5 Years in the Gray Area

Brandt's annual appointment with Dr. Awesome has always been in May, but this year it wasn't until September, I think because Dr. Awesome took a summer vacation. It turns out this might have been beneficial for us, because just in the last MONTH Brandt's right ear has seriously declined. Along with decreased hearing and comprehension in that ear, the tinnitus has significantly increased—which potentially indicates more hearing loss. The right ear was always his better ear, the ear he relied on. So this sharp decline has pretty much guaranteed that I have to repeat everything I say at least once, if he even realizes that I am talking. It's beyond frustrating for both of us.

At the appointment, his left ear hadn't really gotten worse. He only lost an average of 2 decibels, going from a 70 dB loss to 72. Speech comprehension was the same at 20% (which you would expect from someone with much less hearing, but he's been scoring about 20% every year.) But the right ear—WOW. He lost at least 10 to 15 decibels at every level except 500 Hz, where he lost 25 decibels. His average loss went from 63 dB to 78.  Seventy-eight. His entire average loss dropped 15 decibels in a YEAR. I still can't fully grasp it. His speech comprehension in the ear dropped from 36% to 28%, and I'm very surprised that it wasn't lower.

Right ear loss—2012: 63 dB; 2013: 78 dB

Left ear loss—2012: 70 dB; 2013: 72 dB

First we met with Dr. Windsor, who is Dr. Awesome's new Fellow. His tie was in a Double-Windsor knot, which really impressed Brandt—he can't stand the asymmetrical Single-Windsor. They became instant Tie Buddies. After reviewing Brandt’s information, and trying to determine if an injury or change in medication could explain the sudden decline in one ear (nope, nothing) he asked, "What are your feelings on cochlear implants?" I laughed and groaned simultaneously. We gave him a brief rundown of the past few years, of the failed evaluations despite Dr. Awesome's opinion that he should qualify and would benefit greatly from CI. Dr. Windsor said, "Well I agree with Dr. Awesome, we're sending you back for another CI evaluation."  

Dr. Windsor left the room for a minute and returned with Dr. Awesome and a resident who stood silently in the corner. They discussed amongst themselves about Brandt needing either an MRI or a CT scan, whether he could possibly have Auditory Neuropathy, and the need to rule out EVA. (I was pretty lost and had to resort to google when I got home—EVA is Enlarged Vestibular Aqueduct, which can cause hearing loss.)  

Dr. Awesome explained that Brandt is "not like the usual person" and could possibly belong to a "certain subset of patients" that actually has nerve degeneration (Auditory Neuropathy/Dyssynchrony) rather than the typical inner ear hair cell degeneration. It is usually diagnosed in children who have severe hearing loss but functioning hair cells. I thought this was bad news, but Dr. Awesome said that he has implanted patients with this condition and they were successful with CI. I am still confused, because a CI candidate has to have a functioning VIIIth auditory nerve, but there is research showing that AN/AD patients typically do well with CI. Hmmm.

Some possibly good news, or at least NEW news, is that the Cochlear Implant Team now has monthly meetings to discuss controversial patients/candidates. Dr. Awesome, Dr. Windsor, and the resident (he finally got to talk!) agreed that Brandt should be a candidate and that they would argue his case at the next panel meeting after he gets re-evaluated. So…if this were several years ago, I would probably get a little excited. But after two rounds of failed evaluations—and I am still devastated from that awful first evaluation—I just can't get my hopes up even the slightest bit. At least now we know that Dr. Awesome and Dr. Windsor will be taking the extra step to fight for our very unusual case.

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!

Subway

We went to Subway for a quick dinner last night, and Brandt ordered his sandwich first while I was still deciding.  One of the two girls working there asked him if he wanted his sub toasted, and he didn’t hear her.  She looked at him expectantly and he said, “I’m sorry, did you ask me something?”  She repeated the question, and he didn’t understand her.  She said it again, pointing to the toaster.  Brandt said, “TOASTED!  Yes, I want my sandwich toasted.  Sorry, I’m deaf…” 

Both girls laughed, and the one making his sandwich said, “Ha, you’re deaf.  That’s funny!”  Then she asked what all he wanted on his sandwich, and again he didn’t understand her.  She looked at him and said, “Wait, are you kidding?”  He cupped his hand behind his ear and said, “I’m sorry, I didn’t understand you…” 

Now they weren’t sure what to think.  I debated when I should chime in.  “You’re not really deaf…right?” one of them asked.  “I’m sorry?” he said, looking confused.  The two girls looked at each other, getting uncomfortable.  “You’re just playing, right?  You’re not really deaf!” the second girl said nervously. 

“No, he’s really deaf,” I finally jumped in.  “He’s not kidding, he’s deaf.”

Brandt took out one of his hearing aids and showed it to them.  They both gasped.  “Oh my lord, I am so so sorry!” one shrieked.  “Oh my god, I can’t believe I said that to you, I’m so sorry you’re deaf!!” the other said. 

He waved them off, chuckling, and said, “Oh, don’t worry about it.  I’m used to it.”

I thought it was interesting that Brandt used the word “deaf” instead of “hearing-impaired” (he doesn’t like the more politically-correct term “hard-of-hearing”).  Each term brings up different connotations and different expectations about how a person might be able to hear and interact.  Just like the choice of using “hearing-impaired” versus “hard-of-hearing,” it’s a personal choice to use “deaf” instead.  My hearing is technically impaired, although not nearly as much as Brandt; and I can interact with others—for example, the girls at Subway—much easier than he can.  So by saying that he is “deaf,” it’s a quick way to let others know that he’s probably going to have a difficult time understanding them the first time they ask a question.

1 in 5 Teens has Hearing Loss

In 1994, roughly 1 in 20 American adolescents had some degree of hearing loss.  By 2006, the prevalence jumped to 1 in 5—about 6.5 million children aged 12 to 19, according to a new study published by the Journal of the American Medical Association.  One of the authors, Dr. Roland Eavey, says,

“What we're seeing is a big jump in the prevalence of hearing loss in a very short period of time, in less than one generation.  That means we're on the front edge of an epidemic.”

The main culprit (probably not too surprisingly) is suspected to be exposure to loud noises, especially music.  Tommie Robinson, president of the American Speech-Language Hearing Association, says,

“I believe this is rooted in a cultural paradigm shift in terms of how electronics have become ‘the thing.’  Everyone has something in their ears.”

Recent reports have determined that “not only do teenagers play music at louder volumes, but they are completely unaware they are doing so.” 

Dr. Eavy suggests that when giving a child or teenager an iPod (or other MP3 device), to set the maximum volume limit at a lower level.  Apple has detailed instructions on setting the volume limit on its website, as well as a page on “Sound and Hearing.”  Other informative websites are “How Loud is Too Loud?” and “It’s a Noisy Planet,” both by the National Institute on Deafness and Other Communication Disorders,  and “Listen to Your Buds” by ASHA.

The “Listen to Your Buds” website has a number of recommendations for reducing childhood noise exposure, including wearing hearing protectors.  I personally swear by foam earplugs, which block out the sounds of trains and neighborhood dogs when I’m trying to sleep.  And while I love loud bass and spent my teenage years blaring music as loud as it would go, it undoubtedly contributed to the minor-to-mild hearing loss (15 to 25 decibel loss) that I now suffer.  I’ve decided that from now on, I’m going to take a pair of earplugs with me to concerts, wedding receptions, and other loud venues.  Earplugs now come in a variety of colors and styles—even specifically for musicians and concert-goers—and I hope they can become popular among teenagers who don’t want to lose their hearing before the age of 20!

  

“Homeless Tequila”

Misunderstandings happen to everyone; they’re a part of life that we generally just deal with, without giving them much thought except for maybe a brief annoyance or chuckle.  However, for people with hearing loss, both the frequency and the frustration of misunderstandings are much greater, often leading to intense embarrassment and even social isolation. 

There are two types of misunderstandings: knowing you didn’t hear it right, and thinking you heard it right when you didn’t.  The second type is much worse, of course, and can cause all sorts of problems.

The worst/best/most memorable misunderstanding Brandt and I have had was about 2 years ago.  (I knew his hearing was getting worse, but “Dr. Smith” kept refusing to test it.)  I asked Brandt an innocent question when I got up one Saturday morning: “Hi honey, how are you?”  A mixture of pain and confusion pulled down his face. 

“Why am I Homeless Tequila?”

he asked in disbelief.  “What—?!” I stammered.  “Why would you call me that?” he continued.  “I would never call you something like that.” 

Another time, Brandt was doing Statistics homework and grumbled to himself.  I asked him, “Why are you grumbling, honey?”  He made a sad, insulted face and said,

“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 answered, laughing, “I’m grumbling because I’m tired but I have to finish my homework before I can go to bed.  By the way, EARS SUCK!”  I responded, “Apparently!”

A less offending one happened when we were in Brandt’s hometown for his high school reunion.  As we drove by the old school buildings, I asked him, “Does it bring back memories?”  He coughed and asked,

“Does it bring back ovaries?!”

This reminds me of the Sprint PCS commercials from a few years ago that featured “Trench Coat Guy.”  He would appear when bad cellphone service caused hilarious misunderstandings.  In my favorite of the commercials, the wife calls her husband to say, “Get a movie; you know, something old,” but the husband hears, “Get a monkey, with a cold.”  Trench Coat Guy tells the wife, “It’s not his fault, it’s the cellular static.”

In another commercial, the wife asks her husband to bring home shampoo, and instead he brings home the killer whale Shamu.  Trench Coat Guy again explains to the angry wife, “It’s the cellular static.”

This is what we’re dealing with in Brandt’s situation, too—cellular static.  In his case, there are two types of static: the literal, LOUD static that he hears all the time (tinnitus), and the “static” of hearing loss that garbles and muffles what he hears.  Both of these are caused at the cellular level, by his damaged inner-ear hair cells.

The initial reason that I decided we had to learn Sign Language was to help cut down on misunderstandings caused by Brandt’s “cellular static.”  So if he’s about to go grocery shopping and asks me, “Did you say to get grapes or cake?” then I can repeat it with both speech and sign (as soon as I learn more food signs; so far I only know APPLE, POTATO, COOKIE, and MILK).

Another big help for cutting down on misunderstandings, especially when we’re not face-to-face, are e-mails and text messages.  I don’t like having to pay for every text, but they’ve been a huge help!
  

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.
  

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.

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!