Gratitude is the Attitude

It is so easy to fall and sink into a quick sand pit of negativity.  I usually end up mired in this when my hearing performance is not measuring up to my personal expectations or hopes.

Some examples:

• Being asked the question: "Can you hear that?".  When a song is playing, or you are watching a movie.  Compounded by the person's disappointed / confused face when you let them down.

• Not being able to follow along and contribute during an informal social group conversation. Usually held in a darkened room with people sitting or standing in various positions, which makes it extremely difficult to lip read effectively.  Kind of like being in a ping pong match.  Maybe without a paddle, so you have to keep running after the ball.

• Having to ask someone to repeat themselves because they've said something really quickly, or while standing behind or beside you.  Resulting in them giving you the "look" (especially if they do not realize you are deaf).  You know the one...

The more you think about what you should be able to do, or what you wish you could do ... the further you sink.  And the more negative self talk occurs.  A couple of drops turns into a downpour.

Wanted : High Definition Hearing

It has been ten months since my cochlear implant was activated on May 17, 2013.   And four months since I have last updated this blog.

I have read many CI blogs, and most people stop updating after about six months.  There is a reason for this: in general, at this point, things tend to level off and you hit the dreaded "plateau".  The CI becomes less of a novelty, and more a part of your everyday life.  You start taking it for granted.  Sounds which you were previously so surprised and overjoyed to hear,  stop being so special.  Then you start focusing on what you can not do.

I continually try to remind myself that I am performing far better than I did with hearing aids.  When I take my CI off, and wear only my remaining hearing aid, I am appalled at the quality of sound.  I am amazed that I was able to survive for over 30 years with the quarks, squarks, and static that my hearing aid emits.   I feel grateful for the CI, and all the auditory milestones I have achieved in the past 10 months.

However, when I have to say "pardon?" yet again, when speech blurs into an incomprehensible mishmash of sound, or when I get that "look" when I have misheard something (hearing impaired folks will know what I mean), I inevitably sink into a pit of negativity.

I was aware going into this that a CI would not be a magic hearing bullet.  However, I still hold out the hope that I will eventually be transformed into a "normal" hearing person.

No such luck.

6 Months After Switch-On: Slow but Steady

Is it possible for a turtle to run?

These days, I am feeling rather like a turtle that just wants to get to the finish line ... yesterday. But my little turtle legs simply will not run fast enough.

What does the finish line mean for me?  This is my hearing wish list:

• Understanding speech without lip reading.  Easily, without effort - no matter who is speaking, and whether or not I am concentrating.

• Being able to talk on the phone without panicking.

• Understanding and appreciating music.  Being able to make out the lyrics the first time I hear a song, without having to memorize the words and play it again and again.

• Auscultation of lung sounds (listening to breathing with a stethoscope).  

• Improved speech (I am self conscious of my "deaf accent").    

A parallel universe?

I have been struggling for a few weeks with a case of writers block.  So many people have been asking me to update my blog and describe my experiences these last 3 months.  I have sat down in front of my computer aiming to put together a perfectly worded, eloquent, descriptive summary of my journey thus far.  But I just can not seem to do it. 

What can I hear?  What can't I hear?  What do I want to hear?  Let's not forget what I don't want to hear (if I had a dime for every fart joke I've heard, I could retire!!).  It would be easy for me to come up with lists.  

However, I want to put together more than a bunch of sounds lined up neatly next to bullet points.  Part of the problem is that my experience drastically changes from day to day, from hour to hour.  I could blame this on my frame of mind, my fatigue level, the settings on my CI, the person speaking, amount of background noise etc....that is a whole new list. 
   
Things change so much, so often, that attempting to accurately and concisely capture how things are going is difficult, if not impossible.  A post I would write after a particularly bad day would sound very depressing.  I fear coming across like an ungrateful, negative person.  On the other hand, if I were to write a glowing review of all the amazing progress I have made - this would offer up a skewed perception of my reality.  Although, it would be what most of you would want to hear. 

On top of all that, I have so much to say, that the thought of attempting to put it down on paper is overwhelming.  One of these days I will tackle it! 

For now - I have decided to try to answer a question that was asked of me the other day:

"If you could change one thing about yourself, what would you change?" 

I think the answer might surprise many people.  I think I surprised myself!

Day 18 After Switch On: Patience Is Required!

I have been a bad blogger!  An update is long overdue.  I apologize for that.  To be honest, I have been waiting to feel more positive about things, so that I did not sound like a negative, ungrateful complainer.   Everyone has been so wonderful and supportive.  They hold high hopes and expectations for me, and want me to achieve my hearing goals.  I feel like I would be disappointing them if I reported the reality of my experience these last 18 days.  I really wanted to be able to share uplifting, miraculous accomplishments, like : "I had my first phone conversation!", "I could understand the radio in the car!" or "I could understand you without lip reading!" and so on...

What I need to be telling myself - OFTEN!

Don't get me wrong.  I am doing okay.  The CI seems to be operational, and doing what it is supposed to do.  I am thankful for that.  I am sitting outside writing this post and can hear the birds chirping, someone hammering a few houses away, and my cats meowing at the window.  That is pretty miraculous in itself.  But I am still not able to understand speech without lip reading.  Words and sentences are like unintelligible blobs of sound - I can hear the voice, but comprehension seems unreachable, no matter how hard I try.  Too bad the CI did not come with an autocorrect feature like the iPhone! :)

Activation Day

Activation day was today! It went fairly smoothly.

As instructed by the Sunnybrook team, I am trying to keep my expectations low and my hopes high. I did not expect this to be an "Insta-Hearing" day (but I kind of hoped it would be!).  It definitely wasn't...and that's okay. It will take time for my brain to figure out all of this new input, especially the higher frequency sounds.

Positive: All 16 electrodes are firing properly! Oh, and I didn't electrocute myself! ;)

Not so positive: High pitched constant squealing in the background...kind of like this.  It is exhausting to listen to.  Hopefully it will go away soon. It might just be overstimulation of my auditory nerve.

I CAN still hear some voices, and random noises on top of all the squealing. Who would have thought paper rustling and keyboard keys clacking were so loud?!

I will write a longer blog post about today, once I gather my thoughts.  

Thanks everyone for your support. It means a lot! ♥  

Pretty amazing...

Here are the X-rays that were taken immediately after my surgery.  I was able to download them from MyChart.

"Caldwells" (posterior-anterior) view
(front view)

You can see the incision line with staples going across the bottom left of the X-ray.  The big circle is the receiver-stimulator part of the implant, which was set into a hole that was drilled into my skull.  The small circle on top is the magnet.   To see what the implant itself looks like and how it works with the external piece, click here.

You can also see the electrode array which was inserted into my inner ear (line coming out of bottom circle).  According to the report, the "right cochlear implant wire lead is seen taking nearly one full turn of the cochlea".   This is a great news!  This means that they were able to fully insert the electrode.  Sometimes the surgeon is not able to get it all the way in (for a variety of reasons, usually related to abnormal anatomy).  If this happens, sometimes the results are not as optimal as they usually have to turn off some electrodes.