I Still Feel Like Crying

My school district has adopted a new phonics program and has required all of us to attend an inservice this summer to learn about it. I went today.

I have to tell you - I hate programs. To me, it's a vote of no confidence in my expertise as an education professional and a reading specialist. So the district hands me a commercially prepared, "teacher-proof" program and mandates that I use it. I hate that. And I hate that our district adopts a new and shiny program every two or three years, so we have to learn and learn programs again and again. It's a grand money-making scheme for the developers and vendors of these "programs". So I'm already unhappy about taking an afternoon of my summer to attend a mandated and uncompensated training to learn about something I could have figured out myself by looking at the teachers' manual.

The training began rather harmlessly with one of those "tell me about yourself" introduction activities. I hate those, too. People never speak loud enough, and when you are almost deaf, it's pretty much an exercise in futility. If I'm giving you my afternoon for free, please cut the fluff and let's get on with it. I really don't know who designed the current and accepted format of teacher in-service, but I think that person should be punished severely for developing such a lame and tiresome model.

Then the demo of the computer software began. This is what we really came for. "What will our students be doing in this "new" program?" We fired up our laptops and keyed in the username and password to begin the demo. I knew I was in trouble when I couldn't hear anything with the headphones. They were a pretty cheap, little headset that sat on the ear, far away from my hearing aid microphone that sits behind my ear. So I took them out and opted for the laptop microphone. The trainer nearly tripped over herself to get to my place and plug my headphones back in. I explained that the headphones were't equipped for use with my hearing aids and that I had unplugged them on purpose so I could hear the demo. She apologized for her assumption of my computer ignorance and gave me one of those goofy embarrassed looks I've become so accustomed to since I lost my hearing.

People really don't know how to respond to me.

Then it began. Not all at once. But as the demo continued, I began to realize that the headphones were the least of my problems. The barrage of phonetic sounds were blasting from the speakers at what I perceived to be a rapid-fire pace. My response to this assessment would determine my placement in the "program."

The first sound I was given was "ch." So I quickly and confidently clicked on the little square marked "ch." Wrong. (It chastised me with a buzzer and highlighted the correct sound of "th.") What? While I'm adjusting to my surprise at missing the first sound, I missed the second one for not responding quickly enough. So on to the third sound, which I wasn't sure if I heard or not, so I began looking for a "repeat" button. BZZZZ! (There was none.) I got the next one. "Th." Nope. BZZZZZ!  Now I wasn't confident about anything I was hearing.

I stopped and raised my hand to inquire about what the company was doing to make their shiny, new program accessible to students who wear hearing aids, are hard-of-hearing or deaf, or who may have processing problems that would make discriminating isolated sounds as difficult for them as it was for me. "There really isn't anything for them in this program." Phonics is based on hearing and sound discrimination, after all, I thought. I am a reading specialist. I knew the answer.

I faked an important text message so I could make a graceful exit before I burst into tears.

My knowledge of how children acquire reading did little to prepare me for this experience. I had learned in my reading master's classes that only about a third of our students can learn to read using phonics. The rest require an eclectic approach that uses many different approaches.  Had I completed the demo, I would have been placed in the beginning reading level and forced to endure lessons specifically designed for "my level" -- lessons that would supposedly teach me things it thought I didn't know. Mind you, I can understand those sounds in words and even in sentences using meaningful context, it was the isolation of the sounds that was the problem, and those sounds are missing from my ears because of my hearing loss, not because I don't know them. THIS assessment was neither meaningful nor representative of my knowledge of words and sounds. I would be labeled: BELOW-LEVEL. The words screamed inside my head.

It hit home how frustrating it must be for those two-thirds of my students who are forced to learn to read through these "programs." They will be labeled failure to thrive and forced into dull remedial reading programs based on more and more phonics simply because their brains aren't wired for isolated sound discrimination. It is wrong. And it marginalizes who they are, not only as readers, but as human beings.

It's been four hours since the training ended. I still feel like crying. I'll remember this feeling. And I'll use it to make myself a better teacher...and a more compassionate being.

As Normal As It Can Get

"You are definitely a candidate for cochlear implant."

I had been waiting to hear those words. But when my doctor said them to me yesterday, my heart skipped two beats. I qualified for candidacy. It was determined that I need a cochlear implant and would benefit from its use. I can begin the process of getting an implant for my deaf ear. Now begins the back and forth negotiations with my insurance company, the countless appeals, and the necessary medical tests before my surgery date is finalized.  I'm hoping it will come sooner than later.

"It'll be like learning a new language," my doctor told me. "And it won't be easy. It won't be hearing as you are used to hearing. It is digital. It is electronic. You'll have to teach your brain to understand it. But I think you are highly motivated to learn and will be able to do this." 

He explained it would be a little like dropping me in the middle of France, where I didn't know the customs or language, and asking me a few days later how things were going. I'd be a mess, I'm sure. But after a few weeks, I would have learned how to navigate my neighborhood and probably learned some important phrases to help me get around. "If I checked on you after 6 months," he continued, "you will probably have learned some social language and have friends who you speak casually with every day. After a couple of years, I wouldn't be able to tell you from a native." That's what using a cochlear implant is like.

I admit, I'm a little giddy about it. I came home and tore open the information packet he gave me. It came with a little plastic model of the external speech processor for me to "try on for size and fit." I put it on. It was BIG. And it was a big deal. I was consumed by emotions of nervousness and excitement while being completely aware of an enormous sense of apprehension. It's permanent. There won't be any turning back or changing my mind once it's done. I couldn't shake the dread of how the magnet inside my skull would attract the undead to me when the zombie apocalypse occurs!

I will still be deaf. It is not a cure for my deafness; it is only a tool to connect me to the hearing world -- a tool that will require many hours of practice and rehabilitation. But it is steady and consistent, my doctor had told me, unlike my own hearing, which seems determined to keep me guessing. 

Most people think the implant restores hearing. Turn it on and "click!" You can hear again. It's not quite that easy, I've learned. Without the processor, I will hear nothing. With the processor, I will hear this:

https://www.youtube.com/watch?v=SpKKYBkJ9Hw&feature=player_embedded#at=56

Nope, it won't be easy. But with time, it will improve, and I will have a restored sense of normalcy in my hearing world. As normal as it can get.

Ten Little Decibels

Ten little, measly decibels. That's what I lost in June. It doesn't sound like much, does it? But it has sent me reeling.

Ten decibels means that conversation in a restaurant must be twice as loud as before for me to hear and understand. It means that conversation at home must be four times as loud for me to hear about your day. It means that birds must chirp eight times as loud for me to enjoy their song. It means that leaves must rustle sixteen times as loud for me to know they've blown past me.

I knew I hadn't recovered all of the hearing I'd lost from my latest SSHL event because I was struggling to understand my husband and daughter at home, but I'd thought it was better than that. Ignorance was bliss. Knowing now about those ten little decibels is blowing me away.

Before I knew about decibels and cochleas and speech bananas, ten little decibels would have sounded negligible to me; but now it makes all the difference in the world.

I'm Stronger Than That, Right?

If it's not depressing enough to miss a third of casual conversation, my evaluations for cochlear implant approval were not "bad enough". Last week I scored 66% in speech recognition with both aided ears -- too high for the criteria set forth by Cochlear for cochlear implant candidacy. They asked to reevaluate me with two more tests. One was a test of my "deaf" ear with a hearing aid that amplifies. My BiCROS hearing aid only transmits sounds to my better ear's hearing aid. The second evaluation was to be performed at the end of the day to determine if aural fatigue played a role in how well I hear and comprehend speech.

I was a doubter, I must admit. I couldn't see how taking the test a mere 4 hours later than before could make much difference. I'm stronger than that, right? So I plunged into it head-long.

"Don't sit at home quietly waiting for the test," my audiologist instructed me. "Get out into some noisy places."

If it were not summer vacation, my classroom would've been the perfect place, especially if I spent a few minutes in the cafeteria during lunch. But I had to come up with some creative alternatives to my work routine. I enlisted the help of a friend, who took it as her challenge to help me fail my tests.

It felt a little like being taken hostage. She didn't warn me about any part of her agenda. She just told me to remember that everything she'd planned was for my own good. During the car ride, I was inundated with an open sun roof, a blaring radio, and quiet conversation. I had to strain to hear. We arrived for lunch in a noisy restaurant just before peak lunch time. Since this has always been one of my listening challenges, it was the perfect starting point.

Our second stop was a movie and pet companionship at her house. Added to the extra loud, action movie was romping time with three large dogs in a room with tiled floors and high ceilings. (No closed captioning on the movie!) She turned on her clothes dryer for added ambiance. We talked through the movie, which was really only on for background noise. The dogs were perfectly behaved, though -- better than normal, she said, and didn't bark much at all, dang-it. I tried not to use lip reading to help me. I'm not sure, but I think the windows were rattling!

The coup de grace was our final trip to a place called Bounce U, an indoor play place for children that features all manner of inflatables for kids to play in. It was deafening, for sure. (We had to borrow her friend's kids to get in!) I could tell my comprehension during conversation was suffering.

Arriving at the doctor's office with an almost-migraine headache and feeling aptly overstimulated, I scored an expected 0% in my deaf ear, even with amplification, and a mere 48% using both ears.

"This is good, even if it seems bad," my audi said. "They like it when it's below 50."

I was pretty amazed. During the school year, I came home exhausted every day - flopping onto the couch where I often fell asleep for two or more hours and then regularly slept another 7 -8 hours each night, only to wake the next morning to the same repeating and grueling routine.  I plugged on day-in-day-out, though,  not wanting to be a wimp, and not wanting to admit to my stubborn self that my hearing loss was kicking my butt. I'm stronger than that, right?

Nope.

Listening is seriously hard work when you must listen through one ear that only has about a third of its capacity intact. Aural fatigue is real and affecting. And today I learned how much it is impacting me. And I decided I should give myself a break. It's okay to give in to the fatigue and admit that I am not as strong as I wish I were --and to retreat into quiet solitude to rest. But it does help to keep a bottle of Tylenol close, and to take a couple...or three.

Hey! I'm Still Here!

Today I felt depressed. It's been coming, I knew, and I've been trying to ward it off. But some days, it just gets the better part of me. It was one of "those" days for me.

I could tell that the depression was about to rear its ugly head. Last week, I attended the NEA Representative Assembly. Being in a noisy, crowded assembly hall with over 10,000 delegates, staff, and guests was pretty overwhelming. I had to rely on the closed captioning on the jumbotron across the convention hall. Our delegation was seated behind an aisle, so there was a continual stream of people walking between me and the screen, not to mention the people who stopped to greet our association officers or those who just stood to stretch their tired legs in the aisle. I never complained.

It was exhausting.

Trying to listen and maintain attention on those little words that scrolled across the screen took an incredible amount of brain power. I wasn't mentally prepared for how hard it would be. Side conversations among the crowd made it even more difficult to focus. When the people seated next to me asked me questions or made comments about the business, I had to lean in and have them talk into my better ear. And I had to ask them for clarification many times myself.

Four of the nights, I ventured out to dinner with others. I've become adept at smiling politely and nodding during dinner conversations. I actually hoped that no one would talk to me or ask me anything for fear that I would misunderstand or have to ask them to repeat themselves multiple times. It's embarrassing. And it's tiring. Hell, I even laughed appropriately when others did. For all accounts, everyone at the table assumed I was enjoying their stories and jokes. I'm that good.

But I was lost. 

Last week felt a bit like treading water in a roaring river -- struggling to keep myself afloat, but being swept uncontrollably downstream where I knew I would eventually be hurled over the waterfall. 

The quiet of being home again is a mixture of relief and regret. My weary senses can rest. And I can over think the emotional grief of things lost along with my hearing. 

I'm tired of being present in body, yet being totally alone.

It is Time.

This new business item from the National Education Association Representative Assembly's New Business makes me very happy. Not only because it addresses an important and forgotten aspect of deaf and hard-of-hearing medical care, but because it helps the many students, friends, and coworkers I know who could improve their quality of learning and living if only they could have afforded the exorbitant cost of hearing aids.

Many insurance companies have for-purchase policies that provide coverage for eyeglasses and contacts, but have neglected adding coverage for hearing aids. This is an all too common problem for the millions of people --in our country alone-- who suffer from some form of hearing loss and who continue to suffer the effects of hearing loss because of poverty or other financial burden.

I am fortunate that the insurance plan my husband's company provides paid for 80% of my hearing aids. If I had been on the state insurance plan provided by my school district, the entire $6800 price tag would have come out of my own pocket -- a cost that would have placed a large financial burden on my family and me -- simply because I suffered a medical condition that made it necessary for me to have them in order to work and survive in a hearing world. It isn't a luxury item for me. It is a necessity, just as my eyeglasses are a necessity for my near-sightedness.

That insurance companies have chosen not to pay for hearing aids is a tragedy. I am proud to be a part of a collective body of individuals who believe it is important to correct this misaligned policy. It is time for change.

Just Sit Down

Sometimes, even the most seemingly innocent actions can interfere with one who is trying to cope with a disability.

Lest you think that I am judging or condemning someone for something they have done, I must admit that until today, I have been guilty of doing this same thing countless times and being completely unaware that by doing so I may be affecting someone else around me.  I’ve never even given it a thought. Until today.

It’s standing.

You heard me right – standing.

You see, I am attending the National Education Association Representative Assembly where over 10,000 people are packed into a convention hall, and the noise of the crowd makes it virtually impossible for me to hear and understand the speakers without the aid of the closed captioning streamed onto the giant screens. And those who stand for various sundry reasons block my view of the captioning. They don’t even know they’re doing it.

We are encouraged to “stand up for public education.” But today, I wished they would just sit down.