Thursday, July 7, 2016

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.


Monday, June 27, 2016

Swim Lessons--FINALLY!

After 11 years of wanting Brandt to learn how to swim (his mother is scared of water so he was never allowed to learn), it's finally happening thanks to Advanced Bionics! (and our insurance!) After getting his first CI, insurance agreed to cover an Aqua Case and accessories--it's a waterproof case that holds the processor and a small battery, and also requires a special waterproof cable and headpiece. Then with the second processor, since AB was about to release a new model, they let him pick some extra accessories and he was able to get a second Aqua Case! He's just started and he's having a little trouble with floating, but I think by the end of summer he's going to be fairly confident in the water. It's such a relief and I am so thankful for this technology!

Friday, June 19, 2015

CI Activation, Take 2!

There were some nail-biting moments, but the CI has been activated!

Brandt was able to get his magnet to stick to the new implant on Monday night, so we thought there wouldn't be any problem with activation on Wednesday. But even though Beth was able to get it to "lock" fairly easily, the computer couldn't measure impedances of the electrodes, which is the first step in activation. There was a collective "ummmm....." in the room.  When Brandt pushed down on the magnet, it finally connected but if he moved even slightly it was lost.  Beth called Ariel over to bring a strap or something to keep the magnet pushed tight on his head. She brought a t-shirt and ripped it up, tying it around his head like The Karate Kid.  It worked!  Impedances were measured. "Now let's see if we can actually activate..."

Thankfully it worked, and after only a few minutes, Brandt was already understanding speech! Last time, Beth had to type everything she was saying but this time it wasn't necessary.  She explained that patients often progress much faster with the second implant, because the brain already knows how to process the sound--there is "crossover in the pathway" that allows for much quicker and easier understanding. But of course it still takes some effort to teach the other ear how to hear with the new technology.

When we got home, Brandt wanted me to test him with some sentences.  I decided to make up some really weird sentences where he couldn't easily guess troublesome words.  I said "The purple goat quacks at lunchtime," "My cat just gave birth to 17 puppies," and "The waterfall is full of Orange Crush soda."  Shouldn't really be surprising at this point, he got them all right.

Today, 48 hours post-activation, Beth decided to put Brandt in the sound booth and run some tests that are usually NEVER done this early. At 50 dB, he scored 42% on the AZ Bios sentences test.  Apparently this is incredible--there are many patients who don't score that well after several weeks.

Monday, June 8, 2015

CI Activation Postponed

Well, the swelling did subside somewhat, but I was only 50/50 hopeful that activation would be possible today.

Dr. Awesome said that the 'golf ball' lump is a hematoma--a mass of blood and fluid built up under the skin. The only thing that can be done for it is to wait; he said it would take a good MONTH for it to subside and that activation probably wasn't possible today. But he thinks that in another week it should be fine. He still wanted us to go over to the clinic to see if Beth could possibly get him activated.

Beth was able to get the processor to find the implant, but couldn't get the "lock" necessary for activation.  Remember from last time that Brandt has a "thick scalp and skull," and coupled with all the excess swelling, today just wasn't happening. Sigh. She said this was the first time she'd ever had a patient who couldn't be activated on the scheduled date, for anything other than infection.

At least he's maintaining his reputation for being a weird patient!

Monday, June 1, 2015

Going Bilateral: CI SURGERY II

In only 8 months, Brandt has gone from Nearly Earless to Bilateral Cyborg.

Preparation for the second surgery was minimal. No 6-hour drive to Dallas for a second opinion, no long discussions about whether he should go for it or not, and I haven't spent hour upon conflicted hour crying and binge-watching 30 Rock to keep my mind off my fears. We've been here before, it's old news, and instead of being terrified I was surprisingly calm about it. Brandt always seems calm, so it was hard to tell his exact feelings.  The only difference in prep this time was a VNG Balance Test, which is required for all patients getting a second CI.  Brandt spent several hours wearing special goggles that tracked his eye movements as he looked at dots, and had air puffed in his ear to see how he responded. The ear about to be implanted didn't do as well as the already-implanted ear, and his results were near the cutoff of failing, but he passed and Dr. Awesome wasn't concerned.

On the morning of May 28 we checked in to Outpatient Surgery at 9:00 AM. The waiting room was PACKED, which was odd because last time we were the only ones there. We saw Dr. Awesome power-walk back and forth through the waiting room several times, as the hours dragged on.  Brandt was finally called back at 11:00 for surgery prep, and I followed half an hour later. Dr. Awesome talked to us about Brandt's progress being dragged down by the nonimplanted ear. He said that this happens sometimes, it's "an issue with the integration of being bimodal." He explained that it's like trying to see with one contact and one glasses lens, and the brain can't integrate the two.  Then he said "It's time for the left ear then. Let's get this done." I said "Good thing we're already here!" After another 20-plus minutes Brandt was wheeled off to surgery.

Surgery began at 1:12 PM and I expected him to be done by 2:30, since last time he was done in exactly one hour. I gave a little more time in my estimate since Dr. Awesome says it takes "exactly 90 minutes." By 2:45 I was starting to get antsy, and when Dr. Awesome finally came through the door at 3:00 I was getting worried. I couldn't tell if he looked upset or exhausted (Brandt was the fourth surgery of the day instead of the second like last time). He said everything went fine so I breathed a sigh of relief. He said that Brandt should do much better with two CIs, reiterating that "once they adjust to the implant, that natural hearing is just blah."

I knew from the previous surgery that Brandt was going to be pretty out of it when I was called back to get him ready to leave. I thought he seemed more lucid than last time but he mumbled "Why do I feel so much worse this time?" He had a male nurse who I asked for assistance in getting Brandt up and dressed (he couldn't use the "need for privacy" as an excuse like the female nurse had used last time). He was very helpful and Brandt tapped him on the arm to slur "You are a much better nurse than who I had last time." Brandt kept saying that he felt worse than before and was in more pain. I was confused because he actually seemed to be doing better.  We got him loaded in the car and of course it started raining, just as it had last time.  It took almost two hours to get home in the rush hour traffic, a drive that takes 45 minutes at less congested times of the day.

Brandt continued to say that he didn't know why he felt so awful, and took a lot more pain medicine than the first time. The next day he casually mentioned that his calf was sore, and I immediately called the hospital to see if we needed to rush to the emergency room, as this could be a sign of a blood clot. He also e-mailed Dr. Awesome's assistant and she echoed what I was told on the phone, that unless he developed other symptoms we shouldn't worry. Then the day after that, I got another shock when the bandage was removed. It had basically fallen off since it wasn't wrapped onto his head very tightly, and when it came off there was a golf ball sized lump behind his ear.  Googling "swelling after CI surgery" resulted in conflicting advice that swelling is both 'completely normal' and 'cause for alarm.'  I waited until first-thing this morning to e-mail Dr. Awesome's assistant (again) to ask if we needed to come in to the office. She asked me to send her a picture of the swelling--can you believe the Age of Technology we're living in?!--and said that yes it was swollen but there was nothing they could do about it in the office, so just make sure he continued to sleep upright and the swelling should subside.

I honestly don't see how this massive Ball-of-Swelling is going to go down enough in one week for activation to be possible...

Sunday, March 29, 2015

Unexpected Diagnosis

Over spring break, Brandt went back to see Beth for a third time to try to figure out why his CI performance has been going downhill the past few months. She has tested him several times and he's still scoring very high, but in real-world situations he's just not doing as well as he did shortly after activation. At first he thought it was due to congestion, since he'd had a cold that stuffed up his nose. But after the cold went away he still wasn't doing well, and after several weeks of taking decongestant and two different allergy medications, it hadn't improved. My mom and Josie have both asked me "Have you noticed that Brandt isn't doing as well as he was a few months ago? Is it just me or is he getting worse?!"

So at the third appointment trying to figure out the problem, Beth suggested that it might be that Brandt's left (aided) ear is getting worse and is dragging down the progress of the implanted ear--and her recommendation is to go ahead and get it implanted as well. WHAT?!?!

I had actually asked Beth a few months ago about implanting the other ear, since he was doing so well, and she said it was something he could consider if he wanted.  But Brandt wasn't in a hurry to get his other ear operated on, which is very understandable of course.  I was just so excited about his success, I figured having bilateral success would be even better.  He said he'd get it done eventually but didn't see the need anytime soon. Well, the need has unexpectedly arisen.

Due to an upcoming change in his job situation, the surgery needed to be done by early June, but they were scheduling into mid-July. Brandt shrugged and said "Oh well, guess it'll have to wait a year or two after all" but I was NOT going to give up without a fight! I e-mailed Dr. Awesome's assistant, explained the situation, and now he is scheduled for surgery on May 28! I'm just shocked at this turn of events.  We knew another surgery was in our future, but we didn't expect the future to get here so soon.

Friday, October 31, 2014

"Success"!

Remember how I said last week that Beth considers "success" to be a score of 80% or higher on AZ Bios at 50 decibels? Well, we have achieved SUCCESS! At only 3 weeks post-activation!!! Today Brandt scored 83%.  EIGHTY-THREE. I am completely blown away.  Even more impressive, I think, was his CNC scores--64% on total words (versus 38% last week and 8% pre-CI [at 10dB louder]) and 81% on phonemes (versus 65% last week and 31% pre-CI [at 10dB louder]).

This is just mind-boggling. Ariel was beyond thrilled and said she didn't need to meet with us anymore because he's doing so great.  I was rather conflicted about that, I thought we were going to be coming in for months and months for therapy and instead we're told that we don't need her anymore!

A few anecdotes from Brandt on his success:

Our girl-cat jumped up in his lap and started purring loudly. I asked if he could hear it and he nodded. "So how long has it been since you heard a cat purr? 20 years at least?" I asked. "I'm actually not sure if I've ever heard a cat purr before..." he responded.

On the difference between his implanted and aided ear: "My left [aided] ear is so uncomfortable. The canal is hot and itchy, the sound is soft and muffled. Compare it to my right [implanted] ear, which is loud and clear, and doesn't hurt at all. The CI side is so much better."

He has been able to listen to NPR in the car for the first time in a year. He's always hated music but used to listen to NPR, particularly "Car Talk" and "The Diane Rehm Show," but had to give up on it because he was struggling too much.

On watching TV being bimodal: "I like being able to watch Star Trek in stereo! Now I have one ear for dialogue, and one for sound effects!"