Just got back from a mini vacation/wedding reception in Virginia.
I think people are still puzzled about my hearing. My family says they are glad, but I didn't feel like I had a good visit with them (didn't get to visit all my relatives as much as I had hoped...not enough time I think). I sometimes wonder if it is because my family that doesn't see me a lot aren't sure how easy it is/isn't for me to converse... I think a lot of people wonder if I am following, not realizing I am upfront and will let them know if I need something repeated .
Over the trip I was impressed that I can converse fairly easily in a car. That is a big feat because the car has a lot of noise... car noise, blowers from air conditioning, maybe a radio, maybe kid noise... Mom and I didn't have any problems. If I didn't catch something, I would ask her to repeat it.
When we went on a tour of the Luray Caverns our first guide was an old man. That was tough, just as a stereotype... eldery men don't move their mouths very much. But then, he took off and we were switched tour guides and despite the dark cavernous conditions, I did great. We also took a tour the following day of Monticello (Thomas Jefferson's home). I easily understood almost everything... had to confirm a few things with mom, but did very well.
The wedding reception was tough... as I knew it would be. There were a lot of people and loud music. I have learned not to let it upset me anymore. I think I finally understand the concept a speaker was trying to convey at a living with hearing loss workshop a long time ago. Have realistic expectations and know that you will have trouble in certain situations. I thought I would never be able to accept that, but honestly, you do over time. Now, I realize I am much better in smaller groups where the conversation doesn't move too fast and people are making an effort to include me. I know that can't always happen, so when I am forced into noisey situations I may normally avoid, I just know it won't be for me like it is for everyone else.
I go Wednesday for some more mapping. Hopefully we will hear soon from insurance and know one way or another if the second implant has been approved. Keep that one in your prayers for now. I am finally writing about all of my experiences the past three years. Hopefully with a lot of work, it can be a manuscript some day!!!!
Monday, July 30, 2007
Tuesday, July 24, 2007
new sounds...old sounds
What is old is new again.
It is hard to describe how things are going, but I will do my best...
I am hearing things I haven't heard for a long time. Sometimes I am still awestruck about what I am hearing.
I can hear children outside playing while my windows are open.
I can hear birds outside while my windows are open.
I heard a train on a walk the other day and could tell it was still some distance away.
I heard my stomach gurgle for the first time in three years.. don't you see how much we take for granted when we can hear normally?
I heard thunder today and it wasn't close... sometimes w/ my hearing aids and it was close I could hear it because I could feel it.
These things may seem little to you, but they are huge to me. I took so much for granted when I could hear three years ago. I forgot things like the noise of children on the street and tummies gurgling.
It is hard to describe how things are going, but I will do my best...
I am hearing things I haven't heard for a long time. Sometimes I am still awestruck about what I am hearing.
I can hear children outside playing while my windows are open.
I can hear birds outside while my windows are open.
I heard a train on a walk the other day and could tell it was still some distance away.
I heard my stomach gurgle for the first time in three years.. don't you see how much we take for granted when we can hear normally?
I heard thunder today and it wasn't close... sometimes w/ my hearing aids and it was close I could hear it because I could feel it.
These things may seem little to you, but they are huge to me. I took so much for granted when I could hear three years ago. I forgot things like the noise of children on the street and tummies gurgling.
Sunday, July 15, 2007
what is hard
It was and always seems to be busy around here. Every day there are new challenges for me, because our listening environments are constantly changing.
I have been asked some good questions, so I am going to try to take you through some of my challenges and some every day things...
The implant doesn't sound weird to me. At my first appointment (the initial hook-up) it did. The thing is, the more you wear it (I have treated it like my hearing aids...in first thing in the morning...out at night before bed) the more normal things become. A lot of people have asked if the wire is always there and the outside magnet. The answer is no. The processor (the part that looks like a hearing aid) has the wire attached and the magnet. Under my skin is the implant, which is a plastic disk containing basically a computer chip and attached to that is an array of tiny electrodes that are wrapped around my cochlea. Also inside is a magnet. When I put on my processor the magnets on the inside and outside touch. Gosh, I hope this makes sense. Another question people ask is does it feel weird...the implant. Yes. But, three weeks now post operation and I can sleep on that side again. I can feel it there, but it is becoming a part of me. Another question is, is there still a lot of popping and cracking on the implanted side... yes. However, when I have the implant in.. there is enough stimulation that I don't notice it. At night when I have taken it off, is the only time I notice it. What about the itching? It stopped itching the day Dr. Weber took out the stitches. They are dissolving stitches, but they were driving me crazy, so he took them out and the itching subsided immediately. The pain was never bad and never has been. I will tell you though, it is a bit heavier than wearing a hearing aid, so the top of my ear is still (10 days post activation) sore. I know from having hearing aids, that you get callused and become used to that and that seems such a petty gripe.
In the morning when I put on the implant it seems almost loud (but definitely not uncomfortable) until I start hearing noise. By the evening (especially on busy social days) I find that I am turning up the volume, which I can do on the processor.
Last night I went to go see several of my students in Oliver being performed at our local community theater. It is a small stage, so they don't mic anything. I found it difficult to follow. I wasn't straining to hear, but at the same time... I just didn't catch it all. I was about to be frustrated when after the show I saw one of my students and he came up and hugged me. Despite the tons of people around, I was easily able to understand what he was saying.
I need to remind myself at times that although this has been a miracle in my life, I am still hearing impaired. Some situations aren't "fixable." It is easy to lose a hold of that when you are hearing so much better. I also have some insecurities. I sometimes worry that something is going to happen to cause me to lose the use of my implant and I am going to have to go through more struggles and loss. I used to have dreams when I first got my hearing aids that horrible things would happen to them and I wouldn't have them anymore, so I guess being a little insecure about the implant is normal. Especially when my hearing is unstable in my aided ear. I think that my family and friends would agree that I am more relaxed and hearing a lot more. I am going to do a post this week of the things I have been hearing that I wasn't hearing before. I just need to make a list before I do it (that means there are a lot!!).
I have been asked some good questions, so I am going to try to take you through some of my challenges and some every day things...
The implant doesn't sound weird to me. At my first appointment (the initial hook-up) it did. The thing is, the more you wear it (I have treated it like my hearing aids...in first thing in the morning...out at night before bed) the more normal things become. A lot of people have asked if the wire is always there and the outside magnet. The answer is no. The processor (the part that looks like a hearing aid) has the wire attached and the magnet. Under my skin is the implant, which is a plastic disk containing basically a computer chip and attached to that is an array of tiny electrodes that are wrapped around my cochlea. Also inside is a magnet. When I put on my processor the magnets on the inside and outside touch. Gosh, I hope this makes sense. Another question people ask is does it feel weird...the implant. Yes. But, three weeks now post operation and I can sleep on that side again. I can feel it there, but it is becoming a part of me. Another question is, is there still a lot of popping and cracking on the implanted side... yes. However, when I have the implant in.. there is enough stimulation that I don't notice it. At night when I have taken it off, is the only time I notice it. What about the itching? It stopped itching the day Dr. Weber took out the stitches. They are dissolving stitches, but they were driving me crazy, so he took them out and the itching subsided immediately. The pain was never bad and never has been. I will tell you though, it is a bit heavier than wearing a hearing aid, so the top of my ear is still (10 days post activation) sore. I know from having hearing aids, that you get callused and become used to that and that seems such a petty gripe.
In the morning when I put on the implant it seems almost loud (but definitely not uncomfortable) until I start hearing noise. By the evening (especially on busy social days) I find that I am turning up the volume, which I can do on the processor.
Last night I went to go see several of my students in Oliver being performed at our local community theater. It is a small stage, so they don't mic anything. I found it difficult to follow. I wasn't straining to hear, but at the same time... I just didn't catch it all. I was about to be frustrated when after the show I saw one of my students and he came up and hugged me. Despite the tons of people around, I was easily able to understand what he was saying.
I need to remind myself at times that although this has been a miracle in my life, I am still hearing impaired. Some situations aren't "fixable." It is easy to lose a hold of that when you are hearing so much better. I also have some insecurities. I sometimes worry that something is going to happen to cause me to lose the use of my implant and I am going to have to go through more struggles and loss. I used to have dreams when I first got my hearing aids that horrible things would happen to them and I wouldn't have them anymore, so I guess being a little insecure about the implant is normal. Especially when my hearing is unstable in my aided ear. I think that my family and friends would agree that I am more relaxed and hearing a lot more. I am going to do a post this week of the things I have been hearing that I wasn't hearing before. I just need to make a list before I do it (that means there are a lot!!).
Wednesday, July 11, 2007
1 week adjustments
So today I went for my one-week post activation mapping.. It was actually very interesting because what we did was first test the efficacy of the implant... she needed to see how well I was doing, how effective it was so that she would know what adjustments to make. My word understanding went from 40% before (probably worse on the sentences... but don't know that stat) to 76%. I was so impressed! So she did a lot of the hearing tests I have been through before and in the middle thresh-holds I tested around normal... what we found we had to do was improve the higher frequencies, so when it came time for the fine tuning, that is what she gave me more of. I hope this is making sense.
Sadly, as I knew... on June 30th my hearing in my better ear took a nose dive... today's tests confirmed that. With that being said, it was no a brainer to get my other ear done... I knew that day it would have to be done... so Joyce was getting the paper started on that today... the implant team was meeting right after my appointment, so it was going to be discussed today. It will have to go through insurance; Joyce said many reasons can be given for this. My friend Dawn (who is bi-implanted) has said she wished she had her 2nd done sooner, and Joyce said that is ideal. I realize with the strides in my tests today... this is a happy and easy choice.
What happens now is I do a lot of work. I will be working in the music room with Adam as much as I can take it... I will keep pushing myself until that 76% gets up to 100%. I am going to try to use the phone in the coming weeks also.
I am as optimistic as ever, and happy to dig in my heals and keep working.
Sadly, as I knew... on June 30th my hearing in my better ear took a nose dive... today's tests confirmed that. With that being said, it was no a brainer to get my other ear done... I knew that day it would have to be done... so Joyce was getting the paper started on that today... the implant team was meeting right after my appointment, so it was going to be discussed today. It will have to go through insurance; Joyce said many reasons can be given for this. My friend Dawn (who is bi-implanted) has said she wished she had her 2nd done sooner, and Joyce said that is ideal. I realize with the strides in my tests today... this is a happy and easy choice.
What happens now is I do a lot of work. I will be working in the music room with Adam as much as I can take it... I will keep pushing myself until that 76% gets up to 100%. I am going to try to use the phone in the coming weeks also.
I am as optimistic as ever, and happy to dig in my heals and keep working.
Sunday, July 8, 2007
fireworks!
Yesterday was Mimi's big birthday party. With just my siblings their families, our parents, and our twin city area family... there were a lot of people here. Here is how it went....
When there is a lot going on, I will run into the same issues as pre-implant. Noisy situations will be a challenge, but not as impossible as before... I used to feel so alone in busy social settings... I know it sounds sad, but I used to just get lost and feel overwhelmed and frustrated. I was not as frustrated yesterday. It was much easier for me to converse with everyone. I felt more apart of things than I have felt since I lost my hearing.
After the party, we took the kids and my nephew to the fireworks in Gnadenhutten. We found the perfect spot... boys had lots of room to run and catch fireflies, the sunset over the hills was perfect. Adam's tow truck guys call that area God's country. I still am taken by its beauty sometimes. Anyhow, I was struck with what I heard. I heard booms, sizzles... the screams of those crazy fireworks... and even... this is big... an echo off the foothills around us. I was also able to hear addison and my nephew talk to me too during the display. I just got kind of choked up about it all. For all of my friends and family reading this who do not have a hearing loss, take just a minute and thank God for that. I have missed so much these past three years, and this week has been rather emotional for me as I am getting some of that back and at the same time I am overwhelmed by the miracle, I am realizing all I have missed and I hurt for myself a little bit too.
So this morning struck another test for me... church.
I chose not to wear the neck loop and implant w/ the t-coil because I wanted to see what it was like for me. I forgot how distracting a p.a. system is w/ hearing aids, and so my aided ear was getting a slight delay while my implant was picking things up... so I ended up turning my aid down as far as I could and was able to get about 80% of the sermon. I realize the fine tuning in weeks to come will get this up even more, I am still lip reading quite a lot too. Now, with that being said... there are some big moments for me... we have a praise band and I can tell you that I had my doubts about music post-implant, but it honestly sounds better to me through my implant than through my aid. My pitch perception was not distorted and instead of sounding like a music blob (as it has), it sounded true to me. I heard each layer and the entirity. An even bigger moment for me, was when the congregation sang a hymn. I heard the congregation singing together--this choked me up too... hearing voices lifted together. I used to be so clouded with everything going on I was lucky to follow musically. I think I am going to test myself a bit tonight musically... go out to the music room after the kids go to bed and play my flute and sing a big with adam or listen to him sing and start re-learning music. Honestly, this morning gives me so much hope for my future not just personally, but my career too.
When there is a lot going on, I will run into the same issues as pre-implant. Noisy situations will be a challenge, but not as impossible as before... I used to feel so alone in busy social settings... I know it sounds sad, but I used to just get lost and feel overwhelmed and frustrated. I was not as frustrated yesterday. It was much easier for me to converse with everyone. I felt more apart of things than I have felt since I lost my hearing.
After the party, we took the kids and my nephew to the fireworks in Gnadenhutten. We found the perfect spot... boys had lots of room to run and catch fireflies, the sunset over the hills was perfect. Adam's tow truck guys call that area God's country. I still am taken by its beauty sometimes. Anyhow, I was struck with what I heard. I heard booms, sizzles... the screams of those crazy fireworks... and even... this is big... an echo off the foothills around us. I was also able to hear addison and my nephew talk to me too during the display. I just got kind of choked up about it all. For all of my friends and family reading this who do not have a hearing loss, take just a minute and thank God for that. I have missed so much these past three years, and this week has been rather emotional for me as I am getting some of that back and at the same time I am overwhelmed by the miracle, I am realizing all I have missed and I hurt for myself a little bit too.
So this morning struck another test for me... church.
I chose not to wear the neck loop and implant w/ the t-coil because I wanted to see what it was like for me. I forgot how distracting a p.a. system is w/ hearing aids, and so my aided ear was getting a slight delay while my implant was picking things up... so I ended up turning my aid down as far as I could and was able to get about 80% of the sermon. I realize the fine tuning in weeks to come will get this up even more, I am still lip reading quite a lot too. Now, with that being said... there are some big moments for me... we have a praise band and I can tell you that I had my doubts about music post-implant, but it honestly sounds better to me through my implant than through my aid. My pitch perception was not distorted and instead of sounding like a music blob (as it has), it sounded true to me. I heard each layer and the entirity. An even bigger moment for me, was when the congregation sang a hymn. I heard the congregation singing together--this choked me up too... hearing voices lifted together. I used to be so clouded with everything going on I was lucky to follow musically. I think I am going to test myself a bit tonight musically... go out to the music room after the kids go to bed and play my flute and sing a big with adam or listen to him sing and start re-learning music. Honestly, this morning gives me so much hope for my future not just personally, but my career too.
Saturday, July 7, 2007
triple 7's
Today is supposed to be an extremely lucky day as it is 7-7-07...Today is also Mimi's first birthday party and I am in the mood to CELEBRATE!!!
1) I was with the kids the day after I received the implant. Mimi has a little musical piano toy that was Addison's. I remember that you could set it to each key getting its own note, or each key getting a snippet of a song. As I was sitting Mimi came over and tapped on it, and I immediately knew what the snippet of the song was... part of fur elise by Beethoven (ironic huh w/ his deafness and all?) The thing is, I never would have heard that before... I would have known it was playing music but never been able to make it out.
2) I decided a good test for me was to go to a movie with Addison. Movies are extremely difficult. Obviously I could hear the sound before, but not make out the words... when you lose your hearing, in most cases, word recognition goes too and that has been a huge problem for me. We went to see Ratatoullie... which is a computer animated film (lip reading not so easy there) and a lot of the characters had French accents... not helpful either. Anyhow, in the past I would have maybe gotten 30-40% (not an exaggeration, tests have proven that on me). I probably got 80-85% of the movie. It was the most I have understood a movie in three years regardless of it being animated or not!
3) I picked up my friend Julie's girl Austa to take to driver's ed class this week. Julie decided to ride along to see how the implant was going. We were able to converse as I drove (not able to lip read while driving..ha-ha) and I did just fine. No f.m., no lip reading... conversing as I drove!!!!
4) I ran out to the music room yesterday to get something for Mimi's party and I couldn't figure out what I was hearing... I walked outside and the sound was gone, went back in and realized how loud the blower was to me... a fan!!! I came in the house and realized I could hear the air conditioning and even the ceiling fan in the kitchen.
5) I ran into a friend of mine from SHHH (now HLAA) Hearing Loss Association of America... and her sister in law has two implants. She couldn't believe how well I was doing and that I haven't even really had adjustments yet.
Today will be another good test with lots of people and the party. I am sure I will have much to say later.
1) I was with the kids the day after I received the implant. Mimi has a little musical piano toy that was Addison's. I remember that you could set it to each key getting its own note, or each key getting a snippet of a song. As I was sitting Mimi came over and tapped on it, and I immediately knew what the snippet of the song was... part of fur elise by Beethoven (ironic huh w/ his deafness and all?) The thing is, I never would have heard that before... I would have known it was playing music but never been able to make it out.
2) I decided a good test for me was to go to a movie with Addison. Movies are extremely difficult. Obviously I could hear the sound before, but not make out the words... when you lose your hearing, in most cases, word recognition goes too and that has been a huge problem for me. We went to see Ratatoullie... which is a computer animated film (lip reading not so easy there) and a lot of the characters had French accents... not helpful either. Anyhow, in the past I would have maybe gotten 30-40% (not an exaggeration, tests have proven that on me). I probably got 80-85% of the movie. It was the most I have understood a movie in three years regardless of it being animated or not!
3) I picked up my friend Julie's girl Austa to take to driver's ed class this week. Julie decided to ride along to see how the implant was going. We were able to converse as I drove (not able to lip read while driving..ha-ha) and I did just fine. No f.m., no lip reading... conversing as I drove!!!!
4) I ran out to the music room yesterday to get something for Mimi's party and I couldn't figure out what I was hearing... I walked outside and the sound was gone, went back in and realized how loud the blower was to me... a fan!!! I came in the house and realized I could hear the air conditioning and even the ceiling fan in the kitchen.
5) I ran into a friend of mine from SHHH (now HLAA) Hearing Loss Association of America... and her sister in law has two implants. She couldn't believe how well I was doing and that I haven't even really had adjustments yet.
Today will be another good test with lots of people and the party. I am sure I will have much to say later.
Tuesday, July 3, 2007
Initial hook-up
The Bionic Woman and her Bionic BuddyMy mom said that she watched 3 years of stress and hard-work melt away into relaxation as we worked on my initial hook-up today.
It is late and I am going to try to give you some brief insight tonight and then expand over the next few days.
First I saw my surgeon... I told him I wanted the stitches out... they are disolving, but I was ready for them to go. After that we went to see Joyce, the audiologist. They start off the session by figuring out "thresh-holds." She started with very little stimulation and then brought it up until I heard something. It is hard to describe what I first heard. It wasn't for me like several of my friends with implants described. It felt like I was hearing through layers. When we hear even through a hearing aid, we are utilizing our natural resources, even amplified sound through the ear is somewhat natural... I guess the way it transfers the information to the brain. Through the implant, the ear is bipassed and the sound is directly stimulating my auditory nerve... the sound is re-routed past its natural course and the result is just strange. What I heard sounded mechanical in nature, but I could immediately give a voice to each person in the room. Dad sounded like roboto dad, mom like a form of herself and adam sounded like adam to me too. I was able to immediately make sense of what I was hearing. I understood words and could even distinguish where the sound was coming from. We even hooked up the i-pod... which has a direct link to the implant and I could listen to music and it sounded pretty normal to me.
I feel like it is a small miracle. The best part is that I am not straining to hear. Volume isn't going to be as much of an issue for me as it has been. I am always feeling like I am straining, so today to just concentrate on the sound... this alone is a huge burden lifted. Noisy environments will always be a struggle, car noise will always pose some extra attention, but I swear that I feel lighter already in this regard. Second, I am today where I had hoped to be in a month to two months from now. I didn't expect to be able to distinguish male from females or follow much, when in fact it was quite the opposite for me. What will be some getting used to is that things sound different...and the way I am getting the information is different, it just feels weird... I know that isn't doing it justice, I just can't think of how else to describe that right now.
I feel like I can relax a little now. Enjoy this small miracle, practice listening to everything in this new way and just hope for things to get better and better.
Those that know me well, know I am a philosopher so I will have lots to say over the next couple of days and I just want to share this journey with our family and friends.
Today was more than Adam and I could have ever anticipated and we are happy tonight, just happy.
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