I am not overwhelmed anymore. I'll tell you that first 24 hrs. was intense. It was a lot like that time period after I first lost my hearing 4 years ago and went unaided for 6 weeks. The day I got my hearing aid (the second one followed a week later) I was actually afraid because things seemed so loud and there was so much I heard that I was sad because I realized how disabled I had been... well, pretty much the same feelings.
When I have in my right implant only, things seem dull. I am shocked at how much vibrancy the left implant adds to my hearing spectrum. And when I have on just my left implant, I realize how much "mapping" we need to do to get that side sounding "good" to me. But the process isn't a quick one. That is part of what makes it hard. You forget all of the hard work and time it took to get where I am at with the right side. I know that when I hit the 6 month mark with the right side, there was a significant change to what I heard and the 4 day mark! It is slightly different I am sure being bilateral, but there will be progress and I can't expect it to be lickety split.
That time lapse I tried to describe in my last post, is not as noticeable. I liken it to that surround sound that we as normal hearing people are used to. I am not used to being implanted on both sides. So that information coming at me from both sides was very tough that first day. When the audiologists explained to me on activation day that it was a normal sensation it was part of being bilateral and my brain would get it right for me, I was able to understand it (make sense of the weird sounding stuff I was getting), and it has gotten better.
The day after activation I had a church service. (Good Friday) I was so confused as to why my pastor sounded muddy to me. I struggled that night. Again, that is where this process is more frustrating than the first implant, because you don't want to have backwards motion, but I am just trying to be patient (again I can't expect to have it activated and hear as well with it as I do with the one I have had for 8 months..there is an orientation process). Now, yesterday at church... I really didn't struggle at all. So even 2 additional days made a huge difference for me. I am also ready to turn it up to the next program. My audiologist gave me 2 programs in increasing strength to acclimate myself to as the week goes on.
I know this all sounds technical and I am sorry if I have lost any of you. If you have any questions, just email me!
This week is going to be a huge test for me... I am taking the show choir to NYC. We leave late tonight/Tuesday morning. I will be anxious to tell you how the city sounds to me this time as opposed to last time and how the Broadway shows sound. Last time I was very reliant on those around me, because anyone who has been in NYC or has spent any amount of time around teenagers can tell you that both are noisy. I want to be able to be more independent in the city this time. I want to enjoy the richness of the sounds.
I feel like I am doing great. I have to be patient and I also want to enjoy the process not just muddle through it.
I think about the times before all of this started, the reflection is a part of moving on for me. I have grown so much. Going through a freakish thing will do that to you (hopefully anyhow). I just feel it is sad how we all expect certain things, like to be able to hear and taste and see and smell. We figure we deserve that and we don't think about it. We aren't grateful for something we think we all should get. I can write and think of ways to describe to you what it is like to go from being a normal hearing person who is a musician to a deaf person, but you will never understand it fully. I'm glad, believe me... but I like to believe that I can appreciate everything a lot more richly than I used to, and that is a gift in this nightmare.
Monday, March 24, 2008
Thursday, March 20, 2008
bausch is a "bionic bilateral babe"
I couldn't resist the title. A friend of mine at Advanced Bionics, said I could join the ranks of bionic bilateral babes... so here I am!
I was afraid to be excited about today's appointment. I didn't know if I had healed enough for the activation and I didn't want to feel that let down again.
First I met with Dr. Weber. Who said the incision looked good. I knew that would be a green light for the activation!
It is hard to describe it all... It wasn't like the first activation for me, because I knew what I was listening for... and we had started the process last week.
At first the audiologist slowly increases the stimulation (through the electric impulses, it is a pulse rate thing but I am not smart enough to give you a better explanation)... you let the audiologist know when you start to hear something... At first it sounded like someone was talking with a heavy glass cup to their face. It does sound mechanical, but truly this time that only lasted minutes before I started making that connection to what I was hearing. By the time I left the appointment that sensation was gone (both the weird cup thing and the robo-voice). When one person was talking, it was easy listening so to speak, but in my appointment was my audiologist, a co-worker of hers as well as an intern, and my mom and cousin. When the conversation picked up to a quick group dialogue, I became a bit overwhelmed and began experiencing some of the sensations of being bilateral. It almost felt like a timing delay between the ears, but it is was/is so quick that, that isn't even a great explanation. Suddenly I was hearing not only a lot more, but bilateral. I was overwhelmed. It wasn't/isn't an awful feeling but it is new and different and the volume in my life has been turned up basically 50%. I am involving new pathways in my brain and now my brain has to make the connection between the two implants and get it all into sync for me.
I have high expectations for myself. I feel like this second implant was a tremendous gift and blessing in my life. I want to work very hard to hear to my full potential. I am willing to put in the work, because I have too much at stake. I live in a hearing world, a musical world and I want to be a part of it to the fullest extent that my body will allow me.
I am hopeful, ready to work and definitely overwhelmed. I thought I would feel emotional today and I think I was just still on "guard mode" protecting myself in case things didn't go well today to relax and allow myself to enjoy it. I also carry this sense that I need to do well because too many people have helped me get this far and I can't let anyone down... from my family to my students and their tremendous patience to the staff at the Cleveland Clinic and the people at advanced bionics. I want to absolutely do this for me, because this is a second chance, a hope I didn't expect to have, but I want to do it because it takes a village to make a bilateral babe!
I was afraid to be excited about today's appointment. I didn't know if I had healed enough for the activation and I didn't want to feel that let down again.
First I met with Dr. Weber. Who said the incision looked good. I knew that would be a green light for the activation!
It is hard to describe it all... It wasn't like the first activation for me, because I knew what I was listening for... and we had started the process last week.
At first the audiologist slowly increases the stimulation (through the electric impulses, it is a pulse rate thing but I am not smart enough to give you a better explanation)... you let the audiologist know when you start to hear something... At first it sounded like someone was talking with a heavy glass cup to their face. It does sound mechanical, but truly this time that only lasted minutes before I started making that connection to what I was hearing. By the time I left the appointment that sensation was gone (both the weird cup thing and the robo-voice). When one person was talking, it was easy listening so to speak, but in my appointment was my audiologist, a co-worker of hers as well as an intern, and my mom and cousin. When the conversation picked up to a quick group dialogue, I became a bit overwhelmed and began experiencing some of the sensations of being bilateral. It almost felt like a timing delay between the ears, but it is was/is so quick that, that isn't even a great explanation. Suddenly I was hearing not only a lot more, but bilateral. I was overwhelmed. It wasn't/isn't an awful feeling but it is new and different and the volume in my life has been turned up basically 50%. I am involving new pathways in my brain and now my brain has to make the connection between the two implants and get it all into sync for me.
I have high expectations for myself. I feel like this second implant was a tremendous gift and blessing in my life. I want to work very hard to hear to my full potential. I am willing to put in the work, because I have too much at stake. I live in a hearing world, a musical world and I want to be a part of it to the fullest extent that my body will allow me.
I am hopeful, ready to work and definitely overwhelmed. I thought I would feel emotional today and I think I was just still on "guard mode" protecting myself in case things didn't go well today to relax and allow myself to enjoy it. I also carry this sense that I need to do well because too many people have helped me get this far and I can't let anyone down... from my family to my students and their tremendous patience to the staff at the Cleveland Clinic and the people at advanced bionics. I want to absolutely do this for me, because this is a second chance, a hope I didn't expect to have, but I want to do it because it takes a village to make a bilateral babe!
Wednesday, March 12, 2008
set back
Today was to be my big day, but it wasn't so...
When I arrived today for my appointment, my audiologist got started with me right away because the doctor was busy. Things were going awesome actually, when the doctor stepped in. She looked at it and said... yeah this looks pretty good... I asked her if she could snip off the stitches, so she stepped out to get what she needed. When she came back and started to snip, she said... your incision is open in two spots. She prescribed two antibiotics and cultured my head (that hurt). She and my audiologist agreed it wouldn't be a good idea to fit me with my processor when it would be sitting heavily against my incision which is not healed properly.
I cried. I was very disappointed. I still am.
We had just arrived to the part in the activation where I was really hearing pretty well with the implant. But I am also trying to gain some healthy perspective too.
1) If I hadn't asked to have my stitches removed, I may have had a horrible infection on my hands, because at first glance she thought it looked good.
2) I have one week to wait and though it seems like eternity to me at this point, I have been without my hearing for almost 4 yrs. What is one more week?
3) I have a busy couple days ahead... I know God is in control not me. Maybe this was awful timing, I am going back to school in the morning, but as it will be... I will be just starting my spring break and will have some time to get adjusted. Maybe it would have been too much and God knew that and He was saving me some grief? Also, in a crazy twist...
4) When we went downstairs, my mom, as a good mother would... insisted that Adam get my prescription filled then and there. Over walks a dear old friend of mine from high school and beyond. She now works in human resources at Hillcrest Hospital where we were. She has had a rough week, but as it turns out, when mom and I go next week, we will meet her for lunch.
I have to believe that I will heal over this week and can look forward to an exciting day next Thursday. Sorry to not have happier news. Keep me in your thoughts, I am in need of some patience.
When I arrived today for my appointment, my audiologist got started with me right away because the doctor was busy. Things were going awesome actually, when the doctor stepped in. She looked at it and said... yeah this looks pretty good... I asked her if she could snip off the stitches, so she stepped out to get what she needed. When she came back and started to snip, she said... your incision is open in two spots. She prescribed two antibiotics and cultured my head (that hurt). She and my audiologist agreed it wouldn't be a good idea to fit me with my processor when it would be sitting heavily against my incision which is not healed properly.
I cried. I was very disappointed. I still am.
We had just arrived to the part in the activation where I was really hearing pretty well with the implant. But I am also trying to gain some healthy perspective too.
1) If I hadn't asked to have my stitches removed, I may have had a horrible infection on my hands, because at first glance she thought it looked good.
2) I have one week to wait and though it seems like eternity to me at this point, I have been without my hearing for almost 4 yrs. What is one more week?
3) I have a busy couple days ahead... I know God is in control not me. Maybe this was awful timing, I am going back to school in the morning, but as it will be... I will be just starting my spring break and will have some time to get adjusted. Maybe it would have been too much and God knew that and He was saving me some grief? Also, in a crazy twist...
4) When we went downstairs, my mom, as a good mother would... insisted that Adam get my prescription filled then and there. Over walks a dear old friend of mine from high school and beyond. She now works in human resources at Hillcrest Hospital where we were. She has had a rough week, but as it turns out, when mom and I go next week, we will meet her for lunch.
I have to believe that I will heal over this week and can look forward to an exciting day next Thursday. Sorry to not have happier news. Keep me in your thoughts, I am in need of some patience.
Friday, March 7, 2008
cautiously expectant
I have a greater sense of peace about this activation. For my first activation I felt like a little girl on Christmas morning... There was eagerness and excitement. I would be lying to downplay my emotions, but I since I know what to expect and the strides I have made as a listener with my first implant, I am what I like to describe as cautiously expectant.
My first experience set the bar pretty high. I keep reminding myself that no two ears are alike, and that my second implant may never work as effectively for me as the first... with all of the disappointments associated with my hearing and the ups and downs, I just have this irrational fear that something else will go wrong. I had it all worked out in my mind and grief over my sudden loss of hearing that I had to accept things as they were. Now, I know that my life is easier with an implant and with two... a now foreign emotion stirs in me again... hope. It is a lot to take in, what has happened and what may be.
... I know that my hearing was at the profound mark after the slip in July days before my first was activated. I couldn't make sense of anything with just my hearing aid anymore because I had grown so used to the information I was receiving with my implant. Even though I am still lost without the sounds of life when I have my equipment off, I know no matter how I do with this second implant, it will be an improvement.
... I know that I find it very difficult to balance the mom, wife, teacher hats because of the extremely high expectations I set for myself, and that is before you add in the hurdle of a devastating hearing loss. I won't lie or sugarcoat. Before my implant life was frustrating and difficult in everywhere and in everything. I often felt tense and lonely. The implant has given me back so much. I feel social and even giddy sometimes when I'm with a small group of friends. I don't feel left out of the conversations, or physically exhausted from the lip-reading and overcompensating and let's face it... guess work. I would guess what someone was saying when I couldn't hear them before. So with those strides, it is hard not to have very high expectations going into this second activation.
So as I prepare for this exciting and hopeful time, I will do what I have learned to do in times of crisis, joy and peace. I will pray. I will read scripture and I will hope that the Lord knows the intimate balance of our human hope and faith. I put all of my trust in him just as my 18 mo. old daughter puts in me as she holds my hand and we walk down the steps. I am too fragile to do it alone. I am human. I know hurt and pain and love and peace. I don't want to walk in this life without my Father's hand to steady me. I pray the Lord knows the utter trust I place in Him.
a little song that plays in my head when I need to encourage myself to be strong (my own words and tune)
You give me everything I need,
everything I need...
And though I've fallen from your hands,
Lord I reach for you again... Because I'm Learnin' to BELIEVE
My first experience set the bar pretty high. I keep reminding myself that no two ears are alike, and that my second implant may never work as effectively for me as the first... with all of the disappointments associated with my hearing and the ups and downs, I just have this irrational fear that something else will go wrong. I had it all worked out in my mind and grief over my sudden loss of hearing that I had to accept things as they were. Now, I know that my life is easier with an implant and with two... a now foreign emotion stirs in me again... hope. It is a lot to take in, what has happened and what may be.
... I know that my hearing was at the profound mark after the slip in July days before my first was activated. I couldn't make sense of anything with just my hearing aid anymore because I had grown so used to the information I was receiving with my implant. Even though I am still lost without the sounds of life when I have my equipment off, I know no matter how I do with this second implant, it will be an improvement.
... I know that I find it very difficult to balance the mom, wife, teacher hats because of the extremely high expectations I set for myself, and that is before you add in the hurdle of a devastating hearing loss. I won't lie or sugarcoat. Before my implant life was frustrating and difficult in everywhere and in everything. I often felt tense and lonely. The implant has given me back so much. I feel social and even giddy sometimes when I'm with a small group of friends. I don't feel left out of the conversations, or physically exhausted from the lip-reading and overcompensating and let's face it... guess work. I would guess what someone was saying when I couldn't hear them before. So with those strides, it is hard not to have very high expectations going into this second activation.
So as I prepare for this exciting and hopeful time, I will do what I have learned to do in times of crisis, joy and peace. I will pray. I will read scripture and I will hope that the Lord knows the intimate balance of our human hope and faith. I put all of my trust in him just as my 18 mo. old daughter puts in me as she holds my hand and we walk down the steps. I am too fragile to do it alone. I am human. I know hurt and pain and love and peace. I don't want to walk in this life without my Father's hand to steady me. I pray the Lord knows the utter trust I place in Him.
a little song that plays in my head when I need to encourage myself to be strong (my own words and tune)
You give me everything I need,
everything I need...
And though I've fallen from your hands,
Lord I reach for you again... Because I'm Learnin' to BELIEVE
Thursday, March 6, 2008
baby head-butting incident
I had an awful incident Monday night...
I had sworn off the pain medicine because it just made me feel groggy. I had been doing great all weekend and had a nice day on Monday. Adam and I had taken the kids to bed and I grabbed for Mimi, who didn't want to be grabbed, and as I drew her towards my lap she reared back and head butted me right on my newly implanted side! I immediately put pressure on it thinking it had split open and screamed like I was coming down a large hill on a roller coaster. I actually saw stars!!
Mimi was crying, Addison had plugged his ears and Adam, who had run downstairs to get Mimi's pacifier, came running looking bewildered. We decided the site looked good and was not disturbed, got the kids to bed... and I held a bag of frozen peas on my ear. Needless to say, I cried for nearly and hour, the pain made me sick to my stomach and I am quite sure it is bruised...
Sadly, we called the doctor for a different pain medicine because it is still pretty tender in light of the head butting incident. So Tuesday was a rough day for me pain wise... just when I was starting to feel better! Yesterday I got a new pain med. and took one at bedtime and this morning I am truly feeling pretty good. I am definitely a bit stir crazy and feel like I am going to drive myself to the library this morning, anywhere to get myself out and motivated... I have not driven yet, and I am pretty sure a long highway trip wouldn't be the brightest idea, but I am feeling pretty good and need out!
I had sworn off the pain medicine because it just made me feel groggy. I had been doing great all weekend and had a nice day on Monday. Adam and I had taken the kids to bed and I grabbed for Mimi, who didn't want to be grabbed, and as I drew her towards my lap she reared back and head butted me right on my newly implanted side! I immediately put pressure on it thinking it had split open and screamed like I was coming down a large hill on a roller coaster. I actually saw stars!!
Mimi was crying, Addison had plugged his ears and Adam, who had run downstairs to get Mimi's pacifier, came running looking bewildered. We decided the site looked good and was not disturbed, got the kids to bed... and I held a bag of frozen peas on my ear. Needless to say, I cried for nearly and hour, the pain made me sick to my stomach and I am quite sure it is bruised...
Sadly, we called the doctor for a different pain medicine because it is still pretty tender in light of the head butting incident. So Tuesday was a rough day for me pain wise... just when I was starting to feel better! Yesterday I got a new pain med. and took one at bedtime and this morning I am truly feeling pretty good. I am definitely a bit stir crazy and feel like I am going to drive myself to the library this morning, anywhere to get myself out and motivated... I have not driven yet, and I am pretty sure a long highway trip wouldn't be the brightest idea, but I am feeling pretty good and need out!
Sunday, March 2, 2008
silence
When I think of silence, I think of being a child playing in the snow. At mom and dad's when I was growing up the area was fairly remote. On a cold winter's day I would love to go outside and it seemed the only thing you could hear was the snow crunching under your feet.
Our lives are filled with noise. Even inhaling and exhaling, the punch of computer keys, car noise, a dog lapping from the water dish....
Now I know what true silence is. All of my residual hearing is gone. Even though I had very, very little... I could hear the sparkle of water tumble from the shower, the blow dryer, my baby without my hearing aid... now it is truly quiet. It is the most surreal thing you can imagine because for 29 years I lived with sound. Then with a very reduced sound. Now, without my one processor in, there is absolute silence. I experience something most of you reading this will never experience. There will always be your breath, the sound of forced air, something....
I want to tell you that I am totally okay with it, but it is eerie. When my life has been built with crescendos and diminuendos and trills and runs total silence is something that makes my stomach hurt.
Our lives are filled with noise. Even inhaling and exhaling, the punch of computer keys, car noise, a dog lapping from the water dish....
Now I know what true silence is. All of my residual hearing is gone. Even though I had very, very little... I could hear the sparkle of water tumble from the shower, the blow dryer, my baby without my hearing aid... now it is truly quiet. It is the most surreal thing you can imagine because for 29 years I lived with sound. Then with a very reduced sound. Now, without my one processor in, there is absolute silence. I experience something most of you reading this will never experience. There will always be your breath, the sound of forced air, something....
I want to tell you that I am totally okay with it, but it is eerie. When my life has been built with crescendos and diminuendos and trills and runs total silence is something that makes my stomach hurt.
Saturday, March 1, 2008
Its Alive!
It is truly me... I have to say it has been a restful but uncomfortable week. I had hoped to be off the pain medicine and just using ibuprofen now, because I hate that cloudy pain meds feeling.... but that isn't happening quite yet. =-(
Adam gave a great update about the surgery. The week has been a bit of a blur. The good news from me is that I feel pretty imbalance and not too sick to my stomach. That was definitely my biggest fear going into surgery. With the two bouts of vertigo I had (one in December and one in January) I was so fearful of being like that post-op. I am moving around just fine, I even made a batch of brownies yesterday.
The placement of this implant feels different to me, more towards my face, though mom assures me that is swelling... silly things like chewing are bothering me. Also my ear has been hot and itchy and a bit swollen...(don't worry, I am taking antibiotics, so I am pretty sure it isn't infected)...
I am just grateful to be through surgery and I have the roughest days behind me. But more importantly I am thankful for my support and love from my friends, family and students.
My mom was such a comfort to me. She makes these amazing creamed eggs on toast, bought me a recliner to recover in, did laundry... just made me feel taken care of. There is nothing like having mom around. My friends Amanda and Stacey made my family meals, and they are both so busy, it is a gesture they didn't have to do, but was appreciated deeply. Stacey is also subbing for me during my sick time and she is so concerned about doing a good job, that it touches my heart. Julie, babysat me on Adam's first day back to work. It was so nice to have a buddy around. We chatted and she made me potato soup. She also did the most amazing thing by throwing Addison a birthday party (my surgery day was his actual birthday). I know a lot of my friends and students have said prayers for me. That is all I could ask for. I have spent some of my recovery time in prayer for those around me and for my own recovery. I try to make it part of my daily routine(always not just now) to spend time in devotion, reading the Bible and praying. It is so difficult for me to slow down and relax, and it is very hard for me to seek help from my friends. When you are in a situation like I am, where you have had surgery and have two small children, you have to get over that pretty quickly. You know what is the hardest part in all of this for me? Slowing down. Trying not to keep up with the housework, trying not to bend over or strain.... The pain, that I can deal with, the total loss of any residual hearing is eerie at times... I knew that would be a struggle for me, but sadly it is slowing down that is my struggle. I certainly don't even live life in the fast lane! I am a chubby, deaf Christian wife and mom. I teach music and I love to cook and clean. So, I am armed with some books from my pastor's wife, some movies I have been meaning to watch but haven't "had time" and I hope to not just bide my time, but enjoy the slowing down and allow myself to heal so when activation day comes, I am ready!!!!!
Adam gave a great update about the surgery. The week has been a bit of a blur. The good news from me is that I feel pretty imbalance and not too sick to my stomach. That was definitely my biggest fear going into surgery. With the two bouts of vertigo I had (one in December and one in January) I was so fearful of being like that post-op. I am moving around just fine, I even made a batch of brownies yesterday.
The placement of this implant feels different to me, more towards my face, though mom assures me that is swelling... silly things like chewing are bothering me. Also my ear has been hot and itchy and a bit swollen...(don't worry, I am taking antibiotics, so I am pretty sure it isn't infected)...
I am just grateful to be through surgery and I have the roughest days behind me. But more importantly I am thankful for my support and love from my friends, family and students.
My mom was such a comfort to me. She makes these amazing creamed eggs on toast, bought me a recliner to recover in, did laundry... just made me feel taken care of. There is nothing like having mom around. My friends Amanda and Stacey made my family meals, and they are both so busy, it is a gesture they didn't have to do, but was appreciated deeply. Stacey is also subbing for me during my sick time and she is so concerned about doing a good job, that it touches my heart. Julie, babysat me on Adam's first day back to work. It was so nice to have a buddy around. We chatted and she made me potato soup. She also did the most amazing thing by throwing Addison a birthday party (my surgery day was his actual birthday). I know a lot of my friends and students have said prayers for me. That is all I could ask for. I have spent some of my recovery time in prayer for those around me and for my own recovery. I try to make it part of my daily routine(always not just now) to spend time in devotion, reading the Bible and praying. It is so difficult for me to slow down and relax, and it is very hard for me to seek help from my friends. When you are in a situation like I am, where you have had surgery and have two small children, you have to get over that pretty quickly. You know what is the hardest part in all of this for me? Slowing down. Trying not to keep up with the housework, trying not to bend over or strain.... The pain, that I can deal with, the total loss of any residual hearing is eerie at times... I knew that would be a struggle for me, but sadly it is slowing down that is my struggle. I certainly don't even live life in the fast lane! I am a chubby, deaf Christian wife and mom. I teach music and I love to cook and clean. So, I am armed with some books from my pastor's wife, some movies I have been meaning to watch but haven't "had time" and I hope to not just bide my time, but enjoy the slowing down and allow myself to heal so when activation day comes, I am ready!!!!!
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