I haven't taught joy school since just before my surgery in December. If you remember from that time, it was not pleasant. The lovely moms I work with have stepped in for me and pulled my share of the load while I've been recovering and rehabbing. I went back today and we had a GREAT morning. Of the four kids that were there, I heard the girls well and I heard one of the boys well. But the other boy.........poor kid had to repeat himself at least 8 times every time he said something. When I taught before, I would look to my daughter to help me interpret the other kids. I don't want to do that again. Ever. Though I want her to have empathy and patience and all the good characteristics, I don't want her to feel responsible for me. So this little boy was incredibly patient but I just couldn't understand most of what he said. Hopefully that will get better!
I've noticed after my last map that I'm hearing my son better. He also would have to repeat himself a lot or show me or give me a sign for me to understand him. But now it seems that at least half the time I can understand him on the first try. Granted, he speaks like a two year old, lots of gibberish. So I don't expect to understand that. But I sure love hearing his requests for water or snacks or play time or story time.
My daughter's voice is sounding really good to me. Still not completely human. I don't know if voices will ever sound totally human again. She speaks very clearly and very attentively. For the most part we are having grand conversations :)
My kids are my motivation to keep plugging away at rehab. I'm so very grateful that our communication is improving. So grateful.
Wednesday, February 29, 2012
Monday, February 27, 2012
The Sound Booth
Today was my 4th mapping. It's been almost two months since activation. Anne (the Audi) wanted to put me in the sound booth and I immediately felt the panic rising. I hate being tested. Those awful feelings of incompetency accompany sound booth testing. But I agreed to it. Sigh.
I do this back and forth thing in my head. I am hearing better! Am I hearing better, cuz I'm just not sure? Yay, I"m making progress. Oh man, I can't understand a thing. Back and forth. Back and forth! And the sound booth would give us the scientific data. Is the implant helping?
Well guess what. It is! Proven results! Remember, these tests are without ANY lipreading. With just my hearing aid, I understood 1% of recorded sentences spoken at conversation level. With just the CI, I understood almost 50% of recorded sentences. With both the CI and hearing aid together, I understood almost 60% of recorded sentences. Anne also tested me with her voice. I got about 65% right with her voice.
Those results are GREAT!! Happy day for me! Now......if I could do sentence recognition that well in noise....that would be incredible. Long ways to go. But look how far I have come!!
And I think the new map is a good one. While driving on the freeway, I could hear my daughter behind me scribbling with a pencil on paper. :)
I do this back and forth thing in my head. I am hearing better! Am I hearing better, cuz I'm just not sure? Yay, I"m making progress. Oh man, I can't understand a thing. Back and forth. Back and forth! And the sound booth would give us the scientific data. Is the implant helping?
Well guess what. It is! Proven results! Remember, these tests are without ANY lipreading. With just my hearing aid, I understood 1% of recorded sentences spoken at conversation level. With just the CI, I understood almost 50% of recorded sentences. With both the CI and hearing aid together, I understood almost 60% of recorded sentences. Anne also tested me with her voice. I got about 65% right with her voice.
Those results are GREAT!! Happy day for me! Now......if I could do sentence recognition that well in noise....that would be incredible. Long ways to go. But look how far I have come!!
And I think the new map is a good one. While driving on the freeway, I could hear my daughter behind me scribbling with a pencil on paper. :)
Friday, February 24, 2012
Backtracking....
You know how with some things in life you seem to take two steps forward and three steps back? That's how I am feeling today! I've backtracked with my rehab :( Don't know if it's because I missed rehab yesterday (I am not able to get it in on Thursday which is my long work day) or if it's just the natural progression/digression of things. But I am pretty much doing worse in all the categories (tones, vowels, consonants, environmental sounds and word recognition). However, I am still doing okay in sentence recognition. Patience. Patience. Patience. Patience. Patience. Patience. Maybe if I say it enough, mine will increase! (Em, you are way nice, I have a long ways to go with patience!)
Tuesday, February 21, 2012
Misinformation and Success
Getting on soapbox.
I just read some difficult things on an online cochlear implant community. There are just so many myths about implants. Rather than feeding a fire and commenting on this community site, I am putting my two cents here.
A CI is a computer. Inside your head. With a processor outside your head. It's designed to send sound directly into your cochlea, bypassing the damaged part of your ear. Therefore, hearing through an implant is not the same thing as hearing naturally. Of course the sounds are going to be awful compared to natural hearing. It's a computer. It's sounds are mechanical, high pitched and distorted. Those sounds are hard to listen to and adjust to. But.......amazingly, most people adjust.
However, some do not. There are so many factors to consider. Your support network. Your degree and length of hearing loss. Your own speech skills. Your listening practice. Your emotional stability. Your physiology. Your motivation. Tinnitus. Etc, etc.
If I only based my success on the first couple of weeks, I would have thrown my processor away. A CI is not an instant cure. It's not a cure. It's a device designed to help you function when without it, you wouldn't function. Some people feel it's a success when after 6 months they hear environmental sounds. Some people feel it's a success when after 6 months, they can hear environmental sounds and speech. Some can clearly understand speech on activation day. Regardless of individual success levels, it's a hard process and it's an emotional process. And it's a noisy, unnatural process!
But if you can hear more with a CI than without it, isn't it worth it?? And if the chances are that you will become more successful after going through rehabilitation, wouldn't you put your efforts into auditory therapy? And if you are going to go under the knife to get an implant, wouldn't you actually do the research first to find out what an implant actually is?
For those who are struggling with how their CI sounds, they likely need support and validation. They likely need suggestions on how to improve the listening experience. Not judgment. For those who get amazing results quickly, good for you! But please, acknowledge the struggle that you also went through. I learned something from a very good friend. During the struggle, you suffer. When the struggle has subsided and the success has taken reign, you are able to assimilate the suffering as "worth it." You are able to put it in the proper place in your emotional experience. And you become happy, grateful, thrilled for your CI. And loyal to it. However, in the depths of the suffering, it's very difficult to see the light. You feel lonely. You feel betrayed. You feel darkness. And you are negative. That's a very normal, very human process. It doesn't mean that the success stories around you are false or overly optimistic. It means they are further ahead in their journey. Let them be.
To those considering an implant, do your research. Know what you are getting yourselves into. And set up a support system to help you through it.
To the professionals who install and program implants, stop saying "everyone is different" and tell people what to expect! Try empathy. Really. Nothing to be afraid of. I'll even practice with you- "It's difficult to hear unnatural sounds all day, you are showing great courage." Or "Feel free to vent about all the hard parts of this process because it's normal to have hard parts and then when you are done venting, we are going to try a new map."
To those who are in the depths of the suffering, know it's going to be okay. Measure your success in small ways, not in "normal hearing." Patience will be your daily trial. Ask people to help you notice what you are doing well.
I love my CI. But that love has not come without it's share of blood and sweat and tears. If it never got better than what it is today, I will still be happy with it. Because today, my CI combined with my hearing aid and my hardworking brain and my lipreading skills and my assistive listening devices, I am functioning well. And that's more than what I was doing a couple of months ago.
Getting off soapbox now. As one of my new hearing loss friends says..... blessings to you :)
I just read some difficult things on an online cochlear implant community. There are just so many myths about implants. Rather than feeding a fire and commenting on this community site, I am putting my two cents here.
A CI is a computer. Inside your head. With a processor outside your head. It's designed to send sound directly into your cochlea, bypassing the damaged part of your ear. Therefore, hearing through an implant is not the same thing as hearing naturally. Of course the sounds are going to be awful compared to natural hearing. It's a computer. It's sounds are mechanical, high pitched and distorted. Those sounds are hard to listen to and adjust to. But.......amazingly, most people adjust.
However, some do not. There are so many factors to consider. Your support network. Your degree and length of hearing loss. Your own speech skills. Your listening practice. Your emotional stability. Your physiology. Your motivation. Tinnitus. Etc, etc.
If I only based my success on the first couple of weeks, I would have thrown my processor away. A CI is not an instant cure. It's not a cure. It's a device designed to help you function when without it, you wouldn't function. Some people feel it's a success when after 6 months they hear environmental sounds. Some people feel it's a success when after 6 months, they can hear environmental sounds and speech. Some can clearly understand speech on activation day. Regardless of individual success levels, it's a hard process and it's an emotional process. And it's a noisy, unnatural process!
But if you can hear more with a CI than without it, isn't it worth it?? And if the chances are that you will become more successful after going through rehabilitation, wouldn't you put your efforts into auditory therapy? And if you are going to go under the knife to get an implant, wouldn't you actually do the research first to find out what an implant actually is?
For those who are struggling with how their CI sounds, they likely need support and validation. They likely need suggestions on how to improve the listening experience. Not judgment. For those who get amazing results quickly, good for you! But please, acknowledge the struggle that you also went through. I learned something from a very good friend. During the struggle, you suffer. When the struggle has subsided and the success has taken reign, you are able to assimilate the suffering as "worth it." You are able to put it in the proper place in your emotional experience. And you become happy, grateful, thrilled for your CI. And loyal to it. However, in the depths of the suffering, it's very difficult to see the light. You feel lonely. You feel betrayed. You feel darkness. And you are negative. That's a very normal, very human process. It doesn't mean that the success stories around you are false or overly optimistic. It means they are further ahead in their journey. Let them be.
To those considering an implant, do your research. Know what you are getting yourselves into. And set up a support system to help you through it.
To the professionals who install and program implants, stop saying "everyone is different" and tell people what to expect! Try empathy. Really. Nothing to be afraid of. I'll even practice with you- "It's difficult to hear unnatural sounds all day, you are showing great courage." Or "Feel free to vent about all the hard parts of this process because it's normal to have hard parts and then when you are done venting, we are going to try a new map."
To those who are in the depths of the suffering, know it's going to be okay. Measure your success in small ways, not in "normal hearing." Patience will be your daily trial. Ask people to help you notice what you are doing well.
I love my CI. But that love has not come without it's share of blood and sweat and tears. If it never got better than what it is today, I will still be happy with it. Because today, my CI combined with my hearing aid and my hardworking brain and my lipreading skills and my assistive listening devices, I am functioning well. And that's more than what I was doing a couple of months ago.
Getting off soapbox now. As one of my new hearing loss friends says..... blessings to you :)
Saturday, February 18, 2012
Repeating
The first session we had, my therapist told me my speech was excellent compared to what I have not been hearing. She also said some people would notice my speech changing slightly as I adjusted to the implant. I've been told by three people these past two weeks that my speech is becoming clearer. I didn't realize the differences would be that recognizable. Apparently, I couldn't hear consonants before getting my CI. And when you stop hearing consonants you stop saying them. And now I hear them again and can say them again. Incredible!
I've been told by two different people this weekend that they are rarely repeating themselves anymore in conversations with me. They both observed that I am understanding a lot more in the initial conversation and asking for less repeats. Fantastic!
I've been told by two different people this weekend that they are rarely repeating themselves anymore in conversations with me. They both observed that I am understanding a lot more in the initial conversation and asking for less repeats. Fantastic!
Thursday, February 16, 2012
6 Weeks Post Activation
I know I keep saying this. And I will probably keep saying this. This process has been crazy. So good. So hard. So wonderful. So discouraging. So humbling. At the end of the night, I look forward to going silent. But first thing next morning, I look forward to sound.
I'm starting to gain more confidence in some settings. When I am at Walgreens, I can talk to the store clerks without too much difficulty. I can now walk into work without my assistive listening device on and can communicate with the secretaries without it on. I still use it for my sessions because I just want to make sure I am understanding everything that is being said. Just 6 weeks ago, I wouldn't dare even walk into the building without my device on. I noticed I am starting to initiate more conversations. All progress.
With my direct connect audio cable, I can listen to audio books on Evan's ipod and probably understand about 60% without having to follow along in the book.
Evan expressed concern that things would become so noisy for me that it would be harder to "hear" inspiration. I'm happy to say that I very much still feel close to God. I feel like I still very much rely on the Spirit to guide me through listening. I hope I always do. Though this process has been so up and down, I see God's hand throughout the entire journey. I'm very grateful. Very grateful to live in today's time. Very grateful for a new start in the hearing world. Very grateful for all the patience and love and support people have shown me. And very grateful for all of the sound.
I'm starting to gain more confidence in some settings. When I am at Walgreens, I can talk to the store clerks without too much difficulty. I can now walk into work without my assistive listening device on and can communicate with the secretaries without it on. I still use it for my sessions because I just want to make sure I am understanding everything that is being said. Just 6 weeks ago, I wouldn't dare even walk into the building without my device on. I noticed I am starting to initiate more conversations. All progress.
With my direct connect audio cable, I can listen to audio books on Evan's ipod and probably understand about 60% without having to follow along in the book.
Evan expressed concern that things would become so noisy for me that it would be harder to "hear" inspiration. I'm happy to say that I very much still feel close to God. I feel like I still very much rely on the Spirit to guide me through listening. I hope I always do. Though this process has been so up and down, I see God's hand throughout the entire journey. I'm very grateful. Very grateful to live in today's time. Very grateful for a new start in the hearing world. Very grateful for all the patience and love and support people have shown me. And very grateful for all of the sound.
Sunday, February 12, 2012
Miracles
I'm listening to music right now. For real. By my own choice. I thought I would go through Evan's music to download familiar songs on his ipod for my listening practice. So I started listening to see what was familiar. Wanna know what song got me excited? Tom Petty's "Free Fallin'". Hahaha. I know that song! I decided to put in a Mariah Carey CD and set it to "When You Believe." I looked up the lyrics to read while listening. It made me cry! It dawned on me that I am really going to be able to listen to music. For real. I've had an awakening. Bring on the music!
Friday, February 10, 2012
Happy Friday
Though I am feeling a bit worn out from listening, I noted some signficant progress today during my rehab exercises. A seal now sounds like a seal, instead of thunder. A lawn mower now sounds like a lawn mower instead of a dentist's drill. And happily, I got 16 melodies right out of 16. Just because I wanted to compare, I took off my processor for part of my exercises and put in my hearing aid to listen to some of the music. Oh my gosh. This CI is doing way more for me than I have been giving it credit for lately. With the hearing aid only, there was almost no melody at all. Took the hearing aid off again and put on the CI, the melody came back almost fully. My first day of rehab, I think I did not get any of the melodies right at all. That's a lot of progress in 5 weeks.
In real life, I am also noticing improvements. Today I went to a fantastic two hour training on attachment (for work). For the first time in years, I attempted to hear the training without an assistive listening device. I succeeded :) :) :) Well, most of the training. A man spoke for about 20 minutes and I have no clue what he said. But to understand an hour and forty minutes of it without the contego made me super happy.
There are, of course, areas that I am not doing well in at all. Last night Evan took me to see 29 Steps at the Hale Center theatre. He didn't realize it would be British accents. I pretty much missed the whole play as the actors were all over the place so I could not read lips either. But that's okay. It was after a long day of listening at work and my brain can only do so much these days. We are hopeful that we will be able to attend a play one day and I will be able to get more out of it. A for effort!
And last but not least, I really feel like I am adjusting to the kids. I do not feel as stressed listening to their noises around the clock. So yeah, it's a happy friday!
In real life, I am also noticing improvements. Today I went to a fantastic two hour training on attachment (for work). For the first time in years, I attempted to hear the training without an assistive listening device. I succeeded :) :) :) Well, most of the training. A man spoke for about 20 minutes and I have no clue what he said. But to understand an hour and forty minutes of it without the contego made me super happy.
There are, of course, areas that I am not doing well in at all. Last night Evan took me to see 29 Steps at the Hale Center theatre. He didn't realize it would be British accents. I pretty much missed the whole play as the actors were all over the place so I could not read lips either. But that's okay. It was after a long day of listening at work and my brain can only do so much these days. We are hopeful that we will be able to attend a play one day and I will be able to get more out of it. A for effort!
And last but not least, I really feel like I am adjusting to the kids. I do not feel as stressed listening to their noises around the clock. So yeah, it's a happy friday!
Sunday, February 5, 2012
What I Didn't Understand
It's been a month since I have been activated! From that first roar to now, I feel like I have come lightyears ahead. I have a long ways to go still but I love that I am progressing with hearing instead of digressing. Tonight, while at the computer, I could hear my daughter in her bedroom coughing. She rarely gets sick. I can't even remember the last time she was sick. As soon as I went in her room, I could hear her ragged breathing. She's definitely sick. Poor girl. But I can't even begin to describe how grateful I am that I can hear her sickness.
I've been thinking. A behavior I am known to do quite a lot. I was considered a "well informed" patient by the implant team. But there were lots of things I didn't quite understand. I want to list some of them here. For the record. For the fam. For whoever else is finding themselves on a similar journey.
What I Didn't Understand:
-- My hearing would become "worse" before it would become "better" in some things (like speech)
-- The mechanical/robotics of sounds would work my brain like it has never been worked before. A lot of this brainwork just happens, you don't do anything but keep the implant on and your brain just works hard for you. But there's a whole lot else you have to do to help it along.
-- Auditory training is for the purpose of turning machine sounds into human voice, not for amplifying sound
-- Though temporary, the competing signals of the implant and hearing aid would make me incapable of my normal accomodations
-- I would feel desperate to seek out other CI recipients to know if my experience was somewhat normal
-- High pitches would make me feel crazy (Thus, children's voices are hard to listen to day in and day out)
-- That some sounds would come immediately in their clear, pure, true form and feel so miraculous that I would cry my eyes out
-- That I would make a whole new world of friends
-- That my children would be freeing themselves of the burdens of a hearing impaired mother (I am only beginning to understand how much they were burdened).
-- That my anxiety levels would heighten and then dramatically drop
-- That I would discover my 3 year old speaks in paragraphs, has a clever imagination, knows big words and can reciprocate in conversations. And that I would begin to understand there is a richness and depth to her voice that makes my soul feel like I am in the presence of someone who is wiser than me.
-- That I would realize just how many times a day my son calls for me from all over the house. And that his words "that's funny" would fill my soul with joy.
-- That the first month would be wonderful and awful, rewarding and discouraging, peaceful and distracting.
Here's my disclaimer. Everyone is different. I have heard of some understanding speech clearly from the first day of activation. But that is certainly not the most common. I have heard of some not understanding speech at all 6 months after activation. But that is certainly not the most common. There are so many variables. Pattern of hearing loss, cause of hearing loss, surgeon's skill, device chosen, mappings, rehab, etc. But this is my experience and I believe it's similar to many others.
Voices are getting easier. The kids voices are getting easier. It's literally been a "line upon line" experience with each sound building on the block before it. I can't just "skip ahead." Sure, sometimes it feels tedious. But this modern miracle has changed my life. It was most definitely the right decision. Month 2 will be even better :)
p.s. The vibrating in my head from the high frequencies (result of 3rd map) is already becoming less noticeable! That was fast!
I've been thinking. A behavior I am known to do quite a lot. I was considered a "well informed" patient by the implant team. But there were lots of things I didn't quite understand. I want to list some of them here. For the record. For the fam. For whoever else is finding themselves on a similar journey.
What I Didn't Understand:
-- My hearing would become "worse" before it would become "better" in some things (like speech)
-- The mechanical/robotics of sounds would work my brain like it has never been worked before. A lot of this brainwork just happens, you don't do anything but keep the implant on and your brain just works hard for you. But there's a whole lot else you have to do to help it along.
-- Auditory training is for the purpose of turning machine sounds into human voice, not for amplifying sound
-- Though temporary, the competing signals of the implant and hearing aid would make me incapable of my normal accomodations
-- I would feel desperate to seek out other CI recipients to know if my experience was somewhat normal
-- High pitches would make me feel crazy (Thus, children's voices are hard to listen to day in and day out)
-- That some sounds would come immediately in their clear, pure, true form and feel so miraculous that I would cry my eyes out
-- That I would make a whole new world of friends
-- That my children would be freeing themselves of the burdens of a hearing impaired mother (I am only beginning to understand how much they were burdened).
-- That my anxiety levels would heighten and then dramatically drop
-- That I would discover my 3 year old speaks in paragraphs, has a clever imagination, knows big words and can reciprocate in conversations. And that I would begin to understand there is a richness and depth to her voice that makes my soul feel like I am in the presence of someone who is wiser than me.
-- That I would realize just how many times a day my son calls for me from all over the house. And that his words "that's funny" would fill my soul with joy.
-- That the first month would be wonderful and awful, rewarding and discouraging, peaceful and distracting.
Here's my disclaimer. Everyone is different. I have heard of some understanding speech clearly from the first day of activation. But that is certainly not the most common. I have heard of some not understanding speech at all 6 months after activation. But that is certainly not the most common. There are so many variables. Pattern of hearing loss, cause of hearing loss, surgeon's skill, device chosen, mappings, rehab, etc. But this is my experience and I believe it's similar to many others.
Voices are getting easier. The kids voices are getting easier. It's literally been a "line upon line" experience with each sound building on the block before it. I can't just "skip ahead." Sure, sometimes it feels tedious. But this modern miracle has changed my life. It was most definitely the right decision. Month 2 will be even better :)
p.s. The vibrating in my head from the high frequencies (result of 3rd map) is already becoming less noticeable! That was fast!
Saturday, February 4, 2012
Back to Routine
Life has resumed. Now that I am functioning again, I'm back to being busy. Really busy. I worry about getting my listening practice in now. But I can't afford not to get it in. It's tricky to keep it all in balance.
I am now fully back at work and am super happy with how well I am doing in my sessions. I went to a staff meeting this week and was pleasantly surprised at how much more I got out of it the first hour. The second hour......that's a different story. My head still hurts from it. Hahaha.
Noisy environments are really hard on me. I can only hear this obnoxious background noise. At Walmart yesterday, a couple was talking to me about avocados. I totally faked my way through that conversation. Still have no idea what they were saying. Hope they didn't ask me any questions!
I love my 3rd Map!!
I am now fully back at work and am super happy with how well I am doing in my sessions. I went to a staff meeting this week and was pleasantly surprised at how much more I got out of it the first hour. The second hour......that's a different story. My head still hurts from it. Hahaha.
Noisy environments are really hard on me. I can only hear this obnoxious background noise. At Walmart yesterday, a couple was talking to me about avocados. I totally faked my way through that conversation. Still have no idea what they were saying. Hope they didn't ask me any questions!
I love my 3rd Map!!
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