I was born hard of hearing. I was in first grade when I got my first behind-the-ear hearing aid, and 2nd grade when I got the 2nd one for my other ear. I wore behind the ear hearing aids until age 20. After that, I have worn half canal or micro hearing aids since.
I am writing because I am facing the trauma of getting another pair of hearing aids, which always carries the risk that the quality of sound may plummet. This time I face having to make the transition from micro analog hearing aids to half canal digitals. I can't express in words how terrible the quality of sound is. They sound just like the hellish behind the ear aids I grew up with. If I have to keep the new hearing aids I have in my possession, they will be the first ones I will never wear, and I will have to dig deep into my pocket to find someone else to help me get my life back.
You see, my audiologist is my brother. For three or four pairs of hearing aids he has been generous with me as I've never had to buy them. He took on the cost. I want him to be pleased because I know he goes through a lot of trouble trying to get me the right hearing aids, and having to deal with his most intolerable customer--me. He is also hard of hearing, just not as much as I am. I don't know why we always have the most difficult time trying to communicate with each other when it comes to hearing aids. Maybe it's because he's male and I'm female. Because my loss borders on severe, he is trained to want to give me the most "power" in an aid, when all that does is distort sound to the point of making me suicidal. The worst part of my current quagmire is that I held onto new the hearing aids that I knew weren't good for me for too long, and he will not be able to return them to the company for a refund. None of this is his fault. I did this, not him, because I'm too much of a people pleaser and I didn't want to hurt him. I hoped to somehow make these things work. I am faced with having to refuse living like this for the next nine or ten years, and watch money go down the drain. My only hope is that he let me pay for his cost, because the mistake was mine.
I finally confessed to my sister that I'd rather be deaf than to hear sound like that. Actually, I'd rather be dead than hear sound like that. This may sound melodramatic, but it's real. I know I'm not the only one. There are many other hard of hearing victims of bad hearing aids that are finally put away in a drawer somewhere. Thousands of dollars down the toilet. I don't blame my brother, he does the best he can. But I do blame the designers of hearing aids, because sometimes they actually have a good thing going and they ruin it by trying to improve on technology, and making old designs obsolete. I feel as if my right to choose is taken away from me and every moment of my life is at the mercy of these engineering monsters. Badly designed hearing aids turn me into a basket case. I am sure it does others, or there wouldn't be so many unused hearing aids lost in people's drawers. I think there should be a recall on all those hearing aids.
Let me tell you my story.
I was a prisoner my entire youth. I did not live behind bars, but the pain of isolation hurt just the same, if not worse. I was born with a 60 decibel loss. What this means is that my hearing begins at 40 decibels--conversation level. Anything less than conversation level I cannot hear without aids. My loss is on the edge of "severe". This means audiologists are trained to target "powerful" hearing aids for people like me. In practice, this means the hearing aids do not just turn up volume, but manipulate sound in such a way that everything audible is a complete distortion from naked ears. Many tones are incredibly sharp. Others are muffled. Powerful hearing aids allow me to hear all too "clearly" the truck that goes by, but voices are most often muffled. Hearing aids like this do something odd to my brain as well--I will hear what someone says, but not understand them in frequent moments because my brain is so rattled by the ugliness of sound that temporarily it cannot interpret the sound. I can hear what's said, even mimic it back, but temporarily I can't understand what I heard any better than if I hear it in a foreign language.
Such hearing aids emphasis "white noise" types of sounds. The washing machine in the distance. Water running on metal and other dishes. The workings of a tv set. The car driving by outside. The breeze or wind outside the house, or worse, in the car. Except for one thing--none of these things sound like what they are. Imagine you turn an old tv to the wrong channel and you turn to one with the scattered sound of white noise. It doesn't sound real. Or imagine yourself at the beach and you hear the ocean. But your friend takes a cheap tape recording of the ocean and brings it home for you to listen to at home. It doesn't even sound like what you heard at the beach, and you never want to hear that ugly tape recording again because it's nothing like the real thing. This is what "high powered" hearing aids do to sound.
Not all, but many kinds of hearing aids have feedback--they have a whistling sound when objects get too close to them sort of like how amplifiers respond when the microphone is in the wrong place. With the hearing aids I've had for the past 20 years I haven't had to deal with that, but the new ones have terrible feedback no matter what I do. This means I can't listen with a phone up to my ear. I have to hold the phone away from my ear in some way to try and avoid causing feedback. I cannot make myself live through that for the next ten years. I won't.
But that's not all. Other sounds are lost. It messes with human voices. Words are muffled--or too sharp--depending on the quality of the person's voice. I grew up asking people to repeat, and instead of understanding that volume wasn't the problem, but clarity, people would raise their voices to me, sometimes yell at me. It would often be during these times my brain would shut down and I could not interpret what people said, because my self-esteem and my soul were leveled.
Or imagine being forced into being color blind. You are no longer allowed to see the color blue. You never get to see the pretty sky. The sky has turned completely white and you can no longer make out clouds. There is no blue to make green, and the grass and trees look black. You can no longer see blue or green eyes. Wine shades of red look brown or orange. Even your favorite color, purple is gone to brown or some other strange shade. The wrong kind of hearing aids create a similar kind of assault on aural senses. It is devastating. Even with the visual experience I just described, I would think it would be better even to be blind than to see like that, knowing what you've lost.
I grew up mortified and ashamed at not being able to understand people, therefore I could not join in with them. Even in a room full of people I was always alone and isolated. Especially in a room full of people. There were too many competing sounds, and because everything was either too sharp or too muffled, all of it was a constant assault on my senses. All I wanted to do was get away and find some peace. I wanted so much to be a part of other people's lives and have friends, but I couldn't do it because what my hearing aids did to my senses and my brain was more pain than I could bear. The pain was both physical and emotional.
I suffered frequent headaches growing up. I knew it was my hearing aids, but there were times when it was thought it might be the weight of my hair and I had it cut short many times. When I later changed the type of hearing aids that didn't hurt me like this I discovered that I rarely got headaches. But growing up, the headaches would be so severe that sometimes I vomited. My hearing aids were giving me migraines.
Mom used to get frustrated with me because I would take off both hearing aids as soon as I got home from school, and would lay on the floor in front of the tv in order to hear it on my terms. I'd leave the hearing aids lay on the floor right in front of me. I had always wished someone would step on them so that I didn't have to wear them anymore.
What strikes me is the dialogue of audiologist and hearing aid makers who would label people like me as "resistant". My "resistance" to hearing aids as a child is what every hard of hearing child goes through. Then, there are aging people who wear hearing aids for the first time who are also "resistant". They are given "powerful" hearing aids that attempt to bring their hearing into the 100% range. But if all these people hear what I heard for 15 years, it's no wonder they put their hearing aids in a drawer somewhere to be forgotten, much to the dismay of their family members. No one, not even hearing aid designers, understand the breathtaking ugliness and distortion of sound created by these instruments of torture.
My behavior growing up was socially inappropriate. Because I could not understand at least half of what was said due to the ugly distortion of sound, I had to "fill in the blanks" in conversation. I always got things wrong, and people always laugh at my errors, and I always felt ashamed for being so stupid. Then I was always paranoid that people were saying mean things to or about me because of that shame. I responded to people in a defensive and paranoid way, and because of it, I understandably had few friends. Grade school classmates could not understand the weirdness of my social ineptness, and I ended up being the target for teasing, rejection, and sometimes bullying. They weren't bad kids. They didn't understand me, and I didn't understand me.
There was one thing I loved growing up, and I wanted so much to engage it: Music. I wanted to sing, to learn how to play piano and other instruments. I got that chance to play some instruments going into high school. I often practiced without my hearing aids--because that sound was natural. I'd wear a really good pair of headphones to my stereo without my hearing aids. I hated the way the stereo sounded open in the room. I'd spend hours on the floor next to my stereo dreaming, or staring at the ceiling, just listening to music. I remember I used to have dreams hearing the most beautiful music I'd ever "heard"--nothing my ears ever knew--and I wanted to become a music major so that I could somehow learn to capture that music. Often it was piano music. Yet, it was unearthly. Years later I discovered New Age music which sounded a lot like it.
I think I was a fat child because of the hearing aids, for several reasons. My mother was overly protective of me because of my deficit. To this day my brother jokes about my being the family prisoner when I grew up. I never went out of the house. There was never anything fun for me to do because I was always isolated. The only thing I had to break the monotony of sitting in the house all the time was eat. I was chronically bored. For many years. There is a part of me that understands prisoners who live in solitary confinement. There's a part of me that knows what that feels like.
The other way that my aids affected my weight was that any exercise I got made me sweat. Naturally. It's the way things are supposed to be. But sweating shorted out my behind the ear hearing aids and I could not hear out of them for several hours afterward. I was ashamed to say anything about it. Instead, I endured frustrated teachers verbally assaulting me for not listening, for not paying attention, for giving stupid responses. I constantly got D's in my afternoon classes because my hearing aids had shorted and I could not hear for a few hours. I was so academically and socially stupid, and my one most important wish was to be smart. All of the girls got higher grades than I did, and most of the boys, too. My work and tests were filled with red marks. The only thing I could do was read. I loved to read because I could understand written conversation, and at least in my own mind I was not alone when I was in the presence of words. It was then that I developed a love for books--and like Thomas Jefferson, even today I cannot live without books.
I was well into my late 30's before I learned I have an IQ of 142. What an irony to have endured epithets of stupidity only to discover I had what I wanted so badly all along. I was dumb because of the distortion of sound.
I endured frustrated classmates who never wanted to play with me not only because of my socially inappropriate behavior (my being sullen, scared, ashamed, defensive) but because I had gotten so little exercise I could not keep up with any of the rest of them. Out of fifteen classmates, for many years I was always the last one selected by other kids for team sports, and the entire team who ended up with me would always groan when they got me. I got so tired of this constant hurt that I was eventually able to talk the teachers into allowing me to be the scorekeeper in later years. I remember one day in either 7th or 8th grade when one of the kids came up to me during recess and asked me, "why do you always sit on the fence everyday during recess?" I was utterly speechless that this question would ever be asked, for I thought it had always been obvious. I had been exiled by the other kids for so long, and finally came to accept that isolation for so long, that this classmate had long forgotten what even he had done to me.
All of these memories resurface every time I undergo the threat of getting new hearing aids. Unless the sound of new hearing aids is perfect the moment I first put them into my hears, I am irrationally leveled as an adult, and soon I am that child from over 30 years ago. It was not until this weekend that I realize that I am a victim of a low grade trauma from my childhood, and I don't think I'll ever find a way to be rational about this. All that old pain is just too deep.
When I turned 20, a few months after I quit being a music major, my mother took me to a new audiologist where Department of Vocational Services would pay for a new pair of hearing aids for me. Every time I got new aids I had to go through the pain of getting used to a new, but terrible sound. I sat down in front of this woman. Her name was Carol Clulee. Instead of behind the ear aids, she presented me with half canal aids. When she put them into my ears I was almost startled: All the new hearing aids did was take natural sound and simply turn up the volume to it all so that I could hear it. There were no distortions. No one's voice was muffled. My own voice did not sound like shit. I sounded normal. There were no sharp sounds that hurt my senses and my head. It was a year after I stopped being a music major, and I found myself regretting that I didn't have these hearing aids all that time as I might have continued on, but I felt by that time it was too late. Yet, Carol Clulee set me free. She got me out of prison for the first time in my life. It was a bittersweet moment when Carol put those Oticons into my ears, for as sound suddenly became its beautiful natural state as it should be, I wished I had been rescued from its twisted, ugly state 15 years sooner. Those 15 years would have been a completely different experience. She opened the gate and I began the years of work of righting the wrongs of my life. Since that time I have gone from half canal to micro-canal aids, and I never had to hear but something close to normal sounds since. Until now.
Who I am today:
I'm 45 years old. Today many people like me. Many people look to me for both friendship and help. My aim is always to help people be comfortable with themselves and to love themselves. I am not that person who collapsed into an isolated ten year old child.
I am a long time regular at the gym. I will always struggle with my weight, but for many years I have gone to the gym five or six days a week, and on remaining days I find something else to do like hiking for miles into the woods. I learned how to ski a few years ago.
I have a million hobbies. I'm a voracious reader and have a library of 1500 books. I am an amateur photographer and many of my photos have been published by other people on websites and a local news paper. I'll go to many lengths to get a good shot, whether travel a long distance or even climb over or under precarious places to catch a view. I love to write, especially about history, a subject I once hated as an afternoon class in childhood. I became a public speaker through Toastmasters, and even produced my own television show for a year as a volunteer at a local public access station. I still volunteer to help other people do their shows, and I know how to operate every piece of equipment in the station. My career is in listening. I sit and listen to all sorts of people; people with serious mental illness, people who are criminals, people who have addictions, suicidal people, people who have been traumatized, people who have disenfranchised losses, any sort of situation one can imagine.
My ears and my ability to communicate are extremely important to me. It is my whole life.
I am writing these words tonight because I am trying to make sense of the problem I and other people have had with hearing aids, and why these problems ought not continue to exist. The game of Russian roulette when it's time to get new hearing aids is no less than terrifying and emotionally debilitating to me until I have the security of aids that actually do what I want them to do.
But today I am facing a serious problem. They don't make the kind of hearing aids that saved my very life anymore. I am terrified of what will happen to my future. Hearing aid companies have all gone digital, no longer making analog aids. I feel as though this is a violation of my basic human rights. It is as if I will be denied air to breathe. Digital hearing aids are strange in that they take away my right for my brain to selectively choose what I'm going to hear for myself, and they choose what sounds I will be allowed to hear. I don't want a hearing aid to choose for me what I will hear. All I want is to be able to hear sound naturally, just to turn up the volume and do nothing else. Nothing funky, no gadets, no "feedback" whistling sounds in my hearing aid when anything gets too close to them. Let me listen on the phone without doing anything special, and allow me to put the phone up close to my ear like a normal person--like how I've been able to do for pretty much the last 25 years.
Let me hear my own voice within the same normal range as normal hearing persons. I don't want to hear myself as if my ears were filled with water. I don't want to feel as if my head were in a tin can. I don't want sharp sounds that give me migraines. I'd do anything to prevent a situation that forces me to socially isolate as I did as a child.
What hearing aid companies have done to human beings is a terrible thing. All we want is to have the volume of our lives turned up, and to hear sounds naturally. We don't want gimmicks. We don't want parts of sound manipulated to stand out, and other sounds suppressed. Normal people don't hear that way.
With all the technology that exists to make audio electronics and programs sound beautiful and as natural a possible, like Bose speakers, live instruments, movies, one would think the makers of audiology devices would cease to create items that sentence human individuals to decades of living in a muffled tin can.
I think it's a travesty that most adults who wear hearing aids for the first time end up having to leave them on a table or a drawer, especially after a loss of thousands of dollars. It occurred to me that many hearing aids are one of the biggest hidden rip-offs people suffer through. If people have to hear like that, it is no wonder they can't force themselves into hearing like that. It's inhumane. I think some hearing aid designers should be shut down and forced out of business. There are others who have a clue. It is devastating that I no longer have access to analog, where my own brain would be allowed to do the work of selecting what I will hear.
I feel like I'm dealing with a basic human rights issue. And I want to solve this problem. I am hoping that by starting this blog I will find a way. I am hoping to reach out to others like myself, and maybe even change things for real.
