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Living in Cyborgia: One Month Anniversary

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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 isprogress.
Slowly but surely, I amre-learning how to hear.
And that’s good news.

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Youth Questions: How Does God Speak to Us?

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Note: Not long ago I asked our youth to write down any questions that they had about faith, the church, or life in general and I would answer them during later group meetings.  This is the first of that series.
Question:I don’t get the whole “God will tell you what to do” thing (ex. What career, etc.)
    It’s been a while since they were popular, but not too many years ago, everyone was wearing bracelets and t-shirts that said “WWJD” which stands for “What Would Jesus Do?”  Wearing them was supposed to be a daily reminder to make the kind of choices that Jesus would make in your place. The difficulty is not in wearing the bracelets and not in remembering to ask ourselves what Jesus would do, the difficulty is really in having some idea of what it is that Jesus would actually do.
   This question deals with the same problem.  Too often adults like to tell young people that “God will tell you what to do” or “God will lead you to the right career” or the right job, or whatever.  But how does that happen?  Few of us have ever heard God speak in an audible voice, so how is God supposed to tell us these things?
    Honestly, the adults in church are probably just as confused about this as you are.  In answer, let’s begin by reading 1 Corinthians 2:6-16…
6 We do, however, speak a message of wisdom among the mature, but not the wisdom of this age or of the rulers of this age, who are coming to nothing. 7 No, we declare God’s wisdom, a mystery that has been hidden and that God destined for our glory before time began. 8 None of the rulers of this age understood it, for if they had, they would not have crucified the Lord of glory. 9 However, as it is written:
“What no eye has seen,
what no ear has heard,
and what no human mind has conceived”—
the things God has prepared for those who love him—
10 these are the things God has revealed to us by his Spirit.
The Spirit searches all things, even the deep things of God. 11 For who knows a person’s thoughts except their own spirit within them? In the same way no one knows the thoughts of God except the Spirit of God. 12 What we have received is not the spirit of the world, but the Spirit who is from God, so that we may understand what God has freely given us. 13 This is what we speak, not in words taught us by human wisdom but in words taught by the Spirit, explaining spiritual realities with Spirit-taught words. 14 The person without the Spirit does not accept the things that come from the Spirit of God but considers them foolishness, and cannot understand them because they are discerned only through the Spirit. 15 The person with the Spirit makes judgments about all things, but such a person is not subject to merely human judgments, 16 for,
“Who has known the mind of the Lord
so as to instruct him?”
But we have the mind of Christ.
    What we learn here is that, as believers of Jesus Christ, we are connected by the Spirit of God to the source of infinite wisdom.  When we became believers in Jesus Christ, put our trust in him and were baptized, something happened to us.  Baptism isn’t just about what we do, but also about something that God does.  When we became followers of Jesus and were baptized, God sent his Spirit to inhabit us, to live inside of us.  What Paul is saying is that because the Spirit of God lives inside of us, and because the Spirit of God knows the mind of God, God is able to speak to us and to tell us things that we had no other way of knowing.  We are, through the Spirit, connected to the infinite mind of God.
But we can carry that thought a little further and peel back another layer.
We can also know the mind of Christ in an even deeper way.
    If you have a close friend, you can probably finish each other’s sentences.  You can stop and buy them lunch or an ice cream cone without asking them what they want, because you know what they would order.  You have taken up space in their mind, and they have taken up space in yours.  This is what it means to “have the mind of Christ.”  When you read the Bible and spent time in prayer on a regular basis, you begin to know Jesus in a deep and personal way similar to the way that you know your best friend.  When that happens, although you might not know what kind of ice cream Jesus would order, you do begin to know what sorts of choices that he would, or would not, make.
In Romans 8:5-6, Paul says…
5 Those who live according to the flesh have their minds set on what the flesh desires; but those who live in accordance with the Spirit have their minds set on what the Spirit desires. 6 The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace.
    Because the Spirit of God lives within us, and, as we begin to grow closer to Jesus and increasingly “have the mind of Christ,” our minds become set on what the Spirit desires.  What we want begins to look more and more like the things that God wants.
    Finally, there is a scripture that people often people take out of context and claim for themselves.  In Jeremiah 29:11, God makes a promise specifically to Jeremiah and the people of Israel who have been taken captive into Babylon, but even though it is a promise to them, it reveals God’s heart toward his people.
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
    We can’t say that God made this particular promise to you and that God wants you to be rich, but we can say that God does not make plans to harm you.  We know that God wants what is best for his people.  For these reasons, we “borrow” Jeremiah’s promise and we’re not too far wrong.  That doesn’t mean that bad things won’t happen.  After all, this promise came to Jeremiah after he watched the destruction of his nation and his people carried off into slavery.  What this means is that even when life doesn’t go the way that you thought it was going to go, even when bad stuff happens, God is in control, God has a plan, so instead of complaining about how God abandoned you, you ought to be looking for what God might be trying to teach you through those particular circumstances.
    While God wants what is best for you, sometimes in order to get from where you are, to where God wants you to be, God may take you through some painful places.  I used to be an engineer.  I had a good job, a nice house and a good life.  But when God called me to leave engineering and become a pastor the process was painful. I spent two years unemployed, we moved, sold our house, and I spend five years in school fifteen years after I thought I was done with my education.
    God may not call you to be a pastor or a missionary, but God has given each of you skills and gifts that are unique to you.  Each of you will go places and meet people that no one else will.  Wherever you go, and whatever you do, God has sent you there.
    When you have the mind of Christ, you will naturally be drawn to the things that God wants for you.  And sometimes, God gives you choices.  I have had friends go crazy trying to discern which of three job offers “God wanted” for them until a good friend and mentor suggested that maybe all of them were “God’s will” and God was allowing them to pick what sounded like the most fun and rewarding.  When you have major life choices to make, it is important to spend some time in scripture, prayer and in silence, listening to what God might have to tell you.  And sometimes after doing so, you will know what you should do, but other times, if you have done all these things and God is simply not sending you a message one way or the other, feel free to use your best judgment and pick what you think is best, or what would be the most fun.

After all, God loves you and wants what is best for you.

 

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Cyborg Adventure: Activation!

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    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 canhear 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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Surgery and Recovery

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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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T-minus Two Weeks and Counting

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    Last week, my wife, Patti, and I visited my Otologist (ear surgeon), Dr. Berenholz, for the last time before my surgery.  We are now armed with pre-surgery (and post-surgery) instructions, as well as prescriptions that must be filled.  The date has been set and we are “Go” for launch in two weeks.  I announced my surgery date to the church, informed my District Superintendent, and have asked a retired pastor to fill the pulpit for me on the Sunday after surgery.  My wife will go with me on surgery day and my Mom has insisted on going along so that Patti doesn’t have to wait alone for the two and a half hour surgery.   Everything is ready.
Except me.
    Someone asked me today if I am getting excited about the surgery and that stumped for a few seconds.  Honestly, I think I am well past excited and am moving toward nervousness.  And that, in itself is a little odd for me.  The only other time I have had surgery was for a herniated disc in my back twenty odd years ago.  Then, folks asked if I was worried that I might be paralyzed, but I wasn’t.  I don’t recall ever feeling nervous.  Of course, at the time, what I was feeling was pain, and I was looking forward to waking up without pain.
    My hearing loss doesn’t cause pain but it is a struggle.  I am glad that I have a chance to hear better but my joy is tempered by knowing that this surgery will not be like the last.  The last time, I woke up and knew the pain was gone.  This time I know that won’t happen.  I won’t wake up with hearing.  Three or four weeks later, when they finally turn the Med-El implant on, I stillwon’t have hearing in the traditional sense.  By most accounts what I will have (if everything works), is an ability to hear “sounds” that have been described as “electronic” or “robotic.”  In our meeting, Dr. Berenholz reminded me that my ability to hear and understand will depend upon my persistence in doing my linguistic exercises after surgery so that my brain will learn how to hear with the implant.  Further, Dr. B. said that my ability to hear and understand should be considerably better in six months and will likely continue to improve for as much as two years.
    But even though I have generally been able see the big picture and look forward to the rewards of long-term investments like higher education and retirement savings, this time it’s harder.  It seems more like looking forward to the finish line of a marathon.  It’s hard to be excited about the race.  The finish line sounds wonderful, but enduring the workouts and the long race itself doesn’t sound nearly as fun.
It’s hard to be excited about surgery because the finish line is so far off.
What I’m feeling right now is less like excitement and more like anxiety.

Your prayers are appreciated.

 

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A New Cyborg Adventure

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    In June of 2011 I wrote “Reflections on Going Deaf,” where I described how my hearing was progressively fading.  I had seen a specialist (ear, nose, throat – an Otolaryngologist ) who sent me to see “the guy” at Ohio State Medical Center (who only does ears – an Otologist).  His professional opinion was that there was no discernable cause other than “sometimes this just happens.”  He suggested that I just make the best of things with hearing aids and expect that sometime in the future I would need to have a cochlear implant.
 
    Since then, I got more powerful hearing aids, our family moved to the Massillon/Canton area and I changed audiologists (the guys that program my hearing aids).  Like everyone always is, Walt, my new audiologist, was surprised at how quickly my hearing was being lost.  He suggested that given the importance of hearing, I ought to get a second opinion regardless of how good the OSU guy was.  He recommended that I see specialist that is “the guy” in this area and I did.  Last August I drove over to Dr. Lippy’s office in Warren, Ohio had a bunch of testing done and saw Dr. Berenholz (Dr. Lippy is retired, I think).  There I got just about the same news that I had at Ohio State.  No real reason for my progressive hearing loss could be identified but some people, like me, are “just lucky.”  Yippee.
 
    What’s more, their evaluation determined that I had already lost so much of my hearing that I probably qualified for a cochlear implant and insurance would likely pay for it.  At that time, there were still a few tweaks left that we could do to make my hearing aids last a little longer so we agreed to meet again in six months.  We met again last month and did the testing all over again.  Not surprisingly, my hearing has continued to get worse.  With my hearing aids on, sitting in a soundproof room, they read random sentences to me (through a speaker) and I was supposed to repeat as much as I could understand back to them.  I got 40 percent.  It was time to see if our insurance would cover the implant.
 
    For those of you who have never had hearing loss I want to try to express what my loss might “sound” like to you.  I have no hearing in the high frequencies at all so even hearing aids don’t help because it doesn’t matter how loud you make it.  I can’t hear mosquitos or flies or bees.  I can’t hear the microwave beep or the smoke alarm or my alarm clock.  I can’t hear a lot of bells or the warning beep that tells you that you forgot to turn your headlights off.  I can hardly hear sopranos at all and pianos sound strange.  At my kids’ band concerts I can hear the percussion and the low brass, trumpets sometimes, and woodwinds almost never.  Music doesn’t sound musical, and even familiar songs sound uncomfortably strange and out of tune.  My car radio is rarely used because I can’t listen to music and while I can generally hear talk radio when the car is sitting still, the ambient noise when in motion makes everything unintelligible regardless of how much I turn up the volume.  A lot of times what I hear sounds like my head is inside a cardboard box.
 
    Last week Dr. Lippy’s office called and said that our insurance would cover 100 percent of a cochlear implant minus a sizable deductible.  I have an appointment at the end of the month to get a CT scan of my head and more tests.  After that I have to see my family doctor, have a physical and get his permission, and then we can schedule the surgery.
 
    After the surgery, there are four weeks of recovery before I return to the office and they turn the implant on for the first time.  Then, there are six months (or more) of physical therapy as my brain (re)learns how to hear.  I admit that I am a little excited and also a little afraid.  I look forward to being able to hear again, especially to the possibility of hearing music again but I also worry.  What if there are side effects?  What if it doesn’t work?
 
    In any case, the process has started.  I am, gradually, going deaf and so I will need the implant to function in a hearing world.
 
    In the immortal words of Buckwheat from the “Our Gang” television show… “I don’t know where we’re going, but we’re on our way.”
 
 
 
 

 

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Reflections on Going Deaf

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    Okay, to be perfectly honest, I may not actually be going deaf, but sometimes it feels that way.  I have cousins who were born with profound hearing impairments and they manage quite well, and often excel, in life with courage, determination, sign language and cochlear implants.  While I know them, this was always a sort of alien world to me.   I always had decent hearing, not like my wife who can hear every conversation anywhere in the house, but at least good, average hearing.  At least it was until about eight or ten years ago.  At first I noticed that when I went to the barn each morning to care for our animals and to do my chores, instead of the quiet that I normally enjoyed I could hear a quiet ringing in my ears.  Not long after, I was diagnosed with tinnitus and a very mild hearing loss was considered to be the likely cause.
 
    Sometime later, my tinnitus was considerably worse and so was my hearing loss which led to my first hearing aid (only one at first because our insurance would only pay for one every two years).  That helped, but in less than two years I needed the other hearing aid and we paid for it out of pocket.  At that point my audiologist wondered why a guy who was barely over forty had hearing loss that looked like he was sixty or seventy.  To answer that question he referred me to an ear, nose and throat specialist, who saw me, had an MRI taken of my head and then referred me to another specialist who was even more specialized (a special, specialist, I guess) and who only did ears or something.  I want to be clear, I never really liked to listen to loud music, I was in the Army Reserve but I was never in the artillery or subjected to a huge amount of noise other than our annual rifle qualification.  I never worked in a factory where I was around loud noises (on a regular basis) and although I mowed the lawn and used power tools, I don’t think that I used them any more than most people.  Ultimately, the special specialist’s determination was basically, “We just don’t know.” And that’s where I am today.  I wear two hearing aids but each year I can notice my hearing getting worse than the year before and there is nothing that I can do about it.
 
    Two weeks ago, along with hundreds of my colleagues, I attended our Annual Conference, a gathering of clergy and laity representatives from United Methodist churches from across East Ohio.  In settings like that, in a huge auditorium with lots of background noise, my hearing is practically useless.  Hearing aids amplify every noise and, unlike normal hearing, you are utterly unable to distinguish one conversation from another so what I hear is often just a muddle.  I could generally hear the speakers who were wearing, or who were in front of, microphones but when questions came from the floor or from someone on stage without a microphone, forget it.  I also miss many things that are said when a speaker lowers their voice for effect.  Often I can figure out parts of what was said, but not always and as a result I generally miss jokes and funny stories because I can’t hear the punch-line even if I could hear the joke.
 
    Last week, we picked up our son from a week at church camp.  He had spent a week playing in a small band and the band was playing the music for a group of teens who had written their own musical.  Because the acoustics in the barn where the production was held were like many large auditoriums, even though there were two stage microphones, I understood almost none of the dialog nor any of the words of the songs.  I was glad that my son played in the band and it wasn’t his hard work that I missed out on.
 
    In the next few weeks I will see my audiologist for my annual checkup.  I will get another hearing test and he will send the results to the special specialist just in case there is anything that can be done (but there never is), and I will have him turn up the volume on my hearing aids…  again.  I know that soon my hearing aids won’t be able to get any louder and I will have to buy new, bigger and uglier hearing aids but it can’t be helped.  I work in a job where hearing other people is pretty important.  For now, with my hearing aids, things are not perfect.  I miss a lot but with the patience of my family and the people of my parish, I get along fine.  My experience with hearing loss does have one benefit I suppose.  My understanding, empathy and patience toward persons with hearing loss and all disabilities is growing and I see how much that those who are not disabled often just don’t get it.  I do worry about the future.  If I have the hearing of a sixty or seventy year old at forty six, then where will I be when I reach sixty or seventy?  I suspect that I may be having some serious conversations with my cousins about what it’s like to live in their world.
 
 

 

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