I'm published! (TBT)

This is my first Throwback Thursday post! Since Brandt is doing so amazingly well with his implants, I don't really have anything new to report. So I wanted to share my story "Homeless Tequila" that was published in the 2011 edition of UALR's Quills and Pixels nonfiction literary journal. The stories will be familiar if you've read all my posts, but they're synthesized into one piece. Enjoy!

"Homeless Tequila"

I have bounded into the silent living room and found my hard-of-hearing husband Brandt sitting in his recliner, watching Mythbusters on television.  It’s on mute, and he is concentrating on the closed-captioning text scrolling across the screen.  I yell “Hi honey!” to announce my presence.

Unable to hear my approaching footsteps, he has responded—as usual—to my loud salutation by jumping in his seat and screaming in terror. 

“Hang on, I’m Earless!” he grumbles from his recliner, reaching for the beige hearing aids sitting on the coffee table.  As he pops them in, he pictures himself as Mr. Potato Head, inserting his comically large plastic ears. 

To make amends, I cheerfully screech, “Oh honey, you’re so cute!”

A mixture of pain and confusion pulls down his face.  “Why am I ‘Homeless Tequila’?” he asks. 

I stammer, laughing, “Wh—What?!” 

Near tears, he continues.  “Why would you call me that?!  I would never call you something like that!  That’s just mean, how would you feel if I greeted you like that?”

This wasn’t our first big misunderstanding, but it was by far the worst.  Or was it the best?  Well, it was certainly the funniest.

Brandt and I had been together for a few years at that point, and he’d been wearing hearing aids for several years before we met.  He first noticed a problem during his senior year of high school, and was diagnosed with mild hearing loss (about the decibel level of a loud whisper).  But it was graduate school before he accepted that he could no longer function without hearing aids. 

His hearing loss wasn’t an issue for me, because, by fate, luck, or random chance, I had spent my entire life connected to people with hearing loss.  Aunt Louise, my great-aunt, godmother, and namesake, went deaf at age 20 from an antibiotic and became a legend in the hearing loss community.  She helped establish the Arkansas Deaf Relay (one of the first in the country) and was a well-known advocate for captioning and other issues vital to people with hearing loss.  In 2004 she became the first adult in the state to have bilateral Cochlear Implants (commonly called “CIs”)—surgically implanted electronic devices that digitally replace hearing in deaf people who do not benefit from hearing aids, which can only amplify sound.  My Grandma Jean also had a hearing loss, caused by a childhood bout with scarlet fever.  Her hearing was restored by the same world-renowned UAMS surgeon who implanted Aunt Louise’s Cochlear Implants.  And my good friend of 10 years, Josie, was born with severe hearing loss and has worn hearing aids all her life. 

But I quickly learned that being in a relationship with someone with a hearing loss is a lot different from having a family member or close friend with it.  It affects just about every aspect of our life together.

We avoided parties and busy restaurants because it was impossible for Brandt to communicate with anyone, including me.  At my family’s big holiday gatherings, he would run off to a quiet corner and play on his cell phone. 

We couldn’t see movies in the theater near our house in Memphis because there weren’t any captioned showings.  I surprised him with tickets for the new Star Trek’s opening weekend—the closest showing with captions was four hours away in Nashville.  That was a long drive just to see a movie, but it was worth it.

Music all but disappeared from my life, since it was “distracting background noise” in the car, the house, and at friends’ dinner parties.  I got in the habit of asking the hostess if she’d mind turning off the satellite radio, because Brandt couldn’t understand anyone with it playing. 

My beloved live theater and musicals disappeared as well, since the closest theater that offered captioning was 800 miles away in Minneapolis—way too far to drive.  It was torturous living so close to touring Broadway productions, and not being able to attend any of them, but it was pointless to spend $100 on a show that he couldn’t understand, and I would feel too guilty laughing with the rest of the audience while he wondered what hilarious joke he had just missed.

But the biggest problem, by far, was the misunderstandings.  After the “Homeless Tequila” incident, I told Brandt that he needed to get his hearing checked.  He came back from his audiologist appointment announcing that his hearing was “just the same,” and he didn’t need it tested.  I had a hard time believing it, but didn’t push the issue.  The misunderstandings continued, multiplying in frequency.

Dancing into the living room one Saturday afternoon, I excitedly shouted that I had cured my hiccups. 

Brandt looked down at the wide flares of my jeans, horrified, yelling, “You cut your pants off?!”

Driving up to Brandt’s high school gymnasium for his ten-year reunion, I asked, “Does this bring back a lot of memories?”

“Does it bring back ovaries?!” he asked in disbelief.

Talking about dinner one night, I suggested we have steak. 

“I—what?!” Brandt exclaimed.

“A steak.  You know, red meat?  Why, what did you hear?” I asked. 

“I thought you said that I STANK!”

“No, actually you smell really good!  I said steak, or really, anything that comes from a cow.”

“How about a wallet?” he asked, smirking.

And my whispered (and not-so-whispered) “I love you’s” were increasingly met with blank stares and no response.

After several painfully long moments, he would finally ask, “Wait, what did you say?”

This went on for more than a year, and I again asked Brandt to go to the audiologist for a hearing test.  Again, he came home saying it was “still just the same.”

This time, I didn’t believe it.  I held out my hand and asked for the results of his test.

“Well, he didn’t do a real hearing test.  He played some beeps, and I could hear them fine, so he said I didn’t need a full hearing test.”

I may not have a degree in audiology, but I knew this couldn’t be right.  So I asked Aunt Louise, Grandma Jean, and my friend Josie what they thought about the situation, and the response from all three was a resounding “GET HIS HEARING TESTED!” 

I sent Brandt back to his audiologist, again, and he came back without a hearing test, again, with the explanation that “my hearing hasn’t changed, my brain is just getting old now that I’m almost 30, and I can’t process sounds as fast.” 

I’d had enough.  I called to make an appointment for Brandt with Aunt Louise and Grandma Jean’s ENT surgeon, whom we affectionately call “Dr. Awesome.”  His waiting list was a year long, and no amount of name-dropping could get us in any faster.

In the meantime, I decided to educate myself as much as possible.  I became certified as a Hearing Loss Support Specialist, learning everything I could about hearing tests, disability law, and assistive technologies. 

And I started learning American Sign Language, thinking that it would help reduce our misunderstandings.  Unfortunately, Brandt was too busy teaching full-time and attending classes for his doctorate to attend ASL classes.  I decided to take them alone, and try to teach him the signs at home.  It didn’t work as well as I’d hoped, since he wasn’t actively studying and practicing the words.  The misunderstandings continued to worsen.

One night while Brandt was grading papers, I asked him, “Why are you grumbling, honey?”

With a hurt look on his face, he responded, “I’m not ugly!” 

I was a little taken aback.  “Of course you’re not ugly, you’re adorable!  I asked why you were GRUMBLING.”

“Oh!” he said, laughing.  “I’m grumbling because I’m tired, but I have to finish grading before I can go to bed.  By the way, ears SUCK!”

We started relying on text messages for grocery shopping, after talking on the phone turned into me screaming the same word ten times:

“You need me to pick up hot dogs at Kroger?…  No?…  You’re not saying ‘hot dogs’?…  It sounds like ‘hot dogs’…  Hot.  Dogs…  What do hot dogs have to do with Italian food?…  Oh, PASTA!”

And it became nearly impossible to have a conversation when he was “Earless.”  I used to simply talk louder to overcome his lack of hearing aids, but now, even if he cupped his hands behind his ears and concentrated on reading my lips, he could only get a few words.  When he started to reach for his hearing aids, I’d wave my hand and say, “Nevermind, it’s not important.  I’ll just tell you later….”

            Finally, the long-awaited appointment with Dr. Awesome arrived.  First Brandt had to have a complete hearing test; the audiologist couldn’t believe that it hadn’t been tested in six years.  I told her the story about “his brain’s just getting old” from his last doctor, and she was horrified.

Brandt sat inside a little booth, raising his hand when he heard beeps, and repeating back words.  At least, he attempted to repeat back words.

            “Hot dog,” she said.

            Uh-oh, he’s going to say “pasta,” I thought to myself.

            “Oprah?” he asked.  “I know you couldn’t be saying ‘Oprah,’ but it sounds like ‘Oprah’!”

            The next word was “baseball.”

            “Muumuu?” he asked.  “Again, I know you couldn’t have just said ‘muumuu,’ but I swear that’s what it sounded like!”

            “Cowboy,” she said.

            “‘Oprah’ again?!” he asked, exasperated.

            The results of the test were distressing.  Brandt’s hearing loss had nearly doubled over the past six years—from an average loss of 40 decibels, to 70.  And his Speech Discrimination was even worse.  He had dropped from getting 99% of the words correct, to only 24%.  I started crying, for two reasons.  First, I was devastated.  And second, I was relieved to find out that I’d been right all along.

            After the testing, we met with Dr. Awesome, who has a hearing loss himself.  He predicted that Brandt would probably go completely deaf within five years, and would be a candidate for Cochlear Implants.  For now, he was “in the Gray Area” and would have to be equipped with $10,000 worth of hearing technologies to (possibly) help him function until he becomes a Cochlear Implant candidate.  We left the appointment in shock—he was going to get a Cochlear Implant in only 5 years?  Aunt Louise was shocked as well—she thought he was already a candidate and was disappointed that he had to wait that long!

            Brandt’s beige hearing aids that fit inside his ears were replaced with powerful cobalt-blue ones that sit behind his ears.  He got a Bluetooth transmitter that sends his cell phone and other audio devices directly into the hearing aids.  And he acquired a personal FM microphone system, which can either be worn around a speaker’s neck, or placed on a table.  When I wear it, it sits right on my cleavage.  I get a lot of curious stares directed at my chest.

            I was enthusiastic about all this new stuff, sure that it would increase Brandt’s comprehension and decrease our misunderstandings.  Alas, that was not the case.  Each of the pieces of technology broke at least once and had to be sent back to the company for repairs.  We couldn’t go more than a month without having to drive in for another adjustment or repair—that’s 23 trips to Little Rock and back in less than 18 months, just for audiologist appointments.

And those misunderstandings?  Well, they didn’t get any better.  In fact, I’m positive they got worse.

Sitting on the couch watching a (captioned) movie, I yelled “Don’t move!” as I reached up to remove a stray eyelash stuck to Brandt’s cheek.

Thinking I had exclaimed “What’s that?!” instead, he quickly turned toward me, and my long fingernail jabbed him in the eye.  Luckily it didn’t do any lasting damage, but it definitely hurt him.

            When a waiter or waitress asked for our drink and food orders, I answered first so that Brandt would know what the question was.  This didn’t solve all our problems, since Brandt always nods his head in agreement when they say something, assuming that the question is “How is everything?” (even if the question was actually, “Do you need anything else?”, “Did you want dessert?”, or, once, “Do you own the black BMW in the parking lot?”  The waitress kept complimenting his fancy vehicle, but wondered why he wasn’t concerned that his headlights were on).

            We had to wait another year for Brandt’s checkup with Dr. Awesome.  One month before his appointment, Aunt Louise passed away unexpectedly.  The only thing that held me together was focusing on the upcoming appointment, and I became obsessed with the idea of Brandt getting a Cochlear Implant.

I was convinced that his hearing and comprehension had gotten worse, but the tests proved me wrong.  Despite the lack of decline, Dr. Awesome wondered if Brandt’s understanding and functioning could improve with a Cochlear Implant in his worse ear, and hearing aid in his better ear.  He sent us off for an evaluation.

            I tried to keep my expectations low, but I desperately wanted him to be approved for the surgery.  Aunt Louise’s life had completely changed after getting her Cochlear Implants—she had even started attending the Symphony shortly before her death, and could pick out each instrument being played.

            After two hours of beeps and words, it all came down to the final test:  Sentence Perception in Best-Aided Condition (wearing hearing aids).  If he scored better than 60% on the sentences, Brandt couldn’t be a Cochlear Implant candidate.  I wasn’t worried; I knew he wouldn’t do very well.  I had 5 years’ worth of misunderstandings to back me up!

            But he did do well.  Really well.  Even though he repeated each word slowly, hesitantly, and ended each sentence with, “but-that-couldn’t-possibly-be-right,” he was right.  Out of ten sentences, he only missed five words.  90%. 

The audiologist conducting the evaluation said afterwards, shaking her head, “Ok, you did a little too well on that test…WAY too well, actually.  You’re not a Cochlear Implant candidate.  Not even close.” 

The room started spinning, and I could feel the tears pooling in my eyes.  I tried to explain that there’s no way he could have done that well—didn’t she notice how unsure he was repeating the words?  And what about all those misunderstandings?! 

None of my protests made a difference.  Our long list of misunderstandings didn’t matter; all that counted was his 90% in the testing booth.  A three-minute test sent all my hopes crashing down.  We will have to wait at least a year before he can be reevaluated.

A few days later, when I’d calmed down just slightly, I asked Brandt how he felt about the evaluation.  He shrugged, and in his ever-so-calm way, said, “Eh, I’ll get a Cochlear Implant eventually.  I just feel sorry for you, having to deal with my crappy hearing.  But at least you get to keep adding to that long list of my misunderstandings!”

So we’re still stuck in the Gray Area of hearing loss, where Italian food is made with hot dogs, high school reunions bring back ovaries, and the ultimate insult is calling Brandt an ugly, stinky Homeless Tequila.

Car Shopping for the Hearing Impaired

A new town and new job deserves a new Brandtmobile!

Ok, we weren't actually planning on getting a new car for at least a year, but we didn't really have a choice. Last summer I managed to find Brandt a new job, closer to our family and closer to Dr. Awesome. He was on the cusp of finishing his doctorate and the opportunity was too good to pass up!

Fast-forward to a month ago, when both of our (older model) cars suddenly had warning lights go off. Mine turned out to be a bad tank of gas that angered my recently-replaced catalytic converter, but Brandt's was the airbag. In a car with manual locks, no cruise control, and an increasingly-loud chronic shake, it was time for an upgrade.

I hadn't been car shopping in a decade, and it was not a pleasant experience. I don't think it ever is, is it?  Being hearing impaired adds some complexity to the experience, though. I had no interest in dealing with car salesman, but talking with people on a noisy car lot was going to prove difficult.

Thankfully the experience was not as painful as I feared, but it was still tricky.  I let Brandt do the talking, but I had to jump in to 'translate' fairly often.  Standing outside next to the freeway, with the sun glaring in your face, wind whistling your hearing aids, trying to lip-read a salesman with a big bushy mustache...not the ideal situation.

The two main salesmen we dealt with were professional and understanding, and didn't pull that "my manager will kill me and my kids won't get dinner tonight, but I like ya so I'm gonna make you this special deal" crap.  They repeated things and didn't get frustrated.  But they didn't believe Brandt when he said, "Don't call me, I can't understand you on the phone and won't answer." No one ever thinks he's serious.

We quickly narrowed our choice down to a Toyota Camry (which I grew up driving) and a Honda Accord (the previous Brandtmobile). The Accord had two standard features that were awfully tempting for someone with hearing loss: a Rearview Camera, and Active Noise Cancellation.  

Our new neighborhood has a LOT of  kids who play and ride bikes in the street and in driveways, and I've been fairly concerned about either of us accidentally backing over an unsuspecting child.  Brandt probably would not be able to hear someone scream behind the car, so I was very excited about this feature. And I think it's a great safety feature for anyone, not just people with hearing loss! The Active Noise Cancellation works like noise-cancelling headphones, and the Accord was definitely the quietest car we test-drove.  Road noise, especially on the freeway, makes it much more difficult for Brandt to understand me, so any reduction in that noise is incredibly helpful to our communication.

Ultimately we had to go with the Accord.  The Camry had an optional rearview camera, and their base model was cheaper, but getting these two features standard in the base model just could not be passed up.  Hurray for a new earless-friendly Brandtmobile, with six airbags and awesome gas mileage to boot!

Cochlear Implant Evaluation, PART 1

On Friday, Brandt had his much-anticipated Cochlear Implant evaluation; or at least, “Part 1.”  We drove the 2 hours in, and first stopped at Dr. Awesome’s clinic to pick up the new new iCom.  Phonak gave him a brand-new one, with new medical-grade silicone neckloop and updated software, even though they had completely rebuilt his old one a few weeks ago.  Brandt tested it with his iPhone (listening to an NPR podcast and music), the FM system, and talking on the telephone.  It worked fine, so we were off to get the CI evaluation in another part of the hospital campus (it’s a completely different office—don’t ask why, it’s way too confusing).

The office is geared towards children, so the waiting room was full of toys, kids’ books, and Hannah Montana playing (closed-captioned!) on the big-screen televisions.  There were 4 toddlers waiting with their parents; Brandt was the only adult patient.  We were summoned by Tiffany, an audiologist, and Marsha, a speech-language pathologist, and sat down at a small round table. 

Tiffany explained that the Cochlear Implant evaluation would probably take two or three visits, and “we might only have time to talk today.”  Brandt and I glanced at each other.  We want to get to the good news in as few trips as possible.  Tiffany asked Brandt a number of questions:

• Tell me about your hearing loss.
• Tell me about your current hearing aids and FM system.
• You have some very high-tech technology; do you use your FM system in the classroom while teaching? (No.)
• Is there anything else about your hearing loss that I need to know? (I mentioned his ever-worsening tinnitus.)
• Do you have a family history of hearing loss? (Yep.)
• Tell me what you already know about Cochlear Implants (I started laughing at this one; it would have taken a good 2 hours to fully answer!)
• Do you have any burning questions about Cochlear Implants, the surgery, etc.? (We had a 2-page list of questions, most of them assuming that he was getting implanted; so we decided to hold off on most of them.)

Tiffany then told us that adults are not given a choice of Cochlear Implant company and must receive an Advanced Bionics implant, and wanted to make sure that was ok.  I said, “Well then it’s a good thing we’ve already decided on AB!”  She explained that after the surgery, Brandt won’t be allowed to use a hearing aid in his non-implanted ear for a month, so that his brain is forced to learn how to hear with the CI.  Marsha explained that “the best person to learn to use a Cochlear Implant has had normal hearing,” and predicted that Brandt would have a “very fast learning curve” and “adapt quickly” to the CI because he had had “normal brain development” in regards to hearing and learning language.

Tiffany pointed out that Brandt has more residual hearing “than normal,” but they have implanted people with even more hearing than he has.  She asked about his work schedule, and he explained that he would have to be implanted at the beginning of the summer term and would set up his schedule so that he wouldn’t have to teach any classes.  Tiffany and Marsha both seemed very happy with this answer. 

Then Tiffany asked if Brandt would like to do a few hearing tests, or if he was ready to leave (we’d been talking for about half an hour).  He said, “Let’s do as much as we can today!”  They let me sit in the sound booth with him; there were lots of blocks, Legos, plastic fruit, stuffed animals, and stickers strewn around the booth.  First Tiffany did a tympanogram, which tests the middle ear and flexibility of the eardrum.  Then she did pure tone audiometric tests; these are the tests that are done when you get a ‘basic’ hearing test.  First the test is done through “air,” where Brandt wore earphones and raised his hand when he heard beeps at different pitches.  Then the test is done with a bone conduction oscillator (pictured above left) placed behind the ear.  Brandt’s speech discrimination was tested, where he repeats back a list of two-syllable words (they used the same 4 words over and over, which made it pretty predictable).  He scored a 35%, which is 11 points better than he has scored on the last 2 tests he’s had done since last spring.  I’m convinced this was because she consistently used the same 4 words.

After the ‘basic’ hearing test, we sat back down at the round table and Tiffany said, “Well, it’s 2:15, you’ve been here an hour.  I’m sure you’re ready to get back home now.”  We both furrowed our eyebrows and said, in unison, “Um, no, we want to keep going.”  She acted surprised and said, “Oh…ok…well, then let me take your hearing aids for a minute, I want to check them” and left the room.

Marsha sat down next to me with a stack of papers in her hand, and started asking me about insurance and finances.  Had we contacted the insurance company?  Did we know if they would pay for the CI surgery?  I was pretty confused, because we thought they were supposed to find out about all that.  Poor Brandt was sitting there, Earless, without a clue as to what we were talking about.  Marsha asked him, “Did you get all that?”  He said, of course, 

“I have no idea what you’re saying.  She took my hearing aids, I can’t hear you at all.” 

Marsha answered, “Oh, well that’s good to know!”  So she just talked to me, and had me write everything down so I could explain it to Brandt later.  Legally speaking, this really isn’t allowed.  I’m not Brandt’s legal guardian or parent, I don’t make his financial decisions for him.  (I don’t even have health insurance!)  Marsha talked to me for a full half hour, saying that she’s not a financial advisor and really didn’t understand all this, because it’s so confusing.  Their office submits the bills for some things, while Dr. Awesome’s office bills for others.  She gave me the e-mail address of the hospital’s financial advisor, and had me promise to e-mail him as soon as we got home.  Brandt continued to stare blankly at us, getting a little madder with each passing minute.  I tried to stay calm, thinking it must be a really good sign that he would be approved, since Marsha was talking like he was definitely getting the implant (saying “when” instead of “if,” etc.).

Tiffany finally came back and gave poor Brandt his Ears back.  She said, “Ok, it’s 15 ’til 3:00, you must be ready to start heading home.”  Again, we said, “NO, we want to keep going.”  She asked if he wanted to start on the aided hearing tests—meaning, testing done with his hearing aids on.  He hadn’t had this done before, so I was anxious to see the results.  There was a certain spot that he had to sit in the booth, a few feet away from a speaker.  First they played static at different frequencies and volumes, and Brandt raised his hand when he heard them.  It was hard for me to not react to them, but luckily he kept his eyes closed.  Then they played a tape of a man reciting sentences, and Brandt was to repeat back as much as he could understand, getting “one point” for each correct word.  I was shocked at how well he did.  There were several times that I thought, “Oh he won’t get one word of that sentence” and then he got the entire thing 100% correct.  He would shake his head, grimace, and tentatively repeat back each word slowly, ending with, “But that can’t be right.”  But it was right.  I was staring at him like, “Who is this person and what have you done with my deaf husband?!”

When the test was over, Brandt looked at me sheepishly and said, “Tell me later just how bad I did.”  Distraught, I said, “You didn’t do nearly bad ENOUGH!”  Tiffany opened the door to the booth and said, “Ok, let’s go back to my office and chat.”  “Chat”?!  I knew this wasn’t going to go the way I’d been hoping.  Brandt asked her, “So are you going to do the Hearing In Noise Test next?”  She said, “That was the Hearing in Noise Test.”  “No,” I said, “the test with the background noise.  The HINT test.”  “But that was the HINT test,” she said.  I shook my head emphatically.  She answered, “It’s the Hearing In Noise In Quiet Test.”  Brandt and I looked at each other, both quite confused.

We all sat down at the table and Tiffany said, “Ok, you did a little too well on that test…WAY too well, actually.”  My heart sank and my lower lip started trembling.  I could feel the tears pooling in my eyes.  She said, “You needed to score 60% or worse in ‘the best-aided condition,’ which is what we just did.  You scored 90%.  I even dropped the volume lower there at the end, and you still scored an 85%.  So, you are not a Cochlear Implant candidate.  Not even close.”

The room started spinning.  Brandt again asked Tiffany about the Hearing In Noise Test, and she again said that was the HINT test, done in quiet.  We were both still very confused.  She and Tracy both tried to ‘explain’ that “listening with a Cochlear Implant doesn’t guarantee better understanding in noise, only in quiet,” and that his hearing test showed that he was “still outside the range for a CI.”  Tiffany added, “You’re getting pretty good aided benefit,” and I snorted.  I don’t know how he did that well in the booth, but even sitting at the kitchen table, with no background noises, he never functions at 90%.  But I was too shocked and upset to argue.  Marsha said that Brandt was making the most mistakes with vowel sounds, which is unusual.  “For most Cochlear Implant candidates, they have trouble with consonants—like they can’t distinguish between ‘s’ and ‘sh,’ or ‘m’ and ‘n.’  But that’s not your problem.” 

Tiffany hypothesized that his “vowel confusion” was caused by a lack of “low-pitch information” given by his hearing aids, and said that when she ran them through a computer program, it said they weren’t programmed correctly.  She offered to take them and “program them correctly” on her computer.  I shook my head.  It’s taken a full year to get those hearing aids programmed as good as they were, and I didn’t care what her computer said.  It was almost 4:00 on Friday afternoon, and she wanted to start changing the settings on his hearing aids, even though we were far away from Dr. Awesome’s clinic where his preferred settings were stored.  No.  No way.  Get us out of here.  Brandt politely declined, and Tiffany and Marsha started talking about how he could use his FM system in more ways and in different situations.  Tiffany showed him how to place the FM system in the middle of the table and “you can hear everyone sitting around it!”  I scoffed.  “It doesn’t work like that,” I whispered.  Brandt spent a few minutes explaining how the FM system doesn’t really work as well for him as the brochure implies, and she didn’t really have an answer for him.

They asked if we had any more questions, and I shook my head again, just wanting to get out of there as quickly as possible.  Tiffany added, “We could always test your ears individually, and Marsha could do some language tests with you, but I’m positive the results would be comparable.”  We decided to leave.

It took a while before I could even talk, much less process what had gone on.  If his CI candidacy all came down to that one ironically-named test (Hearing In Noise In Quiet?!), why hadn’t they done that first?  Or at least sooner?  And they hadn’t even wanted to do it that day, they wanted us to come back—to take off a day of work and drive another 4+ hours round-trip, only to find out that he wasn’t a candidate.  I was fuming.  Brandt was confused and “surprised.”  On the drive home yesterday, we discussed our plan for moving ahead. 

Since it was apparent from meeting Tiffany and Marsha that they’re used to working with children, we will request an evaluation with members of the team who work more with adults.  Brandt will ask to have the testing done on his ears individually, and have the language testing done with a speech-language pathologist.  We will discuss with these team members how Dr. Awesome had implied that Brandt’s candidacy wouldn’t hinge on the result of one single test, but would take into account a number of factors and would be decided by the CI Team as a team.  We will make sure they understand that we want all of this to take place at the same visit, even if it’s 3:00 on a Friday afternoon and they’d rather go home early.  And we will contact Dr. Awesome directly and get his opinion.

So, it’s not over yet…

   

Meta-Misunderstanding

After my 2,000-word thesis yesterday, I’ll give you something short and light to read today.

When Brandt gets sleepy, he tends to talk about very random things.  On Saturday night, well past midnight, he started randomly talking about someone, but I didn’t recognize the name (he was Earless; my excuse is a lifetime of misunderstandings caused by chronic ear infections as a kid).  The conversation went like this:

Me: “…Who on earth is ‘Biekel Burkett’?!”

Brandt: “‘Eagle Bucket’?!”

Me: “Wait, what name did you say?!”

Brandt: “WHOOPI GOLDBERG.”

Me: “Ooooh Whoopi Goldberg!  Yeah, that’s not what I heard at all!”

Brandt: “I don’t know who ‘Beagle Bartlett’ is…”

It was a misunderstanding of a misunderstanding of a misunderstanding.  That’s got to be a new record!

A New Sound

Last night Brandt and I were sitting in the living room playing on our laptops.  He was Earless (no hearing aids) and was typing along happily when suddenly he stopped, and whipped his eyes back and forth.  I thought maybe he had just read something that he was thinking deeply about, when he looked at me and asked,

“Based on your lack of a reaction, I’m guessing you can’t hear that noise?”

I raised my eyebrows and said, “Nooo…  What noise?  What does it sound like?”  He thought about it and said, “It’s like a monotone… which is different.  Usually my tinnitus is like a static.”  “Both ears?” I asked.  He thought again.  “More in the right.”  “Hmm, that’s weird,” I said, “since your hearing is worse in your left ear…”  He laughed, sighed, and said, “Oh goodie, a new sound!  Isn’t this fun?!”

I thought I had fully researched tinnitus and the [lack of] treatments for it, but today I discovered a possible new treatment that is being explored at the University of Arkansas for Medical Sciences.  Dr. John Dornhoffer is the director of both the Division of Otology and Neurology and the Hearing and Balance Center at UAMS, and suffers from tinnitus and hearing loss himself.  While researching treatments for “space motion sickness” in astronauts—which was funded by NASA—Dr. Dornhoffer discovered a possible treatment for tinnitus as well. 

By applying low-frequency, repetitive transcranial magnetic stimulation to the auditory cortex, Dr. Dornhoffer and his colleague Dr. Mark Mennemeier discovered that they could “reduce or eliminate tinnitus temporarily in over 50% of patients,” as reported in the medical journal The Laryngoscope in 2008.  Dr. Dornhoffer explains that they can locate the areas in the brain that perceive tinnitus, target that area with magnetic stimulation, and eliminate the tinnitus; but “the problem is, it doesn’t last very long—that’s the next step, that’s for the future.  Right now we know we can find it, we can localize it, we can make it get better, we just now need to ask the question, ‘How can we prolong the response?’.” 

There are only five Centers in the world working on this research:  two in Germany, one in Belgium, and two in the United States, and “all of us have the same common goal:  To help these patients.”  Here is a video of Dr. Dornhoffer explaining his research on tinnitus (unfortunately it isn’t captioned and the Transcribe Audio isn’t all that great—sorry!):

Dr. Mennemeier also has a video about tinnitus, although it is a bit harder to hear.

Keep up the amazing work, Doctors Dornhoffer and Mennemeier!

   

“HHHHHHRRRRRRKKKKKK!!!”

About 4 years ago, a year after we had started dating, I asked Brandt a question that changed everything I thought I knew about hearing loss.  We were sitting in the living room; he was grading papers, and I was watching television.  He didn’t have his hearing aids in, and I wondered how much, if any, of the TV program he could hear.  “What do you hear right now?” I asked. 

“HHHHHHRRRRRRKKKKKK!!!”

I jumped.  “What was that?!” I yelled.  “That’s what I hear” he said, nonchalant about it.  “That LOUD?!” I asked.  “Actually, louder.  It’s been like that for as long as I can remember.  It used to keep me awake at night when I was a kid.  I thought everybody was like that; I think I was in high school before I realized it wasn’t normal.”  My mouth hung open in shock.  He shrugged and went back to his grading.  I sat there dumbfounded, embarrassed that I hadn't asked this sooner.

I thought that I was a great expert on all things hearing loss-related, since I grew up around Aunt Louise, and had been friends with Josie for several years before I met Brandt.  As far as I know, Louise didn’t have tinnitus (although she never complained about anything, so it’s possible…)  I did know that Josie was not afflicted with it.  She had told me that her Saturday morning ritual was to read the newspaper and watch TV without her hearing aids in, enjoying the complete and perfect silence.  So I just assumed that Brandt was the same way; watching him quietly grade his papers, I thought he was enjoying noiseless tranquility.  Nope, not even close.

Tinnitus literally means “ringing,” but can be perceived as a number of sounds such as buzzing, hissing, clicking, roaring, crickets chirping, beeping, whooshing, or a pure steady tone.  In Odyssey of Hearing Loss, one sufferer describes his tinnitus as:

“air-raid sirens pounding against my skull,” “ocean waves,” “loud lawn mower,” “a ton of bricks falling on a pile of church bells,” and “my brain is gurgling.”

It can be sporadic or nonstop, and ranges from a faint background noise to painfully loud and distracting.  An estimated 50 million Americans suffer from tinnitus, most of whom also have hearing loss.  It has many possible causes, including hearing loss (tinnitus is a symptom of hearing loss, never a cause), noise exposure, earwax buildup, ototoxic medication, and a host of medical disorders.  Tinnitus can be compared to a “phantom limb,” as the brain tries to make sense of the damaged inner ear and the lack of auditory input.

As I was in the middle of studying about tinnitus last summer for my Hearing Loss Support Specialist certification, I started noticing a faint tone in my left ear.  At first I ignored it, but it grew louder and more continuous, until after a few weeks it was a nonstop tone.  It sounded like the high-pitched squeal of an old television set; I couldn’t drown it out with background music, and it kept me awake and in tears every night for two weeks. 

Panicked, I got my hearing tested at Dr. Awesome’s audiology clinic.  My hearing was declared to be “within normal limits” (less than a 20 decibel impairment) except for a mild 25 dB loss at 2000 hertz in my right ear.  It wasn’t the ear that was hearing the noise, so the audiologist had no explanation.  I was desperate for an answer, a cure, or just some relief.  Brandt tried to be helpful by saying, “You’ll get used to it.  It’s annoying sometimes, but you’ll adjust.”  I screamed, cried, and threw a fit, which only made the tone louder.

I went back to my class readings, and had an epiphany.  Ototoxic medication.  About a month before the tinnitus started, my doctor had increased my dosage of blood-sugar medication.  I immediately went back to my old dosage, and two days later, the tinnitus started to subside.  After another week, it was almost tolerable.  I switched to an extended-release form of my medication, and after a few more weeks, the tinnitus was gone.  I could finally sleep in silence again.

Brandt hasn’t been so lucky.  Lately he has been waking up in the middle of the night, mistaking his tinnitus for external noises.  He’s thought it was the smoke alarm, a train, and a jet engine flying over the house.  Each time, he thinks it’s coming from a different source.  Despite this, though, he still doesn’t act like it’s a big deal.  He’s always very calm and mellow anyway, but he deserves some kind of award for dealing with this without complaint.  Sometimes he takes out his hearing aids and comments on how much better his Earless World is—

“Everything is so LOUD out there!  When I don’t have my ears in, my world is so quiet.  All I hear is my static, and it’s so nice.  When that’s all I hear, it’s easy to ignore it, and it’s very peaceful.”

When he says this, all I can think is ‘How on earth can “HHHHHHRRRRRRKKKKKK!!!” be peaceful?!’
  

Terminology Lesson

What’s the difference between the terms Deaf, deaf, Hearing, hearing, hard-of-hearing, and hearing-impaired? The answers are: biology, culture, and personal preference. With over 34 million Americans experiencing some degree of hearing loss, it’s important that we know these distinctions.

“Little-d deaf” and “hearing” are medical, biological terms. They indicate whether a person has the ability to naturally hear sounds through their ears. “Big-D Deaf” and “Hearing,” however, are cultural terms. In Anthropology, culture is defined as a group of people who share the same beliefs, values, and behaviors. I am both “hearing” and “Hearing,” because I can hear normally and because I live and socialize in the Hearing World. Brandt would be considered culturally Hearing, because he still functions in the Hearing World, although biologically he is becoming deaf.

Cultural Deafness requires accepting the values of Deafness, and is solidified by communicating in American Sign Language (the history of Deaf Culture and ASL will be discussed in an upcoming post). Big-D Deaf people do not view their lack of hearing as a disability that needs to be fixed. Instead, they call themselves a “linguistic minority,” because they identify themselves primarily through their language. They are very proud to be Deaf. Interestingly, biological deafness is not a prerequisite to being Culturally Deaf. Sign Language interpreters and CODAs (“Children of Deaf Adults”—hearing adult children of Deaf parents) are often considered part of the Deaf World, because they can communicate in fluent ASL and have extensive experiences with and knowledge of Deaf Culture.

The difference between “hearing-impaired” and “hard-of-hearing” comes down to individual, personal preference. When I was studying for my certification as a Hearing Loss Support Specialist, I was surprised (and embarrassed) to learn that many people with hearing loss find “hearing-impaired” to be offensive. They do not like to be defined by an “impairment” of their hearing, and prefer the term “hard-of-hearing.” I had been using “hearing-impaired” for as long as I could remember, thinking that “hard-of-hearing” was just outdated terminology. Boy was I wrong!

I immediately asked Brandt and Josie about this, and they were surprised as well. They both prefer to call themselves “hearing-impaired,” because “hard-of-hearing” is cumbersome to say and sounds rather antiquated. Brandt didn’t mince words: “Of course I’m hearing-impaired—my hearing is greatly impaired! Why dance around the issue with a politically-correct phrase? I have a disability; my hearing is damaged.”

Oftentimes, “hearing-impaired” is used to cover both Deaf people and people with hearing loss, but it’s actually better to say “Deaf/Hard-of-Hearing” when referring to both groups together. So when you notice that your DVD has subtitles available “for the Hearing-Impaired,” they should instead say “for the Deaf and Hard-of-Hearing” to avoid offending anyone.

As a side note, “Earless” and “Nearly Earless” are terms created by Brandt and myself, respectively.

Class dismissed!
  

Welcome to My “Nearly Earless” World

My great-aunt, godmother, and namesake, Louise, lost her hearing at the age of 20 from a bad reaction to an antibiotic. Completely deaf for 40 years, she learned to lip-read so well that most people talking to her never realized she was deaf. I grew up watching the Closed Captioning scroll across her television screen, and making sure she was facing me before I spoke. In 2003 she received a Cochlear Implant (“CI”), and the following year became the first adult in our state to receive a bilateral (second) implant. Her journey back to the Hearing World has been incredible to witness.

My grandmother lost a portion of a hearing as a child, from a bout with scarlet fever. She’s the kind of woman who never lets anything get in her way, so her hearing loss was just something she didn’t worry much about. It was a running joke in our family that “Grandma Jean can’t hear you, just speak up!” Several years ago, she underwent a breakthrough procedure from the same surgeon who implanted Louise’s CIs, and her hearing was restored.

10 years ago, I met Josie at our church’s Singles group. She was born with severe hearing loss and wears hearing aids. Although I now live two hours away, I still drive in to see Open Captioned movies with her every month or two.

My husband Brandt and I have been together for 5 years. Given my lifelong experiences with hearing loss, I don’t think it was random coincidence that we met. Brandt began noticing his hearing loss in high school, and was fitted with In-The-Ear digital hearing aids in his early 20s. When I met him several years later, he was fairly adjusted to his hearing aids and loss (although I had to convince him that I didn’t mind watching TV with the Closed Captioning on). His hearing deteriorated further, and after 4 years of bad advice from a quack audiologist, he finally got an appointment with Louise and Grandma Jean’s super-surgeon, “Dr. Awesome,” last Spring.

Thinking that his hearing loss “wasn’t that bad,” Brandt was shocked to learn that he had lost 40 decibels of hearing in 11 years, would probably be deaf within 6 more years, and was “in the gray area” of candidacy for a Cochlear Implant. The next few months were a whirlwind of activity. We joined the Hearing Loss Association of America, attended their national convention in Nashville, and Brandt was fitted with $10,000 worth of Phonak technology: 2 shiny blue Behind-The-Ear hearing aids (BTEs), a Bluetooth transmitter, and an FM system—80% of which was paid for by our state’s Vocational Rehabilitation office.

In the last year, I have kept busy educating myself on any and every issue surrounding hearing loss. I became certified as a Hearing Loss Support Specialist and am learning American Sign Language. Since Brandt is too busy running the Science Department at our local college AND getting his PhD to have time for ASL classes, I go home and teach him the signs that I learn in class. We have met a number of people in our local Deaf community, as well as from Cochlear Implant socials and HLAA.

“Earless” is Brandt’s term for being without his hearing aids. When he got his first set of hearing aids, flesh-colored ITEs, he visualized Mr. Potato Head popping his ears off as he was taking them out. So he announces to me that he “is Earless” when his hearing aids are out, so I know to talk loud (not that I need a reminder for that, though!). In the world of chronic illness, the terms “Ill Spouse” and “Well Spouse” are commonly used. With hearing loss, there is the “Deaf/Hearing-Impaired/Hard-of-Hearing Spouse” (depending on how someone identifies themselves) and the “Hearing Spouse.” Another term for the Well/Hearing Spouse is “Shadow Spouse,” because we are not always visible. Hearing aids, Cochlear Implants, and Sign Language are visual, obvious. The spouse, though, is often in the shadows. We don’t have hearing loss, we don’t wear hearing aids, we don’t directly suffer the social isolation or embarrassing misunderstandings that people with hearing loss go through every day. However, we witness these issues up close and personal, and we suffer vicariously as our loved ones suffer. We’re “Nearly Earless.”