“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?!’
  

Accessible Events

One of my favorite blogs, Offbeat Bride, has a post on how to make a wedding accessible to Deaf and hard-of-hearing guests.  The suggestions in the article include: reserving a seat up in front, giving a printed copy of the sermon/vows, and providing a Sign Language interpreter.  Other possibilities that the article does not mention are oral interpreters and CART reporters. 

An oral interpreter faces the Deaf/hard-of-hearing person and mouths what is being said.  Since only 30-35% of speech is visible on the mouth, speechreading/lipreading is a difficult skill to master.  Aunt Louise was a champion lipreader; I did not realize until my Hearing Loss Support Specialist classes that it was so difficult, since she made it look effortless.  I remember attending my cousin’s (Louise’s daughter’s) college graduation when I was in junior high, and Louise hired an oral interpreter for it.  She sat facing Louise, off to the side so Louise could still see the stage, and mouthed the ceremony.  After mouthing about two-dozen graduates’ names, Louise told her, “You don’t have to say all their names, just tell me when my daughter’s name is called.”  I laughed as the interpreter gave a relieved little smile. 

Louise also used an oral interpreter for church every Sunday.  The interpreter was a member of the church who would attend the early service, then interpret the second service for Louise.  A few years after getting her Cochlear Implants, Louise decided that she wanted to rely on her renewed hearing instead of the interpreter.  She loved the freedom of watching the choir and pastor, and hearing them, instead of focusing her attention on an interpreter.

CART reporting—Communication Access Realtime Translation—was unknown to Brandt and me until the HLAA convention last June.  CART is live (realtime) captioning performed by a certified court reporter on a stenotype machine.  The text is displayed either on a projector screen (visible to a large audience) or an a netbook computer (visible to the person holding it).  This is the same basic technology used for Closed Captioning on television.  At the HLAA convention, everything was captioned—the workshops, the ceremonies and presentations, even the socials.  It was wonderful!  Brandt took the picture below at the start of one of the workshops; the projector screen on the left was for the speaker’s PowerPoint slides, and the screen on the right was the CART captioning.  You can see the CART reporter’s stenotype machine and netbook in the foreground.

Even with all this technology, and all my knowledge about making public events accessible to Deaf/hard-of-hearing people, I fell way short when it came to Louise’s funeral.  Granted, I was in so much shock I could barely stand, but I was aware enough to know that we had to get an ASL interpreter.  At Louise’s mother’s (my great-grandmother’s) funeral, there had been both an ASL interpreter and an oral interpreter, for Louise and her Deaf/hard-of-hearing friends. 

I heard my cousin on the phone arranging for an ASL interpreter, which was a huge relief.  But I didn’t think about a CART reporter until it was too late.  We were trying to make all the arrangements on a weekend, with the funeral on Monday morning; by Sunday afternoon, when I realized that Brandt and the other Hard-of-Hearing, non-signing people would need captioning, I knew we’d never be able to pull it off in time.  Since I wasn’t immediate family, and they had more than enough to deal with, it didn’t seem like something I could burden them with.  I didn’t know any CART reporters in town, and it was a Sunday afternoon so contacting the agency would probably be impossible (so I didn’t even try).  Then there was the setup at the church—I knew they had large screens where they displayed song lyrics, so theoretically it should be pretty easy to do, but who would do it?  The pastor didn’t attend the Sunday evening visitation; I had been hoping to ask him then.  So I gave up without even making an attempt. 

At the funeral, the family had the choice of sitting on the far-right side of the chapel in front of the pastor, or on the far-left side in front of the ASL interpreter.  In retrospect, we should have sat in front of the pastor so Brandt could see him.  But I wanted to sit in front of the interpreter, so we did.  A number of Louise’s Deaf friends were signing along with “How Great Thou Art” when we sat down.  It was so beautiful.  Watching the interpreter was comforting and calming for me.  I recognized a lot of the signs, and learned a few new ones.  Afterwards, I asked Brandt how much of the pastor he’d been able to understand.  

“My usual, about a third.”  

I cringed.  We talked to the pastor out in the lobby, and he already had a list of people who wanted an e-mailed copy of his script from the funeral.  Several more came up to him as we talked, saying they hadn’t been able to hear what he’d said and needed his notes. 

I was mortified.  Here I am, the goddaughter of a tireless advocate for people with hearing loss, carrying her name and (I hope) her legacy, and I didn’t do a thing to help them understand her eulogy.  I didn’t even think to ask for a copy of the pastor’s notes beforehand.  Their last memory of Louise is of her inaccessible funeral, where they were only offered an interpreter for a language they don’t know.  And while that’s par for the course to Hard-of-Hearing people, this time more than any other, they should have had equal participation.  It’s a hard, embarrassing lesson, but one I will surely learn from and never forget.  I can only hope that they get the funeral script from the pastor.  I’m still waiting for my copy.
  

What’s ‘Utterly Absurd’ and Gets in the Way?

The answer is: MUSIC!  Brandt hates music.  He doesn’t understand music.  He’s annoyed by music.  He can’t hear over background music.  Really, he just plain hates it.

It was hard for me to fully understand this hatred of music when he first told me.  I thought he was being sarcastic, or at least a little over-dramatic.  Nope, he really really hates it.  This was hard for me to comprehend, because music has always been a big part of my life.  Isn’t a big part of most people’s lives?  If you hear your favorite songs from elementary school (New Kids on the Block) or from your Prom (Goo Goo Dolls), it takes you back.  It gives you a way to connect or reconnect with people.  I played '90s music at our wedding reception in honor of my bridesmaids (friends since high school).  I never would have survived Comprehensive Exams without listening to Linkin Park over and over.  I have great memories of attending Aerosmith and Third Day concerts.  So it’s difficult to imagine hating music in any and all forms.

Brandt initially explained his dislike of music simply: “It gets in my way!”  That I could understand.  If there is loud, annoying music in the background, he can’t hear over it.  So I stopped listening to it in the car unless I was alone, and I learned to ask others to turn off the music playing during their dinner parties.  But it’s hard to escape all music all the time.  We were in Kroger the other day, and “Hungry Eyes” was playing on the speakers overhead.  Without even thinking, I started singing along (while wearing the FM system).  Finally, poor annoyed Brandt asked me to stop singing and I apologized, saying I was singing along with the music and didn’t realize I was doing it.  He asked, puzzled, “There’s music playing? I thought that was just random loud noise.  I don’t understand how you Hearing people can like music…”

He commented once, a few years ago, that he wondered what kind of music he would like if he could actually understand it.  It was a very sad moment for me.  How do you answer that? 

I was surprised when we went to the HLAA convention last year that just about everyone else there LOVED music.  At the opening-night social, they set up karaoke.  LOUD karaoke.  I could barely hear anything over the booming music, and finally asked Louise, “how can anyone hear each other?  It’s SO LOUD!”  “Is it?” she asked me.  “I think it’s wonderful!”  Brandt and I finally had to leave; he couldn’t talk to anyone, and my ears were ringing.  We both though it bizarre that a roomful of deaf and hard-of-hearing people were having so much fun singing.  I knew that Louise had always loved music, and played the piano and clarinet before losing her hearing.  She even directed the children’s choir at her church for many many years, after becoming deaf.  Josie, also, enjoys music and has an extensive collection of CDs and iTunes playlists.  I find this fascinating.  Brandt finds it annoying.

This past weekend, we had Saturday Night Live playing in the background while Brandt was writing a paper and I was reading a book during the commercials.  I muted the musical guest, MGMT, because I could tell just by looking that Brandt would hate them.  To my surprise, he looked up and started reading the captioning for their song “Brian Eno.”  He read silently for a minute, then said, “You know, when you can’t hear the music and you just read the words, it’s utterly absurd.”  I laughed, then started reading myself; and I quickly agreed with him.  “Um, yeah, this is absurd.”  He continued, “They’re trying to make themselves out as philosophical sages, but they’re really just spouting stuff.”

You be the judge*:

All the space left for you
If the sky was synthesized
You’d probably know
He taught me many things
The wisdom of bleak stratagems
The prophet of a sapphire soul
Presented through creative freedoms
…He promised pretty worlds
And all the silence I could dream of
Brian Peter George St. John
When I tried to humanize by ambient light
Dipping swords in met force yeah,
But what does he know
He’s going to the whole world behind him
Here’s Brian Eno

* this is what our Closed Captioning said the lyrics are.  And when I actually listened to the song later, it was rather catchy; just reading the words is an entirely different experience though.

  

One Small Step for Netflix

How about some almost-good news?  Netflix has FINALLY introduced captioning/subtitles on their Instant View feature.   The announcement says that it’s only available on 100 titles right now, and suggests that we try watching the first four seasons of Lost.  Roughly 25 episodes per season…4 seasons…hmm, that equals about 100 captioned titles.  Titles that are already available captioned for free on Hulu.com (and includes Seasons 5 and 6).  So there’s still a looong way to go.

Josie and I have been complaining about the lack of captioning on Instant View for years, pretty much since the feature first became available.  “Where are the captions?!” we repeatedly asked each other.  We sent e-mails asking that question, and finally the answer was added to their FAQ page: 

Foreign-language movies watched instantly on your PC will have subtitles. We don't currently provide Closed Captioning, nor subtitling of English language movies, but you’ll find those on most of our DVDs.  

Gee, thanks for telling us.

I’d finally had enough, and last February I sent letters to Netflix’s Public Relations department, Chairman/President/CEO Reed Hastings, and Chief Marketing Officer Leslie Kilgore.  A month later I received a reply ‘on behalf of’ Ms. Kilgore: 

Although we don’t currently have an ETA, providing Closed Captioning on titles available for instant viewing is something we hope to include in future versions of our instant watching feature.  

Vague, and didn’t promise anything. But, shortly afterwards Netflix updated their FAQ: 

Foreign-language movies streamed to your PC, Mac, or TV have subtitles “burned in” to the video (“open captions”). However, we do not currently provide closed captions or subtitles for English language movies when streamed, although you can find them on most of our DVDs. The technologies we use for streaming do not yet adequately support closed captions, and most viewers object to permanently visible open captions, which they cannot turn off, burned into the video stream for English-language content. We are working on delivering closed captions or optional subtitles in a future technology update, probably first for PCs and Macs, probably sometime in 2010, and later for various TV-connected devices as new firmware can be created and the devices updated.

The timing of this is great, since THREE of Brandt’s documentaries this month didn’t have subtitles available.  And although I’ve never gotten into Lost, I did watch the Pilot episode just to test out the captioning.  It’s a good size and easy-to-read yellow font, so no complaints there.  Unfortunately I like to watch Instant View through our television’s Window’s Media Player setup, to keep my laptop freed up, and the new captioning only works on Macs and PCs.  So again, looong way to go.  But it's a decent first step, Netflix.  Now keep it up!

Louise’s Legacy

It is with great sadness and lingering shock that I announce the most tragic of news. My greataunt, godmother, namesake, mentor, and inspiration has passed away unexpectedly at the age of 71. Louise was a tough yet selfless woman who taught me, in both instruction and example, to “never, never, NEVER give up!” She was tirelessly devoted to her family, friends, church, community, and people with disabilities.

Louise lost her hearing two months shy of her twentieth birthday, from a single shot of the “wonder drug” antibiotic Streptomycin. For the rest of her life, she devoted considerable energy to advocacy for the D/deaf, hard-of-hearing, and others with disabilities. She served for many years on the Governor’s Commission for People with Disabilities and was honored as the State Volunteer of the Year. One of her many accomplishments was helping to found and implement our state’s Relay Service, a telephone service for the D/deaf and hard-of-hearing—one of the first in the country. Louise was the State Coordinator for the organization Self-Help for Hard-of-Hearing People/Hearing Loss Association of America from 1991 to 2007. In 2004, she became the first adult in our state to have bilateral cochlear implants, and had recently rediscovered her love of the symphony. She was frequently called upon to speak to students and faculty at local colleges and universities, delivering her last talk just two days before her death.

Louise’s husband of 53 years, Bill, showed me through example how to be a loving, devoted Hearing Spouse. Though the short fuse on my temper makes me unable to ever duplicate his unwavering patience, the love and devotion between them is something I will always strive to emulate.

To say that I am devastated is, of course, a gross understatement. I had only just begun the interviews with Louise for my book, and since I had just launched this blog a few days ago (and Louise’s internet had been out), I had not been able to tell her about it yet. She was ecstatic to be working with me on this project, and saw Brandt and me as the leaders of the next generation’s advocacy for the Deaf and Hard-of-Hearing. At her visitation and funeral, I talked to a number of her Deaf and Hard-of-Hearing friends and colleagues (I was so exhausted and stunned, my signing skills were practically non-existent; however, I was able to pull off a little conversation). They told me that it now falls on my shoulders to carry on Louise’s legacy. No small feat, a challenge that I will surely never fulfill, at least not completely, as who could pick up the torch of a legend, Superwoman, the ultimate Steel Magnolia?

But I have her name, and I have her passion. And I think that’s a pretty good start.

Automatic Captioning

Happy IRS Day! I know it’s stressful, trying to get your taxes mailed off at the last minute (unless you’re a geek like Brandt and sent them off in February), so today’s post is meant to add a little humor to your day.

Last March, Google launched a service called Google Voice that automatically transcribes voicemail messages into text messages. The potential this has for assisting Deaf and Hard-of-Hearing people (and many others!) is huge. In practice, though, it still has a long way to go. Google Voice is currently available by invitation only, and Brandt the technology-geek got his hands on one a few months ago. He installed it on his iPhone during our first snow day of the season in January, and I had way too much fun testing it out.

My first voicemail message:

“Hi honey! It’s snowing and sleeting outside! Holy s***, it is so cold! We didn’t have school today, hurray! Bye!”

Google’s transcribed text message:

“Hi honey, it’s snowing ends waiting outside we shared. It is so how old the business today and I hi.”

I figured maybe my voice was too high and excited, and if I talked slower it would help. Brandt asked off-hand, “I wonder how it will do with my mother’s messages, since she talks so slow?” I thought that was a great idea, so I called ‘pretending’ to be his mother—including her thick Southern drawl.

What I said:

“Hi Brandt. How are you? We are good. Did it snow there? It sure snowed here! The horses don’t like all the ice on their feet. Well, we love you. Bye.”

What Google says I said:

“Hi Brandt, How are you. We are good. He it. It’s now and then it’s Cherice and I will be here. So courses. Don’t white all eyes on the house 8 whale. We love you bye.”

Keep in mind that with her thick accent, ice does indeed sound like “eyes,” and well is pronounced “whale.” You will see this again in a minute.

The Southern accent was so much fun, I next tried a Boston accent:

“Hi, Brahndt, pahk yah cah in Hahvahd yahd.”

What Google sent:

“Hi Barack. Hi, Yahoo, it's Ron Probably Holland.”

I love that Barack is now a part of our lexicon!

My favorite transcription of Brandt’s mother’s message has to be:

“… we just wonder how you’re coming with all of your Laotians…”

I read the text and asked him, “What word is THAT?” So he started explaining, “Laos is a country next to Vietnam…” I snapped at him, “I know what ‘Laotian’ means, I meant what word did she actually say?!” Then I laughed and called him a jackass. I wondered if she could have said “lessons,” since he was working on his homework. We listened to the message and sure enough, she’s said lessons. I like Laotians better though.

Tonight’s message from her:

“We're all in for the night and I'll lease whales and we trust you all are. Take care of your sales ways. Love you.”

I told you we’d see those whales again!

The same voice recognition technology used for Google Voice was recently added to YouTube videos, in their new Auto-Captioning feature. Notably, one of the people who worked on the project is Deaf. His team focused on accessibility for disabled people, specifically the Deaf and Hard-of-Hearing. Try watching THIS VIDEO with the Auto-Captioning turned on (click the red “CC” button on the bottom toolbar, then select “Transcribe Audio”). This is from my favorite channel on YouTube, CODA Brothers. They are Hearing children of Deaf parents, and their videos are hilarious. They speak in sign and then dub their voices onto the video later. There’s a lot going on at once, with Sign, voice, and captioning simultaneously, but it will give you a little insight into ASL/Deaf Culture in preparation for our history lesson coming up soon.

[I tried embedding the video into this post, but the captions didn’t come with it, so you’ll have to watch it directly on YouTube. Technical difficulty!]

And despite what the captions say, at no point in the video are they talking about phenolphthalein, lynching, helicopters, or negative campaign tactics; and of course the word is “Deaf,” NOT death.
 

Red Lobster

Whenever we have to venture into the Big City from our little suburb, we try to go out to a ‘nice’ restaurant, since our town only has 4 decent restaurants to choose from and we get tired of them very quickly. So on our way to the mall to pick up my birthday present (a gorgeous Fire Topaz ring—good job, Brandt!) we ate at Red Lobster for their Lobsterfest. It was really crowded, so I was worried about how well Brandt would be able to hear me. We had the FM system, of course, but I was still concerned.

We were seated at a 2-person booth, with another 2-person booth right next to it. There was a narrow partition between them, but it was only a little bit higher than the top of the table. So essentially, we were sitting together with the two ladies next to us. Huh. This is going to be interesting. I already get glares from fellow restaurant patrons sitting across the room—I talk THAT LOUD—so this was going to be a challenge. Trying to talk loud enough for Brandt to hear me clearly, but not so loud that the lady sitting 6 inches away could participate in our conversation…

Our waitress was awesome: loud, animated, and very inquisitive. She introduced herself and immediately asked me, “So what’s that thing around your neck?” I laughed. Brandt told her, “I’m glad you asked; most people don’t.” “Really?!” she was surprised. “That’s the first thing I noticed, I wanna know what it is! My mother always said, ‘can’t learn until you ask.’” “Most people just stare at it, but don’t ask,” I said, explaining that it’s an FM system with a microphone that transmits my voice directly to Brandt’s hearing aids. He pointed to his ears. “So she comes in loud and clear, and I don’t hear all the background noise that’s going on in here.” “COOL!” she yelled. “It is cool!” we agreed.

I have only been asked about the FM system a handful of times. Two people thought it was a new kind of recording device that takes either photos or videos (these gadgets can be used for blogging or to help Alzheimer’s patients remember what they’ve done that day). I hardly ever get questions, but I get a lot of stares. It was the worst in Las Vegas last Fall; maybe it was just because I’m not used to so many people in such a concentrated area, but it seemed like half the people that walked by were staring, puzzled, at the FM transmitter clipped to my cleavage.

Dinner went fine; it helped a lot that there was no loud music playing overhead. Brandt didn’t have any problems hearing me, and since the FM system’s microphone was aimed away from the ladies next to us, he missed out on their conversation about bar mitzvahs and Aushwitz (I missed part of it, so I have no clue why they were discussing a concentration camp, but they said “Auschwitz” half a dozen times each).

I did have to help him out was when our waitress asked him at the end of the meal if he liked the gumbo, which he’d eaten at the beginning of the meal. He nodded, saying, “Good, it was very good.” He had told me it wasn’t all that great, so I knew he didn’t hear her say “gumbo” (the FM system was aimed at me, not her). She answered, “Oh good, so it wasn’t too spicy?” He nodded again. “Good. It was all very good.” I jumped in to help. “Gumbo. She’s asking if you liked the gumbo, was it too spicy?” “Oh, the gumbo!” he exclaimed. “It was so-so. Not too spicy though, no.”

As he was figuring out the tip, Brandt jumped in his seat and looked frantically around the restaurant. “Blender,” I answered, before he even asked. “Someone’s getting a frozen drink over at the bar.” He sighed. “Ah. I couldn’t figure out what that sound was!” “I know…” I said.
 

What the Future Holds (or, Inside the Gray Area)

There is no such thing as a deaf chicken.

I know that sounds like the punchline to a joke, but it’s true! Birds have the ability to regenerate damaged inner hair cells in their cochlea, making them unable to become permanently deaf. Brandt and I learned all about chicken cochlea last June at HLAA’s annual convention in Nashville, in the Research Symposium “An Update On the Latest Hair Cell Regeneration Research” presented by the Deafness Research Foundation.

The Research Symposium was the main reason we wanted to attend the convention, because Brandt had been told for many years by “Dr. Smith” that stem cell therapy was his only hope. Just two months before the convention, last April, Dr. Smith told us that Brandt would never have to worry about getting a Cochlear Implant because he wouldn’t go deaf for another 20 years, and by then he could just get stem cell therapy to re-grow his damaged inner ear hair cells. WRONG on so many levels, Dr. Smith!

First of all, as we found out last May from Dr. Awesome, Brandt will probably be deaf in only five or six more years, making Cochlear Implants his only possibility for immediate replacement of his hearing (but we still held on to Dr. Smith’s promise of natural, restored hearing in 20 years). Second, as we found out later, stem cell therapy is a lot more than 20 years away. And third, Brandt is probably not even a candidate for it!

Imagine our shock and disappointment when the researchers explained that stem cell therapy was probably another 40 to 60 years away from public availability, and that people with genetic hearing loss like Brandt are NOT good candidates for it. Because his inner ear hairs are being damaged by internal, genetic causes, the gene(s) causing it would first have to be identified and eradicated from his body. Otherwise, if he received stem cell therapy and had his hearing restored, the ear hair cells would just be killed off by the faulty genes again. Good candidates are people whose hearing loss was caused by an environmental factor, such as exposure to loud noise or ototoxic medication, like my Aunt Louise.

Fortunately, the Hearing Loss Gods were smiling on us that humid weekend in Nashville, and Brandt discovered just how amazing Cochlear Implants are.

Cochlear Implants are very different from hearing aids. Hearing aids just amplify a person’s residual hearing. CIs replace a person’s natural hearing, bypassing the damaged inner ear and sending sound—in the form of electronic signals—directly to the brain. Cochlear Implants consist of 2 main components, one internal and the other external. The internal component is surgically implanted onto the skull, and its electrode array is placed inside the cochlea (don’t worry, nothing comes into contact with the brain itself). The electrodes stimulate the auditory nerve and send the information to the brain, which interprets the information as sound. The external component is the sound processor, which is worn either on the body, or like a large Behind-the-Ear hearing aid. Microphones on the processor pick up speech and other sounds. The headpiece has a magnet that connects the external processor to the internal implant. Advanced Bionics has a short (and captioned!) video that explains how the CI works.

The main drawback to a Cochlear Implant is that in most cases, it wipes out the recipient’s residual hearing, making them completely deaf when the processor is off. This is why we have to wait until Brandt loses more of his residual hearing before he can get a CI. He is still considered “in the Gray Area” of being a CI candidate because his Word Recognition Scores dropped from 100% to 24% in only 6 years. Even without a detailed explanation of Word Recognition testing, you can guess how significant a 76% drop in speech discrimination is.

We don’t know how long we will be stuck in the Gray Area, impatiently waiting for more hair cells in his cochlea to die off, further impacting his ability to hear and process speech. The cruelty of this situation is that I am in effect wishing that my husband goes deaf, suffers more social embarrassment, misunderstandings, and frustrations, in the hopes of someday achieving CI Candidacy status. I have seen how happy Cochlear Implant recipients are; not only my Aunt Louise, but every CI user we have met tells us, “Don’t wait, I wish I’d had this years ago, it has changed my life!” When they ask us the inevitable question, “What are you waiting for?!” the answer is simply, “To get out of the Gray Area.”
 

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!
  

Hearing Aid Whisperer

I should have been an audiologist.

Brandt spent alllll weekend writing a paper, so last night he really needed to get out of the house for a while. We quickly decided to have dinner at the new Mexican restaurant in town. Ready to leave, I went in search of the FM system. I found Brandt looking quite frustrated, fiddling with his hearing aid. “What’s wrong?!” I asked. “My right hearing aid isn’t turning on.” Oh, crap. “Uh, the one that you just had completely rebuilt a few months ago?” “Yep.” OH, CRAP.

He turned it off and back on; nothing. He popped out the battery, the one he had just replaced 2 days ago, and tried again. Nothing. Tried yet again. Still nothing. He twisted off the tubing, and suddenly it worked—loud squealing feedback. “Whew!” I said. He twisted the tubing back on, and it stopped working. “Oh.” He did this several times. He held the earmold up to my ear and talked; I heard nothing. He fished the hearing aid cleaning kit out of his bookbag, went to the kitchen table, and stuck a long, thin, green thingie (“it’s a pipe cleaner without the pipe,” he explained) into the tube. Same thing happened. Without the tubing, it worked, but with the tubing, nothing. He could control the settings of the LEFT ear by switching them on the right hearing aid, but no sound was coming through. So I said, “It must be a problem with the tubing…which is weird, because it’s just a piece of plastic, right?” He tried cleaning out the tubing again. Nothing. Then he switched the tubing of the two hearing aids. Now the left tubing was on the right hearing aid and vice versa. Suddenly the left one worked fine, and the right one was silent. Huh. This confirmed what I’d said before, it was a problem with the tubing. “Is it clogged with wax?” I asked. “I just cleaned it out, though...”

In the last 9 months, I have lost count of how many times we’ve had to drive the 2 hours back to Dr. Awesome’s audiology clinic for repairs to Brandt’s new technologies. The right hearing aid stopped working and had to be completely rebuilt, the iCom (Bluetooth transmitter) has been sent off three times for repairs, and the settings have been reset half a dozen times at least. All of this is frustrating enough, but it’s compounded exponentially with the 250 miles we have to travel round-trip for these repairs.

“I really can’t go to the audiologist tomorrow; I’m barely going to get everything done this week as it is!” Brandt lamented, checking Monday’s work schedule on his iPhone. “I will go to the audiologist” I said. “No, I’ll have to go…” he said wearily. I screamed “NO! There’s no way you can go! I will take the hearing aid in tomorrow. Surely they have spare parts, right? Is that part of the actual hearing aid, or is that just another piece of tubing?” Brandt shrugged. “Why do I have so many problems with these?! With my old ones, I just wore them and never had any trouble. But with these, I can’t even go—how long has it been? Two months?—without something happening with them. I just want to hear! Why is that so hard? I just want to hear like normal people! It would be so much easier if I could just hear!” I didn’t know how to respond. So I didn’t. I just sat there, dumbfounded, not knowing what to do, holding back tears. He put his head down and sighed. I stared out the kitchen window. A big brown rabbit hopped up to the window. “Yard-bunny is saying hello to you,” I said, pathetic.

We went to dinner, Brandt one-eared. Half-Earless. He didn’t really want to go there, since it would be “more effort and strain” for me, and I waved him off telling him it didn’t matter for me, I was just worried for him. He did amazingly well considering we were seated right next to the kitchen, there was mariachi music blaring overhead, and a loud table of pee-wee baseball players were sitting next to us. Our waiter was hard to understand, so I did most of the talking to him. The girl at the cash register asked Brandt “How was everything?” when he was fishing for his wallet. She looked at him expectantly; I finally answered, “It was great, thank you.”

When we got home, he went right back to the hearing aid. I said, “There has to be something clogged in it, in that little white thing, the moisture-blocker thing. Try blowing in it.” It didn’t help. “What about canned air? It probably won’t help, but at this point, you can’t really make it WORSE.” (Brandt is a technology-geek—we have A LOT of electronics in our house. Canned air is the best way to clean out all the dust that gets stuck inside the components.) He liked that idea, running off to find the can. I told him, “If the audiologist asks, this was YOUR idea!” He stuck the thin little nozzle into the earmold, and aimed towards a random receipt sitting on the table. After a second, the air puffed out the other end, rustling the receipt. “I saw something! Something happened!” he exclaimed. He quickly reattached the tubing to the hearing aid, popped it in his ear, and turned it on. It was a loooong 7 seconds waiting for it to power up.

“Beep-bee-bee-beep!” I screamed, “OH THANK GOD! I AM A GENIUS! JUST CALL ME THE HEARING AID WHISPERER!” Brandt winced. “It’s definitely working now!” he yelled back. “TOO LOUD?” I asked. He nodded emphatically, adding, “Thank you, honey.” I did a happy dance around the room.
 

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.”