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!

  

Return of the Whoosh

Sorry for abandoning my reports on ALDAcon; my whooshing tinnitus has returned with a vengeance, and I haven’t been able to concentrate—or sleep—very well for the past 5 days.

It got a lot worse in Colorado Springs, which I assumed was somehow from the altitude because the high-pitched squealing in my left ear also returned with a vengeance, and it hadn’t been bothering me for a long time.  The altitude affected my sleeping anyway, and the squealing left ear and windy, whooshing right ear made it nearly impossible.  The high-pitched tinnitus went away after I’d been home about 2 days (around the time I could take deep breaths again!), but the whooshing stayed.  It got better—less annoying, not as loud; but it never went away.  Then it quickly came back as bad as ever, and that’s how it has been for 5 days straight.  Even when I’m watching television and can’t hear it, I can still feel it, pulsing and whooshing in my ear.  It feels like a wind storm in there.

I’ve looked up all the horrible medical conditions that can cause whooshing, or “pulsatile,” tinnitus, but I don’t have any other symptoms.  No headaches, vision problems, dizziness, or high blood pressure (I just took it and it’s 108/67).  So, I think my only option is to get an appointment with an otologist or otolaryngologist (I’m not even sure which one I need!) and see what it could be.  I’m afraid I will need an MRI, which I can’t possible afford since I don’t have health insurance…

Another Birthday?

One of the last times the whooshing tinnitus in my right ear started up, it was right after eating at our favorite Mexican restaurant.  So after the whooshing completely went away again over the weekend, I wanted to test my theory that it was being caused by food (cheese dip and chicken fajitas—yum!).

The biggest drawback to this restaurant—and most restaurants, for that matter—is the noise.  There is always music playing in the overhead speakers, and sports playing on the flat-screen televisions.  We always bring the FM system, which helps cut out the background noise and amplify my voice, but it’s never a perfect setup. 

Someone was celebrating their birthday, which means the entire restaurant staff came out singing and clapping.  Brandt jumped and asked, “What on earth is that?!”  “Birthday,” I explained.  When we were done eating, we still had a lot of food left over and asked for some to-go boxes.  Our waiter dropped off the boxes and ran off, and I said, “I think we need to ask him for a bag.”  Brandt shrugged and said, “I don’t know, I guess you’d know better than I would.”  I’ve gotten pretty good at being able to tell when he’s mis-heard me, and I knew this was one of those times.  I furrowed my eyebrows, signaling that we were having a misunderstanding.  “Ok, what did you really say?” he asked.  “What did you hear?” I asked.  “There’s another birthday in the restaurant?  People are singing again?”  I shook my head and said, “No…I said I think we need a bag from the waiter, to carry all these boxes.”  He thought for a moment and said, “That wasn’t even close, was it?  And just how did I score a 90% on that sentence test?!”

As our waiter was clearing the plates off the table, I picked the FM transmitter up off the table and reattached it on my neckloop.  The waiter looked at it quizzically and asked me, “What’s that thing for?”  I explained that it was a microphone for Brandt’s hearing aids, and pointed at his ears.  “So, he can’t hear anything without that thing?” he asked.  “Well, a little…” I tried to explain.  We both looked at Brandt, who motioned towards his ears, shrugged, and shook his head.  “We’re talking about you!” I told Brandt. 

I’m always glad when people ask about the FM system.  I much prefer them getting educated about it, instead of just staring and whispering.  I also think it helps to dispel the myth that only ‘old people’ wear hearing aids!

And my whooshing tinnitus is still completely gone, so, I’m back to square one trying to figure out the cause…

  

“WHOOOOOOSH!”

It’s baaaack.  I’ve had problems with tinnitus off and on for the past year (though not nearly as bad as Brandt’s constant static).  Last summer I had a high-pitched tone in my left ear, that sounded like an old television set dying.  After several weeks of sleepless nights and a hearing test, I finally figured out that it was caused by the increased dosage of my blood-sugar medication.  I switched to an extended-release version of the medication and the tinnitus went away, other than an occasional tone that lasts a few seconds and goes away.  It was a huge relief to get rid of it, because it was driving me absolutely crazy.

Then when I was about to attend the National Association of the Deaf conference in Philadelphia last month, I woke up to a loud whooshing sound in my right ear.  It sounded like a tornado roaring inside my head, something I had never experienced before.  I could actually feel the whooshing.  I don’t have health insurance, and this happened on the Saturday of Fourth of July weekend.  I assumed that it was an ear infection, and since I was about to fly, I knew I’d have to get on antibiotics immediately.  So Brandt drove me to an emergency medical clinic, almost an hour away.  I spent $100 to find out that my eardrum was “clean and beautiful” and it wasn’t an infection.  The doctor didn’t have any advice other than to use Afrin nasal spray before flying (I already use it every time I fly).

Fortunately, the whooshing went away two days later, right before my trip.  I wrote it off as a fluke and forgot about it, until it came back a few weeks later.  This time it lasted four days, then went away again.  And it’s been coming and going since, lasting two to four days and then suddenly disappearing in my sleep.  The fifth round started two days ago.  It’s not anywhere near as annoying as the high-pitched tone that was in my left ear, but it’s still really annoying, especially when I’m trying to fall asleep.

I have no idea what could be causing this.  I take the same medication every day, so I don’t see how that could be the cause.  It starts and stops quickly—I wake up with it, then a few nights later it disappears while I’m sleeping.  I’ve wondered if maybe it is being brought on by barometric pressure, or maybe high blood pressure caused by eating a salty dinner.  I’m thinking about keeping a food journal, to see if there is a food or ingredient that is triggering it.

Whatever the cause, I’m ready for it to go away.  “WHOOOOOOSH!”

  

A New Sound

Last night Brandt and I were sitting in the living room playing on our laptops.  He was Earless (no hearing aids) and was typing along happily when suddenly he stopped, and whipped his eyes back and forth.  I thought maybe he had just read something that he was thinking deeply about, when he looked at me and asked,

“Based on your lack of a reaction, I’m guessing you can’t hear that noise?”

I raised my eyebrows and said, “Nooo…  What noise?  What does it sound like?”  He thought about it and said, “It’s like a monotone… which is different.  Usually my tinnitus is like a static.”  “Both ears?” I asked.  He thought again.  “More in the right.”  “Hmm, that’s weird,” I said, “since your hearing is worse in your left ear…”  He laughed, sighed, and said, “Oh goodie, a new sound!  Isn’t this fun?!”

I thought I had fully researched tinnitus and the [lack of] treatments for it, but today I discovered a possible new treatment that is being explored at the University of Arkansas for Medical Sciences.  Dr. John Dornhoffer is the director of both the Division of Otology and Neurology and the Hearing and Balance Center at UAMS, and suffers from tinnitus and hearing loss himself.  While researching treatments for “space motion sickness” in astronauts—which was funded by NASA—Dr. Dornhoffer discovered a possible treatment for tinnitus as well. 

By applying low-frequency, repetitive transcranial magnetic stimulation to the auditory cortex, Dr. Dornhoffer and his colleague Dr. Mark Mennemeier discovered that they could “reduce or eliminate tinnitus temporarily in over 50% of patients,” as reported in the medical journal The Laryngoscope in 2008.  Dr. Dornhoffer explains that they can locate the areas in the brain that perceive tinnitus, target that area with magnetic stimulation, and eliminate the tinnitus; but “the problem is, it doesn’t last very long—that’s the next step, that’s for the future.  Right now we know we can find it, we can localize it, we can make it get better, we just now need to ask the question, ‘How can we prolong the response?’.” 

There are only five Centers in the world working on this research:  two in Germany, one in Belgium, and two in the United States, and “all of us have the same common goal:  To help these patients.”  Here is a video of Dr. Dornhoffer explaining his research on tinnitus (unfortunately it isn’t captioned and the Transcribe Audio isn’t all that great—sorry!):

Dr. Mennemeier also has a video about tinnitus, although it is a bit harder to hear.

Keep up the amazing work, Doctors Dornhoffer and Mennemeier!

   

“Homeless Tequila”

Misunderstandings happen to everyone; they’re a part of life that we generally just deal with, without giving them much thought except for maybe a brief annoyance or chuckle.  However, for people with hearing loss, both the frequency and the frustration of misunderstandings are much greater, often leading to intense embarrassment and even social isolation. 

There are two types of misunderstandings: knowing you didn’t hear it right, and thinking you heard it right when you didn’t.  The second type is much worse, of course, and can cause all sorts of problems.

The worst/best/most memorable misunderstanding Brandt and I have had was about 2 years ago.  (I knew his hearing was getting worse, but “Dr. Smith” kept refusing to test it.)  I asked Brandt an innocent question when I got up one Saturday morning: “Hi honey, how are you?”  A mixture of pain and confusion pulled down his face. 

“Why am I Homeless Tequila?”

he asked in disbelief.  “What—?!” I stammered.  “Why would you call me that?” he continued.  “I would never call you something like that.” 

Another time, Brandt was doing Statistics homework and grumbled to himself.  I asked him, “Why are you grumbling, honey?”  He made a sad, insulted face and said,

“I’m not ugly!”  

I was a little taken aback.  “Of course you’re not ugly, you’re adorable!  I asked why you were GRUMBLING!” “Oh…” he answered, laughing, “I’m grumbling because I’m tired but I have to finish my homework before I can go to bed.  By the way, EARS SUCK!”  I responded, “Apparently!”

A less offending one happened when we were in Brandt’s hometown for his high school reunion.  As we drove by the old school buildings, I asked him, “Does it bring back memories?”  He coughed and asked,

“Does it bring back ovaries?!”

This reminds me of the Sprint PCS commercials from a few years ago that featured “Trench Coat Guy.”  He would appear when bad cellphone service caused hilarious misunderstandings.  In my favorite of the commercials, the wife calls her husband to say, “Get a movie; you know, something old,” but the husband hears, “Get a monkey, with a cold.”  Trench Coat Guy tells the wife, “It’s not his fault, it’s the cellular static.”

In another commercial, the wife asks her husband to bring home shampoo, and instead he brings home the killer whale Shamu.  Trench Coat Guy again explains to the angry wife, “It’s the cellular static.”

This is what we’re dealing with in Brandt’s situation, too—cellular static.  In his case, there are two types of static: the literal, LOUD static that he hears all the time (tinnitus), and the “static” of hearing loss that garbles and muffles what he hears.  Both of these are caused at the cellular level, by his damaged inner-ear hair cells.

The initial reason that I decided we had to learn Sign Language was to help cut down on misunderstandings caused by Brandt’s “cellular static.”  So if he’s about to go grocery shopping and asks me, “Did you say to get grapes or cake?” then I can repeat it with both speech and sign (as soon as I learn more food signs; so far I only know APPLE, POTATO, COOKIE, and MILK).

Another big help for cutting down on misunderstandings, especially when we’re not face-to-face, are e-mails and text messages.  I don’t like having to pay for every text, but they’ve been a huge help!
  

“HHHHHHRRRRRRKKKKKK!!!”

About 4 years ago, a year after we had started dating, I asked Brandt a question that changed everything I thought I knew about hearing loss.  We were sitting in the living room; he was grading papers, and I was watching television.  He didn’t have his hearing aids in, and I wondered how much, if any, of the TV program he could hear.  “What do you hear right now?” I asked. 

“HHHHHHRRRRRRKKKKKK!!!”

I jumped.  “What was that?!” I yelled.  “That’s what I hear” he said, nonchalant about it.  “That LOUD?!” I asked.  “Actually, louder.  It’s been like that for as long as I can remember.  It used to keep me awake at night when I was a kid.  I thought everybody was like that; I think I was in high school before I realized it wasn’t normal.”  My mouth hung open in shock.  He shrugged and went back to his grading.  I sat there dumbfounded, embarrassed that I hadn't asked this sooner.

I thought that I was a great expert on all things hearing loss-related, since I grew up around Aunt Louise, and had been friends with Josie for several years before I met Brandt.  As far as I know, Louise didn’t have tinnitus (although she never complained about anything, so it’s possible…)  I did know that Josie was not afflicted with it.  She had told me that her Saturday morning ritual was to read the newspaper and watch TV without her hearing aids in, enjoying the complete and perfect silence.  So I just assumed that Brandt was the same way; watching him quietly grade his papers, I thought he was enjoying noiseless tranquility.  Nope, not even close.

Tinnitus literally means “ringing,” but can be perceived as a number of sounds such as buzzing, hissing, clicking, roaring, crickets chirping, beeping, whooshing, or a pure steady tone.  In Odyssey of Hearing Loss, one sufferer describes his tinnitus as:

“air-raid sirens pounding against my skull,” “ocean waves,” “loud lawn mower,” “a ton of bricks falling on a pile of church bells,” and “my brain is gurgling.”

It can be sporadic or nonstop, and ranges from a faint background noise to painfully loud and distracting.  An estimated 50 million Americans suffer from tinnitus, most of whom also have hearing loss.  It has many possible causes, including hearing loss (tinnitus is a symptom of hearing loss, never a cause), noise exposure, earwax buildup, ototoxic medication, and a host of medical disorders.  Tinnitus can be compared to a “phantom limb,” as the brain tries to make sense of the damaged inner ear and the lack of auditory input.

As I was in the middle of studying about tinnitus last summer for my Hearing Loss Support Specialist certification, I started noticing a faint tone in my left ear.  At first I ignored it, but it grew louder and more continuous, until after a few weeks it was a nonstop tone.  It sounded like the high-pitched squeal of an old television set; I couldn’t drown it out with background music, and it kept me awake and in tears every night for two weeks. 

Panicked, I got my hearing tested at Dr. Awesome’s audiology clinic.  My hearing was declared to be “within normal limits” (less than a 20 decibel impairment) except for a mild 25 dB loss at 2000 hertz in my right ear.  It wasn’t the ear that was hearing the noise, so the audiologist had no explanation.  I was desperate for an answer, a cure, or just some relief.  Brandt tried to be helpful by saying, “You’ll get used to it.  It’s annoying sometimes, but you’ll adjust.”  I screamed, cried, and threw a fit, which only made the tone louder.

I went back to my class readings, and had an epiphany.  Ototoxic medication.  About a month before the tinnitus started, my doctor had increased my dosage of blood-sugar medication.  I immediately went back to my old dosage, and two days later, the tinnitus started to subside.  After another week, it was almost tolerable.  I switched to an extended-release form of my medication, and after a few more weeks, the tinnitus was gone.  I could finally sleep in silence again.

Brandt hasn’t been so lucky.  Lately he has been waking up in the middle of the night, mistaking his tinnitus for external noises.  He’s thought it was the smoke alarm, a train, and a jet engine flying over the house.  Each time, he thinks it’s coming from a different source.  Despite this, though, he still doesn’t act like it’s a big deal.  He’s always very calm and mellow anyway, but he deserves some kind of award for dealing with this without complaint.  Sometimes he takes out his hearing aids and comments on how much better his Earless World is—

“Everything is so LOUD out there!  When I don’t have my ears in, my world is so quiet.  All I hear is my static, and it’s so nice.  When that’s all I hear, it’s easy to ignore it, and it’s very peaceful.”

When he says this, all I can think is ‘How on earth can “HHHHHHRRRRRRKKKKKK!!!” be peaceful?!’