follow advice that I’ve received and expose myself to a variety of sounds and situations that are part of daily living.  Go to the store, the movies, watch tv, walk the dogs.

I even do a small experiment on myself and connect my processor, via cable to the sound port on my computer.  I then watch the latest episode of ’30 Rock’ on Hulu.  I’m mainlining the sound directly into my head!  Wild.  It’s not all clear and I’m still cheating by using captions but it’s so unbelievable…  This is probably premature but the gadget girl in me couldn’t resist.  Gotta pace myself.

I am a bit overwhelmed with the amount of sound.  And with the volume.  Given that it’s day one, much of what the implant is detecting sounds like high pitched beeps.  So I’m hearing but not yet recognizing everything.  It’s kind of strange because my sort-of-working ear hears things normally (well my normal anyway).  My poor brain isn’t quite sure what to do with all this new input. How to synthesize it all. Yet.

Happy Birthday and Activation Day to Me!

It’s official!  I’m up and running with my cochlear implant.  I can now put to rest crazy fears like, “I hope I don’t have a lemon in my head!”

My core team, consisting of my husband Peter and my sister Catherine, join me for the activation appointment.  We took a few pictures and videotaped most of the session with the audiologist.  I’ll try to piece together and post a bit of footage over the weekend.  No tears and no hallmark moments but still interesting, well certainly for me anyway.

Everything is so LOUD!  Welcome to the world of sounds.  My voice sounds really weird and loud, sort of like I’m talking with a cardboard box over my head.  Peter’s voice is pretty good.  The audiologist and my sister sound okay, with weird high pitched spikes.  I think it’s suddenly the ability to pick up the high frequency consonant sounds.  I can understand them but it’s odd.

My equipment literally fills a small suitcase!  Batteries, cables, cases, covers, chargers, and more!  A gadget lovers dream.  And this is only the first processor.  I will have two external processors, one called the Harmony and an off-the-ear model called the Neptune.  At today’s session we set up the Harmony processor.

The audiologist sets a baseline program and adds a couple more programs, both louder.  Over the next week my sound tolerance will build and I’m supposed to work towards the loudest program.  The weirdness of my voice and the overall hearing experience will change.  Things will start to seem more “normal”.

We do a very short word recognition test where the audiologist covered her mouth and asked me to repeat color names.  I do very well and get approximately, 6 out of 7 correct.  This makes me happy.

After we finish with the audiologist we venture out into the real world to look for a restaurant for supper.  We head down Charles Street at the foot of Beacon Hill.  And it is LOUD but I do okay.  The wind sounds like a flapping flag in my ear.  Sirens, buses, traffic.  At the restaurant, clanking silverware, clinking glasses. Hoo boy.  Everything makes a sound!

More to come…

Barbara holdiing bouquet of flowers in a listening pose

Barbara on Activation Day

Christmas Eve in March?

Tomorrow is Activation Day!  Oh boy, what is that going to be like?

I’ve been warned to brace myself for the noisy world out there.  My brain will be flooded with a plethora of new stimuli.  It will take me some time to sort it out.  jumble of noise sounds spelled out poster style

Everyone’s brain is different.  Everyone’s hearing history and sound memories are different.  I can’t know in advance how quickly or slowly my brain will adapt.  However, my CI friends tell me that I will adapt and I will do better and better.

Again the word patience is used.  Hmm… that is still a challenge for me.  Can’t I just be a superstar and have instant success?  Sigh…  It’s okay.  I understand that effort is expected.  It’s just the child in me trying to avoid my homework.

I’ll be calling on my family and friends to help me out.  I expect there will be a lot of, “Hey!  What’s that sound?”

Talking to Other CI Users is So Important

I’m making a conscious effort to approach the next step in my CI journey as something to prepare for rather than something to worry about.  If I let myself, I can be a good creative worrier… what if this… what if that…  with the scenarios all looking pretty disasterous.  Luckily I have some great people around me who are very supportive, including quite a few implant users who are thriving today.

On Sunday, a local BEA (Bionic Ear Association) chapter held a regular meeting, which Peter and I attended.  The meeting happens at the YMCA less than a mile from my house.  I’ve attended in the past during my decision making period and this group is filled with a wide variety of people who have been so wonderfully supportive that I really do love them all.  I know that sounds sappy but it’s true.  And now that I’ve come some distance on my own CI journey, I can give back and that feels really good.

One of the things I love about attending meetings with other CI candidates and users is to hear their stories.  A fascinating and frustrating thing about hearing loss is how different it can be from person to person.  The cause, experience and journey to better hearing is unique for each of us although we share many common emotions and challenges, such as isolation, fear, and a strong desire to communicate and actively participate in the world around us.  And ultimately we all show courage when we take steps that are scary but will improve our lives.

Who was there?

  • A young boy, about 9 years old, who was implanted as a baby.  He’s wants to find out how he can get the new Neptune waterproof processor so he can go swimming and hear at the same time.
  • An older gentleman, in a wheelchair, who was recently activated and is trying find out about aural rehabilitation to  make more progress with his CI.
  • A young woman, born profoundly deaf, who now uses bilateral CI’s and can hear her Mom from another room.
  • A man, who had a CI device that failed, and had to have another surgery to re-implant one.  He’s doing great and has nothing but good things to say about the implant vendor.
  • A middle aged woman who had sudden total hearing loss and now uses bilateral CI’s and you would never know it.
  • A couple of people who are candidates and trying to decide on which vendor to choose, surgeon, where to have it done, insurance questions, etc.
  • A Mom whose impaired hearing suddenly took a nose dive.  Trying to simultaneously cope with the traumatic effects of the hearing loss, while continuing to work, take care of a family and arrange for CI surgery as soon as possible.
  • Several grandparents whose greatest post-activation joy is that they can now hear and communicate easily with their grandchildren.

More Deaf Not Good

While I wait for my activation, I am more deaf than I used to be.  My implanted ear feels like I have a ear plug in it.  At first, in the quiet of my own home with conversations with my husband I thought, this isn’t so bad.  And then I went out.  Into the real world. Holy smokes am I in trouble.  Albeit temporarily.  If I thought my communication success hinged on the specifics of the situation and environment before, boy does it right now.  Background noise and poor acoustics are my enemies.

Surgeon Says I’m Ready to Schedule Activation Day

Post-op visit to the surgeon to check on my healing progress.  Her first question to me is pretty innocuous, something like “How are you doing?”.   I reply that I’m okay, I did not enjoy surgery, and now I’m feeling pretty good.  I am surprised that suddenly I feel emotional.  What’s that about?  This surgery is not supposed to be a big deal and while some may feel that way, I guess I don’t.  Technically, surgically perhaps not very complicated.  Experientially, as a first time surgery patient, it was a pretty big deal.

The doctor visit is short.  The surgeon looks at my healing incision and in my ear canal.  All looks like it should.  I had a bit more bruising than normal and there is some blood behind my ear drum.  This will go away and is not cause for concern.  I mention that the my upper part of my ear is a bit numb and a small area on my tongue feels like the after effect of a burn.  This too is not unusual and should eventually go away.

I’m okayed for audiology to schedule my activation date in 2 weeks.  Unfortunately, the guy who does the scheduling has left for the day so I send him an email that night requesting an appointment.

The next day Charlie from CI Audiology writes me back with a series of appointments starting with the activation on March 23rd.  That day is my birthday.  Happy Birthday to me!

Surgery On Your Head Is Not Fun

I suppose it goes without saying that surgery, anywhere on your body, is not fun.  But your head is so much of who you are… is it different?  For me, the lead up to surgery, expectations, fears, etc. contributed to a pretty intense experience.  Much of it mentally and emotionally.  The support of my husband Peter and nurse practitioner sister Catherine were key and I am so grateful to them.  The actual procedure went very smoothly without complication.  On my head.

barbara in MEEI recovery room

Barbara ready for discharge

You’re sent home from the hospital with a huge bandage around your head and ear that makes you look like a wounded Civil War soldier.  The bandage comes off after one day.  Although perhaps I was premature in removing the bandages.  Because I think I was rocking that look 😉

First day and a half – bleh.  Nauseous, woozy, no appetite.  Yes you read that right, no appetite.  For anyone who knows me, that in itself is somewhat alarming.  However, not to worry, my eating is ramping up again!

Lots of sleeping.  Occasionally dizzy and unsteady.  Moving slowly.

Each day getting more energy back, feeling a little bit more myself.  The toughest thing is just not feeling 100%. I’ve been so lucky all my life to be so healthy that I have no point of reference for being less than. Patience is what I need and that is not one of my natural strengths.

How is my hearing right now?

First of all, I am very happy to have one sort-of-working natural ear.  While I may not hear very well it anchors me in the familiar.  I’m doing okay with one-to-one communication without outside noise interference.  I’ve been concerned about whether or not I’m yelling.  So far, my sister tells me I was yelling in the recovery room but since then my speech volume has been okay.  I’m also asking those around me to please tell me if I start to yell.  Modulating is a bit tricky right now since I’m hearing so little.

What about the implanted ear?

It feels like I have a heavy ear muff over that ear.  I guess that’s how the loss of my residual hearing feels.  Surprisingly, that’s not freaking me out.  I wonder if, once the swelling goes down and healing completes, whether I’ll hear anything in that ear without the implant turned on?  Probably not.

The first day after surgery, I’d hear strange sounds in the implanted ear… boooop…beeeep.  Sort of like a hearing test. The sounds would occur briefly and fade away.  Moving from laying down to upright seemed to trigger tinnitus, aka ringing, sometimes really loud!  Again, that would subside, mostly.  Now it’s a steady tinnitus, which I had prior to surgery.  Don’t love it but it’s something I’m used to.  Once activated, the sound I hear via the implant will most likely mask the tinnitus.

And now?

I rest.  I heal.  I wait.

I will visit the surgeon in a few days to make sure all looks well.  I try to put aside any crazy thoughts like the surgeon saying, “I had some leftover parts at the end of the surgery…” or “Gee, that doesn’t look right.  Guess I’ll have to go back in…”.

The cochlear implant audiology department contacted me regarding color choices on my processor equipment from Advanced Bionics.  This is exciting.  I’m one of the early ones in the U.S. to have the waterproof Neptune processor as an option.  That will be the interesting part.  Trying it all out.  If all goes well activation happens about 4 weeks post surgery.

But in the meantime, Patience and Faith.  Patience and Faith.