#8 Bites the Dust

Just a quick complaint before my trip to Colorado Springs for the ALDAcon.

Tonight Brandt took off his iCom for the night and put it on his dresser; when I walked by it, I noticed the neck loop was bent almost at a right angle.  I picked it up and yelled, “When did your new iCom break?!”  He had no idea it was broken, so we’re not sure how it happened or how long it’s been like that.  It’s broken in the same spot they have all broken, where the loop and the part that connects it to the iCom itself meet.  The loop is no longer attached, so the wires are exposed.

Brandt just got this new iCom a month ago—almost a month to the day.  It is a new model, with medical-grade silicone replacing the old plastic neck loop that kept hardening up.  We assumed that with the new, silicone loop, this wouldn’t happen anymore.  Apparently we were wrong.  I think this is the 8th iCom that has broken, although I lost count a while ago, so it could be more.

And while I’m complaining, even though this new iCom worked perfectly at the audiologist’s office, as soon as we got home it refused to play music or podcasts without skipping and stuttering, and every time Brandt connects it to his iPhone, it plays Frank Sinatra.  Seriously.  Sinatra.

Alright, enough complaining about Brandt’s ever-failing hearing technologies—I have to get my suitcases packed!  I don’t know how good my internet connection will be at the ’Con, after my awful experience in Philadelphia, but I’ll try to update if I can.  It might only be a Facebook update, so be sure to join the group!

  

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! 

  

Shopping Trip Back Home

We’re back from another trip to my hometown (2 hours away) to pick up Brandt’s repaired hearing aid.  He has now had both hearing aids completely rebuilt in less than a year!  His iCom was sent off for repairs (the fifth time) and he was given a loaner.  Then in 6 weeks, Phonak is going to give him their new, updated and upgraded version of the iCom for free—that was the good news.  The bad news was that his Dry and Store hearing aid dryer still hasn’t arrived, 2 months after the clinic ordered it, because there were electronic glitches in the current batch of dryers that have to be repaired.  It’s ALWAYS something!

My mom’s apartment is getting renovated, and she needed help recycling her old computer and picking out a new kitchen light.  That meant a trip to her two least favorite places, Best Buy and Lowe’s, which she calls “big, loud stores for men.” 

Brandt lugged the computer into Best Buy and asked the employee guarding the entrance/exit where the recycling program was.  He pointed us over to Customer Service, and Brandt headed towards it.  He got about 5 feet away when the employee remembered that he needed a sticker for the computer, and yelled at Brandt, which went unheard.  “Sir!  You need a sticker for that computer!” he yelled louder.  No response.  “SIR!” he screamed.  “He can’t hear you!” I said.  I ran over to him, tapped him on the shoulder, and told him he had to go back and get a sticker.  “Why didn’t he tell me that?” Brandt asked.

After unsuccessfully trying to talk my mom into buying a Nintendo Wii and Wii Fit, we headed off to Lowe’s, remembering that we needed a new thermostat for our house in addition to mom’s kitchen light.  There were employees standing at the end of almost every aisle, and each one asked Brandt if he needed help finding anything.  The problem with this was, the store is noisy, with near-constant loudspeakers, paint shakers, lumber cutters, and all the other loud machines whose names and functions I don’t know.  And the tall ceilings and concrete floors certainly don’t help with the acoustics. 

So when Brandt walked by all these helpful employees, he was on a mission to find the thermostats and not paying attention to them.  This means that as he walked through the store, four employees in a row asked if he needed help, and he only responded to one.  The last one looked rather insulted.  My mom and I were walking a few feet behind Brandt pushing the cart, and when the accidental snub happened, the Lowe’s guy looked at me expectantly.  I pointed to my ear, shook my head, and whispered, “He can’t hear you…”  He looked a little embarrassed and nodded, then asked if we needed help finding anything.  By then, two more employees had been ‘ignored’ and I hurried to catch up.

We got to Aisle 15 and there were no thermostats to be found.  “They’re supposed to be on Aisle 15, why aren’t they here?” Brandt asked.  “Are you sure they’re on Aisle 15?” I said.  “That’s what the guy told me back there!”  “Are you sure he said 15?” I asked.  Mom and I had been talking and hadn’t heard him ask anyone.  “I am positive,” he insisted.  Almost immediately, another employee showed up to help, and told us the thermostats were on Aisle 16.  I know it’s possible that the employee told him the wrong aisle, but I have a feeling the problem was with his ears.

Brandt went through the checkout line first, and said he would go get the car cooled off.  As he walked through the exit, he set off the electronic security alarm.  It flashed and beeped, but he had already walked through it and didn’t see or hear it.  Mom was still paying for her light, and we were at least 30 feet away from the exit.  I watched, waiting for someone to politely tap him on the shoulder.  Instead, the employee standing at the self-checkout in front of the exit starting yelling at Brandt to stop, and when he didn’t, the guy called over two other employees.  “Who was it?!” one of them asked.  Several people pointed towards Brandt, and one lady yelled, “The man in the blue shirt!  He just kept walking!”  The three employees all took turns yelling “Sir!  Stop!  You in the blue shirt!  STOP!” 

I was already on my way towards the door, and starting yelling, “Hold on, he’s deaf, I’ll get him!”  They ignored me and kept screaming at him.  “He’s DEAF!  I’ll get him!  He can’t hear you!” I yelled again.  As I walked through the exit, two of the employees started to go after Brandt.  I started running, yelled “HE CAN’T HEAR YOU, I WILL GET HIM!”, and grabbed Brandt by the arm.  He swirled around and asked “What’s wrong?!”, confused at why two employees were running towards him in a panic.  I told him he’d set off the alarm and had to go back inside.  “But, I paid for it,” he said.  “I know, but the alarm got triggered.  Just let them look at the receipt.”  The employees apologized and let him go without any trouble, but there were a dozen pairs of eyes staring widely at us as we walked out of the store.  I really wanted to snap at them, but I stayed silent.

As we walked to the car, my mom whispered to me, “What if that happened with the police?”  I whispered back, “I’m worried about that.  I’ve heard of several cases where Deaf people were tasered and beaten by cops who thought they were resisting arrest.”

It’s times like these that I wish Brandt already had Cochlear Implants...

   

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!
  

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.

  

Love Is...

Brandt and I just got back from a really neat Scottish wedding.  Unfortunately (but not surprisingly), Brandt couldn’t fully appreciate it.  It was an outdoor wedding, and I knew he was going to have a lot of trouble hearing the ceremony.  I tried to get him to sit close to the front, on an aisle seat, so he could possibly hear better, but he didn’t want to take the good seats away from family members (he’s too nice sometimes!)  There was a glimmer of hope when the pastor started out using a microphone, but he quickly discarded it because it was getting in his way and he declared, “I’m loud enough without it!”  No, he wasn’t; not enough.  Brandt missed all the funny moments, looking around confused when everyone in the audience burst into laughter.  I felt so bad for him…

The bride and groom had a handfasting (traditional Scottish practice of tying ribbon or cloth around the couple’s hands), which I have seen on Offbeat Bride but hadn’t seen in person before.  At the end of the ceremony, a man dressed in full Scottish garb surprised us all by playing a bagpipe. 

At the reception, while the bridal party was still taking pictures, we got to play with colored pencils.  Everyone got a sheet of paper with a bunch questions to fill out.  There were basic questions like “How far away did you travel from?,” “How did you meet the bride or groom?,” and “What is your favorite memory of the bride and groom as a couple?”  Brandt and I had fun answering “How many children do you think we will have?” (we said “19”) and “What will their names be?” (we listed 19 types of herbs—Basil, Rosemary, Cinnamon, Peppermint, etc).  For “What is one piece of advice for the newlyweds?,” I said “separate bathrooms!!” and Brandt said “always play Nintendo Wii in cooperative mode only!” 

We had trouble thinking of a funny answer for “Complete the phrase: ‘Love is…’”  All I could come up with was, “Love is SUPER-COOL!”  Brandt has been mis-hearing me a lot lately (more than usual—one of his hearing aids isn’t working right and has to get looked at next week), and today was particularly bad.  So he wrote down,

“Love is… like superglue.”

Then he looked off in the distance, thinking hard about how to explain it, and continued writing.

“It sticks you both together pretty strongly, with an almost unbreakable bond.”

He was very proud of himself, and I was quite impressed that he came up with something so profound based off a misunderstanding.  He told me, “Great suggestion!  That worked out well!”  

  

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.