Too soft or too loud and very little in between

I have always been a music lover. My first concert for my 15th birthday was Third Eye Blind. I had memorized all the lyrics to all the songs. Back then, it was possible for me to gather most of the lyrics just by listening. But, over the years, I have slowly sought out the dust jacket or online lyric databases to fill in the gaps for me.

I went through that angry female music fan stage in my early teens too. I loved Alanis Morrisette and Fiona Apple. They both had such resonance in their voices and an amazing ability to create melody. Funny enough, it would take years of listening to them over and over to understand that most of their songs, not just their perspective anthems “You Oughtta Know” and “Criminal” were pretty violent. I still think they are both great artists but I often wonder what my family must have thought when that was all I listened to. I didn’t realize what the subject was all the time. But, I must have behaved as if I did. After all, I would sing those lyrics that I could understand and then mumble the rest. I would bluff my way through a song. But, get me on stage for karaoke to any of the songs I loved during my childhood and I lose my place as I quickly realize what I heard was not what the songwriters had intended.

The first dance on my wedding day was a beautiful song by Chantal Kreviazuk called “Home.” I had carefully picked it out for its beauty and its lyrics. I had listened to it over and over. The day of my wedding, I took that first spin on the dance floor and sang my version of the song. The wedding video showed that my mouth was out of sync with the music. My husband commented on it and suggested it was poor editing. I knew better. I had lost my place in the music that day and couldn’t continue properly. So, I was improvising, trying to mouth the words I could hear.

I guess a lot of times I didn’t know or didn’t want to realize what it was that I couldn’t hear. I distinctly remember a hearing exam at the House Institute in L.A. when I was a teenager. I asked my mom to sit in the booth with me. The audiologist conceded. My mom was sitting directly in front of me as I responded to the tones and words coming from the headphones. They didn’t sound loud or frequent to me but I could tell by the look on my mom’s face that they were both. Slowly, her worry showed on her face as I missed words or failed to respond to a tone. She could hear it while I had headphones on! I was shocked.

Over the last few years, though, changes in my hearing loss have made me more susceptible to hyperacusis. This means that certain sounds are painfully loud to me. It depends on whether I am having a good AIED day or not. It’s never clear what sounds will make me want to jump through the roof. The only consistent sounds that have always bothered me beyond the obvious--background noise--are sirens and any mechanical noises.

My first summer in college, I returned home to L.A. and got a job as a docent at local museum. I loved the public-speaking component. I loved guiding the tours and asking thought-provoking questions of the visitors along the way. But, my most vivid memory has to be the day I unwittingly made a scene over a visitor’s hearing aid.

Toward the very end of the tour, a video would play on a large screen. I had heard it dozens of times and practically knew it by heart. My job was to pose a short question and answer session in that room post-video before taking all the visitors upstairs to the next exhibit. Immediately after the video started to play, I began hearing a persistent, painfully high-pitched squeal. I checked my hearing aid, nope it wasn’t that. I couldn’t identify the source or the direction as usual, but after a couple of minutes I couldn’t take it anymore. I called the I.T. guy on site to come take a look at the speaker system. The I.T. guy came and quickly determined it wasn’t the speakers.

One of the visitors gave me a look and pointed discreetly to an elderly man among the group who I hadn’t noticed. Clear as day, sat two hearing aids, one on each of the man’s ears. I was so embarrassed for him and me. My hearing aid interacts with all kinds of sounds—the microwave going off, the alert signal when I leave my car door ajar, the waves coming from a retail store’s metal detector—but this was the first time I had heard someone else’s feedback through my own aid. Fortunately, for me, the gentleman appeared oblivious that the whole scene was caused by his hearing aids and I quickly led the group upstairs.

What doorbell?

I’ve worked since the day that I was able. I’ve held countless retail jobs before graduating journalism school and taking several jobs in my chosen field. But, before all that, I was the neighborhood babysitter.

Beginning at age 14, I marketed myself. I posted flyers around my new neighborhood. I was determined to make some spending money. Plus, I loved kids. Ever since I can remember, I’ve envisioned being a mom. I never had siblings, but every chance I got, I would befriend younger kids—be it my mom’s friends’ children or my newest baby second cousin. I think I was looking for the companionship as much as I was looking for the cash. Plus, I was never one to sit still. I even printed out pictures of cartoon caricatures that my charges and I could color in with my trusty box of crayons, in case we ran out of things to do. Before you knew it, I was in high demand.

One of the first kids I babysat was an adorable little two-year-old boy named Frankie. We were best buds. As he got older and he became more vocal, I realized I was having a hard time understanding his soft lisp-y voice. I figured it was just because he was shy and he wasn’t speaking up. After all, I was wearing a hearing aid. I had practically normal hearing, right?

One day, while changing his diaper in his room upstairs, he kept telling me someone was knocking on the front door and even ringing the doorbell. I figured he was conning me to get out of a diaper changing. I firmly told him that there was nothing going on at the front door. Frustrated with me but always aiming to please, he fidgeted but stayed quiet while I finished changing him. Once we were done, he insisted we check the front door. No one was there. Why don’t we go for a walk now, I suggested. He agreed.

We weren’t more than a quarter-block down the street when the neighbors across the street ran up to us and to tell me they were just ringing the doorbell to see if Frankie wanted to come out and play. I was dumbfounded. How had I not heard the bell? Why had Frankie heard it and not me?

Years later, I would learn that children have lower hearing thresholds--the softest noise they can hear on average is quite a bit softer than adults can hear. Since my hearing then was worse than the average adult and hearing aid technology has never been able to amplify high pitches enough so I can hear them, voila, that’s why I didn’t hear the bell. In conjuction with my distance from the sound source, and the reverberation of the high ceilings, no wonder it was impossible for me to hear. Consider this: at the time, I had a mild to moderate hearing loss in the left ear and moderate to severe in the right and I was only aided on the right. I was still missing plenty. It makes sense now but, as a teenager, I was still so far in denial about my hearing and the reality of it. I didn’t want to accept that my hearing affected every facet of my life.

Growing up Stubbornly Hard of Hearing

Now that I have this newfound perspective, I realize there have been so many defining moments related to my hearing loss. The first, came in the form of teasing in elementary and junior high school.

Let me share the backdrop for the teasing. When I was in the third grade, my father had a mountain biking accident on famous Mulholland Drive in Los Angeles. He was veering to get out of the way of a car he thought was driving too close to him when the front wheel of the bike failed. The rim of the bicycle wheel was severed. He was riding downslope at the time, so the jolt caused by the wheel collapse flung him dozens of feet into the air. He landed face first. The impact left his face split open from the nose down and his teeth and part of his jaw bone decimated. Nearly a dozen surgeries would follow but miraculously, my father would survive with only scars, titanium implants and mild short-term memory loss to show for it.

I was extremely vulnerable after this cataclysmic event. I went from being sociable with my group of girlfriends to a child slowly retreating inward. A misunderstanding between friends led to a huge tiff shortly after my dad's accident and consistent playground ridicule ensued. Up until then, my hearing aid--I only wore one in my right ear off and on from my diagnosis until age 27--had just been something I forgot to remove when I jumped in the pool in my backyard. Quickly, though, it became added fuel for the fire for my tormentors. Suddenly, I was acutely aware of my differentness.

I moved to a new school for highly gifted students for 4^th and 5^th grade where I remained aided. But, when it was time to go to junior high, I was determined to fit in. To fit in, in my mind, was to stop wearing my bulky behind-the-ear hearing aid. And, that’s what I did.

Of course, this stubbornness about my hearing loss in conjunction with all the typical pre-teen angst made me pretty much a terror. I was too young to realize the biggest source of my troubles was my refusal to be aided. I just knew I didn’t stick out amongst my peers anymore and that was all I desperately wanted. Mom and Dad tried and tried to encourage me to wear my hearing aid to no avail.

Three trying years later, it was time for high school. My parents and I had moved to a new neighborhood and so I was going to a school where I knew only two people. It was a fresh start that I was both excited and nervous about. At age 14, my ear was fully developed and I was the perfect candidate for a more discreet aid option—an in-the-ear Widex. Thousands of dollars of my parents’ hard-earned money were plunked down for the brand new hearing machine. My mood and grades improved almost overnight.

When I was 15 and a sophomore, my classmate Ari threw a big Halloween party at his mother’s house and invited all our friends. I dressed up in an emaculate Greek goddess costume complete with gold sequins. I felt like the Belle of the ghoulish ball. I was goofing around in Ari's backyard with friends for about an hour when it dawned on me--I was having a hard time hearing. My hearing aid was missing! I was completely devastated. Where was it? I was sure it had fallen out. I immediately burst into tears. I kept thinking, how are my Mom and Dad ever going to forgive me for losing this hugely expensive item? How was I going to live life without it?

My amazing friends began a search party as the sun went down that night. They combed the ground for the small skin-colored amplifier. They were essentially looking for a small snail in a big forest--no less in the dark! It was all for naught. After summoning the courage, I fearfully called my parents. I was relieved when Dad answered. I didn’t want to face Mom just yet. I pitifully asked my Dad to look in my room and bathroom for my hearing aid. I had gotten ready for the party in both just a couple hours before. My dad found it a minute later, sitting on the bathroom counter near the hairdryer.

The hairdryer has consistently been an object I can't use while aided. The amplified noise of a hairdryer sends me into a full-on state of panic. So, each time I use one, my hearing aids vacate my ear.

That Halloween, it had been more than a year since I had begun wearing my hearing aid daily. That night was the first time I had forgotten to put it in before heading out of my house for any reason. I was both relieved and incredibly embarrassed by my emotional display. Fortunately, most of my friends forgave me, though I think many of them never looked at me quite the same way again. I am not sure how many of them had been aware that I wore a hearing aid until that evening. I had chosen not to mention it to anyone. Now, the secret was officially out.

That same year, my hearing aid came loose one day in history class. My crush at the time made a comment about a weird whistling noise. He said it was coming from my direction. Frustrated at his relentless flirtatious teasing, I began to argue with him that he was making things up. Then, suddenly, it dawned on me, he’s hearing feedback from my hearing aid that I can't hear myself. I quickly took my hearing aid out for the rest of the day. At home that night, I told my Mom we needed to go to the audiologist to get the mold of my hearing aid resized. It was coming loose in my ear and calling attention to my shameful problem.

Once the new mold was ordered and received, life went on as normal. I became an editor on my high school newspaper, a swimmer on my school’s varsity team (poolside conversations and commands were next to impossible for me to hear but I never let on) and a superior student in honors and advanced placement classes. I was not defined by hearing loss or so I thought, and I was proud.

My pride got in the way most notably when I was applying to college. I had had my heart set on Emerson College in Boston for Broadcast Journalism since I visited the campus the summer before my senior year of high school. I applied early. My college counselor and my mother pushed me to include my impairment in the application. I refused. I felt if I did include that I was Hard of Hearing, it would essentially be like asking the admissions board for pity or a free pass for getting less than stellar grades in some of my classes. I had done just fine despite my hearing loss, thank you. Plus, I had convinced myself that any trouble I had in classes had to do with my intellect and not the fact that my classmates were talkative, that I chose not to sit in the front in most classes or that female teachers were generally hard for me to comprehend. I had long pulled the wool over my own eyes. I wouldn’t realize the tricks I had been playing on myself for nearly a decade.

Ultimately, I got into Emerson College but none of the other schools to which I applied. When I received the rejection letters, I considered appealing the decision, particularly to UCSB and UCSD. My well-meaning college counselor again suggested I include documentation of my hearing loss as part of my appeal. I adamantly refused and decided that if that was my only recourse than screw it, I had already gotten into my top choice school so who cared? Talk about being as proud as a lioness.

AIED, EVA and other acronyms

AIED: Autoimmune Disease of the Inner Ear

EVA: Enlarged Vestibular Aqueduct

IgM: Immunoglobulin M

22 years after being diagnosed with hearing loss, the truth behind my impairment has finally been revealed. A recent CT scan revealed I have a rare congenital defect of my cochleas known as Enlarged or Wide Vestibular Aqueduct. In short, this means I have more space in my inner ear for the potassium and sodium-rich fluid that is partly responsible for how every human being hears.

Bloodwork has also revealed I have Autoimmune Disease of the Inner Ear. This illness developed, as I look back retrospectively, probably about two years ago. The fluctuating aural fullness I experience daily began around that time. I also began to have more and more trouble hearing but I thought I just wasn't focusing. After all, my hearing loss was deemed stable in my teens after frequent audiological testing in my childhood revealed consistent results.

The same bloodwork done to identify AIED also revealed I have high levels of immunoglobin M in my system. A Western Blot for Lyme Disease also turned up positive. I am in the process of going to a rheumatologist to determine whether or not I do in fact have Lyme Disease.

Meanwhile, a few weeks ago I also suffered from a bad case of the stomach flu and an ovarian cyst rupture that landed me in the ER.

All this proves the way I have been feeling for a while now was really real and not a figment of my imagination. To know that I have spent my entire life trying to overcome an anatomical defect that caused hearing loss and that my hearing loss really has changed is both disturbing and liberating. To know that my feeling of being physically unwell was real is equally liberating. It is reassuring that there may be some relief in sight.

I've begun to write about all these new discoveries at the suggestion of one of my former classmates in the Audiology program at SDSU (which I have since left in light of all my health issues.) This is what I have so far:

"I have been hearing-impaired since birth but it wasn’t until more recently that I have finally acknowledged I am Hard of Hearing and not simply Molly who happens to have trouble hearing. I have bluffed my way through more conversations than I can possibly count. The number of times I have asked for something to be repeated is likely approaching the number of stars in the sky. I have dominated conversations for as long as I can remember. And, when I can’t control the conversation or the setting, I retreat into myself.

I remember the first time I saw my hard-of-hearing 90-year-old grandfather get lost inside himself at a family get-together. The pain I felt as I recognized his behavior and the look on his face as those I have displayed my entire life ran indescribably deep. No matter how much I’ve wanted to hide the truth my whole life, my hearing impairment has led to countless misunderstandings, consistent struggles and numerous damaged relationships. That is the painful truth.

Years ago, I came to the realization that my hearing loss was invisible. I had always wanted it to be so. But, as I got older and settings like those at work, family events and outings with friends got increasingly dynamic and varied, I realized the very same invisibility I had often been grateful for was in fact a burden. As a young kid who was desperate to fit in and be normal, I used to often privately thank the gods I hadn’t been dealt a disability that had left me disfigured. Very few people have stopped and stared at my hearing aid—particularly when my hair has covered it or when, during my junior high school years, I chose not to wear it all. I could ignore the problem as much as I wanted and make excuses for my hearing impairment as much as I wanted. People wouldn’t judge me at first glance. And, when they did judge me, I thought it was because of my merits, not my disability. That was how I coped for 27 years.

Now, everything has changed. The day I returned to work after marrying my soulmate and enjoying an amazing honeymoon in Napa and San Francisco, I was laid off from my television production job. Four months after being dealt this professional blow, I tore my ACL on the slopes of Mammoth Mountain. Down on my luck and as physically limited as my elderly grandparents, I had a lot of time on my hands to reevaluate my future. I have always had a highly analytical personality. It had always gotten me far.

My plan from the time I was a pre-teen was to become a professional journalist, a loving wife and mother, a daughter my parents would always be proud of and an upstanding member of my community. At 25, I was a loving wife and daughter with a career in shambles and a body that was temporarily shut down. I decided during those months of recovery that I wanted to help others like me. I wanted to become an audiologist. The decision was a really personal one. Growing up I didn’t have any peers who were hard-of-hearing. Like everyone else, I had always considering hearing loss a disorder exclusive to adults and the elderly.

My parents and I had been told at age 5 that I had hearing loss and that it was due to a precipitous birth. I had the umbilical cord wrapped around my neck on the afternoon of Monday, October 10^th, 1983. My mother’s obstetrician used forceps to deliver me shortly after 5pm. I looked like E.T. in my parents' prized first photo of me, snapped in the delivery room. That didn’t matter to Amy and Dale. I was their first-born--and, ultimately, their only child-- I was perfect. Molly Caitlin Millbauer was one of the most loved babies this world has seen.

Shortly after birth, I developed a hematoma on the right side of my head as a result of my risky delivery. My mom lovingly referred to me as her “broken child” because the hematoma left me unable to lift my head. As it shrank, my neck grew stronger. Finally, eight months into life, I was no longer broken--my head was firmly planted upright on my little frame.

By one and a half, my once jet-black head of hair had turned white blond and curly. The color of my hair set off my blue eyes. I looked like a cherub. Toddling around in my childhood home, I was slow to speak and a little quiet. But, I almost always had a smile on my face and I loved and was loved by my family.

My speech finally came as the years went by—it came predominantly in the form of Spanish. My mom returned to work four days a week as an office manager for an Infectious Disease Specialist three months after I was born. My dad worked full-time as a Real Estate Consultant. I had several caretakers but by age 2, I was being cared for by my Spanish-speaking nanny Consuelo. Cony is from El Salvador. She had left her young son and daughter behind in El Salvador in the care of her mother, while she went to work in Los Angeles with the goal of providing for her family. Cony found a surrogate daughter in me. Before long, I was holding conversations in Spanish with her. My favorite past-time was following her while she cleaned the house pushing my Fisher-Price vacuum cleaner along the way, yelling “¡Limpia! ¡Limpia!” at the top of my lungs.

I preferred Spanish and my mom who was herself nearly fluent because of her lifelong love of Romantic languages (she had taken years of Spanish and Italian in high school and college) indulged me. After all, the ability to speak in two or more languages is a huge asset in this increasingly small world. As I began school, though, it became apparent that my English language abilities were delayed. I had trouble with pronunciation. A “sharp” was my name for Jaws and his other fellow scary beasts of the sea. I ate raisins with reckless abandon and would refuse to call them anything other than my name for them--“Eeries.” My teachers began to encourage my mother to speak English in the home to help me progress linguistically. So, that is what she did. Spanish was used less and less and slowly, my English skills improved.

It wasn’t until I had all but lost my Spanish skills, that my hearing loss was finally revealed. To this day, I am an English-only speaker with very limited understanding of the Spanish language. In fact, I struggled immensely in high school Spanish. A big part of my poor grades in these Spanish classes: accented speakers were slowly becoming harder and harder for me to comprehend."

More to come soon....

May weather is my favorite

It's the beginning of May which is very hard to believe. I used to think it sounded so cliche to say this but-- this year is just flying by. I am happy to report that I got an unexpected part-time job doing data entry thanks to a friend. It's really important to know people in today's economy! It's a temporary gig but extremely welcome.

Last weekend was incredibly awesome with my friend Tami coming to visit and perform at La Jolla Comedy Store. After that, my friends Marie and Paul, who I have mentioned on here before, came in to town from New York. I spent several days with them and our mutual friend Lindsay getting to know SD better. We enjoyed Seaport Village which I can't believe I hadn't been to yet (except apparently one time as a young child but I don't remember that). Definitely recommend checking out Urban Girl there. We also hit up Old Town which is always a blast. Friday night we went to The Office in North Park (which I also HIGHLY recommend). Two for one drinks there during happy hour and the best fish tacos from a food cart out back. We danced to some awesome music mostly from the 70s and 80s. I forgot how much I LOVE to dance. I probably looked like a damn fool but I don't care! Good way to work up a sweat.

Right now I am trying to lose some weight I gained in the process of my recovery from my ACL injury. It is proving to be much harder than I thought it would :-(.

The next couple of weeks will be pretty jampacked with fun. This weekend Zack and I are heading up to L.A. for Mother's Day. And, the following Friday we will be heading up to Dana Point for a wedding. Zack is the best man. Love the couple who is tying the knot. There's sure to be pictures to follow.

Latest Obsession: Black Session beer by Full Sail (see below). Zack and I actually visited the Full Sail Brewery in Hood River, Oregon earlier this year with my cousin Jolie. Readily available at Bev Mo these stubby 11oz glass bottles of heaven have "Rock, Paper, Scissors" logos on the flip side of each bottle cap. I have yet to collect them all.

Things I enjoy... and you might, too!

Hot Power Fusion yoga classes at Corepower Yoga.

Reading a good book like Middlesex, The Help, The Good, Good Pig or anything by Charlaine Harris.

Knitting--here's one of my latest creations:

Swimming. Damn, I miss having a good pool to swim in.

Skiing, or at least I did before I hurt my knee. We'll see how I do when I make my return to the slopes next winter. Stay tuned.

Wine. My faves are Savignon Blanc, Cabernet Franc, Pinot Noir and Petite Syrah. Trader Joe's carries this awesome Petite Syrah that Zack and I get often:

Volunteering with the Pet-Assisted Therapy program at the San Diego Humane Society. I volunteer several times a month. We take animals to people in facilities and schools. The power of animals to heal people is just astounding to watch.

Decorating the condo. Here's just some of the improvements we've made lately.

This list will be expanded upon often. For now, it's time for bed.

New to the Blogosphere

I've been wanting to test out a blog of my own for a while now. My friend Marie and her husband Paul have one that helps me stay in the know about their life, travels and home renovations while they're on the East Coast and I live here on the West with my husband, Zack. I have never been really good about keeping a diary current and up-to-date. I guess, life just gets too hectic or maybe I just lose interest in putting pen to paper. Hopefully, I will do better in this format.

It's really been a transitional couple of years for me. I moved to San Diego in December 2006 for work. I was a journalist and I got a gig at Channel 8 as an associate producer. Less than a year later, Zack proposed while we were on vacay in Cancun. A year after that on November 2, 2008, Zack and I got married. Here we are :-).

We now live in an awesome condo in Hillcrest near historic Balboa Park, the San Diego Zoo and Sea World. We also have a fabulously hilarious little guinea pig named Chip. Isn't he cute?

I had just started a new job right before I got married, only to get laid off just a few short months later. To make matters more complicated, I had a skiing accident a few months after the layoff that busted my ACL (leading to surgery and months of physical therapy). All this craziness left me a little frazzled. Eventually, it also forced me to make a drastic, positive life change. I decided that it was time to pursue another profession. I began prepping for a doctorate in Audiology. I'm hearing impaired and have been since birth. My personal experience with hearing loss has also made me interested in the field.

After completing several pre-reqs, I applied and was accepted into the joint doctoral program in Audiology offered by SDSU and UCSD. I start this fall! I am extremely excited. And, viola, that's the story behind the title of this blog!