Our ‘Hearing Cat’

You are no doubt familiar with Seeing-Eye Dogs, which are guide dogs used by blind people to help them get around more easily.  You might have even heard of Seeing-Eye Ponies (or “Guide Horses”) and Helper Monkeys, too.  But did you know that there are Hearing Dogs used by Deaf people?

I didn’t know that Hearing Dogs existed until the Hearing Loss Association of America convention last summer.  There, Brandt and I saw over a dozen Hearing Dogs, wearing their orange vests, ranging from a tiny Pomeranian to a large Golden Retriever.  I then learned a lot more about Hearing Dogs in my Hearing Loss Support Specialist certification class.

  

Hearing Dogs are trained to alert their Deaf or Hard-of-Hearing owner to a number of sounds including smoke alarms, doorbells, ringing telephones, alarm clocks, sirens, and someone calling the owner’s name.  It costs about $25,000 to select, care for, train, and follow-up with a Hearing Dog, but the owner only has to pay a $50 application fee.  Since the HLAA convention, I have met several people who have gained confidence in venturing out in the world since losing their hearing, thanks to their furry Hearing companion.

Brandt and I aren’t really dog people, so he’s not planning on getting a Hearing Dog.  Unfortunately cats aren’t trainable to alert their owners to specific sounds, but our kitty, Cupcake, does alert Brandt to one thing—she lets him know when I get home. 

Our living room is off to the right when you walk in the house from the garage, and the couch is on the inside wall of the garage.  When I get home from ASL class, the grocery store, etc., Cupcake will jump up on the arm of the couch and start meowing at the door to the garage.  Even with his hearing aids in, Brandt can’t hear the garage door going up, but Cupcake sure can.  This is a relatively new trick that she has developed, but she has been very consistent with it since she started doing it last year.  It’s not as helpful as alerting him to the smoke alarm or having his name called, but, it keeps him from jumping out of his skin when I burst through the door unexpectedly. 

I don’t have a picture yet of Cupcake in her “Mommy’s home!!” position, but here’s one of her sitting on the other arm of the couch, next to Brandt’s recliner.  She was mad that my cereal bowl was in her way, so she put her tummy in the bowl and laid down anyway:

Video Series from HLAA

The Hearing Loss Association of America (HLAA) has created a series of 7 captioned videos on hearing loss.  The topics of the videos are:

• Hearing Loss Basic Facts
• Hearing Loss Symptoms
• Hearing Loss Diagnosis
• Hearing Loss Treatments
• Living with Hearing Loss
• Hearing Loss Causes and Prevention
• Hearing Aids, Cochlear Implants, and Assistive Listening Devices

HLAA says about the new video series:

“Information you need to be adequately briefed on the topic is all in one place in an easy-to-access format. If you think you have a hearing loss or know someone who does, please point them to the videos where hearing health care professionals and people with hearing loss talk about what you can do about it.”  

Here is the first video in the series, “Hearing Loss Basic Facts”:

The HLAA website also has a series of factsheets.  Topics include Information and How to Get Help, Hearing Aids, Cochlear Implants, Baha (Bone-Anchored Hearing Aid, for conductive hearing loss), Assistive Technology, Telecommunications, and a Glossary of terms related to hearing loss.

  

Poor Opryland

The weekend flooding in Tennessee, especially Nashville, has wreaked major havoc on the Gaylord Opryland Hotel where we attended the Hearing Loss Association of America convention last June.  The bottom floor of the hotel is currently under 6 to 10 feet of water inside, and they might have to close for up to six months for renovations. 

This makes me sad because I have such wonderful memories of the Opryland Hotel and the HLAA convention.  It was where Brandt first discovered just how amazing Cochlear Implants are and decided that not only were they “not so scary afterall,” but that he really wanted one, ASAP!

The Opryland is the largest non-casino hotel in the world.  It is made up of several huge atriums; with its all-glass ceiling, indoor river, and thousands of plants and trees, it really does feel like you’re outside.  Because it has gone through so many expansions, the layout of the enormous hotel is very confusing.  If Brandt hadn’t been with me to navigate, I never would have found the convention from our room—it was half a mile away!  You really have to see it in person to fully appreciate just how ginormous the place is; pictures can't do it justice.  But, I’ll try.

Here is my picture of the Cascades restaurant, where Brandt and I had a very nice lunch (click pictures for higher resolution):

…and what it looks like now, underwater: 

The view from the restaurant, which is completely underwater today:

Gazebo in the Garden Conservatory—popular spot for weddings:

Entrance to the Delta Atrium, by far the largest of the four:

Boatride on the indoor Delta River.  We had so much fun taking the boat tour!

Update:  How about some before-and-after video for a better effect?  The before video is rather long (but like I said, this place is huge!); the interior shots start at 0:40.  The after video shows the 10 feet of water in the Cascades atrium—wild!

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.

  

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.

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.”
 

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.”