Monday, May 7, 2012
Hard of Hearing Mom-hood
Thursday, November 10, 2011
Intertympanic Shots: 3 down, 1 more to go
The whole process takes less than a minute but as the injection goes in it causes intense vertigo, which is well-documented so they inject you lying down. Post-injection it feels like your ear is full and, at least after the first injection, my ear burned like someone had boxed me in the ear. In order for the inner ear to absorb the prednisone, a patient has to lie on their opposite side and wait for gravity to take effect. It's weird because your ear feels as if it's acting as a suction cup. You hear some weird suction-type sounds, too. Perhaps the most awkward thing about the post-injection period: you have to lay there for 30 minutes without talking or swallowing. Translation: spit into tissues for a half hour so as not to swallow your own saliva.
The whole experience the first time around made me wary about continuing with the three other injections the doctor prescribed. Fortunately, shot #2 five days later was alot less painful. And, finally, about a day after that injection, I awoke to no tinnitus for the first time in a week. With my spirits lifted, I had my third shot done yesterday. Again, it was less uncomfortable than it had been in the previous two visits. My final shot is scheduled for Monday.
It will be intriguing to see if my hearing rebounds at all from the treatment. As far as I am concerned, I've noticed it's been easier to chat on the phone than it was during the episode and I'm overall not as tired because I don't feel like I'm struggling like I was. Should there still be some permanent loss sustained by this latest episode, though, I will once again be that annoying patient who advocates for herself and ask for another hearing aid adjustment.
It's been about 8 months or so now since I've gotten my Exelias and I now fully understand and value the fact that getting the best amplification possible totally transforms my life and affects everything from my energy level to my mood. As long as my ears can benefit from amplification, I will be that patient that's constantly fine-tuning her aids to fit her fluctuating loss. Sometimes it feels like I am running after this hearing loss trying desperately to catch up to it and be the best hearing person I can be. I can't say that it's not exhausting sometimes but at least I have finally embraced it. There's a peace about it now that I never had. I hope it keeps.
Thursday, October 6, 2011
Hearing should be a right not a privilege
This is perhaps the most emotional and inspiring video I have ever seen. To me, it showcases the power of good hearing for those of us who lack it. It also makes me so grateful to live in a time when people like her and I can benefit from technological advances in audiology. But, most importantly, it is proof to me that hearing is a right, not a privilege. Not every deaf person wants to become a hearing person. Deaf culture is alive and well. While I myself am not a member of the Deaf community, I got a taste of the pride that community has while taking an ASL class in college. For those who do want to hear though, hearing MUST be a right NOT a privilege. It's widely accepted that every American who has problems with their vision has the right to get the medical care and equipment necessary to see clearly. Why does the same not hold true for the hearing impaired?
Not long ago, when I discovered my hearing loss had progressed, that I was badly under-aided and I needed new hearing equipment, I learned my insurance would not pick up any portion of the tab for my aids. I was furious at the news. I remembered my parents telling me when I was younger that they had to pay out-of-pocket for my BTE (behind-the-ear). Later, I also remember that a new insurance plan my parents had acquired in my teens DID cover aids. That policy allowed me to get my first pricey ITE (in-the-ear). As a youngster, I didn't consider the lack of insurance coverage of hearing equipment an injustice. I didn't fully grasp the expense or how insurance coverage or lack thereof impacted my family. I was fortunate that circumstances allowed me to have the best technology and care.
At 27 years old, though, I needed two new aids (and power aids at that) for the first time in my adult life. I felt so ostracized by "the system." One of the many reasons why I feel blessed for my short stint in audiology school: they pointed me in the direction of the Vocational Rehabilitation program. At first, the idea of asking the state to subsidize my hearing equipment made me incredibly uncomfortable. It took months of struggling with the idea, while reluctantly filling out the paperwork and going to the necessary meetings, before I realized that it was my right to ask for help. If my insurance company was failing me, it was my right to seek other ways to cover the cost of my $6,000 aids. The Voc Rehab program recognized that, too, and that the aids were my tools to gain and retain employment. After approval, it was discovered that Cigna, my insurance company, had recently altered their coverage for hearing aids. Now, they were covering $2,500 in hearing equipment annually! It was a heartening, small step in the right direction. Voc Rehab picked up the remainder of my bill and after months of bureaucracy, I was fit with my Phonak Exelias. The elation I experienced that first day with MY new aids (I had been loaned others, off and on, while waiting for the ones I now call my own) parallels Sarah Churman's in the above video.
In Sarah Churman's case, her implant cost $30,000 just for one ear. She went on Ellen eight days after the above video was shot to tell her story. Her insurance company didn't cover her procedure at all. Her mother-in-law, realizing how important hearing was to Sarah and her young family, selflessly cashed in her retirement fund and paid for Sarah's procedure. Ellen DeGeneres, who I adore, recognized the awful injustice--that a woman could essentially be priced out of a basic right--and worked out an amazing solution to the Churmans' financial situation. She got the company who makes Sarah's implant to agree to reimburse Sarah the $30,000 for her first implant and gave Sarah an additional $30,000 so she could have the procedure done on the other ear. It was a remarkable act of kindness. It also highlighted the growing understanding within the hearing community of the need for change. It gives me hope that one day aids, cochlear implants and medical procedures aimed at restoring one's hearing will no longer be viewed as vanity items but truly medically necessary tools to restore the right to hear to anyone who seeks it. Go Ellen and go Sarah!
Here's the segment on Ellen. Warning: Grab a hanky before viewing!
A Deaf Woman Who Can Finally Hear Meets Ellen
Thursday, February 10, 2011
Hearing Loss is not just for the Elderly
The 30-second spot for Captel, which I've now seen a number of times much to my dismay, left me really upset. The commercial shows a grandmother using the phone to talk to her grandson. For someone who is hard-of-hearing and not in the stereotypical age group, I couldn't overlook the message it was sending to viewers. Every time I have had to reveal to a customer service person, a professor, a boss or a new acquaintance that I have hearing loss, I am always met with a surprised look. I am not what anyone would think of when asked to describe a hard-of-hearing person. This commercial is broadcasting the misnomer that HOH means old to millions. Nothing good can come of this for the millions of young people like me with compromised hearing.
I know I am not alone in feeling the occasional shame or embarrassment for having a disability believed to be reserved for the elderly. It took me years to even acknowledge that I had an issue and that it might be worthwhile letting those around me know about my hearing loss. Instead, I tried to blend in with my peers and compensate for my disability. It would have been markedly easier to grow up hard-of-hearing if the stereotype hadn't always lurked in the shadows.
I wonder, as more and more people of all age groups are diagnosed with hearing loss, whether the stereotype will fade away. I doubt it but one can only hope. It would be a relief to me and so many like me to not be met with such incredulity and disbelief each and every time we reveal ourselves as hard-of-hearing.
I'm tempted to write to the company and point out that they're excluding a large untapped market by advertising their technology only to the elderly. I'm just not sure what impact such a letter might have because as it stands, it's true that young people are still in the minority in the HOH community. I'm still, by several decades, the youngest member of my local HOH group. Maybe I should just do it anyway?
Tuesday, November 30, 2010
What doorbell?
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.
Thursday, November 18, 2010
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 4th and 5th 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.
Wednesday, November 17, 2010
AIED, EVA and other acronyms
"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 10th, 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....