Still in the Gray Area

I know, I know, it’s been...er...awhile since I’ve posted.  I got a job last fall that completely took over my life, and then our beloved Hearing Cat had a long illness and eventual passing this summer that zapped me of any desire to write about still being stuck in the Gray Area.

But, I’m back now!  You’ve already been warned that I don’t have any great news to report; however, Brandt is somewhat closer to candidacy than last year.  I think.  Maybe.  Actually, we’re not really sure.  It’s pretty darn confusing, but I’ll try to explain it as best I can.

In May, Brandt had his annual appointment with his audiologist, Dr. Awesome.  His hearing and comprehension hadn’t changed, but Dr. Awesome told him, “I think it’s time to send you for a Cochlear Implant evaluation.”  We both said simultaneously, “He got one!  Last summer!  Like you said!  And it was a DISASTER!!”  He looked confused, flipped through Brandt’s chart, and said, “No you didn’t.  If you’d had the evaluation, I would have known about it.  There is no record that you had one done.”

I was so upset, I was shaking.  I screamed at that poor brilliant doctor, fighting back tears, telling the story of how we had been treated last summer.  He was shocked, and recommended that we go back for another evaluation (I grumbled loudly) but this time with his “Original CI Team” (I got a little hopeful at this).

It turned out that half of the “Original Team” no longer does CI evaluations, so instead we were assigned Aunt Louise’s audiologist, Courtney, and a speech-pathologist we’d heard rave reviews about, Anne. 

With the new appointment set for the last Friday in July (just like last year), I refused to get my hopes up.  I didn’t even want to go.  I told Brandt it was a waste of time and gasoline.  I e-mailed my concerns to Courtney, and she told me that they had recently started doing more tests in the evaluation.  I decided to go after all, but still wasn’t expecting anything.

Courtney and Anne began by warning us that they would be doing “a lot of tests today!” (and never tried to push us out the door!).  Brandt’s hearing loss had gone down a little, surprisingly—from a 60 decibel loss in the right ear and 63 decibel loss in the left, to 68 dB in the right and 70 dB in the left.  He misheard some of the words he knew well, like “Fabio” for hot dog, “fine line” for sidewalk, and, my personal favorite, “road kill” for rain coat.

They ran the same Hearing In Noise In Quiet sentences that Brandt did so amazingly well on last year.  He still did much better than he does in the ‘real world,’ but I knew he was doing worse than last year.  Then they did a new type of sentence test, called AZ Bios.  Instead of them all being well-annunciated and read by the same man, these sentences are done by different people, both male and female, with different levels of annunciation.  There were a few that I couldn’t understand at all.  Brandt performed much more like he does in the real world:  sometimes he got every word, sometimes he didn’t get any of them, and most of the time, he got about half.  For luxury, he heard “lecture in Asia.”  You smell like fresh lemons was “Do you smell that first letter?”  When a husband got some fresh flowers, he heard “safari.”  A dog growling at the neighbors was “growling at bananas??” And when the children cleaned their plates, Brandt asked in shock, “They torched the place?!”

Next, they gave Brandt a long list of single words, a test called CNC.  In this test, each phoneme (speech sound) is given one point, and each word has three phonemes.  So when he shook his head and wouldn’t wager a guess, Courtney told Brandt that he really needed to guess because he could get at least one or two points, even if he got the entire word wrong.  For example, the word was long and he said “blob.”  He got one out of three points for that word, since he got the vowel sound correct.  For keen he said “key,” so that was worth two out of three points because he only missed the /n/ sound.  A lot of the time though, he didn’t get any of the sounds.  Keg was “candle,” when was “fire,” lap was “mauve,” and, inexplicably, can was “Pentium.”  He knew it was wrong, but swore that’s what he heard.

After more than two hours of testing, Courtney and Anne took a “scoring break.”  That was a very long 20 minutes.  As much as I tried to fight it, my hopes started soaring.  I knew Brandt had done much worse than last year, but I didn’t know exactly how badly he’d done.  I knew he couldn’t have scored higher than a 50% on those harder sentences, but I couldn’t keep track of all the phonemes.

The ladies came back in, and broke the bad news.  “You’re still functioning a little high for a CI.”  Ouch.  His HINT-Quiet test scores had indeed gone down:  from 86% and 79% last year, to 77% and 60% this year (they ran two sets).  The cutoff for candidacy is 50% in the implanted ear, and 60% in the ‘better’ ear.  They only did they tests with him using both ears together though, so I’m still not sure how accurate it is to say he’s “functioning too high.”

I asked about the scores in the new tests.  He scored 36% on the single-word (phoneme) test, and 39% and 51% on the AZ Bios sentences.  I asked, “Well, what’s the cutoff for candidacy?!”  It’s 40% or less for the single words, and 50% in the implanted ear for AZ Bios.  I was confused.  “Umm, so he IS a candidate then, right?!  He scored below candidacy threshold on both, and that was with BOTH ears!”  They explained that that’s not necessarily the case.  They don’t rely on a single test to determine candidacy.  I didn’t care; he’d scored below the cutoff, he should be a candidate.  I was desperate, and livid.

Courtney and Anne spent another hour talking to us, and I tried (and failed) to stay calm.  They said that he probably “has more to lose than gain” and tried to explain why it was such a huge risk for him to get implanted.  There are “a lot of unknowns” with his case, and since he still “has SO MUCH hearing left,” they weren’t comfortable with the idea of implanting him and wiping out all the residual hearing in one ear.  Ok, I can understand that part.  However, I couldn’t help but keep thinking, “BUT, Louise!  You knew Aunt Louise!  She thrived with her CIs!  They changed her life!!  You have to give us that same chance!!”  I chose to remain silent instead of screaming, but it was tough.

Brandt asked if they had ever implanted someone with as much hearing as he had, and they told him about a woman who had been implanted about a year ago.  She had his same level of hearing, but she was so frustrated with her low comprehension that she told Courtney, ‘If I lose all the hearing in that ear and I can never use a CI, I won’t have lost anything.’  She told Brandt, then, that he would have to be willing to take that same chance.  He would have to be able to say to her, “Wipe out all my hearing in one ear, and if I can never hear out of it again, I’ll be fine with that.”

Obviously, that’s a huge risk.  And not one that Brandt feels that he can take.  He’s been worried about how he would function at work with only one ear for the several weeks of post-operative healing he’d have to have after getting implanted.  So...willing to never be able to use that ear again?  Yikes.

“Natural, acoustic hearing sounds much better than with a CI.  It’s like the difference between playing a piano with all 88 keys, or reducing those sounds to only 22 keys.”  I sarcastically commented, mostly to myself, “Well that wouldn’t matter to him, because he already hates all music!”

In the end, Courtney and Anne recommended a six-month “extended evaluation process.”  This will include:  resetting his hearing aids, trying out two or three different hearing aid brands, medical testing to rule out other conditions that might be causing the low comprehension, and aural rehabilitation/listening therapy (we’re still not quite sure what this is).

We left the evaluation...confused.  When we’re asked “how did it go??” my answer is this:  

It wasn’t a definite No, but it definitely wasn’t a Yes.

The evaluation was two months ago, and we haven’t done anything else about it.  Brandt wants to try Widex hearing aids at the very least, since that was his old brand and Anne told us that patients often have a lot of trouble transitioning from Widex to Phonak hearing aids (why didn’t we know this before??).  He’s also interested in trying out aural rehab and/or listening therapy, as soon as we can find out what all that entails and where to go for it.  Having the time for all of this, especially the frequent road trips for having new hearing aids readjusted over and over, is going to be difficult. 

So we’re still in the Gray Area, still with a giant question mark hanging over Brandt’s earless ears.

Nice Car!

On Friday night, Brandt and I went for a nice long walk (hasn’t the weather been wonderful?!) and then went to one of our favorite restaurants.  For whatever reason, the seating hostess always tries to seat us in the room with the sports bar.  It’s loud enough in the regular dining area, so adding the noise of 2 big-screen televisions and screaming football fans is just impossible.  The hostess always thinks it’s strange when I ask her to sit away from the bar.

About halfway through our dinner, she came up to our table and asked Brandt, “Do you own the black BMW?”  He nodded, and I knew that he thought she was asking if his meal was good.  Before I could jump in, she said “You do?  Wow!  Nice car!  Well your headlights are on…”  He smiled and nodded again.  I opened my mouth to tell him what was going on, when she again told him his headlights were on and he needed to turn them off.  I shook my head and said, “No, we don’t own a BMW, sorry…”  She looked at Brandt, confused.  “But, he said you did.”  I shook my head again.  “He didn’t hear you right.”

I turned to Brandt and explained what had happened.  “Oh, I thought you were asking if my food was ok.  It’s good!” he said.  Then I had to re-explain to the hostess that no, we don’t own the BMW and it was all a misunderstanding.

As we were leaving the restaurant, Brandt asked me, “Did you see the couple next to us?”  The older couple?”  I nodded.  “They were celebrating their anniversary!” he said.  Puzzled, I said, “I heard them order some sort of wine, but how’d you know it was their anniversary?  Did they have cards or something?”  Very proudly, he said, “Nope, I read their lips!  The man toasted ‘To another 23 wonderful years.  Happy Anniversary.’”  I was amazed!  “You can read lips that well?!  And you were eavesdropping on their conversation?!”  He smirked.  “Yep.  It keeps me somewhat connected to my surroundings!”

  

Lovely Sandwich

I think my hearing is getting worse…

Over the weekend, our friends Cassie and Basil came to visit, and I had a really hard time understanding either of them unless I was looking right at them.  Riding in the backseat of their car, I strained and struggled to make sense of their words, and walking around at the zoo was equally difficult because I was walking several steps behind them (I was really tired!).  I’ve known Cassie for 15 years, and I don’t remember ever having trouble understanding her in person.  I’ve had some difficulty on the phone with her for the past few years, but I assumed that was (mostly) due to us talking on cell phones.

I don’t have a problem with hearing sounds, I don’t think.  I can still hear all the little pops and creaks of our house late at night, and the random annoying neighborhood sounds.  But my speech comprehension is not doing so well.

Last night after dinner, Brandt was getting dessert, about 8 feet from the kitchen table where I was sitting.  I asked him what he’d had for lunch, and I swear I clearly heard him say, “A lovely grilled chicken sandwich.”  I laughed and said, “A lovely chicken sandwich?  And what made it so lovely?”  He looked confused and said, “Well, it was grilled, and it had lettuce...you know, nice and healthy.”  Apparently he had said “HEALTHY grilled chicken sandwich,” not “lovely.”  {sigh}

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.

ALDAcon Karaoke

The Karaoke party on Saturday night of ALDAcon was scheduled from 8:00 to midnight, but we were having so much fun, it actually ran over!  I honestly had no idea what to expect from this party.  I hadn’t done karaoke in almost a decade, and I admittedly have no rhythm (although I do like to dance, I’m just awful at it!).

Here is the first e-mail I received about the ALDAcon Karaoke, a few weeks before the ’Con:

“Since 1992, ALDA has hosted its Karaoke Party at our annual ALDAcon through the generous support of the Verizon Foundation. Karaoke has become a cherished and fun source of support by reconnecting us to a huge missing part of our social environment—music. While we may not be able to hear or understand music as we remember it, by feeling vibrations, reading familiar lyrics on a screen and dancing with our ALDA family, it recreates those wonderful moments we've missed since losing our hearing.” 

And from the flyer for it:

“Your friends can all hear.  Your family can too!  They laugh and cut up, but you have no clue what's goin’ on.  You wanna sing your heart out and dance yourself crazy, but you are afraid of being off key and you can't hear the rhythm of the song.  Why hold back?? That’s not YOU!!!”   

These really helped me to understand the purpose of karaoke at a conference for deafened people (you have to admit, it sounds strange at first).  It was amazing to watch this group of deaf people singing, signing, and dancing along to all eras and genres of music.  Everyone was having a blast, myself included.  Yes, the singing was mostly off-key; but, mine was too!  I got up to dance to “Walk Like an Egyptian,” “YMCA,” “Stayin’ Alive,” and “Macarena.”  It was a surreal experience, to say the least.

My favorite thing about the karaoke was the balloons.  To “re-discover” music, you can blow up a balloon and hold it on your lap while loud music is playing—it’s incredible!  I’m not sure who first discovered this, but ALDAcon Karaoke prides itself on making the music accessible to everyone, with both the lyrics on the screen, and the balloons that allow deaf people to feel the beat.

I was worried about the loudness of the music, since my mild hearing loss was probably at least aggravated by listening to music too loud over the years.  Luckily, there are special earplugs made for musicians that allow you to still hear all the frequencies of music, but lowers the decibel level just enough that it doesn’t damage your hearing.  I ordered the smaller size of musician earplugs, thinking that the adult size might hurt my ears.  They fit perfectly, and did exactly what they were supposed to!  I could still talk to people, and hear the music just fine; it just wasn’t loud or hurting my ears.  I actually started to wonder if the music was loud at all, until a Hearing lady at my table complained of splitting headache caused by the music. 

For the final song, “Wind Beneath My Wings,” we all stood around in a big circle singing.  Bob and Sarah were to my right and ended up standing right in front of one of the speakers, and I was just to the left of it with my leg pressed against it.  I could feel it shaking, hard, but the sound didn’t bother my ears at all.  After the song ended, Sarah yelled, “WOW, that speaker was LOUD!  I am in PAIN!  My ears are going to be ringing for a while!”  I felt guilty because with my earplugs, I was able to enjoy the music without any of the pain!

And now for some pictures.  Here’s a shot from “Hotel California”; Ken in the middle is signing while he sings.  They had a lot of cute props for people to wear on the stage:

This picture is from “Boot Scootin’ Boogie.”  I didn’t participate because I don’t know this dance, but I did sing along:

“Love Hurts”

I’ve had a migraine this week (along with the constant whooshing) that is finally getting better, so tonight we went out to our favorite sushi restaurant to celebrate.  We didn’t want to sit at the hibachi tables, but there weren’t any regular seats available either.  So we ended up sitting at the sushi bar, watching the sushi chefs assemble all those delicious rolls (some of which were made with a large blowtorch!).

It was hard to hear, because there were two couples next to us who were really enjoying their beers, causing them to shout and laugh quite loudly.  There was also music playing overhead, of course, so Brandt was having trouble hearing, of course.  I was sitting right next to him, which helped some.

I try not to sing along with music, because it really bugs Brandt, but sometimes I forget.  “Love Hurts” started playing, and I couldn’t help but sing along for a minute.  Brandt looked around, confused, and asked, “What are you saying?  What’d I miss?”  I laughed and said, “Sorry, I was singing ‘Love Hurts.’”  He nodded, still confused. 

I started singing again with the last line, “Oooooooooh ooooooh, looooove huuuuurrrrttsssss!”  Brandt again looked confused, and asked, “What are you singing now?”  I chuckled; “Sorry, it’s still ‘Love Hurts.’”  This time I signed “LOVE HURTS” as I spoke.  He nodded again.  “Well, that’s better than the last song, I guess…”  I smirked; “What was the last song?”

“‘Loafers,’ you said.  Strange topic for a song.”

Ah yes, the classic 1975 hit “Loafers” by Nazareth.

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!