I'm published! (TBT)

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

"Homeless Tequila"

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

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

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

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

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

I stammer, laughing, “Wh—What?!” 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I—what?!” Brandt exclaimed.

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

“I thought you said that I STANK!”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

            “Hot dog,” she said.

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

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

            The next word was “baseball.”

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

            “Cowboy,” she said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Car Shopping for the Hearing Impaired

A new town and new job deserves a new Brandtmobile!

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

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

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

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

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

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

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

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

Day 3 of ALDAcon

I’m still whooshing just as bad, but, I’m trying to just deal with it for now.  Luckily my alarm clock is also a sound machine, so playing the “waterfall” sound really loud gives me something else to concentrate on while trying to sleep, and it’s helping a little.  So, back to ALDAcon!

Day 3 started with the workshop “The Power of Nonverbal Communication” by Michael Bower, a Life Enrichment Consultant.  Mrs. Bower does not sign, but gives many presentations to hearing loss groups.  She explained that there are 3 parts to communication:

1. The words we say—only 7% of communication
2. The way we sound doing it—38% of communication
3. The way we look doing it—55% of communication

There are a number of things involved in communication that impact how we are perceived, including loud vs. soft voice, pitch (too high is shrill, too low is aggressive), how fast (‘brash’) or slow (‘simple’), universal sounds (angry voice, ‘pillow talk,’ etc.), touch, how we look while talking (facial expressions, gestures, eye contact, etc.), cultural issues (distance apart, what we wear), and body language.  Mrs. Bower explained that with practice and awareness, people with hearing loss can improve their communication through good non-verbal communication skills.

My second workshop was “Dating and Intimacy with New Partners” by Marisa Musso.  I was a little worried about attending this workshop, since I’m married, but it was the only workshop being offered about relationships.  Ms. Musso started by reminding attendees that “you are not your hearing loss; it is only a part of you, it does not define you.”  She explained that deaf and hard-of-hearing people are looking for the same things in a relationship as Hearing people are, with one addition:  they want a partner who will accept their hearing loss.  This can be difficult because it is common to get tongue-tied, and the fear of disclosure regarding hearing loss can be scary.

Ms. Musso went through a number of questions for participants to think about—questions to have answered before going out on your first date with someone new, so that you’re already prepared.  The first question is, when do you want to disclose your hearing loss?  This is a personal choice and could be prior to the first date; on the first, second, third, etc. date; when the other person notices, etc.  The second question is, how do you want to disclose your hearing loss?  Examples include:  apologetically (probably not the best approach); as a significant part of your identity; as an insignificant part of your identity; with confidence; with humor; or not acknowledging it at all.  The third question is, how would you prefer disclosure to occur?

The theme of the workshop was “Confidence is Sexy!”  Ms. Musso suggests disclosing a hearing loss in a positive manner, such as saying what you have learned from it and the bright side.  She gave us each a sheet of paper to fill out for preparing for a date, which includes writing some details about your hearing loss, tips for communicating with you, humor, how to show you’re proactive, and how to show you’re confident.  It is important to show your dating needs and habits, so anticipate possible barriers that could arise on a date (such as bad lighting or too much background noise), plan solutions for these situations, and be proactive by mentioning common problems before they happen.  For communication, Ms. Musso stressed that bluffing (pretending you heard/understood when you really didn’t) is not allowed when you and your date are sharing personal thoughts and feelings.  Be clear about what you need to be able to hear, and be honest when you don’t hear.

Intimacy barriers that stem from hearing loss include environmental (e.g. lights), attitude (e.g. avoidance), and emotional (e.g. fear and shame).  Ms. Musso reminded us that self-esteem is a very important factor in successful dating, and people with hearing loss often have self-esteem issues related to their hearing status.  She told the audience to keep in mind that many relationships end for the same reasons, whether someone has a hearing loss or not, but people with hearing loss and disabilities often blame themselves or their disability for the end of a relationship.

Websites recommended by the workshop include:

A Greater Date (online dating for Deaf/Hard-of-Hearing)

Dating4Disabled 

Dating Tips and Advice 

And a website about Self-Esteem 

Our keynote speaker at the Awards Luncheon was Patricia Graves, the president of Caption First and a pioneer in captioning since its inception in the ’80s.  She has developed the standards for CART (Communication Access Realtime Translation) captioning, and is certified in “every state and national captioning certificate that exists.”  Ms. Graves is losing her vision due to diabetes, and drew may comparisons of going blind to going deaf, such as bluffing (saying “oh yes, that’s a lovely painting!” when she really can’t see it), and being accused of having “selective seeing” (people with hearing loss are often accused of having “selective hearing”—only hearing when they want to).  She said to her ALDA family, “You have taught me to recognize that limitations are okay, and it is okay to ask for help.”

My final workshop of the convention was Part 3 of “Communication Strategies and Basic Sign Language” by David Litman.  We reviewed family signs, and learned signs about time, weather, and emergencies.  I learned a new sign—HURRICANE.  Mr. Litman reminded us to “think visually!”  I loved seeing the room full of people eager and excited to learn Sign Language, and I am so glad that ALDA encourages its members to embrace ASL.

Our all-night Karaoke Party deserves its own post, so stay tuned!

  

Day 2 of ALDAcon

Friday was a very busy day at ALDAcon.  We started at 7:30 with the Newcomers/Chapter Leader Breakfast, where us newcomers were introduced to the regional chapter leaders and were welcomed again to the ’Con.

My first workshop was “4G Mobile Technologies Creating Accessibility,” given by Mike Ellis and Ken Arcia with Sprint.  It’s too bad Brandt wasn’t there, since he’s such a technology-geek!  I learned that 4G can deliver mobile downloads up to ten times faster than 3G.  One of the great things for Deaf/Hard-of-Hearing people is fast, high-quality, 2-way mobile video, which allows for communication in Sign Language.

Next, I attended “The Battle for Captioned Movies—an ADA Case Study,” given by deaf lawyer John Waldo of the Washington State Communication Access Project (“Wash-CAP”), who also gave the workshop on Advocacy and Access the previous day.  Mr. Waldo explained that when the Americans with Disabilities Act was passed in 1990, Open Captioning print had to be burned onto movie film, making it expensive and cumbersome.  This is why the House ruled that Open Captioning was not required by the ADA, but was “encouraged.”  However, new digital technology has changed how Open Captioning is done.  The text is provided on a separate disk, which synchs to the sound of the movie.  Every movie theater screen has 2 projectors, one that shows the previews and one that shows the movie.  So the captioning is simply shown on the projector used to show previews (I certainly didn’t know that, did you?!).  I also learned that digital Open Captioning is provided to movie theaters free of charge by the Media Access Group at WGBH—the organization that invented television Closed-Captioning, Descriptive Audio, and Rear Window Captioning.  In the case of Rear Window Captioning, the captioning disks are provided to the movie theater free after the theater has paid to have the equipment installed.

Mr. Waldo gave an overview of all the lawsuits filed over the years for captioning in movie theaters, including the recent Arizona case that was the first time a judge had ruled in favor of requiring movie theater captioning (and the judge called the movie theater company “jerks” for not offering the captions voluntarily!).  Since movie theaters can no longer argue that captioning is too expensive, their current argument is that Open Captioning is “too distracting” to Hearing audiences.  This is why captioned movies are always shown at off-peak times and days.  Mr. Waldo explained the “New Jersey pattern,” named after the 2004 case where Regal Entertainment Group in New Jersey was required to have 12 captioned movie showings per week:  2 shows per day, one in the afternoon and one in the evening, except for Friday and Saturday nights.  I am definitely going to ask Mr. Waldo’s advice for getting our local theater to offer OC movies more than one afternoon and one evening a week!

Next was the Appreciation Luncheon with Dr. I. King Jordan as our speaker.  In 1988, Dr. Jordan was named the first Deaf president of Gallaudet University (the only liberal arts university in the world for Deaf and Hard-of-Hearing students), following a student protest called “Deaf President Now.”  Dr. Jordan signs while he speaks, and has a very powerful yet down-to-earth presence.  He spoke about advocacy and how there is a difference between access and compliance with laws, saying “many places comply with the laws, but don’t really provide access,” such as the off-times of Open Captioned movies.  Talking about the lag-time on MSNBC’s Closed-Captioning, Dr. Jordan said,

“My wife won’t watch TV with me anymore because I bitch and moan so much about the captions!”

Despite this, though, he admitted that he has never filed a complaint with the FCC, nor has he written a letter to MSNBC or any other channel that has captioning problems.  He said, “We’ve all experienced the same thing; why don’t we do more?  It really is our responsibility.” 

My third workshop was Part 2 of “Communication Strategies and Basic Sign Language,” given by clinical social worker David Litman (I missed Part 1 the day before for Mr. Waldo’s workshop).  Mr. Litman had us review the alphabet, and then he taught family signs.  I was having another bout with altitude sickness, so I was glad they were all signs I already knew!

The final workshop I attended was “Life After Deaf:  Adjusting and Thriving,” by Sharaine Rawlinson Roberts, the Marketing and Account Manager for Caption First.  Ms. Roberts became deaf overnight at age 14, after volunteering in a hospital in preparation for becoming a pediatrician.  She caught spinal meningitis from a patient and nearly died (doctors told her parents that if she lived, she would be a vegetable).  Her first thought when she came out of her coma was, “No one will marry me now.”  After graduating high school, she attended the National Technical Institute for the Deaf, where she “learned communication skills by socializing.”  She learned Sign Language, because there are “so many variables” for successful lipreading.  Ms. Roberts has a Cochlear Implant and is happily married.  Her “Tips for Survival” after becoming deaf are:

• Ask people to repeat what they said
• Learn fingerspelling
• Check into Assistive Listening Devices 
• Turn on the captions on your TV
• Seek out counseling 
• Do things that bring you joy
• Join ALDA

Speaking to those with Hearing spouses, Ms. Roberts advised,

“It will help your marriages if you try to learn a way to communicate.”

For “pillow talk,” she highly recommends learning some signs.

I skipped the Cocktail/Social Hour for a quick nap before the I. King Jordan Award Banquet.  The winner of the I. King Jordan Award was Dr. Jane Schlau, a late-deafened woman who earned her Doctorate in Education after she lost her hearing.  Her dissertation was about acquired deafness.  In her acceptance speech, she asserted, “Deaf people CAN!”

Bill Graham, the founder of ALDA, spoke about how ALDA was started with a Chicago pizza party in 1987.  Their first convention was held in a hospital in 1989, with 42 attendees.  It was the first time that Real-Time Captioning was used in a group, ever.  Mr. Graham said that without Real-Time Captioning, ALDA never would have become a major organization.  He told a hilarious story, where the new CEO of the National Association of the Deaf, Howard Rosenblum, asked Mr. Graham, “So how can we get some of your people to come to NAD?”  Mr. Graham responded,

“You’ll have to hire someone to do Crappy Sign Language!” 

I was doubled over from laughing so hard, because it’s true!  My sign language is not true ASL, and ASL is not used by the interpreters at ALDAcon.  While most ALDAns at the ’Con signed while they spoke, it was far from perfect signing—because if you’re late-defeaned, you probably didn’t grow up speaking ASL, and who can speak a language flawlessly that they didn’t learn until adulthood?!  I think “Crappy Sign Language,” or “CSL” as we started calling it, is a great tongue-in-cheek description of the popular communication style at ALDAcon.

A lady got up to speak (I forgot your name, I’m sorry!) about ALDA and how it had changed her life.  She said, “All of us are in the same boat, struggling to communicate.”  She ended by saying, “We are your family.”  This is something that I heard many times throughout the ’Con—that ALDA is a family.  I had read this on their website before the ’Con, but it really is something you have to see and experience in person.  It truly is a big family, and the ’Con is their annual family reunion.

Our final activity for this very long day was the entertainment, “Taiko with Toni.”  I didn’t know what to expect, so WOW was I surprised.  It turned out to be traditional Japanese taiko (“drum”) and bamboo flute music, and it was incredible!  First, Lance and Toni explained the different pieces of Japanese clothing that they were wearing, and then they explained the different sounds made by the drum:  don is loud, su is soft, tsu is silence, and ka is hitting the drum on its edge.  Everyone really enjoyed the music, and at the end, someone started a conga line.  I was exhausted, but Linda, the ALDA president, told me I had to join the line.  I cut in right behind Dr. I. King Jordan, and that was a surreal moment.  I thought to myself, “I’m conga dancing to Japanese drums behind the first Deaf president of Gallaudet University—how is this even possible?!” 

I forgot my camera, so here is a picture of Lance and Toni from their website:

First Day of ALDAcon

Technically the first day of ALDAcon was on Wednesday night, but I didn’t arrive at the hotel until 7:00 and the only ‘activity’ was registration.  I picked up my nametag, totebag, and program book, and met up with the two ladies I had been e-mailing, Marilyn and Jane.  We ate dinner, chatted a bit about their Cochlear Implants, and headed off to bed because we’d been traveling all day.  There was a Hospitality Room set up with card games, board games, and puzzles, and there was a group of people having a great time playing and laughing, but I was just too tired.  Thanks to the altitude, I couldn’t really sleep though.

Thursday morning, we started with the Newcomers Workshop.  Cynthia Amerman, the President-Elect who had sent me that awesome welcome e-mail the week before, welcomed the 20 newcomers by name (she was too far away to see our nametags) and had us stand up.  Our first activity was a Bingo game, where we each had a Bingo card with descriptions taken from our Newcomer Form.  We had to go around the room and find whose name fix in each square, such as “uses sign language,” “has a Hearing spouse,” “enjoys gardening,” and “likes to write and knit” (that one is me!).  Next, Cynthia asked people to think of some advantages to being deaf.  A lady said that it’s easier to sleep because of the silence.  A man said that his room is right next to the elevator, but it doesn’t bother him because he can’t hear it.  Then she asked us to raise our hands if these had happened to us:  being embarrassed by bluffing (pretending you heard something and just nodding along), being accused of ignoring someone when you couldn’t hear them, losing friendships/relationships because of hearing loss, being left out of family conversations, and being exhausted from constantly straining to hear and understand.  Cynthia showed the sign for ACCEPTANCE, and said,

“You will find acceptance here, your home.” 

I think most of the room was crying at that point (myself included!).  Then another lady, Judy, got up to talk about communication.  She explained that ALDA “supports whatever communication method works for you,” because “if it works for you, it works for us!”  I just love this approach; it’s so inclusive and open-minded.  Judy explained that “we don’t have to bluff here!” because everyone can find a way to communicate—with signing, lipreading, or writing things down.  There were pads of paper sitting on every table in every room of the ’Con—even on every table in the hotel restaurants!  There were also small whiteboards that people could borrow.  She explained that the Sign Language interpreting done at ALDAcon is more English word order than ASL, and the interpreters mouth all the words to help with lipreading.

After the first workshop, we had some free time before lunch to tour the Exhibit Hall.  On the way in, I struck up a conversation with a Newcomer couple, Bob and Sarah.  Bob has been losing his hearing over the past few decades, and has Phonak BTE hearing aids and an FM system just like Brandt’s.  Sarah is the Hearing Spouse, and I couldn’t believe my luck that I had found a couple so much like Brandt and myself!  The three of us became instant friends, and we spent the rest of the ’Con talking and sitting together.  It was wonderful to be able to talk with Sarah about ‘Shadow Spouse’ issues like going to restaurants, being stared at while wearing the FM system, and having our husbands get upset when they misunderstand and think we’ve just insulted them.  She often had to repeat things for Bob when he missed them, and I knew exactly what that was like.  Bob recently missed being a Cochlear Implant candidate by only 8%, so I could definitely sympathize with that as well.  I was sad that Brandt couldn’t be there to meet them, but they got to hear ALL about him.

Our speaker at the President’s Luncheon was Cheryl Heppner, the executive director of the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons.  Ms. Heppner signs, lipreads, and has a Cochlear Implant and Hearing Dog.  She even wrote a book entitled Seeds of Disquiet:  One Deaf Woman’s Experience.  She is a hardworking advocate, focusing on improved telecommunications and captioning for television and movie theaters.  At the luncheon, she told us that the #1 gripe she hears from Deaf/Hard-of-Hearing people is about captioning.

The afternoon workshop I attended was “Organizing Effective Advocacy—Working Together to Build an Accessible World,” given by John Waldo, a deaf lawyer and founder of the Washington State Communication Access Project (“Wash-CAP”).  Mr. Waldo explained that advocacy done by individuals does not get much accomplished; the other end of the spectrum is filing a class-action lawsuit.  However, he suggested a middle ground—organized advocacy groups, such as his group Wash-CAP.  These kinds of groups are “more effective, comfortable, and strategic.”  When deciding what to advocate for, Mr. Waldo suggests developing a priority list, balancing what is “most valuable” versus what is “most achievable.”  Then, you must “identify who will say ‘yes,’ and who can’t say ‘no.’”  For example, when a movie theater company says it cannot possibly afford to install Rear Window Captioning, pointing out how many millions of dollars in profits they make every year can show them that they really can’t afford to say ‘no’!  If advocacy work is not successful, then you should consider exercising your legal rights.  Mr. Waldo said that word gets around fast, so this option doesn’t have to be used often to be effective, because it “gets the attention of the person who can say ‘yes.’”  His final suggestions for positive advocacy were:

• take and give credit
• publicize
• say “thank you”
• support and enjoy

Next was our guided tour of the Garden of the Gods park.  I was really dizzy and tired from the altitude, but I was determined not to miss the tour.  On the bus, I sat next to ALDA’s current president, Linda Dratell.  I told her about growing up with Aunt Louise, and about Brandt.  She was very interested in my story, and asked if I would be interested in starting an ALDA chapter in our area.  I know it would be a lot of work, but I’m intrigued at the idea!  We visited several areas of the park, and the scenery was breathtaking.  I love mountains, so I had a blast.

After the tour, we went out to dinner.  We had a private room in the restaurant, but there was music playing overhead which made it hard to understand people because it mixed with the noise from all the conversations going on.  Luckily, everyone that I talked to also signed when they spoke, so we were all able to communicate fairly easily.  I never would have been able to understand these conversations relying only on speaking or signing, but with both, communication was fairly easy.  It was amazing!

I took over 100 pictures at Garden of the Gods, but here are 3 of my favorites:

Panoramic with Pike’s Peak in the background

These rock formations are huge

Rockclimbers

Noisy Kitchen

Can a girl get some quiet around here?!

My head and ears have been pounding all week from the thunderstorms that keep rolling through, so I haven’t felt like emptying the dishwasher.  It finally had to be done tonight, as the dirty dishes were stacked up and we didn’t have any clean plates or silverware left in the cabinets.  Brandt was in the kitchen making dinner, so I dragged my aching head in there to work on it.

He was listening to his iPod through earphones instead of his usual iCom, since we still haven’t gotten his repaired hearing aid back (it’s been 3 weeks).  I heard a strange shrieking noise, which at first I thought was coming through his earphones.  He paused the iPod, and watched with confusion as I ran around the kitchen, turning my head from one side to the other, trying to find the source of the noise.  Finally I found it—his hearing aids were sitting on the kitchen table and he hadn’t turned one of them off, so it was shrieking from the feedback.

When I started unloading the dishwasher, carefully and quietly, Brandt ran over to help.  “No, no!  I got it!” I insisted.  “But, I want to help!” he said sweetly.  “I know, and I appreciate it, but I got it!” I insisted harder.  The problem is, Brandt doesn’t realize just how LOUD dishes and silverware can be when they’re getting put away, and with my headache I knew I couldn’t take all that noise.  I like being in control of the dishes so I can gently put them up.

Here is Deaf cartoonist Matt Daigle’s take on the situation:

When we first moved into our house, Brandt used to wake me up just about every morning when he got out his cereal bowl.  Even through my earplugs, I could hear (and feel) the SLAM! of the kitchen cabinets, which share the same wall as the master bedroom.  Finally I’d had enough and moved the bed to other side of the room, and the cabinets don’t bother me anymore.

Back to tonight:  we were about to sit down to eat, when I heard Cupcake meowing loudly.  At first I figured she was just mad that I hadn’t offered her any of our roasted chicken and ignored her.  But she kept getting louder and more insistent, and it seemed odd that she wasn’t actually in the kitchen meowing for chicken.  I asked, “Cupcake?  Where are you?”  She loudly responded.  It sounded like she was in the hallway, so I ran to the back of the house.  No cat.  Now it sounded like she was in the living room, so I ran back.  Still no cat; and now the meows sounded painful.  Brandt again took out his earphones and looked at me with a very confused expression as I ran around the kitchen, meowing back, and yelling, “Where are you?  Where are you?!”  He opened the pantry to get some chips, and out ran a very distraught little cat.  Apparently she had gone snooping while he was making dinner, and he’d accidentally locked her in there. 

After dinner, I plopped down on the couch and prepared for a few minutes of blissful silence.  A big clap of thunder immediately shook the house, and it started pouring down rain.  I give up!
  

“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!
  

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.