Good News, Bad news

    This week I got a card in the mail reminding me that it is time to make an appointment with John, the audiologist that programs my cochlear implant.  It hardly seems like six months since I have seen him.  Once again, I am uncertain how things will go.  On the one hand, because whatever changes are happening in my head are incredibly gradual, I don’t really notice that much has changed.  And yet, other people tell me that they can tell that I am hearing better.   

    One of the few places that I notice a difference is in meetings.  Whether it is in a small meeting, or in youth group, or in a large room like the fellowship hall, I notice that I can hear more than I used to.  Not that long ago, I could barely make out anything in our youth meetings and almost nothing at all in a big room like the fellowship hall, but lately I can hear enough to keep up with some of the conversations.  I still am not where I would like to be, but I can tell that things are better than they were.

At least until last week.

    Right around Ash Wednesday, I noticed that it was suddenly harder to understand the people around me and discovered that my hearing aid was acting up.  No problem.  Since receiving a cochlear implant, I have two hearing aids and only one ear to wear them in, so I have a spare.  In fact, at one of my last visits my regular audiologist, Walt, reprogrammed them both to fit my right ear.  So when my hearing aid went on the fritz, I just switched over to the spare.  Things were kind of busy at work so I figured that I would just make an appointment after things calmed down a little.

That worked for two weeks.

    But after two weeks, my spare hearing aid quit.  I emailed Walt on a Thursday and got an appointment the very next Monday.  One hearing aid didn’t work at all and the other works as long as the ear mold isn’t attached.  Even Walt thought that was pretty weird.  In any case, both of them have been sent back to the factory.  That means that the only things that I am currently hearing are coming through my cochlear implant.

And that is my good news, bad news thing divides.

    The bad news is that I really can’t hear anything on my right side without hearing aids.  But the good news is that since I have an implant I can still hear something.  If I didn’t have the implant and both hearing aids quit, I would be in deep weeds.

    The other good news, and really sort awesome, is that even hearing only through my implant, I am doing fairly well.  I can hear reasonably well in most situations and have even been listening to the radio (a little) in the car.  Of course, any place with a lot of ambient noise is almost impossible, and conversation around the dinner table at home is pretty difficult to follow, but I am relatively functional.

Six months ago, I’m not certain that I could have done this well on my implant alone.

So I guess I’m a little excited to see John and have my implant reprogrammed again. 

Who knows how much better things might get?

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Join the Adventure!  

Earlier posts about my hearing adventure can be found here: My Hearing Journey.
Read them all or just catch up on what you've missed!

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Living in Cyborgia: One Month Anniversary

Not MY head.  I only have ONE implant.

    Just before I left on vacation with my sons, I visited my surgeon’s office for my one-month, post-activation, check-up.  Aside from the fact that I was already wearing my cochlear implant, it was almost exactly the same as my activation visit one month earlier.  I saw the audiologist, we checked out all the electrodes in my head, tested for the loudest input I could tolerate, and then reprogrammed my devices with those new levels.

As it turned out, not much had changed from the month before.  The audiologist said that the changes were measurable, but “subtle.”  Regardless, it made a noticeable difference but because the changes were small, I will not return for another visit for three more months.  But while the computer may not be measuring much change, I can “hear” my brain changing.

    When my implant was first activated, everyone sounded like Mickey Mouse or the munchkins from the Wizard of Oz.  As time has passed, I find that people still sound weird but not quite as weird as before.  Voices are, slowly, getting easier to understand and I have occasionally even turned on talk radio.  There I can, depending on the voice of the host, understand some of what is being said where a few months ago I could understand very little, if anything.  When the car is moving and there is lots of road noise, understanding is a lot harder and, for the most part, not worth doing.  Still, it’s an improvement. 

    Sunday, I tried to listen while my friend Ken preached at church.  While what I heard and understood was noticeably different than what I heard a few months ago (which was absolutely nothing, because it sounded like Charlie Brown’s teacher – wah wah wah), and while I could understand bits and pieces of his sermon, it took a lot of concentration and I didn’t get a lot out of it (Sorry Ken).  Even so, I am encouraged by the improvement because I can tell that something is going on.  Even if my progress is slow, and even if I get frustrated that it isn’t going faster, I can tell that my brain is changing.

    A few folks have asked, and I know more are wondering, so yes, I am doing my “physical therapy” but probably not as often as I should.   I’m supposed to listen to myself talk and say the alphabet and lots of other things.  I don’t do that as often as I think I should, but I do listen to my family (and other people) talk and it is noticeably easier to understand them.  As we drove to Colorado and back, I could carry on actual conversations with my sons which would have been completely impossible just a few months ago.

    Clearly, there the road ahead remains long, and progress remains slow, but overall, the news from Cyborgia is good. 

There is progress.

Slowly but surely, I am re-learning how to hear.

And that’s good news.

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Join the Adventure!  

Earlier posts about my hearing adventure can be found here: My Hearing Journey.
Read them all or just catch up on what you've missed!

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To receive email notification for updates to the Crossfusion blog, click here.

Cyborg Adventure: Activation!

    Two days ago, on June 30, 2014, I again visited my surgeon’s office and finally received the outside part of my implant.  This event is normally referred to as “Activation.”  It is the moment when the external electronics (the processor) are added to the internal implant and the electrodes which were implanted deep in my inner ear.

    Despite my repeated warnings that there would be a long learning curve, I think that some people still expected my hearing to miraculously return to normal.  I knew that wasn’t going to happen, and it didn’t.  Even so, the chief audiologist (who was in charge of the activation) felt that it went quite well.  During the activation, the electrodes (there are twelve) were turned on, one at a time, making a tone that increased in volume.  While it did so, I was to point to a chart that indicated my perception of the loudness until it reached a point where it was uncomfortably loud.  That happened eleven times but on one of the electrodes, no matter what “volume” it was at, it felt uncomfortable.  It was strange.  While it did not “sound” loud, I could still “feel” the volume as if I was listening to a bass drum and could feel the “thump.”  According to the audiologist, eleven out of twelve was very good as some people can only discern the levels of volume on a handful of electrodes the first time.

    After all of the testing, and programming was done, we spent over an hour going over all of the accessories and attachments that come with the implant.  I had heard others with a cochlear implant talk about “the briefcase” that they received at activation, and discovered that “briefcase” is not a metaphor or an exaggeration.  I received a real, physical briefcase that was full of spare parts, batteries, wires, and other things as well as an entire shopping bag full of other pieces and parts.  I also have a thick stack of instruction manuals that I am supposed to read over.  Despite spending considerable time going over this with the audiologist, I will be spending a fair amount of time looking over all of these things again and figuring out how and when to use them.

What’s it like?

    For now, as my brain reorients itself to this new way of hearing, the world sounds strange.  I have heard the words “robotic” and Electronic” used to describe it and those certainly apply.  Sometimes people around me (and my own voice) sound like they’ve been sucking helium or are imitating Mickey Mouse.  It’s weird.  The good news is, even though the world doesn’t sound like it’s supposed to sound, I can hear things that I haven’t heard in years.  When we came out of the doctor’s office and started the car, it beeped to remind us to fasten our seat belts and I heard it.  I had no idea that our car made that noise and had never heard it before.  I can hear my phone ring, and water running in the sink, and the click of my computer mouse and I haven’t heard those things in a long time.  Yesterday, as I went out to retrieve the newspaper, I might even have heard a bird sing, though I’m not sure because it sounded weird.

So what’s next?

    As expected, I received a list of exercises that I need to do as “physical therapy.”  I am to take my hearing aid out and, hearing only with my implant, say the alphabet out loud, or count out loud.  I am to have my family read children’s books to me as I read the words so that my brain can begin to relearn what the sounds are.  My cousin, who also has a cochlear implant, said that “weird” will last for a while but my audiologist told me that in six months they hoped that I would be able to hear (understand) as well as I could before my surgery.  After that, they said that I could expect continuing improvement for up to a year, and possibly even two years.

    I knew before we started that this is not a quick fix and, while in some ways things are already better, I know that this journey is going to take a while.

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Earlier posts about my hearing adventure:

Surgery and Recovery                                        June 6, 2014

T-minus Two Weeks and Counting                    May 5, 2014

Cyborg Adventure: Realistic Expectations         April 15, 2014
Managing Expectations                                     March 24, 2014
A New Cyborg Adventure                               March 12, 2014
Reflections on Going Deaf                                June 30, 2011

Surgery and Recovery

The deed is done. 

    A little over two weeks ago I received my new cochlear implant.  I had hoped to post sooner, but mine was not, apparently, a model recovery.  While it was expected that I would be off work for one week, it turned out to be a bit more than that, and while the dizziness and nausea was supposed to pass in two or three days, mine lasted considerably longer.  In any case, I am now back to work and gradually getting back up to speed. 

    As I recovered, I took a few notes in case others are interested in comparing their own recovery.  I don’t suppose that many people will be interested, but my purpose in writing is so that those facing implant surgery might be realistic and not envision their recovery with rose colored glasses.

    The surgery it self was easy.  I slept through it.  Afterward, I felt fine but was likely still under the influence of anesthetics and several pain killers as well as anti-nausea drugs.  Once home, I slept most of the day.  From my, now deaf left ear, I heard noises.  I had read that I might experience ringing in my ears so I was curious what might happen.  I did hear some ringing but also something like distant boat horns.  Overnight I slept, but with a gigantic pressure bandage over my ear, along with the pain, I only slept about an hour at a time.

    On day two I slept a little less.  I heard ringing, but also a sound like wind in the trees before a thunderstorm.  If I looked down (a bad idea) I heard a single tone like your audiologist uses in the soundproof testing room.  My head hurt, but much of the discomfort came from wearing the pressure bandage.  It was sort of like how your foot feels when your hiking boots don’t fit.  As the meds from the previous day wore off my headache got worse.

    On Day three the compression bandage had finally come off, which was great, but I stopped writing things down.  Why?  I felt like poo.  I had been wrestling with post surgical pain, headaches, dizziness and nausea as expected, but also had a runny nose.  Initially, I assumed that it had something to do with the implant surgery, but my wife (Patti) reminded me that two of our kids had been sick the week before and I might have picked up a bug on top of everything else.  Regardless of the cause, aches and pains turned into a full blown, flat on my back, sick to my stomach, head-pounding migraine.  During this time, Patti reminded me that my post surgical instructions were to keep moving and that the more I moved the quicker my nausea would clear up.  The problem was that I felt too awful to do anything.

    By Sunday (Day 6) I stayed home from church but was well enough to get up, shower, get dressed and go to my daughter’s high school graduation and then out to dinner with the family.  It was a great day but I paid for it on Monday.  I don’t know if I overdid it or if whatever bug I had rebounded, but I woke up with a headache again.  After doing a few things in the morning, I ended up back in bed sick the rest of the day (headache, nausea, dizziness, etc.) and was again sick all night. 

    The good news is that Tuesday was better and by Wednesday I was back to work.  At work I was still a little wobbly (not quite dizzy, but not really steady on my feet either) and by Sunday I was in the pulpit preaching.  With hearing in only one ear I sounded weird to myself, but everyone assured me that they could hear and understand me just fine. 

    The oddest thing was the new sound that I hear in my left ear.  Have you ever listened as you dragged a drinking straw in and out of a cup with a lid at a fast food restaurant?  In one direction it squeaks, and in the other it makes a weird kind of ‘hoot’ sound.  For days, whenever I walked, with each footstep, I heard that ‘hoot’ sound.  Hoot, hoot, hoot, everywhere I went.  Weird.  Today, this has mostly stopped but I still hear it occasionally and while I continue to improve, I am still fighting daily headaches and just a bit of occasional dizziness.

    Perhaps this isn’t exactly a textbook recovery, but that’s usually the kind of luck I seem to have.

    I went in for my post surgical follow-up a few days ago and the doctor said that everything looks really good.  He will see me again for my activation in three weeks. 

Stay tuned, I guess.

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Earlier posts about my hearing adventure:

T-minus Two Weeks and Counting                    May 5, 2014

Cyborg Adventure: Realistic Expectations         April 15, 2014
Managing Expectations                                     March 24, 2014
A New Cyborg Adventure                               March 12, 2014
Reflections on Going Deaf                                June 30, 2011