Hearing Life in Mono

Balance and Thoughts on being deaf

2011-12-11T08:33:00.000-08:00

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.

Week 1 Review

2011-12-09T09:55:00.000-08:00

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.

72 hour mark Observations

2011-12-04T09:22:00.000-08:00

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.

Day 1 of Left Ear Stereo Hearing adjustment

2011-12-02T07:54:00.000-08:00

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.

Full Hearing Potential

2011-12-01T16:09:00.000-08:00

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?

Product Demo Review: Phonak CROS

2011-07-23T09:30:00.000-07:00

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...

New Demo - Phonak CROS

2011-07-21T10:48:00.000-07:00

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!

From the Deaf to the rest of the World

2011-07-21T10:44:00.001-07:00

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.

Deaf Proverbs

2011-04-19T11:37:00.001-07:00

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.

Slowly but Surely!

2010-08-10T11:29:00.000-07:00

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

DIY Hearing Aid Maintenance

2010-01-23T20:35:00.000-08:00

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

Hearing Aid Tax Credit Bill in Progress

2009-10-11T15:35:00.000-07:00

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

2009-10-11T15:09:00.000-07:00

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

Some Good Stories

2009-09-25T18:53:00.000-07:00

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.

Hearing Everything for the first time... Again

2009-08-08T20:37:00.000-07:00

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!

Being a Deaf Driver

2009-06-06T20:50:00.000-07:00

Being deaf and a driver, there are some things to keep in mind.

1) We often can't hear sirens right away, and I know that when I got my license that was a voiced concern. As soon as I am made aware of the siren, I pull over.

2) Some states provide special license plates so that police officers are aware that there is a deaf driver in the vehicle. For Arizona, there was an H at the beginning of the license plate number.

3) Check your license requirements. For IL, because of my deafness the state required that I drive a vehicle that had sideview mirrors on both sides of the vehicle. To be honest, I don't think I've seen a car that was meant to only have 1 sideview mirror! On my NY license, it had on the back that I was deaf.

4) If you do get pulled over, immediately communicate to the officer that you are deaf. I am able to at least converse if I am given the chance to ask for repetition, so they don't have to mess with the pen and paper.

5) I fail the DUI walk in a straight line test while 150% sober, so any officer worth his salt will have his breathilizer handy. Or better yet- DON'T DRINK and DRIVE!

6) I fail the CDL hearing test in order to pass the Dept of Transportation Physical exam. At an old job we had physicals given onsite to our students and the Dr. gave me the test, as everyone was curious. Nice to know I can't be a pilot, or a trucker.

I am glad for the priviledge to drive. There are at least 26 countries according to the World Federation of the Deaf that do not allow deaf people to obtain a drivers license.

I can't hear in the dark.... but I see stars

2009-06-06T20:28:00.000-07:00

I thought I'd do another entry on lipreading. Sometimes it's hard for me to remember it's such a foreign concept to a world that revolves around sound. While lip reading is an attempt to fill in the pieces not heard, the more accurate term of my "listening" experience would be

"Speechreading: a term coined and used by professionals working with deaf and hard of hearing individuals, is a much broader activity, in which individuals utilize all available clues to understand what a person is saying. Speechreading does include lipreading, but also capitalizes on gestures and body language, facial expressions, situational clues, linguistic factors and any auditory input that is available to the individual." - Kaplan, H. 1996.

I would love to see an MRI of my brain someday. I already know I have huge gaps when it comes to hearing, and other functions, including my balance and sense of smell. However, I am overly sensitive to touch and actually have overall 20/10 vision (only 1 bad eye, go figure!). When looking at the definition of speechreading, this would make sense. I use these 2 senses much more acutely and more deliberately compared to others. They are the primary way I give my world meaning.

In the same vein, I am a really good guesser. I have to be! Much of speech conversation is contextual. I urge you to make a list of a scenario, say eating at a restaurant. Now make a list of any of the common spoken interactions you might have with your waiter over the hour that you're in the restaurant. There are some you expect to come at the beginning, such as drink orders. You'd expect a dessert order or a "are you ready for the check" at the end of the meal.
You may be surprised how quickly that list of normal interactions may grow.

Now imagine that a waiter comes along and says something completely out of the ordinary to the table, like "I won the lottery!" I can pretty much guarantee that I'd have no clue what the person said the first time I "heard" it. That sentence does not compute into my memory bank of typical restaurant interactions. Once the confusion registered, I would probably need to ask for a repeat/or clarification now that my computation did not register a logical auditory match.

This is just one example, but there is a memory bank for virtually any set of experienced spoken interactions. I freely admit that I do horribly in situations like the grocery store, at noisy restaurants by myself, and airplanes/airports.

Deaf Do's and Dont's

2009-05-14T19:21:00.000-07:00

Every person is different, and some things will be different for sign only deaf compared to lipreading and oral deaf. Here's just a few of my personal Do's and Dont's based on experience.

Do:-

- Speak in a conversational tone. I learned to read lips moving at regular pace, not super exaggerated or yelling.

- Make eye contact with me. That's how I can tell we're having a conversation!

- Be attentive in your body language. I can't always pick up the smaller vocal intonations that go along the flow of a conversation, and will trust your body language before your voice.

- Speak Directly to me, instead of nominating someone in the group as an "interpreter"

- Take turns talking in a group, and give me a chance to respond - I can only read one set of lips at a time

Don't:
- Throw something to get my attention. Have some respect for my safety - I walk to you to talk, please do the same to me.

- Cover your mouth with your hands or other objects while talking to me.

- Tell me "Never Mind" or "I'll Tell you later" if I ask you to repeat something. No doubt you'll forget, and I'll just be even more frustrated.

- Get mad at me for leaving the group and sitting by myself near the front at a gathering with speakers and no captions. Sitting in the back where I can't hear is a waste of my time, and you won't appreciate my interruptions to ask what is happening.

- Touch my hearing aid without asking. It squeals in my ear, not yours, and is very distracting and annoying.

- Expect me to hear you well if you are in a dark corner, in the shadows, or in another room. Save your breath!

Deaf Culture Controversy

2009-05-11T19:46:00.001-07:00

Galludet University is considered by most one of the most visible movers and shakers of the deaf culture and community in the United States. An article came out by the Washington Post in 2006, and still to this day I keep coming back to it because it really hits home for me. Click here for the Article

The essence of the article looks at the debate of deaf "purists" against those who acknowledge their deafness but are able to integrate into the larger society by use of voice and assistive technology. Basically, their claim against Fernandez was that she was not "deaf enough". I continue to this day to be completely outraged at this mindset.

I had my own personal experiences with this while living in Rochester, NY. I moved there partially because Rochester has the highest number of deaf per capita in the United States. I grew up only knowing 1 other deaf person for the early early years of my life. After moving to Phoenix with my family when I was 10, I was the only deaf person I knew, period.

It is hard to explain what it feels like to be singled out because I was deaf, but then to also try to fit in with others and be held back. I had speech therapy almost every day. Getting pulled out of class and having to miss recess was just the beginning. The classrooms tried to make me wear an FM Loop System, until I flat out refused to put it on. Imagine wearing a black taped coil the thickness of your thumb around your neck, and the teacher having to wear a special microphone. At 10 years old in a new city, this was overwhelming.

I wanted to play sports like other kids, but I had to be careful when I wore helmets playing softball because the sweat was bad for the hearing aid. I wore latex protectors, but they only did so much. Even being able to hear the coaches from the outfield was difficult. I am a balance hazard to myself on a bike or skates, and have had more than one run in with the black asphalt or a concrete wall.

Back to Rochester. I was trying to brush back up on my ASL, and so I went to the Rochester School for the Deaf to meet with a teacher and see if she had room in her class for me. Her response when I tried to communicate with my rusty sign language skills was to huff away when I had to resort to finger spelling, and when I was talking as I was signing, she looked absolutely mortified.

I am grateful to Rochester Institute of Technology's National Technical Institute for the Deaf for helping to fund part of my graduate education. I got a federal grant to cover 2/3rds of my grad tuition, since I qualified for their severely deaf cap. But I was shunned there, too. I had a student in my class who used an interpreter, and they communicated with me as well. They were helpful to have in case I missed part of the lecture, I could look and the signing usually had a 5-6 second delay, helping to fill in the gaps. But when I tried to make friends, they were not willing to compromise at all. Some hearing folks were curious about sign language and liked to practice on them, but it wasn't the same as feeling diverse friendship that I do among other different groups of people.

Whew. Mostly, I think my resentment comes from the need for people to feel like they have to define themselves by their deafness. They feel threatened when someone challenges their comfort zone and boundaries, when really its just perspective.

For me, I get more self conscious when people attribute some of my behavior to other possible causes, because I don't always broadcast that I'm deaf. I have been told more than once that at first impression I can come off snobbish because I don't talk a lot in a large group; this is just simply because it takes so much effort and concentration to follow the conversation, there's no way I can stay with it enough to even join in. Any groups over 3-4 people (and this being people I know really well) can be exhausting. Add in a dim restaurant environment, and I might as well be playing Balderdash, and just have random one liner conversations.

What is a T-coil?

2009-05-09T20:08:00.000-07:00

When I get requests I will definitely get timely posts up - for now, I'm not sure what you the reader may or may not know about hearing aids in general, so here is a little bit of information about a feature on most hearing aids I find absolutely essential for successful communication via telephone and listening to my iPod.

In my previous post, I mentioned my purchase of a T-Coil Headphone. What is a T-Coil?

This link from Galludet University (a deaf only university in Washington DC) provides a really good general overview, as well as highlighting some technology issues that I personally experienced as a kid in the classroom.

Product Review: T Coil Headphones

2009-05-09T19:54:00.000-07:00

One of the greatest frustrations with many assistive hearing products is the relatively few producers, which result in higher prices and often, mediocre or lower quality. I was pleasantly surprised to find the market is slowing changing when I ran across TecEar (www.tecear.com)

I recently purchased one of their iNoiZ-Music T-coil inductive ear hook stereo earphones. The price was the lowest I've ever had to pay for this type of earphone, by almost double the previous lowest price!

I have been extremely pleased with the high quality of the t-coil. The only complaint I would have would be the the coil is literally just inches thick, and has a tendency to get caught in my hair or fall off the back of my ear if I move quickly.

Since I only wear one aid, I purchased the Mono model. Shortly after my package arrived in the mail, I was showing off the t-coil at work to a friend who has experience in mixing tracks and recordings. That is incidentally what gave me the idea for this blog, since most music is mixed and balanced to be played in stereo, or heard by both ears.

The conversation about how the music sounds in mono versus stereo hearing might just be the next blog post!

An Exercise in Lip Reading

2009-05-09T19:24:00.000-07:00

This is what I get asked about by nearly everyone almost immediately after they learn I am deaf. How does it work? DOES it actually work? Can you hear me when I cover my mouth and mumble? To the last one - of course I *hear* you, but what you are saying does not come out as an intelligent, understandable language.

I found this exercise on the website for Australia's Royal Institute for the Deaf and Blind. Just a sidenote, both Australia and the UK are light years ahead of the USA in terms of advocacy, education, awareness, and resources for the deaf community.

From: http://www.ridbc.org.au/

Lipreading

Only 50% of the English language is visible on the lips. Lip reading is very difficult, and requires great concentration. People with hearing impairment sometimes use lip reading to supplement their existing hearing.

Having a hearing impairment doesn't always mean that everything gets quieter. Often, a hearing impairment means that you miss out on certain sounds, but can hear others. For instance, you might be able to hear vowels like "o" and "u" (which are lower frequency) but miss sounds like "s" or "f" (which are higher frequency).

Read the following sentence, preferably outloud to a friend or family member:

"...en ou av iid co-o-rin tur o sh"

What do you think that sentence was supposed to mean?

It means:
"When you have finished colouring, turn over your sheet."

New Blog

2009-05-09T15:58:00.000-07:00

I started a separate blog since I really feel compelled to speak up as an advocate for those who see life in a different way as a result of hearing loss, but also not from a "woe is me, I'm deaf" perspective. Up until Thursday night of this week, I had not met another at least 50% or more deaf person who is able to function and interact in "normal" society. It can be extremely lonely at times.

Ignorance can be uncompassionate. So this is my way to give yet another glimpse into my world, but also provide information for those curious about deafness, deaf culture, resources, and anything else that comes up. Feel free to submit questions and I'll happily address them.

Thanks for continuing to read!