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! :)

I am getting a bit ahead of myself.  So, I now will press the rewind button, and give you a bit of an overview of how things have gone since activation day.  I have had 2 "mappings" since then.  Mappings are basically programming sessions, where the audiologist adjusts the settings on the CI.

First, I thought I would show you how the processor looks on my head:

I am looking forward to getting the new processor from Advanced Bionics (AB). It is called the "Naida Q70" and will be half the size of the processor I am using now, which is called "Harmony".  The Harmony is quite heavy and feels a bit precarious on my ear because it is so much bigger than my hearing aid and I am not wearing an earmold to hold it secure.  It is kind of nice not to have to wear the earmold...it is a strange sensation to feel the wind blowing through my bare ear.  Almost indecent ;).

It has been an adjustment to get used to the size and weight of the processor, as well as managing the cable and magnet headpiece.  I have knocked it off my head a few times while brushing or fidgeting with my hair.

It is hard to see in the picture, but there is a large bump on my head where the implant is located.  The area is still tender, and I still can't sleep on that side.  You can also see that my hair is already growing back.  I wish the headpiece was a little further back, as it would be easier to hide with my fine hair.  The incision seems to be healing well, but it is red and tender.  My ear is still numb, especially along the top and behind the ear lobe.

WEEK ONE:

This week was TOUGH.  All I could hear was a constant, high pitched squealing (like a sustained microphone feedback"eeeeeeeeeeeeeee" sound) in the background.  As soon as I connected the magnet headpiece to my skull, it was like an electrical jolt running through my brain.  I literally cringed in anticipation every morning before I had to put it on, and breathed a sigh of relief when I could take it off before bed.  Everything was too loud and echoey.  My brain felt like it was being slapped when someone spoke loudly.  The sound of crumbling paper, dishes clattering and/or any sudden loud noise was like being stabbed with an icepick.  Needless to say, all of this added up to some pretty nasty headaches.

Sorry to be so dramatic and gory in my descriptions!  If you are considering getting a CI, please do not let this scare you off.  I promise you that your experience will not come straight from a horror movie ;).

There were so many times I wanted to rip the processor off my head and hurl it across the room.  Then stomp on it for good measure.  But I gritted my teeth and stuck it out, because I knew I had no choice.  The more you wear your CI, the faster your brain adapts.  I am pretty proud of myself for having the willpower to keep it on, no matter what.

It got a bit easier each day.  I was somehow able to ignore the squealing and focus on overlying sounds.  I played music when I was by myself because it drowned out the squealing a little.  Even though music sounded like glasses clinking together most of the time.  Vocals sounded mechanical and just weird - although this improved as the week went on.   But this was better than the squealing.

Because I was at the end of my rope, I made the trek back to Sunnybrook for another appointment.  The audiologist checked each processor component to make sure everything was in good working order, which it was.  I was told to try and stick it out, as my brain was getting used to a lot of new input.

By day 7, I had figured out that the squealing seemed to get louder when I was close to my fridge or dehumidifier.  It also got louder when I was on a bus or train.

Needless to say, I was thankful when it came time for my first mapping session...

....even though it takes 2.5 hours for me to get to Sunnybrook from my house one way (40 min drive + 60 min GO train ride + 25 min subway ride + 20 min bus ride).  That is 5 hours total commute time.  If I drive, it is a crapshoot - at minimum it would take 1.5 hours, but often takes longer (2+ hours) because of traffic.  To be honest, I prefer not to drive, as this adds more anxiety to an already stressful, overwhelming experience.  Highway 401 in Toronto during rush hour is definitely not relaxing or conductive to a positive or patient mindset.

WEEK TWO: 

Apparently the squealing I was hearing was background noise (e.g. fans, motors etc.), which my brain could not make sense of.  I simply did not hear these types of higher frequency sounds before (even with my hearing aids).  The audiologist turned on something called "Clear Voice", a noise reduction algorithm that tries to minimize steady state noise (like a motor or fan) without reducing voice, which tends not to be a steady state.  She also reduced threshold levels of the electrodes, so that soft sounds were minimized.  This helped alleviate the squealing considerably.

The audiologist also tested each of the 16 electrodes within the array that is implanted in my cochlea.  All I had to do was sit there (kinda nice!), while she ran tests that measured response of my auditory nerve.  She said all of the electrodes responded well, with the exception of one.

I was just happy that the squealing was gone!

So off I went with 3 programs to try.  2 new programs (one with the wonky electrode turned off and the other with it turned on), as well as the old program (with the squealing - needless to say this program gathered dust!!).  They always give you the old program, in case you don't like any of the new ones.  I could not tell the difference between the program with the electrode turned on and the one with it turned off.

I had a scary moment on the way home from this appointment.  A tall guy with a huge bag brushed past me on the GO train platform, and knocked the external processor off my head.  I don't think he realized and kept walking.  I was left to dive for the falling processor, which stopped perilously close to the tracks.  The cable attachment broke off, and the battery and ear hook separated.  I was able to pry out the broken cable piece with tweezers and replace it once I got home.  Everything seemed to be working fine after that.  That sure was a suspenseful drive home!  Oh, and I was pretty proud of myself for being a successful CI mechanic! ;)

Also, the audiologist gave me homework.  I had already been working on listening exercises for hours on my own, but she specifically suggested I focus on discriminating vowels.  For example: I was given a set of 14 h-----d words (e.g. hoard, head, hod, herd, hide etc.).  I was supposed to listen to someone saying one of these words with their mouth covered (so I couldn't cheat), and I had to guess which one they were saying.  This was an exercise in frustration.  I simply could not consistently tell the difference!  This particular task started me off on a spiral of frustration and negative thinking.  But I persevered.

NOTE: I will write a separate blog post about the listening exercises I have been working in more detail.  I don't want to make this post any longer than it is! :)

By the end of the week, my brain had already become used to the input, and everything sounded very quiet.  I was excited that I was able to hear the station name announcements on the TTC (subway) on the way to my next appointment....so I went in with a more positive frame of mind.

WEEK THREE (almost):

The audiologist boosted the volume during my second mapping session.  Apparently, they slowly increase the stimulation level (volume) over the first 4 mapping sessions until it stabilizes, then they start tweaking other settings to help you with discrimination.

She went through each of the 16 electrodes and increased the volume one by one.  The electrodes are like keys on a piano, with a progressively higher frequency as you go from left to right (as pictured on the computer screen).  I had to tell her to stop when the beeping became uncomfortable.  This is a difficult task.  It is SO hard not to second guess yourself!  You don't want to tell her to stop too soon, because then it will be too quiet, but you definitely don't want to push the envelope with the stimulus level and end up in pain all week!  Not to mention that it is a 5 hour commute if I need something adjusted.

I thought the end result sounded great in the quiet audiologist's office.  Much louder than the previous program, and a bit clearer.  However, on the the way home on the bus, I was in tears.  Everything ALREADY sounded too quiet.  I could see two people talking across from me and they sounded like they were miles away and muffled - like a wet blanket had been thrown over them.  I felt like I was in a vacuum, with only a distant roaring sound in the background.

I emailed my audiologist who said that my auditory system had probably already adjusted to the increase in volume.  Since it was a Friday, I couldn't go back.  I panicked because I only had one more mapping session, and it was not until the following week.  I have been placing a great deal of pressure on myself to be perfect and magically like a normal hearing person before returning to work. Thankfully, I was able to get additional appointments for the following week to try and remedy the situation as much as possible.  I will be going to Sunnybrook tomorrow for an appointment.

This brings us to the present day!  I thought I would end this post on a more positive note by listing sounds I have been able to hear thus far.

• Rain pattering on the window (this scared me, as I thought someone was breaking in!)
• Birds chirping (SO loud!!)
• Wind rustling through the trees (quite soothing)
• Hammering in the distance (even through a closed window!)
• My cats licking their fur (weird...I could even hear a slurping sound)
• My cats chewing their food from the next room (like screws going through a meat grinder)
• Clothes rubbing together
• Dishes and utensils clinking together
• People chewing (now I'm VERY self conscious when eating)

I am able to tell the difference between male and female voices already.  Apparently this is very positive.  Voices still sound monotone and slightly robotic.  Nobody sounds like Mickey Mouse as so many people report.  Disappointing...I was looking forward to living in a cartoon world ;).

I can discriminate words without lipreading if they are presented in categories (e.g. days of week, colours, months, numbers etc.).  I can correctly choose from a closed set of words if they have a different number of syllables (e.g. train, anniversary, paper etc.), or different vowels and consonants (e.g. pipe, chew, cat, cow).  Right now, I am working on words that sound very similar (e.g. tin, tan, ten).  Eventually, I will work towards open set words and/or sentences where I will have no choices in front of me, and no context.  This is more like how real life works.  

Right now, I still need to lip read. 

I am able to follow along with audiobooks, but definitely need the text in front of me.  I try to close my eyes and listen, but it immediately fades into a jumble of sound, unless I have cheated and read ahead.  

My hearing aid on my left side (non implanted side) already sounds inferior to the CI.  It sounds too quiet, muffled and distorted.  My brain is already getting used to the input from the CI.  Eventually, I plan to wear my hearing aid and CI together for bimodal hearing.  I will need to wear both at work for safety, as well as optimizing speech discrimination.  Right now, I am trying to force my auditory centre to get used to the CI sound.  I am sure it's very confusing to my poor brain right now!

These days, I am experiencing constant headaches, and am completely exhausted at the end of the day.  Especially when I have to make the trek into Toronto to go to Sunnybrook.  My brain is still getting used to all this extra input, and it is tiring!  

I am a chronic insomniac and my CI has magically fixed the problem.  I am getting a solid 8 to 9 hour sleep every night (and I could probably have a nap on top of it).  Yay!  

A FINAL WORD...

From reading posts on chat forums, Facebook groups, and many CI blogs, I knew going in that everyone's experience is different.  Some people have a rockstar activation, where they can hear speech without lip reading right away (even though the voices sound like Mickey Mouse or R2-D2).  Others have very frustrating experiences from the beginning, but gradually begin to gain more benefit over the months to years that follow.  A minority report a negative overall outcome that never improves and stop wearing the CI altogether.  These people are usually those who have never worn a hearing aid, and have relied on non-verbal methods of communication (e.g. sign language) for most of their life.

I knew that I would probably fall somewhere in between, especially given that I have had a profound hearing impairment for most of my life.  In general, people who lose their hearing later in life (even in their teens) just do better, faster.  It makes sense.  Their brains have experience interpreting and analyzing auditory input and unscrambling the noise to form something meaningful.

Dr. Chen, my CI surgeon told me from the outset that I should consider my implanted side to be like a "baby ear".  I am starting from scratch.  So I have to train my brain to relearn and understand the difference between different vowels and consonants.  I am fascinated by the neuroplasticity of the brain and how it can adapt to form new pathways.  I will definitely have to dig out my inner geek to write a post about the science behind this in the future.

However, it is one thing to know all of these things.  And it's another to believe it, and experience it.  It is so hard not to indulge in wishful thinking and set high expectations for yourself.  I would NEVER tell someone else that they have to "hurry up" and "hear perfectly".  I am a physiotherapist - I know that rehabilitation takes time and patience.  I would not expect someone who has had a stroke to get up and walk the next day.  Why would I expect this of myself?

I have a confession to make:

I am a perfectionist.

I wanted things to work 100% right away, or at least by now.  The logical part of my brain tells me that I have to be patient, that I need to be kind to myself, and give myself time to make the amazing progress that others have experienced.  But another part hoped that I would be one of those superstars that were quickly able to reach the pinnacle of success without a hitch.

I found this quote by Professor Jennie Brand-Miller (who also has cochlear implants) to be very helpful:

"Think of your auditory pathways as like a gravel road at the moment … cars can’t go fast on them, electrical signals can’t whizz up them.  But everyday, the workmen are laying down the foundations of a super highway, smooth and capable of cars going 250 kms an hour.  It takes time to do this … weeks, months and even a couple of years … but you’ll notice the difference … week by week, there’ll be a detectable difference.  You’ll enjoy the journey, no matter what the speed." 

I need to remind myself that trying to go too fast down a gravel road may result in getting stuck in a rut, or skidding off the path.  Pressing the gas pedal by working exhaustively on listening exercises will help, but not necessarily accelerate my progress.

Right now, I feel as if I am on a gravel road winding through a forest.  I can not see what lies ahead as the trees are blocking my view.  I am sure that I will encounter roadblocks and even get stuck in a ditch once in a while!

I need to keep the faith that over time, as my brain adapts to all of these new sounds, the journey will become smoother and easier.  Eventually I will emerge from the trees, and see the beautiful view on the horizon ahead.  And I can't wait.