With the change to 2 aids, I have felt more clumsy than normal this last week and a half. It was believed the second aid as a side effect may help with balance, so I am hanging onto hope it gets better. Simple things like cracks and small lifts in the sidewalk, walking in a straight line in a crowd of people when I can't see the ground or ahead of me have felt more difficult than normal.
Another adjustment is that of my perceptions and feelings about being deaf.
As unrational as it may seem, I actually feel more deaf with 2 aides instead of just one. I would like to think I'm not always so superficial, but wearing 1 aide, I could always turn or let my hair fall a certain way if I didn't want to broadcast I was deaf, especially in pictures, etc.
The combination of the second aide plus getting my hair cut super super short means there's no way I can hide either aide. I'm also acutely aware the left one is THERE, so that doesn't help. In all reality the entire world may be completely oblivious and are only aware because I draw attention to it because of my own self consciousness.
Sunday, December 11, 2011
Friday, December 9, 2011
Week 1 Review
I've passed the 1 week mark for this new hearing aid in my ear. I'm really glad I've chosen to document as much of this as possible. Things become commonplace so quickly that there is no way I could assume I'd remember it all years down the road.
I'm now at the point where I wear both aides from wakeup to bedtime. I have been on call for work for the last month so my right hearing aid has remained in, but I've taken the left one out to sleep.
Sunday night and Tuesday night I was in a lecture type setting and the microphone feedback and volume was so loud that I ended up taking the left aide out. I've been able to tolerate trains, buses, street noises, and leaving it in through the day, but these speakers were just TOO loud for too long.
I don't so quickly go "SOMETHING IS MOVING!" when I speak any more. I am still very conscious and aware of there being a foreign object in my ear. Yesterday afternoon, I finally got to the point where I couldn't remember if I'd put it back in after a shower. I tried talking for a second, then actually ended up reaching up to feel the mold to confirm it was in my ear.
I've had more headaches towards the end of this week. I believe part of that may have been tied to the changing weather patterns, but it felt like it hurt to hear. It hurt to use brainpower to concentrate on the sounds around me. I ended up turning everything on mute and just trying to quiet the house as much as possible.
At this point, I think I am ready to make a call sometime next week to make the appointment for the next tweak.
I'm now at the point where I wear both aides from wakeup to bedtime. I have been on call for work for the last month so my right hearing aid has remained in, but I've taken the left one out to sleep.
Sunday night and Tuesday night I was in a lecture type setting and the microphone feedback and volume was so loud that I ended up taking the left aide out. I've been able to tolerate trains, buses, street noises, and leaving it in through the day, but these speakers were just TOO loud for too long.
I don't so quickly go "SOMETHING IS MOVING!" when I speak any more. I am still very conscious and aware of there being a foreign object in my ear. Yesterday afternoon, I finally got to the point where I couldn't remember if I'd put it back in after a shower. I tried talking for a second, then actually ended up reaching up to feel the mold to confirm it was in my ear.
I've had more headaches towards the end of this week. I believe part of that may have been tied to the changing weather patterns, but it felt like it hurt to hear. It hurt to use brainpower to concentrate on the sounds around me. I ended up turning everything on mute and just trying to quiet the house as much as possible.
At this point, I think I am ready to make a call sometime next week to make the appointment for the next tweak.
Sunday, December 4, 2011
72 hour mark Observations
So I am approximately 72 hours into this adventure. Some observations I've found myself making:
- Extremely extremely sensitive and startled by noise. I've not worn the aid outside more than once, since I am usually near the train or traveling on the train. I'm not quite brave enough to try that more than once so far.
I'm not always sure what's going to be too loud. Just doing the dishes and having the plate the side of the sink was very uncomfortable to feel. Setting the plastic bowl of cat food on the floor hurt to feel. I've found myself adjusting the sound volume on my laptop, my work phone ringer, and my cell phone down a few notches after having them go off and it being unpleasant.
- Voices don't sound so flat. I was watching a show on Hulu and had stepped away from in front of my computer. When not looking at the faces, the voice of Ty with Extreme Home Makeover sounded different. It sounded like there were more layers to his voice. This is an interesting development for me because I really love hearing spoken word from some specific people. I'm excited to go back and listen to things I have recorded by them again and compare the difference.
- Independent hearing experiences is TRIPPY feeling. This was the one time I had the left aid in and I was on the train. I had my mono T-Coil headset on my right ear, and the left hearing aid on to the normal mode. I was listening to my music when all of the sudden I would feel things with my left ear. It caught me completely by surprise.
I tried taking the T-coil headset off and placing it on the left ear, to see if the left ear was picking up any sound signals. I wasn't able to hear anything at all when I did that. I also lost the sound signal on the right side as soon as the T-coil piece was more than an inch or so away from the hearing aid.
So my conclusion so far is that the left ear vibration was picking up the train noise. Once I started paying closer attention, I noticed I felt the vibration most strongly when the train sped up. I've never before had any other experience outside the world of having the T-coil mode on.
- Extremely extremely sensitive and startled by noise. I've not worn the aid outside more than once, since I am usually near the train or traveling on the train. I'm not quite brave enough to try that more than once so far.
I'm not always sure what's going to be too loud. Just doing the dishes and having the plate the side of the sink was very uncomfortable to feel. Setting the plastic bowl of cat food on the floor hurt to feel. I've found myself adjusting the sound volume on my laptop, my work phone ringer, and my cell phone down a few notches after having them go off and it being unpleasant.
- Voices don't sound so flat. I was watching a show on Hulu and had stepped away from in front of my computer. When not looking at the faces, the voice of Ty with Extreme Home Makeover sounded different. It sounded like there were more layers to his voice. This is an interesting development for me because I really love hearing spoken word from some specific people. I'm excited to go back and listen to things I have recorded by them again and compare the difference.
- Independent hearing experiences is TRIPPY feeling. This was the one time I had the left aid in and I was on the train. I had my mono T-Coil headset on my right ear, and the left hearing aid on to the normal mode. I was listening to my music when all of the sudden I would feel things with my left ear. It caught me completely by surprise.
I tried taking the T-coil headset off and placing it on the left ear, to see if the left ear was picking up any sound signals. I wasn't able to hear anything at all when I did that. I also lost the sound signal on the right side as soon as the T-coil piece was more than an inch or so away from the hearing aid.
So my conclusion so far is that the left ear vibration was picking up the train noise. Once I started paying closer attention, I noticed I felt the vibration most strongly when the train sped up. I've never before had any other experience outside the world of having the T-coil mode on.
Friday, December 2, 2011
Day 1 of Left Ear Stereo Hearing adjustment
I realized I might have to be changing the name of my blog now! Maybe to Mono PLUS.
I can't ever somehow magically recover the hearing loss I do have. This whole experience is to maximize what I do have, using both technology and awareness of how the brain works and can be tricked into operating.
Yesterday was the fitting of the hearing aid in the left ear. The first awkward moment was trying to figure out how to get the earmold in my ear! I have been doing it with the fit of the right side so long it actually took me a good minute or two to get things snug and fitted correctly.
I walked into the office with Nothing To Lose. I was nervous as hell. As I was waiting, another patient who also has the same split of hearing loss between right and left ears was leaving. Larry encouraged her to sit and talk with me for a minute to share her experiences, as she had been undergoing the gradual vibration increase since earlier this summer.
Talking to her gave me hope. To hear that someone else is going through it at exactly the same time, and to ask her questions that no one else could really understand. Things like did she have family support behind her about this? How did she feel only now discovering this was available? Did people notice a difference in her? Was she vocal about her improved hearing? How did it feel? Was it a noticeable improvement?
And then it was my turn.
There are not words to explain what went through my head when we hooked up the left ear, we turned on the hearing aid, and then I spoke.
And the world will never be the same again.
I was sitting there in the office with tears in my eyes - first from the shock of the vibrations coming in much more strongly than anything I'd ever had in that ear and it hurt like hell. But then tears of joy as I was sitting there in shock taking it all in.
It is nowhere near perfect hearing. But to have something, ANYTHING, change from the normal was an indication this just might work. To have something happen that I could point to and say A HA! That wasn't there before.
It'll make the migraines worth it. When I have the left hearing aid in I am super super SUPER sensitive to sounds. Just a louder than normal talking voice is enough to make my cover my ears. Larry recommended I take it out when leaving the office and I'm glad I did.
On to day 2.
I can't ever somehow magically recover the hearing loss I do have. This whole experience is to maximize what I do have, using both technology and awareness of how the brain works and can be tricked into operating.
Yesterday was the fitting of the hearing aid in the left ear. The first awkward moment was trying to figure out how to get the earmold in my ear! I have been doing it with the fit of the right side so long it actually took me a good minute or two to get things snug and fitted correctly.
I walked into the office with Nothing To Lose. I was nervous as hell. As I was waiting, another patient who also has the same split of hearing loss between right and left ears was leaving. Larry encouraged her to sit and talk with me for a minute to share her experiences, as she had been undergoing the gradual vibration increase since earlier this summer.
Talking to her gave me hope. To hear that someone else is going through it at exactly the same time, and to ask her questions that no one else could really understand. Things like did she have family support behind her about this? How did she feel only now discovering this was available? Did people notice a difference in her? Was she vocal about her improved hearing? How did it feel? Was it a noticeable improvement?
And then it was my turn.
There are not words to explain what went through my head when we hooked up the left ear, we turned on the hearing aid, and then I spoke.
And the world will never be the same again.
I was sitting there in the office with tears in my eyes - first from the shock of the vibrations coming in much more strongly than anything I'd ever had in that ear and it hurt like hell. But then tears of joy as I was sitting there in shock taking it all in.
It is nowhere near perfect hearing. But to have something, ANYTHING, change from the normal was an indication this just might work. To have something happen that I could point to and say A HA! That wasn't there before.
It'll make the migraines worth it. When I have the left hearing aid in I am super super SUPER sensitive to sounds. Just a louder than normal talking voice is enough to make my cover my ears. Larry recommended I take it out when leaving the office and I'm glad I did.
On to day 2.
Thursday, December 1, 2011
Full Hearing Potential
Hearing aid maintenance requires new earmolds periodically. I am in the process of relocating to South side of Chicago, so my Audiologist arranged for my records and earmold that was made to be sent to the Downtown Chicago office and I had an appointment on Wednesday to pick it up, and go on my way with life.
The new Audiologist, who has requested I call him just Larry, is a "maverick" of the hearing aid world, according to my old audiologist. Turns out he was her graduate mentor when she was attending Northwestern University.
His approach to new patients is different than that of the other 4 Audiologists I have had since I moved from AZ. He started a consultation type visit and about 20 minutes into it I had to cut it off since I had a job interview for a full time gig (I KNOW! It rains it pours. More on that in a sec). Before leaving, he had reviewed my hearing aid settings and "tweaked" two settings. One setting I liked better, and the other was atrocious. It was a mic and phone mode operating at the same time, and the background noise I don't normally hear on the phone was so loud I couldn't understand the caller.
We switched the settings back to what I previously had, or so we thought. I leave, and come to find out now the phone mode is on Automatic, and swapping in and out of phone mode on its own. The degree of error for the motion sensor is absolute crap and so I had to tell my team leader for my gig that I was going to have to go back in, and have it turned off. It took 2 visits back over the course of the afternoon to convince Larry I wasn't crazy about my Tcoil settings being on the hearing aid, and a call to my old audiologist cleared up the confusion. Life is good, except I had to have C call the company I was supposed to be interviewing at and tell them I had a medical emergency that was making me unable to keep the appointment.
Then things get interesting. Without the interview hanging over my head and clear from the office until I reached out to them again, Larry and I picked up the consultation again. He inquired into why I'd never been fitted with a hearing aid for my left side. I told him that according to my parents (just verified this with my mom last night) that it was thought that amplification of such a severe and profound hearing loss would just confuse and disrupt my right ear, so they never tried.
Larry wants to try. He bet me a nickel he could get the hearing in my left ear stronger than that in my right. Those of you who know me well and have had a conversation to my left ear without my knowledge, know how tall a claim this is.
He asked to do a hearing test on left ear to start fresh and come up with a plan. The hearing test didn't register audible comprehension of the sound, but it did register recognition of sound waves.We talked about what that meant in terms of potential - the physical parts are working, its the nerves that conduct the signals that are super super weak.
So.... for almost 30 years I've accepted something as just a matter of fact for my life. Now someone is saying that there's hope. That I could in fact have stereo hearing and be even more functional. The left ear will never be as good as the right, that we both agree.
In order to take this on, we're embarking on a Physical Therapy regimen for my left ear, to use a common analogy. We made an earmold last week, and I go back to pick that up Wednesday and bring one of my old aids with me. Making that earmold fucking HURT, where on the right side I've had them for so long it doesn't hurt at all. Larry will be turning the aid down significantly, to start to reteach that ear that it is supposed to be pulling some weight and start to respond to the auditory signals.
I'm so super super curious to see an fMRI of my brain right now. It would have been interesting to see before/after meningitis CT scans too - I am sure they're in my file somewhere but I couldn't find them in the records my parents had at home. This whole PT transition thing could possibly take 6 months to a year to start to really see long lasting results.
I'd be crazy not to try, right? At this point it is costing me about $100 for the new earmold, and then having to buy batteries for the older aide since they use a different size than my current aid.
I would like to think I've adapted pretty well to my disability. While on the surface it feels like YAY! more hearing! I will admit I hesitated once I got home. PT hurts. Any time changes are made to my hearing aid I have migraines for a week. The question then becomes.. will the pain net any measurable and long lasting result? Is this all just someone talking big dreams and that's why he only bet me a nickel?
The new Audiologist, who has requested I call him just Larry, is a "maverick" of the hearing aid world, according to my old audiologist. Turns out he was her graduate mentor when she was attending Northwestern University.
His approach to new patients is different than that of the other 4 Audiologists I have had since I moved from AZ. He started a consultation type visit and about 20 minutes into it I had to cut it off since I had a job interview for a full time gig (I KNOW! It rains it pours. More on that in a sec). Before leaving, he had reviewed my hearing aid settings and "tweaked" two settings. One setting I liked better, and the other was atrocious. It was a mic and phone mode operating at the same time, and the background noise I don't normally hear on the phone was so loud I couldn't understand the caller.
We switched the settings back to what I previously had, or so we thought. I leave, and come to find out now the phone mode is on Automatic, and swapping in and out of phone mode on its own. The degree of error for the motion sensor is absolute crap and so I had to tell my team leader for my gig that I was going to have to go back in, and have it turned off. It took 2 visits back over the course of the afternoon to convince Larry I wasn't crazy about my Tcoil settings being on the hearing aid, and a call to my old audiologist cleared up the confusion. Life is good, except I had to have C call the company I was supposed to be interviewing at and tell them I had a medical emergency that was making me unable to keep the appointment.
Then things get interesting. Without the interview hanging over my head and clear from the office until I reached out to them again, Larry and I picked up the consultation again. He inquired into why I'd never been fitted with a hearing aid for my left side. I told him that according to my parents (just verified this with my mom last night) that it was thought that amplification of such a severe and profound hearing loss would just confuse and disrupt my right ear, so they never tried.
Larry wants to try. He bet me a nickel he could get the hearing in my left ear stronger than that in my right. Those of you who know me well and have had a conversation to my left ear without my knowledge, know how tall a claim this is.
He asked to do a hearing test on left ear to start fresh and come up with a plan. The hearing test didn't register audible comprehension of the sound, but it did register recognition of sound waves.We talked about what that meant in terms of potential - the physical parts are working, its the nerves that conduct the signals that are super super weak.
So.... for almost 30 years I've accepted something as just a matter of fact for my life. Now someone is saying that there's hope. That I could in fact have stereo hearing and be even more functional. The left ear will never be as good as the right, that we both agree.
In order to take this on, we're embarking on a Physical Therapy regimen for my left ear, to use a common analogy. We made an earmold last week, and I go back to pick that up Wednesday and bring one of my old aids with me. Making that earmold fucking HURT, where on the right side I've had them for so long it doesn't hurt at all. Larry will be turning the aid down significantly, to start to reteach that ear that it is supposed to be pulling some weight and start to respond to the auditory signals.
I'm so super super curious to see an fMRI of my brain right now. It would have been interesting to see before/after meningitis CT scans too - I am sure they're in my file somewhere but I couldn't find them in the records my parents had at home. This whole PT transition thing could possibly take 6 months to a year to start to really see long lasting results.
I'd be crazy not to try, right? At this point it is costing me about $100 for the new earmold, and then having to buy batteries for the older aide since they use a different size than my current aid.
I would like to think I've adapted pretty well to my disability. While on the surface it feels like YAY! more hearing! I will admit I hesitated once I got home. PT hurts. Any time changes are made to my hearing aid I have migraines for a week. The question then becomes.. will the pain net any measurable and long lasting result? Is this all just someone talking big dreams and that's why he only bet me a nickel?
Saturday, July 23, 2011
Product Demo Review: Phonak CROS
Since this was my first exposure to this technology, I'm going to do a little recap information in addition to my actual demo review.
A little bit of information about the theory behind Cros hearing aids.
There are 3 kinds of Cros Aids:
1. Wired CROS -- hard wire from transmitter microphone to hearing aid on other ear
2. Transcranial CROS -- This is only possible in people with one entirely dead ear
3. Wireless CROS - Use of wireless frequency to send sound from transmitter microphone to hearing aid
There are currently 2 manufacturers producing Cros aids and transmitters, that I could identify. For my source, click below:
http://www.dizziness-and-balance.com/disorders/hearing/hearing-aids/CROS%20Manufacturers.htm
I tested the Phonak model... so the rest of my demo review will be off of Phonak's CROS. For more info from Phonak click here:
http://www.phonak.com/com/b2b/en/products/hearing_instruments/cros/overview.html
Most of my hearing aids have been Phonak models. The first thing that was pointed out to me was that my current Perseo model was not compatible. So, in order for me to take advantage of this technology I would have to get a new aid AND the transmitter.
Anyone familiar with digital hearing aids will not be shocked that the sticker price for the aid is several thousand dollars, and the transmitter is about half of that.
The Phonak rep was upfront about the battery life. Currently, I can get 10-14 days out of my batteries depending on whether I am sleeping with them in or having them out for extended periods of time. Both the transmitter mic and the aid use batteries, and their average battery life for each is 3-4 days. An 8 pack of hearing aid batteries averages about $10 so $260 per year (average of 1 battery every 2 weeks x 52 weeks) will now be $1,040 (2 batteries per week x 52 weeks) which is a quadruple increase in battery cost.
Based on my demo fit experience... it is worth the cost, both in aid and in battery cost. I had the baseline with the hearing on and the transmitter off. When the transmitter is turned on, there's a signal beep to let you know. Sound localization isn't at all trustworthy on just 20 minutes exposure. However.. sound on my left side where I am 100% deaf, was picked up and sounded quality wise as if someone was standing a comfortable near distance to me on my right side.
My doctor and the rep went outside the building where there was a construction site nearby, road traffic, and wind. The rep walked on my left side the entire way out of the office and it felt completely comfortable after I stopped trying to turn myself so that he was on my right side. The sound filter is a little more advanced in this aid, and if the noise was behind me it was filted our significantly more than if I was facing the sound.
Using this setup will be a retraining both of my ears, as well as my habits and way of interacting with the world. Now to start saving...
A little bit of information about the theory behind Cros hearing aids.
There are 3 kinds of Cros Aids:
1. Wired CROS -- hard wire from transmitter microphone to hearing aid on other ear
2. Transcranial CROS -- This is only possible in people with one entirely dead ear
3. Wireless CROS - Use of wireless frequency to send sound from transmitter microphone to hearing aid
There are currently 2 manufacturers producing Cros aids and transmitters, that I could identify. For my source, click below:
http://www.dizziness-and-balance.com/disorders/hearing/hearing-aids/CROS%20Manufacturers.htm
I tested the Phonak model... so the rest of my demo review will be off of Phonak's CROS. For more info from Phonak click here:
http://www.phonak.com/com/b2b/en/products/hearing_instruments/cros/overview.html
Most of my hearing aids have been Phonak models. The first thing that was pointed out to me was that my current Perseo model was not compatible. So, in order for me to take advantage of this technology I would have to get a new aid AND the transmitter.
Anyone familiar with digital hearing aids will not be shocked that the sticker price for the aid is several thousand dollars, and the transmitter is about half of that.
The Phonak rep was upfront about the battery life. Currently, I can get 10-14 days out of my batteries depending on whether I am sleeping with them in or having them out for extended periods of time. Both the transmitter mic and the aid use batteries, and their average battery life for each is 3-4 days. An 8 pack of hearing aid batteries averages about $10 so $260 per year (average of 1 battery every 2 weeks x 52 weeks) will now be $1,040 (2 batteries per week x 52 weeks) which is a quadruple increase in battery cost.
Based on my demo fit experience... it is worth the cost, both in aid and in battery cost. I had the baseline with the hearing on and the transmitter off. When the transmitter is turned on, there's a signal beep to let you know. Sound localization isn't at all trustworthy on just 20 minutes exposure. However.. sound on my left side where I am 100% deaf, was picked up and sounded quality wise as if someone was standing a comfortable near distance to me on my right side.
My doctor and the rep went outside the building where there was a construction site nearby, road traffic, and wind. The rep walked on my left side the entire way out of the office and it felt completely comfortable after I stopped trying to turn myself so that he was on my right side. The sound filter is a little more advanced in this aid, and if the noise was behind me it was filted our significantly more than if I was facing the sound.
Using this setup will be a retraining both of my ears, as well as my habits and way of interacting with the world. Now to start saving...
Thursday, July 21, 2011
New Demo - Phonak CROS
When visiting my audiologist yesterday, she made me aware of some new revolutionary things on the market!
Due to the advances in Bluetooth technology, there are now microphones that can be worn in a 100% deaf ear that then wirelessly transmit the sounds on the deaf side of your head to the hearing aid being worn in the other ear (at least this would be the set up for my case).
While the localization will be off because all the sound will be in one ear, having the ability to capture all noises definitely impacts my ability to hear MORE, especially in situations were being oblivious to noise behind me can be a safety concern.
I'm off to demo this at the office this afternoon when the rep comes in. I'll provide me feedback and thoughts!
Due to the advances in Bluetooth technology, there are now microphones that can be worn in a 100% deaf ear that then wirelessly transmit the sounds on the deaf side of your head to the hearing aid being worn in the other ear (at least this would be the set up for my case).
While the localization will be off because all the sound will be in one ear, having the ability to capture all noises definitely impacts my ability to hear MORE, especially in situations were being oblivious to noise behind me can be a safety concern.
I'm off to demo this at the office this afternoon when the rep comes in. I'll provide me feedback and thoughts!
From the Deaf to the rest of the World
Where to begin...
I felt a little more relaxed walking into the Advanced Course having spent the weekend in the Landmark Forum which is set up in similar time style. 12-13 hour days,and now I know the break structure and that it is in fact possible to make it through the weekend.
We started off in a MUCH smaller group than the Forum - down to a quarter of the size. There were some familiar faces from my March Forum, and also from my Integrity Seminar.
Walking in, I knew the things that I was struggling with since the Forum that wouldn't quite willingly take the back seat. I was still very very angry, upset, and emotionally invested in the fact that I could not obtain my Boat Crew certification with the USCG Auxiliary that I so desperately wanted. It has been a difficult summer in that respect since I am trying other activities within the Auxiliary and before I even begin I'm writing them off because they're not what I really want to be doing.
The Advanced Course takes 3 main missions that are the structure for the conversations within the course. One of those is true Mastery of Reality. This is what sunk in with claws and never let go. This came up for me on the tail end of Friday, and continued thru Saturday and Sunday.
At the end of Saturday, I had really really come face to face with this resentment I had. And I had a choice. I had the choice to accept that this story of what was happening was adding to my inability to move forward and to accept it as it was - nothing more, nothing less.
Looking back, Of course I wasn't feeling empowered and able to inspire people. I was attempting to do that (or so I thought) and on the complete opposite end of the spectrum I had made myself out to be the victim of something beyond my control. This dichotomy was completely ruining my ability to be effective.
The moment that has changed my life forever came Sunday afternoon, just before our dinner break. The conversation had started to talk about the power of language in our shaping of the world, and our relationship to other people. I felt moved to speak and got up to share.
I shared with the group a lesser known fact of the suicide rate of deaf male teens in their college years, and the source of that suicide rate. Being deaf puts an entirely different meaning on the power of word and language.
When you have sign language, it is only effective when you have others who can speak the same language. This is not the case for the large majority of the world. When you spend your day in and day out existence in a world that you can't communicate with, your sense of existence deteriorates. You feel invisible when you look out and you see a world talking back and forth with each other and interacting. You see this and when you try to reach out and capture it, you are either ignored or left confused because you lack the pieces of the puzzle to provide meaning to the exchange.
I took my hearing aid out to give a visual representation to the group. A Black and White, Language and No Language world. I explained how when it didn't work,I feel like all of the sudden I have no meaning in my life to communicate and share myself, and my ideas.
I had no idea my sharing of this would move so many people. I had the instructors of the course telling me that it had left them speechless. We left for our meal break and I had felt like I was having an out of body experience - I couldn't feel my hands, feet, and they were tingling. My brain was just quietly frozen, sounds passing before me but a sense of subtle disattachment.
People would come up to me and address me and thank me. It blew me away that being me, EXACTLY AS I AM, no more and no less, was able to provide this breakthrough connection for people. If I had been more deaf, I would not have the ability to function at the level I do and even be in the space. If I was less deaf, I wouldn't have had the issues that made me feel so strongly about this.
When we had our Tuesday night session that was open to past graduates and guests, I shared a summary. I shared a summary that I walked in with my condition of being hearing the something that the biggest obstacle in my way to being empowered and making a difference in people's lives. I shared the point where I had the realization that in fact my burden was actually a blessing beyong belief. And how it had felt to have that realization, to speak it into the world and give it intention and a declaration that I AM AMY AND I AM ME.
I am signed up for the Self Expression and Leadership course that begins in August and part of this course is to take on a project. Not only am I taking on a project, but I think I have found that BIG PROBLEM that is worth dedicating my life for. Something that will impact my life every day for as long as I live. Something that gives me passion beyond anything I thought I was capable of containing.
I didn't get my life back through Landmark Forum. I got a new life that is capable of anything.
I felt a little more relaxed walking into the Advanced Course having spent the weekend in the Landmark Forum which is set up in similar time style. 12-13 hour days,and now I know the break structure and that it is in fact possible to make it through the weekend.
We started off in a MUCH smaller group than the Forum - down to a quarter of the size. There were some familiar faces from my March Forum, and also from my Integrity Seminar.
Walking in, I knew the things that I was struggling with since the Forum that wouldn't quite willingly take the back seat. I was still very very angry, upset, and emotionally invested in the fact that I could not obtain my Boat Crew certification with the USCG Auxiliary that I so desperately wanted. It has been a difficult summer in that respect since I am trying other activities within the Auxiliary and before I even begin I'm writing them off because they're not what I really want to be doing.
The Advanced Course takes 3 main missions that are the structure for the conversations within the course. One of those is true Mastery of Reality. This is what sunk in with claws and never let go. This came up for me on the tail end of Friday, and continued thru Saturday and Sunday.
At the end of Saturday, I had really really come face to face with this resentment I had. And I had a choice. I had the choice to accept that this story of what was happening was adding to my inability to move forward and to accept it as it was - nothing more, nothing less.
Looking back, Of course I wasn't feeling empowered and able to inspire people. I was attempting to do that (or so I thought) and on the complete opposite end of the spectrum I had made myself out to be the victim of something beyond my control. This dichotomy was completely ruining my ability to be effective.
The moment that has changed my life forever came Sunday afternoon, just before our dinner break. The conversation had started to talk about the power of language in our shaping of the world, and our relationship to other people. I felt moved to speak and got up to share.
I shared with the group a lesser known fact of the suicide rate of deaf male teens in their college years, and the source of that suicide rate. Being deaf puts an entirely different meaning on the power of word and language.
When you have sign language, it is only effective when you have others who can speak the same language. This is not the case for the large majority of the world. When you spend your day in and day out existence in a world that you can't communicate with, your sense of existence deteriorates. You feel invisible when you look out and you see a world talking back and forth with each other and interacting. You see this and when you try to reach out and capture it, you are either ignored or left confused because you lack the pieces of the puzzle to provide meaning to the exchange.
I took my hearing aid out to give a visual representation to the group. A Black and White, Language and No Language world. I explained how when it didn't work,I feel like all of the sudden I have no meaning in my life to communicate and share myself, and my ideas.
I had no idea my sharing of this would move so many people. I had the instructors of the course telling me that it had left them speechless. We left for our meal break and I had felt like I was having an out of body experience - I couldn't feel my hands, feet, and they were tingling. My brain was just quietly frozen, sounds passing before me but a sense of subtle disattachment.
People would come up to me and address me and thank me. It blew me away that being me, EXACTLY AS I AM, no more and no less, was able to provide this breakthrough connection for people. If I had been more deaf, I would not have the ability to function at the level I do and even be in the space. If I was less deaf, I wouldn't have had the issues that made me feel so strongly about this.
When we had our Tuesday night session that was open to past graduates and guests, I shared a summary. I shared a summary that I walked in with my condition of being hearing the something that the biggest obstacle in my way to being empowered and making a difference in people's lives. I shared the point where I had the realization that in fact my burden was actually a blessing beyong belief. And how it had felt to have that realization, to speak it into the world and give it intention and a declaration that I AM AMY AND I AM ME.
I am signed up for the Self Expression and Leadership course that begins in August and part of this course is to take on a project. Not only am I taking on a project, but I think I have found that BIG PROBLEM that is worth dedicating my life for. Something that will impact my life every day for as long as I live. Something that gives me passion beyond anything I thought I was capable of containing.
I didn't get my life back through Landmark Forum. I got a new life that is capable of anything.
Tuesday, April 19, 2011
Deaf Proverbs
I was in a used bookstore last week and came across a book of Deaf Proverbs. I decided to hang onto it. A few of my favorites are below:
It pays to listen, but it costs nothing to see.
The ingredients of wisdom are open eyes, closed hands, and silent mouth.
It is easier to turn out the lights than stop gossip
Light travels faster and farther than sound.
You can lead a Deafie to a hearing aid, but you cannot make him hear.
The lip is the tip of the iceberg - The Rest is the body.
and my favorite...
Love is Deaf.
It pays to listen, but it costs nothing to see.
The ingredients of wisdom are open eyes, closed hands, and silent mouth.
It is easier to turn out the lights than stop gossip
Light travels faster and farther than sound.
You can lead a Deafie to a hearing aid, but you cannot make him hear.
The lip is the tip of the iceberg - The Rest is the body.
and my favorite...
Love is Deaf.
Tuesday, August 10, 2010
Slowly but Surely!
A new amendment is in the works for the ADA laws.... Senate has passed unanimously, and the House of Reps vote is next.
The story is here...
http://hlaa-advocacy.blogspot.com/2010/08/senate-passes-s-3304-by-unanimous.html
The story is here...
http://hlaa-advocacy.blogspot.com/2010/08/senate-passes-s-3304-by-unanimous.html
Saturday, January 23, 2010
DIY Hearing Aid Maintenance
Last weekend, I had my tubing crack.
I had several spare tubes at home, and spent the next 2 days trying in vain to get the tubing into my new mold. I had absolutely no success, and tried many different ideas.
I had to wait until Monday morning to put in a call to the Audio Dr to see if they could help me.
I get there... and it took 30 seconds. What a difference it makes if you have the right tools! I have a new Audiologist at this office, and she is all about personal independence and empowerment.
I have just finished ordering the tubing puller that she used to do the 30 second trick. I wanted to post the link here for anyone else who had difficulty attempting to replace tubes themselves, and wanted to have this handy.
http://www.hearing-loss-help-co.com/index1.html?products.html&1
I had several spare tubes at home, and spent the next 2 days trying in vain to get the tubing into my new mold. I had absolutely no success, and tried many different ideas.
I had to wait until Monday morning to put in a call to the Audio Dr to see if they could help me.
I get there... and it took 30 seconds. What a difference it makes if you have the right tools! I have a new Audiologist at this office, and she is all about personal independence and empowerment.
I have just finished ordering the tubing puller that she used to do the 30 second trick. I wanted to post the link here for anyone else who had difficulty attempting to replace tubes themselves, and wanted to have this handy.
http://www.hearing-loss-help-co.com/index1.html?products.html&1
Sunday, October 11, 2009
Hearing Aid Tax Credit Bill in Progress
I am really frustrated about this. My hearing is not covered one iota under insurance, and my most recent one purchased in March 2009 ran me $3600.
I got excited when I heard that a tax credit bill was pending in the House of Representatives, to possible go into effect with the Jan 1 2010 tax year.
Here is a summary of the bill:
Hearing Aid Assistance Tax Credit Act - Amends the Internal Revenue Code to allow a nonrefundable income tax credit of up to $500 for the purchase of a qualified hearing aid for an individual who is either: (1) age 55 or older; or (2) is claimed as a dependent of the taxpayer. Denies such tax credit to any taxpayer whose modified adjusted gross income exceeds $200,000.
Under these qualifiers, I would not be eligible for this tax credit. My hearing loss is just as impactful to my daily life. It is a financial cost that I have to pay 100% out of pocket, with very few options for affordability.
Why am I being excluded from being considered? I'm not making $200,000, and $500 seems low considering the actual cost of the hearing aids. I wouldn't be complaining about getting any form of compensation, but even if this passes, it does nothing for me.
Walk 4 Hearing
A week from today, I will be walking in the Walk 4 Hearing, a fundraiser walk sponsored by the Hearing Loss Association of America and Phonak Hearing. The goal for the 2009 walk series is $1 Million to give towards research and support of hearing loss awareness and research. They're definitely getting close, with nearly $78,000 currently raised. I just found out about this walk a few days ago, but I've made a donation myself, and will be doing the 5K in Lincoln Park starting with registration at 9am. If anyone is interested in joining me, please let me know and I'll get you the details.
If you'd like to make a donation to support me on this walk, you can submit your tax deductible donation here : http://hlaa.convio.net/goto/amyfox
Friday, September 25, 2009
Some Good Stories
There have been many occasions where my hearing interpretations lended themselves to comical relief.
One of the classics was a confusion over PJ's and bananas. Yes. I'm serious.
Back in my early tweens, had some friends over for a sleepover. One of the girls had neglected to bring her nighties, and so asked me if she could have some pajamas. I said "Sure!" and sprinted up the stairs from the basement. When I came back, I handed her a banana
She gave me a look of perplexion. She then said "No, I need a PAIR of pajamas". I thought to myself what on earth does someone need a pair of bananas, at 2am??. But I went back up stairs, and brought down yet another banana.
The friend gave a huge sigh of exasperation, and finally just tugged my pants. I then had the light bulb moment, at which the other 10 girls who'd now been watching bust up laughing.
We ended up covering the bananas in whipped cream and eating them, while watching movies with Devon Sawa. Oh, those were the days.
One of the classics was a confusion over PJ's and bananas. Yes. I'm serious.
Back in my early tweens, had some friends over for a sleepover. One of the girls had neglected to bring her nighties, and so asked me if she could have some pajamas. I said "Sure!" and sprinted up the stairs from the basement. When I came back, I handed her a banana
She gave me a look of perplexion. She then said "No, I need a PAIR of pajamas". I thought to myself what on earth does someone need a pair of bananas, at 2am??. But I went back up stairs, and brought down yet another banana.
The friend gave a huge sigh of exasperation, and finally just tugged my pants. I then had the light bulb moment, at which the other 10 girls who'd now been watching bust up laughing.
We ended up covering the bananas in whipped cream and eating them, while watching movies with Devon Sawa. Oh, those were the days.
Saturday, August 8, 2009
Hearing Everything for the first time... Again
It's been a couple months since I got the new hearing aid, but it still surprises me the new things I pick up. When my ipod picks up a song I haven't listened to in months, all of the sudden I realize I can understand more of the lyrics and pick up the more subtle parts of the songs. It makes me want to go back through and listen to every single song I have with fresh new ears. There's something to keep me busy for a while!
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