Life In Mute: The Progression Towards Silence

Director, Harlan Schneider, Needs Your Support as He Pushes for Fully Captioned Films

2011-02-17T21:55:00.000-06:00

Los Angeles film director, Harlan Schneider, is an advocate for fully captioning films for the deaf and hard of hearing. His latest film, "Claustrophobia," is currently available with full captions via Video on Demand.

According to Mr. Schneider's story on Indiegogo.com, "“Claustrophobia” is a recently completed psychological thriller about a young deaf man whose world closes in on him when he becomes entangled in a nasty real estate dispute with his sadistic next-door neighbor."

The film stars actor, Russel Harvard, who has had roles in "There Will Be Blood" and the soon to be released, "Hamill."

There are more than 30 million deaf and hard of hearing individuals in the United States and these days, everybody watches T.V. I have been ranting, raving, screaming, cussing, moaning, and complaining about the lack of captions available for quite some time. I even started the Facebook Group, Citizens Against Films without Subtitles for the Deaf and Hard of Hearing. I have not had much of a chance to market the group or try to garner any kind of following, but I have gained a few fans just by sharing my concerns and I hope I'll gain a few more after posting this! It's time for the Deaf community to come together!

The Deaf and Hard of Hearing community can not just stand by and hope that the film industry will come around. Their are 30 million of us and we are all consumers; if they want us to be customers, then they will have to caption their films. If they won't do it voluntarily, then it is about time we demand it of them! And that is exactly the point, we have to demand it. If there is no demand, then why would they bother? While we may argue about Deaf politics amongst ourselves, this is one issue we should all be able to agree upon. I don't see how it's any different than forcing a business to put a handicapped parking space close to the front door of a honky tonk bar. It may be entertainment but we are willing to pay for it if you make it accessible. We are a powerful consumer base with money in our pockets and it just doesn't make sense for the industry to ignore us if they know there is a demand! Say only half of those people are in the target market for my product, I'd be willing to spend a few extra dollars to attract 15 million new potential customers.

Harlan and his crew are trying to earn $5000 towards promoting their film. Mostly they want to be able to show it all over the country and pay for his and Harvard's travel expenses so that they can go along and promote the movie.

Give what you can, whether you have cash in your pocket to donate, a blog to pass it on, or even just sharing on your Facebook and Twitter pages will help! It's time we all do whatever we can to get all video captioned and accessible!And please watch the film if it's available on your service!

You can access "Claustrophobia" via VOD:
CHARTER AT&T U-VERSE RODGERS (CANADA) DISH VOD MEDIACOM SUDDENLINK RCN EASTLINK COMMUNICATIONS BRESNAN FRONTIER WAVE BLUE RIDGE ATLANTIC BROADBAND BEND ACCESS COMMUNICATIONS (CANADA) HTC CLICK HARGRAY CINCINNATI BELL SOURCE CABLE (CANADA) NORTHWEST TEL CABLE (CANADA) BLUEWATER (CANADA) SEASIDE (CANADA) NTELOS JAMES VALLEY ENHANCED TELECOM CABLE CABLE (CANADA) VERIZON FIOS (BEGINS FEBRUARY 11)

And when you're done with that, hop on over to Facebook and join the group, " Citizens Against Films without Subtitles for the Deaf and Hard of Hearing.

Feet on Both Shores or Stuck in a Row Boat Between

2010-10-07T21:41:00.000-05:00

As a late deafened adult with progressive hearing loss, I often find myself with feet on both shores. By that, I mean that I am hearing in many aspects, yet I am not. I struggle to belong in the world of the hearing.

Year by year, month by month, week by week, even day by day, I find it harder to survive; yet I don't feel comfortable or accepted by the deaf community because I do not fluently speak their native language (ASL) either.

Without my hearing aids, I am severely and somewhat profoundly deaf. With them, I am moderately deaf. I cannot discern the direction of speech and I miss a lot of what is said around me. Without them, I cannot understand speech at all. I can read speech from your lips if I am aware of the context; I can decode your body language and facial expressions to understand your tone, I can put it all together and manage to do what is expected of me, but I know that I miss a lot.

As my loss progresses, I try to become more involved in the Deaf community. I am learning ASL and SEE. I am trying to decipher the ridiculous politics involved with the Deaf community. I have sought out my own local Deaf community and found them to be practically non-existent unless I wish to drive an hour one way. I have taken steps to ensure my employability (is that a word?) by earning teaching certifications in deaf education and learning sign language. I have volunteered at deaf schools and the Deaf Action Center only to be turned down or completely ignored. I started this blog in an effort to educate my friends and family and to reach out to the online Deaf and Hard of Hearing communities as well as chronicle my experiences so that others who follow in my path or who find themselves in a similar situation might have some sort of guidance.

But here I am, still wondering if I'm hearing or Deaf, still trying to find my place in this world, wondering if I have my feet on both shores or if I'm just adrift at sea in a row boat in between.

Deaf for a Day...Sorta

2010-08-12T10:59:00.000-05:00

If you are a regular reader of my blog then you know that I'm not completely deaf. I have a progressive loss that stems from moderate to borderline profound. My speech discrepancy levels are pretty bad but I get by fairly well with my hearing aids and only have a hard time in noisy places (ummm, pretty much anywhere in public) or with certain soft voices or accents. I am also an excellent speech reader even though I've had no formal training.

You probably also learned that I hate hate hate hate hate hate hate being without my hearing aids. In fact, I hate it so much that I would risk loosing them before I'd go into a swimming pool full of 3-year-olds without them, that I would run through my house tripping over fake wooden food, light up Dora shoes, and yesterday's newspaper just to change a battery before the cognitive dissonance of the unbalanced brain sets in, that my hearing aids are the first order of business and the last order of business of every day and every night of my life!

And you might also recall that I promised at some point in the not so distant future (probably while I was drinking), that I would go a day without my aids (I mean, I promised it while I was drinking, probably, not that I'd deaf and drink in public, well you know what I mean...I hope). A day that included the public...and so that day has finally come and gone.

Why now? Well, I needed to get my ICom repaired before the warranty expired and I only had a week left. I didn't know that they would send if off, then get it back, then tell me I had to leave my aids with them for half a day while they found some free time to reprogram everything. Have I mentioned that it's a 45 minute drive to see my audiologist?

Well, I wasn't exactly backed up against a wall here; I have two back up pairs of Oticon ITCs; both are in excellent condition; although, neither pair is sufficient for my everyday needs. I currently wear behind the ear aids which are quite a bit stronger than the ITCs (in the canal). Nevertheless, I reluctantly remembered the promise that I made my readers and decided that this was just as good a day as any to lay it all out there. I say reluctantly because taking out my hearing aids can be disorienting, it almost feels like I've been drinking at first and it takes a few uncomfortable minutes to adjust to the world of silence. I suppose it's also a cognitive struggle; my brain is screaming "Hey, this ain't right! Fix this now!" But you do get used to it and the feeling of inebriation subsides after awhile.

My morning routine was not really affected by my deafness. I told my daughter goodbye and sent her off to school with her dad. But when I got in the car to drive to the audiologist's office, I started to put my hearing aids in. It wasn't so much that I felt I needed them to drive as that I didn't want to drive 45 minutes without the radio on. God, what would I do without music...I might have to think about stuff and that's not always a good thing. I usually get to thinking and that means I'm thinking of which sale is where and what I need to buy and how I don't have any money but if the sale is good enough...well, you probably know what I'm talking about. Or I start thinking about how bad food is these days and how processed food is going to kill us all and how there really isn't much on the grocery store shelves that's not full of poison and how I should start reading the labels a little closer; then I get paranoid. So you see, music is a good thing.

I solved the problem by leaving the aids out and turning the music on anyway. I realized that I could hear it just a little so I cranked it up. I had to turn it up about three quarters of the way but I found that it sounded even better because I could not hear the background noise of the road and the big trucks whizzing by me. It was actually a nice drive. Of course, after about 10 miles into the drive, I remembered that I should probably make a little better use of my peripherals and I checked the mirrors every few seconds just to make sure there were no emergency vehicles ridding my tail.

When I rolled up to the office, I was once again tempted to put my aids in, but I stopped myself. These people specialize in the hard of hearing right? They should expect that I can't hear them when I'm standing there holding my hearing aids in my hand. And I was right, it was pretty uneventful. The lady at the desk spoke to me and I read her lips. She said she would call when they were ready. I didn't say what I was thinking, but you know I was thinking, "and how do you expect to have a conversation on the phone with me if you have my hearing aids?"

I spent the next hour in Marshall's shopping for new sheets and trying to waste time. And for once, it didn't bother me that I got the broken cart, you know, the one that goes "click, click, click, click" when you push it. I could feel that it was clicking, but I couldn't hear it. The store was unusually quiet. Somebody may have spoken to me when I came in; I didn't hear them if they did. I knew I wouldn't, so I just put on my happy face, the one with the exaggerated grin that makes me look like a horse sniffing a carrot and I did the dip and nod at anybody who looked my way--classic deaf, the dip and nod, I'm a Master Dipper!

After a few minutes, I felt the soft buzz a distant bass line humming through the air; I couldn't tell you if it was pop, country, gangsta rap, or Irish folk music. I loaded my buggy up with pillows and was on my way to the register, free and in the clear; nobody had tried to speak to me (I think), no "Can I help you?" I had avoided it all, sweet success...until that last ten feet when I barely heard and mostly saw her turn and say something that sounded suspiciously similar to Charlie Brown's teacher. It was too late for the dip and nod, the murmur was too long for an "uh huh" response; I had to think of something, so I just blurted out, "I'm sorry; I'm deaf and I have no idea what you just said."

I always love to watch the reactions when you tell somebody you're deaf. Most of the time, they drop their jaw and then they shut up, give you a polite smile and go on about their business. But this lady was different. She immediately moved around to the front of me, looked me in the face, apologized, and repeated slowly and loudly what she had said. It was a nice reaction; although, I never expect people to apologize for my deafness. How are they supposed to know unless I tell them?

My next stop was Half Price Books (see a pattern here? Yep, I'm cheap!). I didn't hear any background noise in the store, not even a murmur. Books stores are like libraries, I guess it's habit. People see rows of books and they automatically assume silence. When I checked out, the girl at the register tried to speak to me, and again, I had to tell her I was deaf and needed to see her face. She had the regular, shut down and get this over with, kind of reaction. I wasn't surprised; that's what most people do when they don't know you.

I checked my phone when I got in my car. There was a missed call from the audiologist office. I didn't bother listening to the voice mail, even on speaker phone and crammed up to my head, I couldn't have heard it. I picked up my aids and again used speech reading to get through the conversation with the lady at the desk. I had planned to put them back in as soon as I got them back, but I remembered the sweet sound of the country music without the interference of road noise and I left them out for the drive home.

So truth be told, it wasn't that bad and next time I will challenge myself with new and more complicated situations; we'll see where it goes.

Also check out the Life In Mute Blog t-shirts and other deaf wear at my cafe press shop!

Random Act of Cowardice

2010-07-10T11:53:00.000-05:00

I know I started a section entitled "Random Acts of Deafness," but today was more of a suck it up and bear it kind of day so I'll call this one "Random Act of Cowardice, " and you can bet on seeing more "Random Acts" soon.

My 2 year old daughter was invited to a birthday party by a classmate at school; nothing random about this, she gets at least one a month.But today was not an easy day for me. This was a pool party.

Normally, my husband would take our daughter but he was sick this weekend so I had no choice. Thirty minutes before the party, most moms would be standing in front of the mirror asking, "does my rear hang out of this swimsuit?" Not me, the swimsuit wasn't the issue. My problem is the $6000 pair of hearing aids I have to wear. No, they don't make my ears look fat. But they certainly presented a problem.

I faced two harrowing choices...I could wear my very expensive hearing devices into a swimming pool with a dozen screaming, splashing toddlers, or I could take them out and enter the pool full of strangers and their children almost completely deaf.

I'm not usually much of a gambler and I imagine that most Deaf people would laugh at me for this but I decided to risk it. I gambled $6000 and I wore my hearing aids into the water. I just can't stand to be without them and I hate having to explain to people that I wear hearing aids and that once I remove them, I hear nothing. I hate the look on their faces, the pity, the false empathy, the confusion, the embarrassment as they struggle with what to say next. The feeling that some poor kid could be drowning behind my back and I'd never know because I can't hear his struggling, gurgling, cries for help. I hate it all.

So you can call me a coward but I'd rather gamble than deal with my deafness in the midst of strangers.

...it paid off this time, I managed to avoid the splashes, and my hearing aids and my pride both survived!

deaf with a lower case d

2010-05-15T23:44:00.001-05:00

One hot summer night in Austin, Texas, my best friend, Andrea, and a few of her friends were bar hopping down 6th street. We decided to cut through one open bar to get where we were going, but something strange happened. We entered the patio of a corner bar and were struck with dead silence. We proceeded into the open air bar and couldn't hear anything but the band playing. People were lined up for drinks at the bar at least 4 deep, they were dancing to the beat before the band, congregating in groups. What the hell? Total silence. I looked up, saw a banner hanging from the ceiling...it was a convention for ASL speakers...if you can call them speakers. It was like time slowed down as we made our way through the crowd. No one was speaking but everyone was conversing. Nothing was out of the ordinary but everything was different.

I'm deaf...medically, legally, functionally, and whatever else you want to call it. I'm deaf and I have been for over two decades. But I'm deaf with a lower case d and that's different than being Deaf.

In the good old U S of A we have something known as Deaf culture. I'm not a part of that. To be considered a member of that culture, one's primary means of communication is American Sign Language (ASL). The nature of my hearing loss allows me to function in society with the help of hearing aids and because of those hearing aids, I haven't had to rely on ASL. I only know one person, my cousin Kelly, who is fluent in ASL (aside from a few deaf students) so at this point I haven't bothered to learn much of it and instead I've struggled to hold onto whatever residual hearing I have.

My hearing is, however, progressive, which means that it gets worse over time. When I first learned this, I didn't really have a clue what it meant and I ignored it. But as time passed, and the numbers changed, the power of the aids increased, I realized that my hearing days are numbered.

I began learning ASL in 2003. My first class was through the Deaf Action Center in Dallas, Texas. I spent only a brief six weeks there learning the basic vocabulary and grammatical structures of a foreign language sitting next to my husband (who learned it much faster than me). I walked away with a certificate but really knowing very little and I upgraded my hearing instruments and went on my way.

When my daughter was born, my speech discrepancy levels dropped considerably and Blake and I chose to teach our baby signs. She was an early language developer, speaking around 100 words by her first birthday, complete sentences by 15 months, but she learned dozens of signs and at almost 3 years old now, still uses several of them.

I recently decided that learning ALS is not an option for me but a must. At some point in my life, the spoken word will be obsolete and I will have to find another way to communicate. And I'm terrified! Can I learn this language? No doubt! Can I learn it quickly? No doubt! Will the people I love learn it? I doubt it. How will I communicate with them? How will I grocery shop, order a pizza, buy a car? How will I have a teacher conference with my daugther's teachers? How will I explain to the girl at the mall who wants to help me that I can't understand her? Do I wear a t-shirt that says "I'm Deaf!" What happens when I get pulled over for speeding and the cop can't communicate with me? How will I hold a job and provide for my family? How do I live a normal life? I already rely on speech reading so much...I'm terrified of the future!

I recently passed my first test to become certified to teach the deaf and hard of hearing in Texas. Before I can receive my certification, I have to become fluent in ASL. So that's what I'm doing. I've picked up my studies again and hope to take the test next summer. Once I pass that test, I will be able to teach the deaf and you don't have to hear to teach the Deaf! By learning ASL, I will also open the doors to another culture and become a part of it myself.

Not only will I be deaf, I'll be Deaf. And maybe the next time I happen onto that bar in Austin I'll be invited as a guest rather than a crasher wondering what the eerie silence is all about.

Allegrophobia

2010-01-05T21:09:00.002-06:00

Okay, so there isn't really a clinical term out there for the fear of being late, but somebody with a pretty funny sense of humor dubbed it Allegrophobia at some point in time. I have always been annoyed by late arrivals and the idea of arriving late to an appointment, work, or class is strong enough to keep me up all night.

This fear is compounded by the fact that I cannot hear an alarm clock. So how is it that the deaf and hard of hearing ever get anywhere on time in the wee hours of the morning? For me, it was a struggle for many years. As far back as high school before I even realized that my hearing loss was a problem, I had trouble waking up on time. I had a little bedside alarm that would sound off bright and early waking up everyone in the house except for me. Apparently this was a problem for my dad. He's not the kind of guy that just runs out and buys gifts to show you he cares, but I have a foggy, just rudely aroused from an awesome dream, kind of memory of my dad, sitting on the edge of my bed bouncing it up and down a little telling me to rise and shine. Then I heard it, the terrible clanging bang of the gift he was bringing me.

He handed me a shiny brass alarm clock with two bells on the top. That thing was loud enough to wake the neighbors. I didn't know it at the time, but my old alarm clock was waking him up every morning while I kept on snoozing. He had run down to the drug store and found me a clock that I could hear, a clock so annoying I would jolt out of bed like somebody hit me with a cattle prod.

I carried the golden dreamslayer with me for years until somewhere along the way it was lost, or broken, or most likely thrown against a wall or beat to death with my own bare fists. It's hard to sleep at night when you know you have to be somewhere the next morning by a specific time. Marrying my husband was a blessing because he was there to wake me up and for awhile I didn't have to stress about it. My dog, Cotton (so named because she looks like a dirty old cotton bowl that's sprouted out of the red Texas sand where I grew up) is pretty good about waking me up too. She doesn't like the sound of the alarm clock.

But eventually, my husband had places to be much earlier than I did and Cotton is not always reliable. For awhile I used a dual alarm clock that had double alarms set five minutes apart. If I didn't hear them, Cotton would wake me up just to get me to turn them off. I also got pretty good at just knowing; most of the time I would think to myself, I need to be up by 7 and I would just automatically wake up at 7. Not the trustiest way of doing things yet it usually worked. But eventually a time came when that simply wasn't enough.

I had just given birth to Lillian and paid a visit to my audiologist to buy my second set of Oticon hearing aids. I was discussing my problems about hearing the baby monitor with her when she introduced me to the Sonic Alert System. I can't believe I didn't discover this sooner.

It's an alarm clock that sounds off at 113 decibles and not only that, it will shake the whole bed until you turn it off. And it acts as a receiver for other products including the baby monitor, door bell, fire alarm, and stove timer. It can also be connected to any regular bedside lamp that will flash until you hit the shut-the-hell up button. She used my insurance to pay for the whole system. I have flashing strobe lights that plug into outlets throughout my house, the super clock, a vibrating bed, a flashing lamp, and a noise receiver in my daughter's room. If the doorbell rings, the baby crys, or the alarm goes off, so do the strobes, shakers, and lamps. And finally, I can rest in peace.

Random Acts of Deafness (1)

2009-11-18T22:26:00.000-06:00

Random Acts of Deafness is something I am creating in an effort to catergorize all of the unconventional experiences I encounter as a hard of hearing person. In these posts I'll give you an idea of things that happen randomly in public as a result of or a product of my deafness. I hope to post these as they happen or as I remember past experiences.

Episode 1:
I was recently interviewed for a job. The interviewer asked me if I wanted to answer phones all day. I responded that phone work is difficult for me because I am hard of hearing. Before I even finished the sentence, the interviewer stood up to leave, exclaiming, "That's all I needed to hear." ...are you kidding me? That's like saying, "See what I mean?" to a blind guy! They did bring in someone else to interview me for a position that was more suitable for me. But seriously, did he have to use those particular words? A more sensitive person could have been easily offended; to me, it's just another Random Act of Deafness.

Episode 2:
On a lighter note, I took my truck to be inspected. My hair was pulled up into a pony tail so my hearing aids were visible if one were to actually look at my face long enough to observe anything. Autoshops are always noisy, but I managed to figure out that the man behind the desk wanted me to go out to my truck so he could get the vehical specs and drive it into the shop. He had to repeat himself plenty of times!

I waited inside, keeping busy with the difficult decision making process that one only encounters when faced with two magazine choices: Family Circle or Deer Hunter. At least they didn't complicate matters by throwing in People or Golf Digest. After about 30 minutes, a shadow fell across the rifle ad in the hunting magazine. I saw that he was calling my name and heard it about the time I looked up. Standing in front of me, the guy from behind the counter waited until he had my full attention, looked me directly in the eye, and said, "Heather, your truck is ready."

I was surprised that a random guy in a noisy autoshop would recognize that I couldn't hear him unless I could see him, make an effort to come across the room, get my attention, and verify that he was being heard. I'm not sure if he was accustomed to dealing with a hard of hearing person in his life or if he is just man with both common sense and compassion. It was a pleasant surprise and another Random Act of Deafness; one that happens so very rarely.

...until next time,

How It All Got Started, Part III

2009-10-22T23:23:00.004-05:00

I left my sleezy, albeit, super-fun bartending jobs, yep, all of them (at one point, I had 3 going at once), after I became seriously involved with the man that is now my husband. For some strange and unknown reason, he had a problem with me working in dive bars until three in the morning.

I was unsure of the next step, was finished with junior college, and decided it was time for a full time job. So I took employment with a compliance company. It was my job to learn all of the interstate transportation laws and arrange the necessary travel documents for truckers rolling over state lines. I liked this job. The work was simple in that it was routine, yet it was challenging in that each state has different regulations and each caller knew less and less about them than the one before him. I was a problem solver and a helper; it felt good to know that I was responsible for getting hemorrhoid pads, Corvettes, and salty hams from one side of the country to the other. But the most challenging part of the job was that it was phone work and it was competitive.

How it worked was that truckers called in and said, "I need to get a load from point A to point B, what do I need to be legal?" I would decipher the laws and contact the different state agencies, arrange for the permits, and get them to the drivers in specific locations along their travel routes at specific times without wasting any of the drivers time. Not a good thing to have a driver sitting at a truck stop in BFE, waiting 5 hours for a permit. Time is money, right?

We had a ginormous room with about 60 compliance specialists manning the phones and our computers kept up with the number and length of calls, $$$. It became a competition between the employees to see who could end the day with the most permits and the most cash for the company...I'm just a little bit maybe sorta competitive, so I enjoyed it; I always got the most; I was good, real good.

All the states have different regulations. You had to know your stuff and if you got it wrong...well, there are several states that don't do redos. If they print it, you pay for it, and they don't reprint without another fee. We're talking $80 or so for a permit in some states.

I got a call from a lady in Oregon needing a permit to bring her driver into the state. Oregon is one of the hard, expensive states. Lots of rules, no refunds. If the permit is not perfect, driver gets a ticket, no typos allowed, no leniency. Nobody wants a pissed off truck driver knowing the address of their place of employment, so you better get it right. She called the name of the trucking company, The Nut Company. When the driver showed up at the arranged pick-up destination to get his permit, he called me immediately...and a few other choice words.

It was supposed to say, The Nett Company. Oregon does their permits live, meaning they only issue them during government office hours via a little old lady with a plaque above her desk that reads "Helen, Secretary of the Year, 1976." And it takes her about five hours to issue one. So not only is the company I work for out $80 (did I mention, they don't do redos?), but I have to tell this guy, I can't get him another permit until tomorrow and only after somebody's great Aunt Helen has watered the office ivy, had her coffee, and taken her morning dump. Now he has to sleep in his rig at the truck stop under the neon lights and his shipment is going to be late. Here goes the domino effect. Yeah, I was thinking of a four letter word about that time
.....................................................................................quit.

And that's just one example of the hardships a person with a hearing disability has. I liked that job. They had decent health benefits, tuition reimbursement, Six Sigma training, free flu shots, and awesome company picnics. And I really liked the girls at my lunch table.

But I did quit. I couldn't risk disappointing people, screwing up permits, wasting peoples' time. I felt bad for that driver and what I cost him. That was a night away from his family, and his client was pissed even though it was my fault rather than his. What was he supposed to say, "Some dumb deaf girl in Texas screwed up my shipment." Who knows what he said. I resigned that day.

A quick note about the phone work: the only way I managed to do as much of it as I did and for so long was because we wore head pieces attached to the phones. I could turn them up as loud as I wanted and that managed to work pretty well for me in most cases.

I was already in school at UTD. I had started that January, 2001. Blake and I had bought a house in October and were planning our wedding. I didn't have my hearing aids yet and it was this incident that prompted me to get on the ball and set up the meeting with TRC. I think that leaving that job proved to them that I could not be a contributing, tax paying member of society without some help. Anyway, they agreed to buy my hearing aids.

That first semester at UTD was hard to say the least. It was smaller than UNT but bigger than NCTC. My professors were tenured, publishing, doctorates who wanted to weed out the cannots from the can dos. It was hard to be a can do when I couldn't hear the discussions and I was too mousy to talk to them about my hearing problems, but I survived...by the skin of my teeth. I made my only C that semester. Made an A in the other class; it was all writing and I can do that with or without ears on just about any subject.

My summer courses started and I still didn't have my hearing aids. A few weeks into the semester, I finally told my literary analysis professor that I couldn't hear but I was getting hearing aids, if he could just bare with me a couple more weeks. His reply was "just raise your hand if you need me to repeat anything." HA! I wanted to say, "So I guess, I'll just keep it up the whole class." He didn't get it; I could not understand a word he said. When my biology professor told us that our class would be nothing but watching videos every day, I set up a conference with him. In our meeting, I explained my hearing loss, told him that any type of learning from the videos was impossible for me. His solution was that I could borrow them after each class and watch them at home. I asked if they had captions or subtitles. They didn't. I barely made a B in that one; if not for the labs, I would have failed.

A couple of weeks before the end of that summer session, my first hearing aids arrived!!!! What a difference! Straight A's (except for 1 class) until I graduated, cum laude.

Audiowhat?

2009-10-15T21:33:00.000-05:00

Audiogram...
An audiogram is a chart or graphic record that is used to record a person's abiltiy to hear sound at certain decibel and frequency levels.
When a person suspects hearing loss, they undergo testing with an audiometer. I often refer to this as "the box." You go inside a sound proof room, put on the provided head phones, and raise your hand or push a button when you hear the beep. Each beep is delivered at a different frequency and decibel level. A decibel is simply a unit used to express the intensity of a sound wave. The louder the sound, the higher the decibel number. Speech comes in around 20-50 decibels, leaves rustling-20 decibels, a nightclub or concert is around 110, a hair dryer, about 80.
Take a look at the audiogram below...most of them don't come in rainbow colors but I wanted to show you a few extra things.

The numbers on the left are decibels from soft to loud going down; the numbers across the bottom are frequencies from low to high.
You can see where I boxed in 20-50 to show you where normal speech falls on the sound chart. Notice the letters on the chart in the blue section. These are called phonemes, or more simply put, sounds letters make. You can see that M is around 35 decibels, O is 40 decibels and 750Hz, etc.
I colored the chart to show you the different levels of hearing loss. A person with normal hearing would fall into the pink area and be able to hear all sounds below it.
The vertical lines show frequency levels. Look at the black hand drawn line with the Xes at the top of the chart. This is what a normal audiogram would look like. At each frequency, the person raised his or her hand at the beep and the audiologist drew an X. If the person being tested fails to raise his hand or push a button, the audiologist raises the decibel until the patient can hear it, finally marking an X at the correct level.
The red Xes are mine; I can hear all sounds below my line. As you can see, my hearing levels are well below the normal speech threshold; you need to be as loud as a hair dryer or vacuum for me to hear you. My loss is considered moderate to severe. Without amplification, I am pretty much useless. I can hear men better than women since their voices are usually lower. You can see that my Xes take a dip as the frequency increases before coming back up with the really high frequencies.
People who have even a mild loss should consider hearing aids since most speech occurs at that level. I'm trying to get the courage together to go a whole day without using mine just to see what happens. When I finally do, I'm sure I'll blog about it! I'm also curious to see what an audiogram with my hearing aids would look like, definitely not normal, but I'm thinking mild to moderate.

What does hearing loss sound like?

2009-10-13T22:32:00.000-05:00

The Phonak site has a great set up that will allow you to click on a sound to hear the way people with normal hearing would hear it. Then you can click on the same sound to hear it the way someone with a mild loss or a moderate loss hears it.

My loss is moderate to severe and you can actually hear more on the link under "moderate loss" than what I can hear without my hearing aids. With my aids, it sounds like "mild loss" most of the time, but in noisy situations, it still sounds like a moderate loss.

Try it...you don't have to download anything, just turn on your speakers.

In my next post, I will explain audiograms, show you my own, and where certain speech sounds fall on the chart.

An Inevitable Involuntary Manifestion: Or How I Learned To Read Lips Without Knowing About It

2009-10-12T22:32:00.002-05:00

A few things happen when one begins to lose her hearing, things that are beyond control, involuntary, and absolutely pivotal. In my previous posts, you read that my hearing loss began in the 5th grade and I somehow managed without hearing amplification to become a junior in college with a 4.0. And you're probably wondering how I pulled it off...
When hearing loss is progressive, you adapt, even if you don't realize that it's happening. Simply put, I learned to lip read; honestly put, I learned a lot more than that.
When people speak of lip reading, I believe that they may not fully understand what is actually involved. Lip reading or speech reading is not simply watching lips and being able to "see" what sounds are made. It actually involves a whole lot more, such as analyzing body language and using context clues. Wikipedia defines it as "a technique of understanding speech by visually interpreting the movements of the lips, face and tongue with information provided by the context, language, and any residual hearing." Basically, you learn to use everything you've got to make out whatever it is you're trying to hear. Lip readers use cues from the environment and put that together with what is most likely to be said in the given situation. For me, this just happened involuntarily; I didn't look it up or take a class or even ask another deaf person how to do it. It happened before I even realized it was happening and I was doing it long before I realized I was doing it.
Fortunately, I have a gift for using context clues and solving puzzles. Maybe I was born with it, or maybe, it's a byproduct of my hearing loss. Either way, I'm good at this sort of thing. I can usually figure out what you are saying even if I can not hear all of the words. But that does not mean I will not ask you to repeat yourself if I did not get it all the first time. I think that this kind of speech reading is what helped me survive without hearing aids for so long. Believe me, it is not enough on its own, but it was something that helped me get through life as long as I did without amplification. Another thing to keep in mind, is that a hearing impaired person is using many more levels of concentration than others might use. I often find myself exhausted after a night of social activities (even without the wine) and there are some people I know that I'd just rather not make the effort to socialize with because they require so much energy to be understood. Some of these people get the nod and uh-huh tactic and some of them, I simply avoid as much as possible. However, most people do not fall into either of these categories and with some effort, can be heard and understood even without my hearing aids.

What can you do to make it easier for the hard of hearing/deaf/hearing impaired to read your lips?

-always face the person you are speaking with
-slow down, avoid slang, especially new or trendy phrases that don't really make sense in context, and mixing languages such as English and Spanish which is fairly common in Texas these days
-be careful not to stand in front of a bright window or light or your face will be shadowed
-mustaches and excessive facial hair can pose a hindrance
-allow only one person in a group to speak at a time
-do not try to exaggerate or speak too loud; this confuses us when we are trying to place context clues and can distort the sound of what little we can still hear
-be sure to enunciate and even slow down a little
-do not talk with food or anything else in your mouth
-get my attention before you begin speaking to me, please don't yell at me, just touch me or say my name when I look at you
-remember some rooms are better situated to hearing than others (acoustics), rooms with carpet, drapes, soft furniture are easier environments than hard floors, tall ceilings, background noise, or even outdoors
-if you have an unfamiliar accent and are soft spoken, be prepared to repeat yourself many times or just write it down

I'm sure to think of more later, but for now, just try to keep these tips in mind.

An Article from UTD

2009-10-06T13:32:00.000-05:00

Speech Program Benefits Kids with Cochlear Implants

Oct. 6, 2009

For decades, cochlear implants have made it possible for children who are deaf to enter a hearing world. But hearing is just one piece of the communications puzzle.
Thanks to speech-therapy programs at the UT Dallas Callier Center for Communication Disorders, children with cochlear implants are not only hearing the words that surround them, but also speaking them.
The center recently launched the Cochlear-implant Language Advancement Program (CLAP). The program is for children ages 18 months to 3 years who have been diagnosed with hearing loss, have received a cochlear implant and have language delays. Read More...

Bring It On...I Heard That

2009-10-04T15:10:00.003-05:00

So here I was, a junior at UT Dallas, when I got my first pair of hearing aids. Yes, I had gone back to school, several semesters before meeting the folks at TRC (Texas Rehabilitation Commission). As I mentioned before, these are the guys responsible for the funding of my first amplified hearing devices.

I headed back to school in 1998 when I realized that I couldn't babysit drunks forever. Back then, I worked at a shabby little dive called J.R. Pockets, a hole in the wall pool hall where I witnessed grown men beating the crap out of each other, blood spurting across my bar from a throat slit just a few feet from my face, people pissing and puking on themselves, kids skipping school, and a whole bunch of things I won't say anything about. Not a pretty sight, but I met some decent folks there and some real good friends. And when I could slap 600 big ones into the bank on a Saturday morning, show up to work in cutoffs, flip-flops, spaghetti straps, and no bra, well, life was good.

I was working at JR's when I decided I wanted to be a teacher. There was a group of teenagers that skipped school to play free pool at 2:00 every day; and, although I did call the truancy officer and the local high school on more than one occasion, it was one of the little girls that showed up almost daily that inspired me to return to my education and do something for kids like her. I got to know her when she saw me reading literary classics behind the bar through a haze of stale cigarette smoke. She wanted to bum a fag and a free coke; I said no to the cigarette and yes to the drink. Then, she asked me if I knew anything about Ethan Fromm and it just so happened that I did. So she brought her school work to the bar and each day I tutored her. If she didn't pass the Senior English class she was currently failing, she wasn't going to graduate. We made a deal; if she would go to class, I would help her pass. I enrolled at NCTC that semester with the goal of becoming an English teacher and she passed with a B.

To fund my education, I picked up a second bartending job at a short lived college joint on the other side of town, Gooey Louies. I worked 5 days at JRs, 3 nights at Gooey's, and fit in school on the nights I had off. My hours were 10 AM-3 AM on the days I worked doubles. And 10 AM-9 PM on school days; I always picked up a weekend shift at Gooey's as well. I studied during the slow hours at JRs and I ended up taking everything NCTC offered towards my degree plan. Finished up there with a 4.0, and yeah, I did it in mute.

The Sound of Music

2009-10-04T14:36:00.000-05:00

...rhythm and harmony find their way into the inward places of the soul, on which they mightily fasten, imparting grace. ~Plato

Like any normal person, I enjoy the sound of music and like Plato, I believe that it touches us in ways that make us better. When I was five, we moved into a little pink house on a hill and my father set up his Bose stereo system in my room. I also had an old blue record player that was most likely my favorite and most used possession. My house was never really filled with the sound of music growing up but my room was. My parents gave me two records that I listened to relentlessly. One was a Strawberry Shortcake album of compilations. It was illustrated with scenes from that sweet strawberry landscape. The other was a Pac Man album that was illustrated in shades of blue and scenes from Pac Man or maybe it was Mrs. Pacman; I don't remember. But it was my favorite. It was my first introduction to Pat Benatar and Joan Jett.

In 1984, my parents gifted me with my first walkman. It was red and came with Michael Jackson's, Michael Jackson. "Here comes my summer love, girl I won't forget you..." I was eight.

In the fifth grade, I embarked on the journey of musical training with the fabulous flute-a-phone and the next year, I began learning to play the clarinet. I learned to read music and understand the basic theory involved, but when the high school band director tried to help me tune my instrument years later, I was clueless. By the time I was 15, I could no longer distinguish between the notes or keys. I gave it my best shot, but either I got lucky or he gave up. When he tried to force me to play a different instrument, I blasted the school fight song as loud as I could through every piece until I finally refused to learn anything else and then I quit. I sold my clarinet for $100 and never looked back.

Have you ever heard me sing? Let's hope that's a negative! I cannot sing on key. I can't hear the difference; it all sounds the same to me. I've always wanted to sing, to shout my praises in church, to sing my daughter to sleep, to sing my heart out while sitting at a red light, to join a group of Christmas carolers on snowy Christmas Eve, but it's just something I can't do. Don't get me wrong, I still sing to my daughter; she doesn't mind my musical disaster. But Lillian, like her father, seems to have a gift for music. She can tap out rhythms and hit the right notes to songs like Twinkle Twinkle Little Star, and the ABCs. I didn't even know the ABCs had notes and I only know she can do it because my husband tells me.

I love musicals and always wanted to perform in one, The Sound of Music, Little Shop of Horrors, Chicago, being a few of my favorites. Seeing them in the theater is difficult for me. I can't necessarily make out the lyrics but I still like to go. I haven't tried it yet with my new Phonaks; maybe I'll do that soon.

After being fitted with my first set of hearing aids, a simple of pair of analogs built in a laboratory at American Hearing Labs in Carrollton, I practically ran to my car and cranked up the stereo. The first wave of notes to hit my ears blew me away. I could hear the rich timber of a number of various instruments as I flipped from station to station trying out the sounds of different musical genres. The wind blew through them as I hastened through the parking lot; birds chirped in the crype mertyls lining the sidewalk; the spin of my tires on the asphalt was overwhelming. Within a few hours, my head was spinning and I suffered a mind numbing headache from over stimulation. For the first few weeks, I could only wear the hearing aids for a couple of hours a day, slowly increasing the time until I was used to the sound of music.

What are these fabulous Phonaks I keep raving about?

2009-10-04T00:47:00.000-05:00

Check out the Phonak website. I have the Audeo Yes, with the My Pilot remote control and the Icom blue tooth receiver. More on this later.

What's Made Me Spill My Guts After So Much Silence?

2009-10-03T23:56:00.003-05:00

I honestly have no idea...

Maybe it's these new Phonaks, maybe they've given me confidence, maybe I'm just tired of people thinking I'm stupid, or stuck-up, when the truth is I'd just rather not talk to you because a detailed conversation is just too much work when I can't hear you. If I don't know you very well, chances are, I just smile and nod and uh huh you politely; then I go on my way, glad that it's over.

I guess I'm just at a point where I've decided people need to understand what it's like to slowly lose your ability to hear. It's different if you're born that way, you have trouble speaking, people can tell, you learn to sign, your parents tell everybody for you, but when it happens slowly over many years, people have no idea. They think you're an idiot if they are just meeting you; if they've known you forever but haven't seen you in years, they think you're snubbing them.

I also feel like there are others out there going through this and maybe they need someone who is a step ahead of them to help guide the way, or maybe they are a step ahead of me and can ease my path.

Maybe I'm just tired of being quiet in this world of nothing but. I may not can hear but I'm ready to be heard.

I hope you will keep reading my blog as my story unfolds and as I bring the newest research and technology to light. I hope to introduce you to the rest of my story, from my first hearing aid experience to my current ones, the fear I endured after my pregnancy, the latest gadgets in my arsenal, definitely a video of my alarm clock-did you see Heroes this week, I have that set up!-and so much more.

What's Wrong With Me

2009-10-03T23:38:00.003-05:00

Enlarged Vestibular Aqueduct Syndrome
I wear hearing aids in both ears; I can't hear anything without them, seriously, hardly anything, loud screams next to me maybe, but pretty much, nothing.

In short:
We all have these little canals in our heads that connect our ears to our brains, and mine are bigger than yours, most likely because my brain is so big : ). But this poses a problem with hearing.

According to the leading research, this is a genetic condition, both parents must carry the gene to pass on the disorder, but if only one parent is a carrier, the gene is passed to the offspring who will become carrier (autosomal recessive). Both of my parents are carriers which means about 1 in 4 of their offspring will develop the disorder. Looks like I got the sh$t stick.

It's very unlikely that my daughter will have this since my husband would have to be a carrier as well. Still, she will be tested every year starting on her third birthday, and she will be a carrier of the gene. I get tested every 6 months since the disease is progressive, that means it gets worse over time.

The discovery of this disorder happened in the 70s and because it's not fatal, there has not been a lot learned about it. Some scientists argue that it is not, in fact, genetic at all, but others claim to have isolated the causing gene. So I'm still waiting for the smarties to figure this one out.

Not all people who have the disorder actually loose their hearing, but those who do, usually begin to show symptoms in early childhood which explains why I began failing tests in the 5th grade.

Please check out my links to learn more as I am still trying to figure this all out myself.

Enlarged Vestibular Aqueduct Syndrome

What symptoms do I have?

--progressive hearing loss
--fluctuating hearing loss while and shortly after pregnancy, which may or may not be permanent if I choose to become pregnant again. I got lucky the first time and my levels bounced back up almost to where they were before my pregnancy.
--tinnitus-constant ringing in the ears, popping, dripping sound like a leaky faucet
--vertigo-short bursts that cause me to lose my balance and see the room spinning or total blackness, only once have I completely passed out from it. I experience this very rarely, maybe once a week and it only lasts a minute or two.

What can make it worse?
--head trauma
--changes in barometric pressure like scuba diving
--pregnancy

What can make it better?
Nothing at this point but hearing aids are working for me and as technology gets better and better, life improves. If my speech discrepancy levels drop below a serviceable level, I will be a candidate for cochlear implants. The good news is that I'm not there yet!

How It All Got Started: Part II

2009-10-03T22:44:00.002-05:00

...so the school arranged, through the Texas Rehabilitation Commission, a meeting with an audiologist and I endured a serious of hearing tests. It was my first time in the box and I failed. But I didn't fail miserably. The result was that if I was doing okay in school and didn't feel that I needed help, nothing serious was going on. And it was left at that. I was an A student, honor roll, NHS, athlete, over-achiever, gifted and talented...high school was a breeze.

Fast forward to college. I showed up to my poly sci class, 500 students crammed into the UNT Lyceum and the professor decides she doesn't like the mic. "You all can hear me, right?"
I'm thinking "What did she say?"
Luckily one of my first and still dearest friends from college was sitting in the seat behind me. I never would have passed that class if he hadn't been there to interpret. Thanks, Chris!

And that's how it was. Every class was a nightmare. I couldn't hear the professors, some were quiet, some had crazy accents, some rooms had bad acoustics. It never occurred to me that I was the problem. I just quit going, found other things to keep me occupied, things I won't mention to preserve my mother's sanity. But the truth is, I just gave up. My father still makes comments about his fear of me becoming a pole dancer...I guess he doesn't realize, the deaf don't dance too well. My husband even makes fun of my dancing. All those years, I thought I was being sexy and he finally admitted, he was trying to not to laugh! Don't worry, the thought of pole dancing never even crossed my mind.

So there I was, little miss perfectly college prepped, giving up before I even got started and completely ignoring the obvious (pardon my cliche). It wasn't until I met my husband and began the journey that would be my future that I finally realized, I could not hear and I could not keep living this way. He demanded that I get some help and it just so happened that another dear friend, my old college roommate, had recently discovered her own hearing issues and found help through the Texas Rehabilitation Commission in Carrollton.

She pointed me in the right direction and I found myself meeting with a kind lady named Rose Mary. Rose Mary sent me to an ENT and once again, I had to face the box. This time my results were worse than before. The doctor declared that I needed "amplification." This is a fancy word for hearing aids. Having no health insurance, I was relieved when Rose Mary said the state of Texas would pay for them. Unfortunately, the state of Texas could not have cared less about why my hearing loss was progressing, and that was never looked into.

Nevertheless, about a month or so later, I received my first set of hearing instruments, built specifically for me at American Hearing Laboratories in Carrollton. It was 2001, 15 years after failing my first hearing test.

To be continued...

How It All Got Started: Part I

2009-10-03T22:08:00.001-05:00

Coach called a time out and the girls in purple and gold huddled around, eyeing the white board, waiting to hear the next play but instead they heard Coach's rant, “King, do you ever pay attention? You need to get the boys outta your head and get in the game. I've been calling you in at point guard for the last three minutes.”

Number 35, a tall girl with a stringy blond ponytail and bright pink lipstick jumped to my defense, “She's paying attention, Coach. She can't hear you.” Number 55, the Mogulette's right wing and sometimes post, chimed in, “She's half-deaf; we make fun of her all the time!”

“What do you mean, you can't hear me?”

“They count how many times a day I say 'What?' I can't hear, Coach.”

“Then you sit by me from now on.”

...and that's how I got to sit next to the hottest coach that ever graced the halls of Munday High during every basketball game.

When the mute button is pushed on my HDTV, it goes completely silent; when the button is pushed on the other set which is connected to a stereo receiver, there is a faint murmur of sound. You know it's there but can't really make out what is being said. My life is like that second television on mute. That is how I hear. Everything is a murmur and much is lost completely. Birds do not sing, leaves do not crackle under my feet, my dog does not wheeze, alarm clocks are useless, and telephones are impossible. If you stand behind me when you speak, I will never know you are there. And yes, some of my friends seem to think this is funny. Ha ha, joke's on me.

But the truth is, it is not funny.

That coach was the first and last teacher to know that I could not hear. Maybe he said something, maybe he didn't, but a few weeks later, the school nurse hunted me down and forced me to take a hearing test. She would have done it sooner, but I managed to avoid her for several years.

Taking it back a few...to the fifth grade. We saw her come into the building with her big metal case. She called us to her office one by one, hooked us up to head phones, and instructed us to raise our hand when we heard the beep. It was my first hearing test. I didn't much mind; I was good at tests. When it was over, she asked me if I had been sick recently. I told her yes. And this was true, I had bronchitis a couple of weeks prior. She said that I didn't do so well on the test but it was probably due to my illness and that she would test me again in a few weeks. She never did.

In the seventh grade, I heard a rumour about a guy who had just graduted from high school in our town. He was rejected from the Marines because he could not pass the vision test. This was disturbing to me since I had decided that my life's ambition was to become the first American female fighter pilot. Between the pictures of Johnny Depp and New Kids on the Block, I had plastered my walls with posters of planes and helicoptors. No way was that nurse ever going to evidence my failed hearing test on paper.

Later that year, I spotted her again trooping into the building with her shiny metal case. It was testing day. I was a clever kid when I needed to be; they started calling students out of my class, one by one; when they got to my row, I asked for a bathroom pass and I did not return to class until I was sure she was done. It worked!

Apparently, they test every other year at my school because she was back only a few weeks after the basketball incident. Once again, I tried to duck out of it. I hastily finished my English assignment, waited until it was close to my turn, then asked the teacher if I could go to the theater arts department to work on decorations for the play. Ms. Ratliff was a sly one; she must have been in on it because she said no and sent me directly to the nurses office where a whole lot of hand raising at the beep failed to happen. I think the coach must have ratted me out because the nurse was firm this time. My mom worked hard to provide for us so I had always been the kind of kid that tried to make things easy for her. When the nurse threatened to send a letter to social services if my parents did not take me in for further testing, I knew I had been backed into a corner. It was time for Mom and Dad to learn the truth.

To be continued....