Another Big Change

We are moving from Brazil to the USA in just a couple of weeks. This is the reason I have not been updating regularly. We are in a whirlwind of change.

My hearing with the cochlear implant is still improving, to the point that I am feeling more like I hear and less like I am deaf. I did have another mapping done and, to be honest, I am not sure it was the best.

On the other hand. I left my remote control in the USA during my last trip and I can’t adjust anything. That may be part of the problem. Everything is just too loud right now.

My natural hearing is getting a little stronger as well, to the point that if I put on my hearing aid and you speak pretty close to my ear, I can understand. I need the cochlear implant to hear far away, however.

I will write another post soon to talk about our move and why. I got a job that has a pretty strong hearing requirement. That is worth a post in itself. Until then…

Bible Storying for the Deaf

Deaf with a capital D. That is, those who were born deaf and have committed to using non verbal means of communication, like sign language.

I only learned a little sign language at my church when I was a young teenager, and refreshed a bit in college. Both times it was out of a desire to communicate with Deaf friends. Though I have been deaf on 4 distinct occasions in my life, I have always relied on speech for communication. (I was suddenly and unexpectedly deafened when I was 11, again at 21, another time at 32, and yet again at 36.)

That being said, I am a missionary and a Bible storyer. This video, from one of my latest facebook groups, is just beautiful to me. I hope it encourages someone who stops by my blog here.

 

Ran into a Deaf Friend

Yesterday as my wife and son and I were walking down Rio Branco Avenue, here in Juiz de Fora, I saw a young girl smile at me. I kept thinking, where do I know her, then I remembered. I called my wife to stop walking and we all turned around. The girl and her family turned around too.

We had met several years back. She was unable to hear much and her speech was extremely limited with a strong deaf accent. She was about 8 years old at the time.

Now, she is fourteen. She looked at me and saw my cochlear implant. Then I saw hers. She smiled and spoke in a very clear perfect sounding Portuguese. Her hearing seem effortless. (My hearing comes with great concentration, frustration and repetition). After our families caught up, I asked her how long she had been wearing a CI. Turns out it’s been 2 years since her activation.

She said the first year was a big struggle, but now she hears very well and dominates nearly every social situation. Wow. I am so pleased for her.

I am still in the first year. I’ve made amazing advances, but I also have a long way to go. I do hope to be hearing as well as she is soon.

Both of us have MED-EL Opus 2 processors and were operated by the same doctor. Neat.

Listen and Read

Listen and Read is a website intended for elementary school children learning to read. It features a picture and a text, with a button you can press to hear the text read aloud.

This is exactly the kind of resource I was looking for a few months ago to train my listening skills. I have graduated beyond this to not needing the words right in front of me for comprehension, but I wanted to put this up for others who might need training resources while learning to hear again.

Related Posts:

Another Step towards Speech Recognition 

A Social Network for Cochlear Implant Users

20 out of 30 correct hearing responses

I am on program three of map five.

In yesterday’s visit to the audiologist, I was given a list of 30 sentences. I read them aloud one by one, then returned the list. My audiologist covered her face with a screen, so I couldn’t read her lips. She then randomly read the sentences. I was able to hear and repeat correctly 20 sentences on the first try.

Of the 10 that I couldn’t do immediately, I needed one word repeated one time for three of the sentences. I needed the sentence repeated one time for 5 sentences. I needed two sentences repeated more than once.

Recovery is ever so slow, but perfectly consistent.

More Phone Calls

In the last couple of weeks I’ve made more phone calls using skype and either a usb phone receiver or headphones and a microphone. I’ve been able to have several conversations. I struggle and do not understand without a good bit of repeating, but I do it.

It makes me happy to talk on the phone.

A Social Network for Cochlear Implant Users

Med-El has just launched a great site that is a kind of Facebook for people who use or work with cochlear implants and their interested friends and family. It’s called HearPeers.

 I just set up my own profile.

 

Here is a video about the site.

Three Weeks of Improvement

This is late being posted, but I had two hearing tests three weeks apart. The audiograms below are of my right ear.

May 21, 2012

June 11, 2012

As you can see there was a nice jump there in that three week period. My hope and expectation is that it will continue to improve until it gets into that purple area. That would be good enough to, with a hearing aid, hear well enough to function normally.

Bonus:Cochlear Implant Hearing Test

Getting better!

I get a phone call, right?

Happy Father’s Day

Yesterday was Father’s day for many countries. Here in Brazil, Father’s day is in mid August. My wife, Loaise, help me set up our notebook computer with some borrowed headphones and I used Skype to call my dad on Father’s day.

Surround Sound!

I set both my CI processor and my hearing aid on telecoil. For me, hearing with the implant is much louder, but with the hearing aid it is a little clearer. Both are changing each week, each one getting better. I am back to the point of experiencing bi-lateral hearing! This is new for me, as I had always been dependent on one ear to hear.

Yes, I can hear you.

My mother answered the phone and my cochlear implant hearing was dominating. I understood her, but did not know who it was until she said it was mom. After a moment, I took off my processor and used just the hearing aid. I was able to understand her without too much repeating.

This is the first phone call I have made since January. Major milestone. I know it was headphones and Skype, and not a traditional phone, but what an experience to talk to someone over the phone again.

My dad got on the phone and I had trouble understanding him with my hearing aid, so I switched my CI processor on again. It was too loud. I asked him to count to 10 while I adjusted the volume on the headphone. Once I got it to a good level, I realized I could understand him better with the CI than the HA.

Alas, the battery on my cochlear implant went dead, so I had to make do with the hearing aid again. My sister was over for a Father’s day visit, so I was able to talk to her for a moment as well, also just with the hearing aid.

Observations

• I understood my mother and my sister better with the hearing aid, but I understood my father better with the implant.
• Because of the perceived volume difference, my cochlear implant dominates when I use both my CI and HA.
• As my hearing gets stronger in my aided ear, and as I progress in the rehab with my implant, I think these levels will get closer together and my ears will work together a bit more.
• I wish I had some headphones with independent volume adjustment for each side.
• I almost gave up before I tried to call. I did not know if I would be able to hear enough and I was scared to try. My wife insisted and I am glad she did.

Progress

In the past two weeks, even with my hearing impairment, I have been able to:

1. Participate in three small-group Bible studies
2. Lead a workshop on Bible storying.
3. Perform a wedding.
4. Moderate a church business meeting.
5. Preach in pulpit supply for a local pastor (four times).
6. Watch a movie at the movie theater and understand it.
7. Take my son and his friend out to eat for my wife to get some down time.
8. Identify several of the songs playing on the car radio.
9. Listen to 5 chapters of the book of John dramatized and understand all of it.
10. Attend the Med-El cochlear implant conference and participate fully.

Cochlear implant hearing is not as simple as on and off.

Every day I hear something a little clearer. I feel myself sliding into comprehension. I can catch things here and there, that I couldn’t before. The background noises have more life.

That said. It is so slow coming. I’ve been wearing a cochlear implant since November of last year. This past month has been the best, yet, with respect to understanding and appreciating things. I just can’t pick a day and say, “that’s when I started hearing well again.” That day hasn’t come yet, but I don’t think it ever will. One day, I will just notice I am hearing and functioning. It won’t be a milestone, it will just be another day.

Strange.

In other news, my deafened ear hearing is now stronger than it was when I was redeafened in April. Still improving daily.

God works in amazing and strange ways. He does wonderful things.

Installed the Car Stereo

Last year, my wife gave me a car stereo for Father's day. After a few months, there was a short in the wire and it burnt a fuse. When I went deaf, I just didn't worry about fixing it anymore.

My hearing has improved a great deal since my last mapping and since losing my hearing again in April. It has improved so much that I realized it was time to get the stereo installed. It doesn't play CDs, but it does play mp3s from a memory card.

• I can hear and enjoy some songs that I know well.
• I can follow some songs, but not really appreciate them.
• I can't understand some songs at all, especially new ones.
• I can hear and understand speaking if it is loud and the environment is quiet. (If the car is parked in a quiet place, but not if I am driving.)
• All of this makes me very happy.

New Mapping

Yesterday I went in for a new mapping on my cochlear implant. I did not get a copy of my hearing tests, so I will post them later.

The new mapping seemed very loud yesterday. I did not notice any immediate improvement in clarity or comprehension of sound right away. I did notice, however, that when I got home I could hear the television. I couldn’t understand it, but I could certainly hear it. My wife, Loaise, was watching American Idol. I could hear when people were talking or singing and when the audience was clapping.

Today, I am noticing more sound input from the world around me. Stuff that was just too quiet for me to pick up is coming it. I am looking forward to letting my brain register and categorize these sounds, so that they will become clear and meaningful.

Happy.

Deafened Ear Update

In January I went suddenly deaf in my only functioning ear. My cochlear implant had just been activated in my other ear. Since I have always been deaf on that side, the implant has taken time to become useful. I am nearly to the point of understanding speech, but not yet. So, these past 4 months have been deaf months for me.

Over the last several weeks, my hearing had been  improving in my deafened ear to the point where I could listen to something played loudly over headphones and understand well. But, two weeks ago, I went deaf again. Again, suddenly.

Now, I can hear whistling again in the deafened ear. It looks like it is going to try to come back again. I really, really hope it does, successfully.

My next cochlear implant mapping is next week, and I will post an update on this blog.

I can hear! No I can't! Wait, maybe I can.

My computer hit the floor a few weeks ago and we have been without since. I am waiting for it to be repaired. In the meantime life has been busy and I missed posting several good things. Now I need to post a compilation.

Clarity

I have reached the point where I can direct-connect my cochlear implant to my cell phone and listen to mp3 audio bible chapters and understand them. I can listen for 20 minutes and miss only a sentence or two here or there.

I had reached the point where I could talk on the phone for a sentence or two with my hearing aid in my deafened ear. I spoke to my sister-in-law in portuguese for a moment.

Bimodal Hearing

For the first time in my life, I found my self looking left to find a sound I heard. I never knew what it was like to hear direction, but my head instinctively turned one way or the other.

The sound qualities of my cochlear implant hearing , which is still in training, and my natural hearing, which is still in recovery, are different. They occasionaly worked together to help me understand more.

Nearly Declared not Deaf but Hard of Hearing

I had decided that in May I would start calling myself hard of hearing again, instead of deaf. But, on Saturday, I was playing soccer and in a tumble hit my head on another player´s knee. I hit right behind my right ear. Two days later, on the last day of April, I woke up with no sound in my right ear. I lost my hearing again.

Cochlear Implant Only

I am relying only on my cochlear implant now. I hear well enough to understand the person with whom I am speaking directly. I can identify some songs. I can hear environment noises. Most sound is very soft, but squeaks and bumps are very loud.

My next mapping is in 2 weeks.  I am taking medicine again to stimulate the return of my hearing in my right ear.

Progressing is Cyclical

Cochlear Implant

Every time I get to a new mapping or program, things seem loud.  Certain sounds are too loud and disproportionate. Over time they get softer. Each time I ramp up to too loud and let it settle back down, I realize that I am picking up some new softer sounds and hearing some things a little more clearly. This cycle takes two to three weeks, each time.

I am on the third program of my fourth mapping, so I have one more cycle before my next mapping. This cycle brought the first signs of speech comprehension. I am getting a word here and there from voices I hear, but don't see (by lip reading). This is happening more and more. The voices are scratchy, but identifyable. This is an exciting time.

Residual Hearing

In my non-implanted ear, I can now hear clearly enough to listen to a chapter of the Bible playing on the speaker of my cellphone, when it is pressed tightly up against my ear. I can also hear songs, but the melodies aren't quite there yet. The volume has to be loud enough that the sound pressure is uncomfortable, but my hearing is improving. It still sounds like I have a disposable plastic cup over my ear, though.

My hope is that this continues to the point that with my hearing aid, I can hear the people in the room with me. My hearing recovery seems to be on about the same schedule as last time I went deaf. It is hard to compare, as I am also working on gaining hearing via CI in the other ear. Once my hearing gets stronger and eventually gets to the point where it will no longer improve, I will need to get a new audiogram and reprogram my hearing aid, or get a new one better fitted for my hearing.

Bi-Modal Hearing

I am starting to notice the sounds I hear with the CI and the HA blend together. My implanted hearing is getting clear enough and my residual hearing is getting strong enough that they can start to work together. I am interested to see how this will be as time passes.

Program 3, Map 4

Cochlear Implant (Left Ear)

My mappings are progressive. I get one every so often and then I spend a few weeks on each program 1-4 then get a new mapping. Yesterday was the day to switch to program three. I am hearing more, and more far-away things. I am also starting to finally pick up a word or two spoken by a person I am not looking at.

Today when I put gas in the car, I paid with my card. The attendant gave me the little recipt to sign and I was looking down at it when I heard clearly the words "Por favor." (please).

I am sure he was just saying "sign this please." This was the first time I picked up on a word or two that I was not trying to hear. It felt good. It was a little mechanical and donald duck, which made me smile. So, after nearly half a year, I finally made it to donald duck. Hopefully I'll be hearing lots of talking ducks in the coming weeks.

Right Ear (Recently deafened, but returning slowly)

My hearing is faint and even with the hearing aid the cochlear implant hearing overpowers it. This was the case before I went deaf too. When my implant is off, and my hearing aid turned on full. I can understand some words spoken loudly to my ear. There is still some shakiness to the sound. To me my voice sounds just like Barack Obama, deep and full, no matter what I do. My wife said it sounds more like Mike Tyson when I try to hear the difference by speaking higher.

Loud Sounds Now Bearable.

My sensitivity to certain sounds has diminished a bit. Now those loud sounds are still loud, but not quite as loud and not nearly as irritating. For two days I had a terrible headache, probably related to hearing those sounds. My headache is gone and it seems my hearing clarity improved just a little bit. I still struggle to understand more than a word here or there, but I can tell the difference.

I also need to go back to wearing my hearing aid every other day. There is just too much stimulation and change going on for me to adjust daily. My aided hearing is improving as well, but slowly.

Keep me in your prayers. God bless.

Not Quite Right, Loud Sound

In the last couple of days a certain few sounds have become disproportionately loud to me. The clinking sound of dishes hitting together as I wash them is as loud as anything I hear. Dropping a coin on the ground too. Squeaky door creaks sound like trees breaking in half.

My next mapping isnt until late May, so I hope it doesn't get worse. In the mean time, speech recognition continues to improve. Still a ways to go.

Spent the day without CI and HA

Sunday, I took my family to a barbecue with the families of my wife’s company and others with whom she works. I’d put my hearing aid and cochlear implant batteries in my son’s backpack. When when we were just arriving, I heard the warning that the CI battery was out of charge. When I went to get my son’s backpack, I saw that we had taken the other one with us. Oops.

Well, I spent the day not wearing either my hearing aid or implant processor. I just read lips and that was that. I did such a good job of it, that some people didn’t know I was deaf until the end of the day, when I was talking about it. Others, thought my hearing had come back and I didn’t need to use the implant.

It feels good to know that even when I am limited, I don’t have to stay sitting around by my self.

As far as the recovery. Still making slow progress.

Breakthroughs: I think I figured it out.

I call it a breakthrough in my hearing anytime I notice something that I had not noticed before. They happen infrequently, but consistently. I am almost always less enthusiastic the day after a breakthrough. I thought it was just the natural low after a high, or unrealistic expectations, but not any more.

When I have a breakthrough with my cochlear implant hearing, it is because something changed. I always notice the benefits first, and the drawbacks the next day. If a certain sound becomes clearer, another sound becomes annoying to me. It’s a dance.

I’ve had a few breakthroughs recently. I had not written about them, but I need to, so I will now.

• I can listen to an mp3 of someone talking, and depending on the voice, understand 2/3 of it. That is up from a word here or a word there.
• If I am talking face to face with someone, I get it all. As long as I am looking at the person’s face.
• I can identify from the other room, which song from my son’s Thomas & Friends DVD is playing. (The song doesn’t sound right, or even good, but I know which one it is.)
• I can hear from a much greater distance than before. Part of my problem identifying sounds has been not considering things out of sight.
• My non-implanted ear’s hearing is returning to the point that I can understand some sentences when my eyes are closed.
• With some hearing in each ear, I can now identify who is speaking when in a crowded room… sometimes.
• I can understand a good bit of the sermon at church, now, and can follow the train of thought. (I can not look away to read the bible verses, though. I get lost.)

In all, things continue to improve and I am grateful.

Less Repeating Needed.

I had not realized how much I rely on my cochlear implant until I went to get a haircut. I explained to the barber that I am deaf and then answered a few of his questions. I then took off my CI and hearing aid. He said something. I completely missed it. I asked him to repeat. I missed it again. It took four tries.

Though, I still can’t listen to an audio recording and understand it all (at any volume), I am catching lots of words from peoples speech. I’ve found myself looking away briefly and looking back at their lips and not being totally lost.

Speech comprehension is coming! It’s close.

Clearer

Clearer and softer. That is how I would describe the sound of things in the cochlear implant. Making progress. Today I feel much better about it.

Oh, and my young friend who had her activation yesterday went home hearing her family say her name for the first time in her life. She is learning words and repeating what people are saying. Useable hearing from day one after being deaf her whole life. AWESOME!

4th Mapping

Cochlear Implant Mapping and Progress

Yesterday, I had my fourth mapping on my cochlear implant. I should have written about it yesterday. I seem to be more excited about the new sounds when I am leaving the audiologist than I am the next day. Today, I am already starting to feel down.

The volume has gone up. That is good. I don’t think it was enough, but the audiologist disagreed. I wish she had increased the power more.

I am closer to understanding speech. I am getting sentences instead of words in familiar speech recordings. Sounds are a little clearer and cleaner.

I have four programs. I will use them progressively. Each one will be used for approximately 21 days before going to the next. My next mapping will be in 80 to 90 days.

Natural Hearing Improvement and Progress

My other ear’s hearing seems to be returning. It is still not as strong or as clear as my implanted ear, but the progress is faster. I hope to be back to holding conversations and listening to podcasts in a month’s time.

A Prayerful Encouragement for Today

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as Jesus did, this sinful world as it is, not as I would have it;
Trusting that God will make all things right as I surrender to His Will;
That I may be reasonably happy in this life and
supremely happy with Him forever in the next.
God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Amen.

Hearing Progress

My hearing is improving steadily. I wish I could pinpoint a time when I will be hearing well again, functioning normally, using the telephone, and listening to music. My best guess is April.

Quick Cochlear Implant Update

My comprehension of sound continues to get better with my CI. My next mapping is scheduled for Tuesday. I expect that the volume will be increased a bit and the clarity to improve. It will be a three month mapping, so I hope it is a good one.

Two Words, One for Each Ear

My right ear hearing made a big jump on Thursday. So much so, that I was hearing peoples voices with just my hearing aid. It’s all weird sounding and hard to make out, but I did an experiment.

I closed my eyes and asked Loaise, my wife, to say one name or another. I turned off my implant and listened and responded. I got it right!

I then turned off my hearing aid and my implant on. Eyes still closed, I listened and responded. I got that one right too!

So, I heard and understood a word with only my cochlear implant, and with only my hearing aid.

By the way, this was the first word I heard since going deaf on January 20th. I am ahead of schedule on getting my hearing back, when compared to my deafness in 2008.

Change Comes Slowly, But It Comes.

Some days I start to wonder if I am making progress at all. I listen and realize that without lip-reading or subtitles, I just can’t follow speech. I think, “Shouldn’t I be getting more of this by now?”

Then I realize, that it wasn’t long ago that I was happy be able to understand a word as I was lip-reading. It wasn’t long ago that I was surprised to hear a word I was reading on the subtitles.

The change over time in the sound of a cochlear implant is slow and almost impossible to notice. But every once in a while, you perceive something that you had not noticed before.

• I realized that I am asking people to repeat themselves less.
• I noticed that I am forgetting that I am deaf when I am alone, because background noises are almost normal now.
• I realized that my comprehension struggles now are becoming more related to volume than to clarity.

These are things you can’t notice from one moment to the next, but over time. The change comes slowly, but it comes.

It’s Like Character

As we strive to build our character, get rid of bad habits, develop new good ones, become more patient, speak more graciously, we don’t really see the change from one day to the next, but over time.

I can look back over my life in the last year and see clearly if I have become more like the person God intends for me to be, or if I have fallen back in to being just a product of my environment.

Granted, building character is a bit more active than waiting for clarity of hearing, but is a process that can not be rushed in any real sense. Well, with one major exception. The Bible says “If anyone is in Christ, he is a new creation, old things have passed away, all things have become new.”

The history of the world is full of stories of the rottenest scoundrels repenting and turning to Jesus. Instantly, they were changed.

Jesus cured the deaf he encountered instantly, too.

God is good.

The Little Black Wire

The little black wire that connects my speech processor to the magnet which sends signals to my cochlear implant has a small tear in its housing. I was warned by the audiologist that many CI wearers are damaging their cables.

The MED-EL kit contains a back-up wire and another one which is much longer (I think). I am going to change out my wire so as not to damage this one any more. Maybe I can find someone who works with electronics who has some kind of glue or something that can fill in the gap.

Anyone else have this problem?

R$ 45,552.81

I got this in the mail today. Glad it’s not a bill. This is just one more reason to be thankful to God in all things. He provides. When I moved to Brazil a decade ago as a missionary, I knew it would be with a humble life-style. I also knew that one day I might need this expensive surgery. In another profession, or even as a pastor in the USA, I probably would have putting aside a little each year for when the time came.

The letter simply asks for an evaluation of the hospital. At the bottom it says:

Total amount paid by SUS for your treatment: R$ 45,552.81

My 100 Day Progress Report

On September 27th 2011, I had a cochlear implant surgery in Juiz de Fora, Brazil. I was implanted with a MED-EL Sonata TI by Dr Evandro Ribeiro de Oliveira. My surgery was paid for through the Brazilian national health system.

I was activated on November 4th 2011. Readers of this blog know that the immediate results, while exciting, were a bit of a let down. For some people, hearing with comprehension is instantaneous. I was not one of those people.

Tomorrow marks 100 days since I was activated.

I’ve hit a few meaningful milestones since that time.

My entire first mapping was a disappointment to me. I was able to hear nothing but a cricket chirping sound for very loud impact sounds, and I heard a humming sound, once. That’s all I got in the first 30 days.

My second mapping was exciting. The power was turned up and I was getting all kinds of sound information. Noise. Mostly the sound of metal banging against metal or coaches whistles. Everything had the same sound. It was also too loud, all the time. However, it was sound. The second 30 days was just meaningless sound.

For my third mapping I tried to be proactive. The clinic does not do a good job of describing the rehab process, what to expect or how implants work. With this frustration, I studied up on the internet and tried to take the lead. This probably led to a third not-as-good-as-it-should-be mapping. In any case, it is the map I have now and it is a 60 day mapping, the next will be for 90 days, I think.

The major development is that I lost my natural hearing in my right ear 21 days ago. I went deaf again. This forced me to rely on whatever I could get from my implant. In these past weeks my comprehension has improved greatly.

• I hear at about 60 decibels.  ‘
• I am starting to understand speech. Not clearly, but consistently.
• I can sometimes understand my son in the dark.
• I can understand parts of familiar recordings.
• My sound environment is getting familiar.
• I can tell if someone opens a door or closes it.
• I can hear if water is running.
• I can hear myself typing, sometimes.
• I can hear footsteps.
• I know when someone is talking, sometimes who.
• I can hear a word here and there on the TV.
• Fewer things sound like banging metal and whistles, now.
• Many things are starting to sound “right”
• I function much better with the implant on, than with it off.

So, 100 days in, I am happy I have the implant. I am not where I want to be with my hearing. Improvement is consistent, and promising. I expect that by 130 days, I will be understanding speech.

(I am filing this report a day early, as I won’t be online tomorrow)

I *Heard* That!

Lipstick

First, an analogy. If the sound of speech were received as handwritten notes, the sound of the speech I hear with the cochlear implant is like a note written in lipstick, rather than a pen. It’s thick, imprecise, and doesn’t fit the style guide of normal speech. Still, you can sometimes get bits of the message.

Conversations

I still rely on lip-reading, but I am finding myself feeling like I need my Cochlear Implant to understand. There is a lot of meaningful information coming in now, and some words… real words, in conversations.

The volume is still way to low for most things, though. Looking forward to getting that bumped up in the next mapping.

Recordings

I plugged the CI directly into my cellphone last night to practice listening. I put on Matthew Chapter 2. “Wha Bla Bla Pa Bla Wha Bla The Voice of one crying in the Wilderness, ‘Prepare th’ Wha Bla Bla Pa Bla Wha Bla”

What was that! I *heard* that! I did hear that!

I was able to get a word or two here and there as I listened. Still not enough for comprehension, but getting there. It is change I notice though. Good change.

Without My Cochlear Implant

When I take my CI off, I can now perceive some sound in my aided ear. If I clap my hands next to my ear, I hear it, faintly. When I scream, I hear myself, faintly. I think my hearing is coming back, a little at a time.

Next audiogram in a month.

Getting Closer to Understanding My Own Voice

I still don’t understand speech. If I am watching subtitles, I can kind of follow along. When I am lip-reading, the sound helps a little, sometimes. If someone is talking but I can’t see their face, there is no chance I will understand.

Last night, however, in the dark, while I was telling my son a bed time story, I could hear my voice and it sounded kind of funny. It was a voice though.

I am surprised, actually, at how these past couple of weeks have been sounding. When I was eleven years old and had gone suddenly deaf, I heard sounds similar to these when my hearing started coming back.

First, my voice was the sound of multiple voices that didn’t really come across very well. That was happening to me last week.

Then, there was a funny sounding voice that reminded me of a man inhaling helium. When I was eleven, I laughed at the sound of my own voice, probably to the point of being annoying to my family. That was the voice I heard my story in last night.

I wonder why it is this way?

The cochlear implant is still much different sounding than that natural hearing, much more garbled and noisy, but there is something about trying to hear speech that brings back memories.

I look forward to hearing again soon.

• Cochlear implant active for 95 days, now.
• Deaf again for 18 days, now.

I *Think* I Hear

Right Ear

I wear my hearing aid in my deafened ear for a few hours each day. When I get alone somewhere, I try screaming as loud as I can and whistling as well. With my cochlear implant off, I concentrate on what I might be registering with my aided ear.

I think I am picking up a very faint sound with the whistling. With my voice, I am not sure if it is me hearing something or just imagining that I am. I should have another hearing test next week. I’ll post the result here.

 

Left Ear

With the cochlear implant, I am noticing changes in the way things sound. I don’t notice them daily, but weekly. Some things are starting to sound “right.” A lot of the abstract sounds are taking their places in the sound environment and I can, at least, find the source of sounds more easily.

My next mapping will be at the end of February, so my volume will be stuck at only hearing things over 60db for a while. The clarity should continue to improve and this will be greatly beneficial.

 

Spiritual Ear

I want to hear what God the LORD says, because he promises peace to his people, to his godly ones. But they must not go back to their stupidity.  Indeed, his salvation is near those who fear him, and his glory will remain in our land.  --Psalm 85:8-9

The other night, I was praying. My prayer was basically this, “Lord, I don’t really care if I never hear another word in this world. I want to hear, but the one I really want to hear is you. Give me strong spiritual ears, so that I can hear your voice and do your will, and live for you.”

Learning How This Thing Works

I had another appointment at the audiologist yesterday. We did an audiogram of settings 3 and 4 on my processor. I am going from memory, but this is about how they look.

X = program 3 and O = program 4

That is a measure of volume. This, evidently changes with mappings, and should improve. Clarity, on the other hand is all in my brain. That comes from me. So I am just waiting for it to get clear.

Yesterday, while watching a one-hour program on TV (Person of Interest), I caught 3 words. Each time, out of the noise, bang! A word I could hear and understand. Hopefully this will happen more and more frequently.

…

Oh, and by the way, to make a cool audiogram like this for free, go to http://www.hearingaidknow.com/audiogram-creator/

My Cochlear Implant Sounds Like…

I am still not very far along in my sound recognition with the cochlear implant. I have been relying on it for a little over a week as my only source of hearing. Everyday, I notice a little improvement.

For now, the sounds are still like noise, but each noise is starting to have its owner. I am starting to recognize the source of each noise, which is very helpful.

This is what it sounds like right now

• My own voice is starting to appear to me, but it sounds like 4 or 5 voices talking together. To me, I am my own choir.
• The environment sounds like an orchestra before a performance, with each instrument being tuned and playing separately from the others, all of this happening at the same time, in a school cafeteria at lunch time.
• Voices sound like they are being accompanied by quartets of tubas and cellos.
• Every once in a while, I hear a loud sound that is just like the sound of shooting one of the wings off of a blue bird on level three of Phoenix for the Atari 2600.
• Everything is jumbled, inside out, upside down, multiplied, echoed, and then put through a badly tuned radio with a short on the volume knob, causing it to get louder and softer without warning.

My Tinnitus Sounds Like…

My recently deafened ear rings constantly, but it is not always the same sound. Here are some things that it sounds like.

• The computers in a 1970s science fiction movie.
• Jungle sounds, lots of monkeys and birds.
• A heavy steady rain.
• Ross playing the keyboard on Friends.
• A dial-up modem.
• A jet getting ready for takeoff.
• A coffee-maker brewing coffee.
• Elevator music rhythms played on wooden drums.
• Someone playing only the 8th octave of the piano, or the only the 1st.

Next post: what my cochlear implant sounds like.

Anxious for Meaningful Sound

I’ve been deaf again for 6 days. My cochlear implant has provided me with lots of noise to listen to and a few indicators as to what is going on around me, like footsteps and impact sounds.

My hearing test showed that I could barely register a couple of frequencies at 120db. That was it. My doctor told me to wear my hearing aid for a few hours each day to stimulate my ear a little more. I was wearing it when I got home yesterday, and my son got so excited when he saw me.

“You’re wearing your hearing aid!” I read his lips. “That means you can hear me again!”

“No, not yet.” I replied “Just a little tiny bit with my cochlear implant.”

He gave me a hug and a kiss on the cheek. “I love you, daddy.”

What a special boy I have.

What I Can Hear, Now

I have been wearing a cochlear implant on my left ear for a little over two months. Up to this point I’d been bi-modal. That is two modes of hearing, a CI on one side and a hearing aid on the other. My hearing aid provided my primary hearing and I had been learning to hear with the implant as an auxiliary.

I knew that one day the CI would become my primary hearing. I did not think it would be so fast. Maybe this is just temporary. What ever the case, this changes my rehab strategy.

During the first month (and mapping), I couldn’t hear anything with it, except rain on the roof and a barking dog. Neither sounded anything close to normal and both were as quiet as a whisper. Everything was set low, due to my sensitivity to the stimulation.

During the second month (and mapping),  I could hear lots of noise, but nothing “real.” The blanging clanging whistling sounds enveloped everything. I could, on occasion and using a direct connection between the processor and cell phone, recognize a song and follow it. Words still escaped me.

Now, I have lost my hearing in my aided ear. I am dependent on my CI for all sound input. It is still mostly unclear garble with some recognizable sounds coming out.

Here is what I can identify. I will add an asterisk* to things that sound almost “right.”

• Knocking on wood or glass*
• Clapping hands*
• Pretty much any impact sound
• My son’s toy train
• Running water
• The toilet flushing
• That someone is talking
• Bird’s chirping (Though I am having lots of jungle-sound tinnitus, so I never know if it is real or imagined. Pretty sure the monkeys aren’t.)
• I can identify some songs
• I can follow some speech for short periods of time when the corresponding text is in front of me.

I get about 30% of my wife’s words right when I get her say a word in a category three times. For example, if I give her the category fruit, she might say, “Banana, banana, banana” I understand the word about 3 times in every ten exercises.

From Hard of Hearing to Deaf

When I had my cochlear implant surgery last year, it wasn’t a pressing need, but it was needed. My hearing, was good enough that I didn’t need the implant for communication, yet. But the progressive and repeating nature of my hearing loss, meant that one day I would need to rely on a cochlear implant.

The hearing loss has up until now, come in ten year intervals. I expected to be in my early forties when it happened again. The cochlear implant, by then would be functioning well and my quality of life would not diminish at the onset of my deafness.

As it happens I’ve lost my hearing again, and I am only in my third month of learning to hear with a cochlear implant. The CI now provides the only sounds I hear, other than tinnitus. I had been working my hearing rehab so that the cochlear implant would assist my hearing. Now it is my hearing.

I will have several observations here soon. But here are a few things going through my mind.

1. My hearing in my non-implanted ear will likely come back. It has before.
2. That hearing won’t be as strong as it was before.
3. Because of my reliance on my CI for sound information, things will probably happen a little faster.
4. Even though I can not understand speech and most things sound like noisy whistles and clanging cymbals, it is better than no sound input.
5. I will have to quit giving English lessons, at least for a while.
6. I will not have to quit training people to do participatory Bible studies or Bible storying, nor will I need to quit any other ministries of being a missionary.
7. I now have a good excuse to not talk on the phone.
8. CI Program 4 is definitely the best one I have. Forget 1 through 3.
9. I am having melodic tinnitus. I am hearing short random melodies, like the sound a cell phone makes to warn that the battery is low. Another one sounds like coffee brewing. (Maybe it’s my cochlea draining?)
10. I am glad to have this blog as a place to talk about all this.
11. I expect this current hardship to be temporary.

May good will and peace from God the Father and the Lord Jesus Christ be yours! – Steve

Learning to go Deaf

I subtitled this blog “Stephen’s experience learning to hear,” but I am learning so much more.

Today I went completely deaf again.

It’s my birthday today, my 36th.

Weird combination.

I will write up a good long post about it, but not now. I just wanted to post the news.

My Birthday

I turned 36 today. This year my birthday comes with new and significant challenges pushing my family and I into a deeper dependency upon God.

Missed Appointment

I arrived at my appointment with the audiologist today about 15 minutes early. As soon as I walked in she looked at me and said, “Your appointment was yesterday.”

I looked in my agenda, and I had Thursday, January 19th, 4:45 pm marked down. She looked in hers and had marked down Tuesday, January 17th, 4:45 pm. Oops.

How did that happen? Well, this was the first time that I pulled out my agenda and wrote down the appointment right there, instead of letting her write it down on an appointment card.

We miscommunicated.

Oh well. We rescheduled for Tuesday, January 24th at 5:45 pm, and I got it on an appointment card. At least I have another week to decide on which program is best for me right now.

My Story

Newcomers to this blog may not know me and know about what kind of hearing I have now and have had before. This post is my story.

My Hearing Right Now

My hearing right now is good enough that, other than asking people to repeat more often than others, I function just like anyone else. I rely mostly on my hearing aid and I am learning to hear with the cochlear implant.

My Sudden Deafness Story

I wrote a lot about my last experience going deaf in another blog. I will post excerpts and links here.

Timeout

This morning I lost my hearing. I am completely deaf now. This happened to me 10 years ago. I was pastoring a small church in Texas and studying at East Texas Baptist University. If it follows the pattern, I will be deaf for a few months and my hearing will return. If it doesn't well, only God knows…

Quiet Time

Today I had a CT scan done. I'll get the results in two days. Our best guess is that the cause of my hearing loss is Enlarged Vestibular Aqueduct Syndrome. I have experienced hearing loss in the past, twice, 10 years ago and 20 years ago. Both times, my hearing returned after a long delay. Hopefully this will happen again…

Do you know how to whistle?

I know it's been a while since I've written. Honestly, there hasn't been news to write about. I spent 2 weeks in bed after suffering from sudden onset hearing loss. I spent the next two weeks doing little more than that… Today I was playing with Nilson and whistling to him. I heard myself. Not much, only one tone, but I heard it. It made me smile and laugh. Actually, it was only 10 minutes ago that this happened, so you can see that I am excited…

Hearing Test

Today I am going to have my 3rd hearing test since I went deaf. The first test showed zero response to any frequency. The second test two weeks later showed zero response to all frequencies, except one, which I could hear vaguely at 90 db. I expect today I will be hearing a number of frequencies…

A Quiet Victory

My hearing test results showed that I have recovered some hearing on all frequencies (sounds I heard were over 100 dB). I still don't have useable hearing, but this test shows that I am on the road to recovery. God's still working on me…

…

I am sure I have posted other things in other places, but this gives a little record for those who might be interested. Maybe it will be an encouragement to you. God bless.

Steve

Program Evaluations

In my last post I mentioned that I am trying out four programs this week to see which one we will build from going forward. Today I will post a little about programs 1 and 4.

Program 1 is a big step back with respect to volume. Nothing is loud enough. However, every sounds good and everything I hear is identifiable. But it is much too soft.

• Advantage: Amazing clarity
• Disadvantage: So soft, it is unhelpful.

Program 4 is loud, just like my previous settings. Still too loud but the balance is better. It is not terribly annoying like the previous settings. The volume seems to be higher than what I hear with my aided ear. Unfortunately, it is mostly whistle sounds.

• Advantage: Volume. I can hear things far away and things that are too quiet to normally hear.
• Disadvantage: It is mostly noise divorced from meaning. With good volume the clarity goes away.

Programs 2 and 3 are adjustments somewhere in the middle. I will try these two out for a couple of days and post a report here.

Four Programs

In my visit to the audiologist yesterday, I had some difficulty finding a good mapping. I related the fact that the last mapping was really too loud for comfort and so we took a step back. We adjusted the levels, and every time we created a map, it had an advantage and a major disadvantage.

So, what we decided to do was to insert four different programs. I will use each one for a day or so, and next week, we will decide which of the four is the best choice. From there we will build a progressive mapping plan.

Third Mapping Today

Today, I will have my third mapping. I am excited about this. At the very least, we will adjust my processor to comfortable levels. As I mentioned before, I was so excited to be able to hear something on my second mapping, that I allowed the levels to be set a little too high.

I will try to update later today with some results.

Pressure

The post title does not refer to pressure in my ears. I have felt that from time to time. For that the doctor prescribes Betaserc. No, the pressure from the title is two-fold.

I really want my hearing to improve quickly. The process is steady, but always feels slow. This month, I’ve been hearing a lot of noise. Too much, actually. I think when I set my maximum loudness comfort level, I went too far. I went from no hearing to a lot of hearing and it felt so good, that I may not have accurately set the levels. Everything is too loud and too noisy.

I’ve had to turn the CI off from time to time to give my hearing and my head a rest. I get frustrated and feel like I am not contributing enough to my hearing rehab and turn it on again. Pressure. Pressure to hear, to succeed.

Well, today I had a setback. I put on an audio book and hooked up my CI to listen to it and follow along with the text. I couldn’t. I even couldn’t follow a sentence to the end. What was wrong? Everything was just noisy. No clarity.

Pressure. That was the problem. We had some meat in the pressure cooker and it was steaming and making all kinds of noise. I didn’t recognize the sound with the implant. It’s one of those higher pitched noises that drowns everything else out.

I’ll try again at bedtime… no pressure.