Cochlear Implant Evaluation, PART 1

On Friday, Brandt had his much-anticipated Cochlear Implant evaluation; or at least, “Part 1.”  We drove the 2 hours in, and first stopped at Dr. Awesome’s clinic to pick up the new new iCom.  Phonak gave him a brand-new one, with new medical-grade silicone neckloop and updated software, even though they had completely rebuilt his old one a few weeks ago.  Brandt tested it with his iPhone (listening to an NPR podcast and music), the FM system, and talking on the telephone.  It worked fine, so we were off to get the CI evaluation in another part of the hospital campus (it’s a completely different office—don’t ask why, it’s way too confusing).

The office is geared towards children, so the waiting room was full of toys, kids’ books, and Hannah Montana playing (closed-captioned!) on the big-screen televisions.  There were 4 toddlers waiting with their parents; Brandt was the only adult patient.  We were summoned by Tiffany, an audiologist, and Marsha, a speech-language pathologist, and sat down at a small round table. 

Tiffany explained that the Cochlear Implant evaluation would probably take two or three visits, and “we might only have time to talk today.”  Brandt and I glanced at each other.  We want to get to the good news in as few trips as possible.  Tiffany asked Brandt a number of questions:

• Tell me about your hearing loss.
• Tell me about your current hearing aids and FM system.
• You have some very high-tech technology; do you use your FM system in the classroom while teaching? (No.)
• Is there anything else about your hearing loss that I need to know? (I mentioned his ever-worsening tinnitus.)
• Do you have a family history of hearing loss? (Yep.)
• Tell me what you already know about Cochlear Implants (I started laughing at this one; it would have taken a good 2 hours to fully answer!)
• Do you have any burning questions about Cochlear Implants, the surgery, etc.? (We had a 2-page list of questions, most of them assuming that he was getting implanted; so we decided to hold off on most of them.)

Tiffany then told us that adults are not given a choice of Cochlear Implant company and must receive an Advanced Bionics implant, and wanted to make sure that was ok.  I said, “Well then it’s a good thing we’ve already decided on AB!”  She explained that after the surgery, Brandt won’t be allowed to use a hearing aid in his non-implanted ear for a month, so that his brain is forced to learn how to hear with the CI.  Marsha explained that “the best person to learn to use a Cochlear Implant has had normal hearing,” and predicted that Brandt would have a “very fast learning curve” and “adapt quickly” to the CI because he had had “normal brain development” in regards to hearing and learning language.

Tiffany pointed out that Brandt has more residual hearing “than normal,” but they have implanted people with even more hearing than he has.  She asked about his work schedule, and he explained that he would have to be implanted at the beginning of the summer term and would set up his schedule so that he wouldn’t have to teach any classes.  Tiffany and Marsha both seemed very happy with this answer. 

Then Tiffany asked if Brandt would like to do a few hearing tests, or if he was ready to leave (we’d been talking for about half an hour).  He said, “Let’s do as much as we can today!”  They let me sit in the sound booth with him; there were lots of blocks, Legos, plastic fruit, stuffed animals, and stickers strewn around the booth.  First Tiffany did a tympanogram, which tests the middle ear and flexibility of the eardrum.  Then she did pure tone audiometric tests; these are the tests that are done when you get a ‘basic’ hearing test.  First the test is done through “air,” where Brandt wore earphones and raised his hand when he heard beeps at different pitches.  Then the test is done with a bone conduction oscillator (pictured above left) placed behind the ear.  Brandt’s speech discrimination was tested, where he repeats back a list of two-syllable words (they used the same 4 words over and over, which made it pretty predictable).  He scored a 35%, which is 11 points better than he has scored on the last 2 tests he’s had done since last spring.  I’m convinced this was because she consistently used the same 4 words.

After the ‘basic’ hearing test, we sat back down at the round table and Tiffany said, “Well, it’s 2:15, you’ve been here an hour.  I’m sure you’re ready to get back home now.”  We both furrowed our eyebrows and said, in unison, “Um, no, we want to keep going.”  She acted surprised and said, “Oh…ok…well, then let me take your hearing aids for a minute, I want to check them” and left the room.

Marsha sat down next to me with a stack of papers in her hand, and started asking me about insurance and finances.  Had we contacted the insurance company?  Did we know if they would pay for the CI surgery?  I was pretty confused, because we thought they were supposed to find out about all that.  Poor Brandt was sitting there, Earless, without a clue as to what we were talking about.  Marsha asked him, “Did you get all that?”  He said, of course, 

“I have no idea what you’re saying.  She took my hearing aids, I can’t hear you at all.” 

Marsha answered, “Oh, well that’s good to know!”  So she just talked to me, and had me write everything down so I could explain it to Brandt later.  Legally speaking, this really isn’t allowed.  I’m not Brandt’s legal guardian or parent, I don’t make his financial decisions for him.  (I don’t even have health insurance!)  Marsha talked to me for a full half hour, saying that she’s not a financial advisor and really didn’t understand all this, because it’s so confusing.  Their office submits the bills for some things, while Dr. Awesome’s office bills for others.  She gave me the e-mail address of the hospital’s financial advisor, and had me promise to e-mail him as soon as we got home.  Brandt continued to stare blankly at us, getting a little madder with each passing minute.  I tried to stay calm, thinking it must be a really good sign that he would be approved, since Marsha was talking like he was definitely getting the implant (saying “when” instead of “if,” etc.).

Tiffany finally came back and gave poor Brandt his Ears back.  She said, “Ok, it’s 15 ’til 3:00, you must be ready to start heading home.”  Again, we said, “NO, we want to keep going.”  She asked if he wanted to start on the aided hearing tests—meaning, testing done with his hearing aids on.  He hadn’t had this done before, so I was anxious to see the results.  There was a certain spot that he had to sit in the booth, a few feet away from a speaker.  First they played static at different frequencies and volumes, and Brandt raised his hand when he heard them.  It was hard for me to not react to them, but luckily he kept his eyes closed.  Then they played a tape of a man reciting sentences, and Brandt was to repeat back as much as he could understand, getting “one point” for each correct word.  I was shocked at how well he did.  There were several times that I thought, “Oh he won’t get one word of that sentence” and then he got the entire thing 100% correct.  He would shake his head, grimace, and tentatively repeat back each word slowly, ending with, “But that can’t be right.”  But it was right.  I was staring at him like, “Who is this person and what have you done with my deaf husband?!”

When the test was over, Brandt looked at me sheepishly and said, “Tell me later just how bad I did.”  Distraught, I said, “You didn’t do nearly bad ENOUGH!”  Tiffany opened the door to the booth and said, “Ok, let’s go back to my office and chat.”  “Chat”?!  I knew this wasn’t going to go the way I’d been hoping.  Brandt asked her, “So are you going to do the Hearing In Noise Test next?”  She said, “That was the Hearing in Noise Test.”  “No,” I said, “the test with the background noise.  The HINT test.”  “But that was the HINT test,” she said.  I shook my head emphatically.  She answered, “It’s the Hearing In Noise In Quiet Test.”  Brandt and I looked at each other, both quite confused.

We all sat down at the table and Tiffany said, “Ok, you did a little too well on that test…WAY too well, actually.”  My heart sank and my lower lip started trembling.  I could feel the tears pooling in my eyes.  She said, “You needed to score 60% or worse in ‘the best-aided condition,’ which is what we just did.  You scored 90%.  I even dropped the volume lower there at the end, and you still scored an 85%.  So, you are not a Cochlear Implant candidate.  Not even close.”

The room started spinning.  Brandt again asked Tiffany about the Hearing In Noise Test, and she again said that was the HINT test, done in quiet.  We were both still very confused.  She and Tracy both tried to ‘explain’ that “listening with a Cochlear Implant doesn’t guarantee better understanding in noise, only in quiet,” and that his hearing test showed that he was “still outside the range for a CI.”  Tiffany added, “You’re getting pretty good aided benefit,” and I snorted.  I don’t know how he did that well in the booth, but even sitting at the kitchen table, with no background noises, he never functions at 90%.  But I was too shocked and upset to argue.  Marsha said that Brandt was making the most mistakes with vowel sounds, which is unusual.  “For most Cochlear Implant candidates, they have trouble with consonants—like they can’t distinguish between ‘s’ and ‘sh,’ or ‘m’ and ‘n.’  But that’s not your problem.” 

Tiffany hypothesized that his “vowel confusion” was caused by a lack of “low-pitch information” given by his hearing aids, and said that when she ran them through a computer program, it said they weren’t programmed correctly.  She offered to take them and “program them correctly” on her computer.  I shook my head.  It’s taken a full year to get those hearing aids programmed as good as they were, and I didn’t care what her computer said.  It was almost 4:00 on Friday afternoon, and she wanted to start changing the settings on his hearing aids, even though we were far away from Dr. Awesome’s clinic where his preferred settings were stored.  No.  No way.  Get us out of here.  Brandt politely declined, and Tiffany and Marsha started talking about how he could use his FM system in more ways and in different situations.  Tiffany showed him how to place the FM system in the middle of the table and “you can hear everyone sitting around it!”  I scoffed.  “It doesn’t work like that,” I whispered.  Brandt spent a few minutes explaining how the FM system doesn’t really work as well for him as the brochure implies, and she didn’t really have an answer for him.

They asked if we had any more questions, and I shook my head again, just wanting to get out of there as quickly as possible.  Tiffany added, “We could always test your ears individually, and Marsha could do some language tests with you, but I’m positive the results would be comparable.”  We decided to leave.

It took a while before I could even talk, much less process what had gone on.  If his CI candidacy all came down to that one ironically-named test (Hearing In Noise In Quiet?!), why hadn’t they done that first?  Or at least sooner?  And they hadn’t even wanted to do it that day, they wanted us to come back—to take off a day of work and drive another 4+ hours round-trip, only to find out that he wasn’t a candidate.  I was fuming.  Brandt was confused and “surprised.”  On the drive home yesterday, we discussed our plan for moving ahead. 

Since it was apparent from meeting Tiffany and Marsha that they’re used to working with children, we will request an evaluation with members of the team who work more with adults.  Brandt will ask to have the testing done on his ears individually, and have the language testing done with a speech-language pathologist.  We will discuss with these team members how Dr. Awesome had implied that Brandt’s candidacy wouldn’t hinge on the result of one single test, but would take into account a number of factors and would be decided by the CI Team as a team.  We will make sure they understand that we want all of this to take place at the same visit, even if it’s 3:00 on a Friday afternoon and they’d rather go home early.  And we will contact Dr. Awesome directly and get his opinion.

So, it’s not over yet…

   

Dry & Store & Fiona Apple

Brandt found out on Thursday that his iCom was back from its repairs (I think this is the 5th or 6th repair, but I've honestly lost count), so he had to rush back to the audiology clinic yesterday.  And after waiting over 2 months for the Dry & Store hearing aid dryer, it has finally come in as well (it’s cheaper and readily available on Amazon.com, but his health insurance will only help pay for it if it’s purchased through a doctor’s office).  It was supposed to come in a few weeks ago, but there was some “electrical glitch” in the batch sent out by the company, and they all had to be returned.

He tried out his iPhone and FM system with the new iCom (which was completely rebuilt, again—this time with a stronger neck-loop and updated software) and they worked fine, but music was a different story.  Now, Brandt doesn’t actually like music, but it’s a great way to test his hearing technology because it uses Stereo sound, whereas the other devices use Mono.  His iPhone randomly selected “Across the Universe” from the Pleasantville soundtrack, and his description of what the song sounded like was:

“Finona Apple singing underwater, holding a record player, driving down my parents’ gravel road.”  

I responded, “Wow, that is really specific.”  “It skips,” he explained, “and the sound quality is all messed up.”  The audiologist couldn’t fix it, and Phonak told her that ‘iPhones are the one type of cell phone that don’t handle Stereo sound correctly’ (or something to that effect).  There’s ALWAYS a catch with this technology! 

The reason Brandt got the Dry & Store is because both of his hearing aids have had to be sent back to Phonak and completely replaced in the last few months—and he just got them last July.  His audiologist guessed that maybe they were getting too much moisture in them, and it was shorting out the electrical circuits.  She gave Brandt a ‘passive’ hearing aid dryer last fall, which is simply a little plastic container with a desiccant (drying substance) inside it.  He stored his hearing aids in the container at night, and the desiccant was supposed to dry out the moisture inside the hearing aids.  Then when the white desiccant turned blue, it meant that it was full of moisture and he popped it in the microwave for a few seconds to ‘recharge’ it.  It was easy—and better yet, FREE—but unfortunately it didn’t do enough good.

Brandt’s audiologist follows the “no-pressure salesman” model, which we generally appreciate.  She made sure from the start that Brandt didn’t feel pressured into buying a particular (more expensive) model of hearing aid or other hearing assistive devices, and stressed that she doesn’t make a profit off anything he orders through the clinic.  When our state Vocational Rehabilitation Office offered to pay for Brandt’s FM system, iCom, and the mid-grade model of BTE hearing aids, he wanted to upgrade to the high-end model of hearing aids and pay the difference of $2,000.  His audiologist was very against this and tried to talk him out of it, saying repeatedly that none of her patients had ever been able to tell a difference between the two and that he would just be wasting his money.  He was insistent on the upgrade, and finally she compromised by letting him wear the mid-grade model for a month and then let him try the high-end model for two weeks afterwards.  He ended up preferring the high-end model by leaps and bounds and paid the extra $2,000 to keep them, much to the audiologist’s surprise.

But even with this background knowledge that she didn’t like to ‘pressure’ patients into paying for extra things, we still find it strange that she didn’t recommend Brandt get the Dry & Store much earlier (and even when she recommended it, she still phrased it as more of a suggestion, and apologized profusely that he would have to pay $150 for the machine).  When Brandt opened the box and read all the features, he said, “I should have gotten this when I first got the hearing aids!”  It’s a powerful dryer that pulls the moisture out of the hearing aids, and uses a ‘desiccant brick’ to trap the moisture; they last about 2 months each.  It also has a “UV germicidal lamp” that sanitizes the hearing aids.  The other claims on the box are:

• Removes destructive moisture.
• Hearing aids sound better, last longer.
• Dries ear wax that can interfere with hearing aid function.
• Reduces or eliminates itching and irritated ears.
• Hearing aids operate more efficiently so batteries can last longer.

I’m relieved that the Dry & Store arrived when it did, because the humidity around here is so intense, I was getting worried that Brandt’s hearing aids would short out again from all the moisture.  We can’t say with real certainty that it’s working, but when he took the hearing aids out this morning, all the moisture in the tubes was gone.  So that’s a good sign, at least! 

  

Dr. Awesome’s Big News

Brandt had his annual appointment with Dr. Awesome on Monday, and not even a kidney infection could keep me from the 2-hour drive back to my hometown for this!  Last year, at his first appointment with Dr. Awesome, Brandt found out that his hearing—and especially his Speech Discrimination—was deteriorating much faster than he’d realized and would need to get Cochlear Implants (CI) in 5 or 6 years.  He was “in the gray area” of Cochlear Implant candidacy, so Dr. Awesome suggested waiting a few more years before getting evaluated for CI.

Over the past year, I could tell that Brandt’s hearing was getting much worse.  He’s been sleeping through his alarm (he really needs to get a vibrating alarm clock!) and keeps waking up in a panic thinking there’s a plane flying over the house (it’s actually his tinnitus).  So when Dr. Awesome looked over his audiogram from 3 months ago and said, “Well, your hearing hasn’t really declined since last year, that’s good,” I jumped in and explained that it actually has.  He agreed that “hearing on paper isn’t always the same as it is in practice.”

Dr. Awesome thought for a second and said,

“I think I just might send you over for a Cochlear Implant evaluation.  You’re borderline, especially since your hearing loss isn’t all that bad, but your Speech Discrimination is so low, I honestly think you’d do much better with an implant.” 

I started dancing in my chair.  I could barely concentrate as Dr. Awesome told Brandt about the new research on the benefits of “bimodal stimulation”—using a Cochlear Implant in the worse ear and hearing aid in the better ear.  If he passes the evaluation and there aren’t any problems with his CAT scan (and the health insurance approves the surgery!), he could be implanted in 6 to 8 weeks.  Weeks.  The room was spinning.  My lower lip kept trembling and I was holding back tears.

I was almost-crying for 3 reasons.  First, was the excitement and relief at the thought of Brandt hearing better.  To be able to participate in group conversations, understand dialogue in a movie, possibly even listen to music without hating it.  To continue teaching without as much worry about understanding his students.  To rejoin The Hearing World (I have doubts he was ever fully in it before).

Another reason:  my immediate thought was, “I can’t wait to tell Aunt Louise!  She’ll be SO EXCITED!!”  And then I remembered that I can’t tell her.  I always thought she’d be sitting next to me in the waiting room while Brandt is in surgery.  That she’d give me advice when he’s having a “Bad CI Day,” and give him tips on how to adjust to everything sounding different.  It’s hard for me to imagine going through this process without her, especially since we wouldn’t be here at all if it hadn’t been for her constant insisting that Brandt’s life could change for the better if he’d go see Dr. Awesome.

And third, was sheer terror.  The CI surgery itself has some risks, and Brandt has never undergone any kind of surgery before (he doesn’t even have wisdom teeth!).  There’s an 80% chance his tinnitus will be erased, but in a few people, the surgery makes it worse.  And with as many problems as Brandt has had this past year with his new hearing aids, iCom, and FM system (the iCom broke again on Monday in the clinic—his FOURTH iCom in 8 months, and his hearing aid had to be sent off to the company to be repaired AGAIN—it was just sent off 3 months ago), it’s scary to think about what would happen if his Cochlear Implant processor had a bunch of technical glitches. 

The implant surgery wipes out ALL residual hearing, which is why someone’s hearing loss needs to be quite significant in order to be a candidate.  For someone who isn’t completely deaf—and not even severe-to-profoundly deaf yet—it’s a lot to give up.  Brandt’s hearing loss in his left, “worse” ear is only 70 decibels, which is usually at least 10 to 15 decibels less than what he’d need to be a CI candidate.  So going from a 70 dB loss to a COMPLETE loss (over 120 dB)—that’s huge.  He’s going to go deaf anyway, at some point, probably in less than a decade.  But the natural decline is much much slower than a sudden removal of ALL incoming sound.

Although I have been desperately wanting Brandt to get a Cochlear Implant for the past 3 years, by the time we arrived back home, I was having second thoughts.  When I went to sleep, I’d almost completely changed my mind.  I wanted to take it all back.  I wasn’t ready, it was too big a step, too much to think about.  Without Aunt Louise, my mentor and guru of All Things CI, how could I handle this?

Now, three days later, I’m not as freaked out, but still not ready either.  I know that it will have to happen eventually.  It’s an inevitable necessity.  But I’m worried that it’s still much too soon, that my initial enthusiasm was premature.

We know that it will be at least a year before Brandt could logistically get the surgery.  He will graduate with his doctorate next May (we hope!), which would not be possible if he got implanted this year.  He will have to arrange his schedule so that he doesn’t teach next summer—trying to teach several classes this Fall while adjusting to a CI would be impossible as well.  And it could very well take all of the next year to convince his health insurance company to cover it.  The ideal time for surgery would be late May to early June of next year.  So there’s time for us to fully prepare, if he does end up getting approved this year.

But I’m still scared.

  

Hearing Aid Whisperer

I should have been an audiologist.

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

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

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

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

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

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

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

Welcome to My “Nearly Earless” World

My great-aunt, godmother, and namesake, Louise, lost her hearing at the age of 20 from a bad reaction to an antibiotic. Completely deaf for 40 years, she learned to lip-read so well that most people talking to her never realized she was deaf. I grew up watching the Closed Captioning scroll across her television screen, and making sure she was facing me before I spoke. In 2003 she received a Cochlear Implant (“CI”), and the following year became the first adult in our state to receive a bilateral (second) implant. Her journey back to the Hearing World has been incredible to witness.

My grandmother lost a portion of a hearing as a child, from a bout with scarlet fever. She’s the kind of woman who never lets anything get in her way, so her hearing loss was just something she didn’t worry much about. It was a running joke in our family that “Grandma Jean can’t hear you, just speak up!” Several years ago, she underwent a breakthrough procedure from the same surgeon who implanted Louise’s CIs, and her hearing was restored.

10 years ago, I met Josie at our church’s Singles group. She was born with severe hearing loss and wears hearing aids. Although I now live two hours away, I still drive in to see Open Captioned movies with her every month or two.

My husband Brandt and I have been together for 5 years. Given my lifelong experiences with hearing loss, I don’t think it was random coincidence that we met. Brandt began noticing his hearing loss in high school, and was fitted with In-The-Ear digital hearing aids in his early 20s. When I met him several years later, he was fairly adjusted to his hearing aids and loss (although I had to convince him that I didn’t mind watching TV with the Closed Captioning on). His hearing deteriorated further, and after 4 years of bad advice from a quack audiologist, he finally got an appointment with Louise and Grandma Jean’s super-surgeon, “Dr. Awesome,” last Spring.

Thinking that his hearing loss “wasn’t that bad,” Brandt was shocked to learn that he had lost 40 decibels of hearing in 11 years, would probably be deaf within 6 more years, and was “in the gray area” of candidacy for a Cochlear Implant. The next few months were a whirlwind of activity. We joined the Hearing Loss Association of America, attended their national convention in Nashville, and Brandt was fitted with $10,000 worth of Phonak technology: 2 shiny blue Behind-The-Ear hearing aids (BTEs), a Bluetooth transmitter, and an FM system—80% of which was paid for by our state’s Vocational Rehabilitation office.

In the last year, I have kept busy educating myself on any and every issue surrounding hearing loss. I became certified as a Hearing Loss Support Specialist and am learning American Sign Language. Since Brandt is too busy running the Science Department at our local college AND getting his PhD to have time for ASL classes, I go home and teach him the signs that I learn in class. We have met a number of people in our local Deaf community, as well as from Cochlear Implant socials and HLAA.

“Earless” is Brandt’s term for being without his hearing aids. When he got his first set of hearing aids, flesh-colored ITEs, he visualized Mr. Potato Head popping his ears off as he was taking them out. So he announces to me that he “is Earless” when his hearing aids are out, so I know to talk loud (not that I need a reminder for that, though!). In the world of chronic illness, the terms “Ill Spouse” and “Well Spouse” are commonly used. With hearing loss, there is the “Deaf/Hearing-Impaired/Hard-of-Hearing Spouse” (depending on how someone identifies themselves) and the “Hearing Spouse.” Another term for the Well/Hearing Spouse is “Shadow Spouse,” because we are not always visible. Hearing aids, Cochlear Implants, and Sign Language are visual, obvious. The spouse, though, is often in the shadows. We don’t have hearing loss, we don’t wear hearing aids, we don’t directly suffer the social isolation or embarrassing misunderstandings that people with hearing loss go through every day. However, we witness these issues up close and personal, and we suffer vicariously as our loved ones suffer. We’re “Nearly Earless.”