Breaking Down Generalized Assumptions About Hearing Loss

With a week until SIGNS OF ATTRACTION releases (insert me dancing around and breathing into a paper bag) I’ve begun to notice a few interesting things about writing about hearing loss, namely something I’ve known my whole life.

Hearing loss is one of those things that people think they know about, but in reality they know the generalized incorrect information that floats around. Part of the reason why I write what I write, beyond utilizing my own ears and life experiences.

So, let me break some of it down for you:

  • I do not use hearing impaired in my novel, except in reference to negativity. Because hearing impaired, for those of us in the Deaf Community, is a negative term. It is not a term that encompasses all types of hearing loss. It’s negative. I am not impaired, I am not less then, I am different.
  • On the flip, some people (and some other countries) with a hearing loss do consider themselves hearing impaired. That’s their term and they are free to use whatever they want to self-identify. If you do not have a hearing loss, please refrain from using this term unless someone with a hearing loss uses it first.
  • Hard of hearing vs deaf: A person who is hard of hearing has some usable hearing and usually benefits from hearing aids and is able to communicate to some extent with the hearing world. A person who is deaf has no usable hearing, and while they may get some environmental sounds, are not able to communicate easily.
  • Deaf vs deaf (as well as Hard of Hearing vs hard of hearing): Capitalization is a cultural indicator. I am Hard of Hearing, because it is a part of my identity, but I was born hard of hearing, because this is my disability. You’ll notice in my book that Carli and Reed use these terms differently because of where they each are with their own identities.
  • Hearing aids, as I’ve mentioned in my vlog, are not corrective tools. They amplify sounds, make things louder. They don’t make me hearing, and they don’t make Carli hearing. The worse a hearing loss is, the more distorted the sound and less voice recognition is received. I don’t listen for comprehension with my deaf ear, there are certain sounds I can’t hear, even with hearing aids.
  • ASL is a full language. While some people can write in ASL, most ASL users use English for writing and reading. ASL does have a different grammar structure than English, it’s not Signed English (which is another debate I could go into, but it has nothing to do with my novel).

And that’s it for now! I may make another post later on, but until then, pre-order my book, there’s lots of goodies in there about hearing loss, and some amazing characters to meet!

The Story of My Hearing Loss: Part Five

I’ve been meaning to continue this story for a while now, but each time I open a document to type, I blanked. Mainly because the next few years aren’t very interesting.

After the accident, my hearing stabilized. I continued on my way as a child with a hearing loss alone in a hearing school. I had no support services, sans my mother’s advocacy. I was teased and picked on for my hearing loss, my hearing aids, my need for preferential treatment. I had my friends and yet I often felt left out and lost when I misheard or couldn’t hear.

I realize this is all very personal, another child with a hearing loss might not have the social struggles I had. I know my ears played a part, as did my personality, the other kids’ personalities, and the whole mess of complicated childhood issues.

In middle school I was finally connected with an advocate. Now, at that point I didn’t notice what I was missing. I studied with my friends, who happened to be in the top 10% of our class. I learned from them what I missed from the teachers. Therefore I felt less smart than them, when in reality I could handle my own.

With the assistance of the advocate a few things happened. One, I matched my schedule with that of my best friend (future valedictorian and Harvard Law graduate) so I could always get help from her notes. The school also provided me with an FM System.

Simply put, an FM System consists of a chunky hearing aid that has multiple controls, including hooking up to a microphone a teacher wore. Even though my peers knew I had a hearing loss, this was more cumbersome. The hearing aids weren’t comfortable and I had to get each teacher to place a microphone on them. Sometimes shirts brushed against the microphones creating an uncomfortable sound.

It also had its perks. During tests I heard all the hints the teacher whispered to my peers. If the teacher stepped outside, sometimes I heard what was being said. An FM System can be fun, but it required I be comfortable with the attention, and the teachers be willing to work with me and my device.

I’ve struggled with some pretty unusual situations as well: my school installed a motion sensor to save on electricity. Said motion sensor interacted with my hearing aids, giving me nothing but static. I had to go into the school after hours, with my mom and a stethoscope tool so she could hear through my aids, in order to prove I was telling the truth. Once Mom got on board they turned off the motion sensors for me.

Advocacy. It’s not something I was aware of as a child. But my ears require me to be my own advocate. They required my mother to be my advocate. At times, that’s also called social suicide. Because we all know: it’s not easy being different.

Part 4

Adjusting to New Hearing Aids: Part III

Click here for Part I and Part II

About a week after getting my new hearing aids I scheduled my first checkup. The blocked sensation in my left aid had increased, to the point where I struggled to hear a customer at work.

I made my mental list of changes, and realized I had only three: the blocked sensation, the tinny sound, and the feedback (whistling) from using the phone. When I met with my audiologist I explained all of these. My right ear remained happy, the left picky.

My audiologist hooked me back up to her computer system and we answered a series of questions to adjust the blocked sensation. We called it a muffling, which I’m still not 100% sure it was, however it fixed the problem. She adjusted a level, clicking it up three notches. Immediately I noticed a change. Sounds were crisp, but there was now a stronger background noise. I had the level dropped down one.

The tinny sound was settled by fixing the cap on how much sound my hearing aids allow.

The feedback we didn’t go into the system for. I was given a little foam cut out to place over the phone, thereby keeping my hearing aid away from the phone and reducing the feedback. I was hesitant, but figured it couldn’t hurt to try.

When I got to my car the blocked sensation returned. It comes and goes but is better than before. And I think I figured it out: my hearing aids are designed to communicate. My hearing aids decide whether I’m listening with my right or my left ear. It’s made to reduce unwanted sounds and help simulate a more natural listening experience. Great in theory. In reality? A device doesn’t know what my needs are.

My theory is this: I’m getting the blocked feeling when my hearing aids decide to quiet my left ear and listen with my right. I have no idea if I am right or wrong. This is a theory. And as the days go by, I’m thinking of the blocked sensation less and less. So either I’m finally getting used to my new hearing aids, or the adjustment took a little bit of time. (Or my hearing aids are reading my mind and altering accordingly.)

The feedback while on the phone? That’s not getting better. The foam device does help some, but I still have to hold the phone away from my ear. All phones. It’s not comfortable talking on any and I’m not about to get foam for every phone I need. So that’s still on my list.

I had my first battery change with my left ear, one week after I got my new hearing aids. Normal range for battery changes are one to two weeks. My old left hearing aid was running about a week, because it was old. I’m surprised this one needed to be changed so quickly. Typically, my right aid should go through more batteries, because it’s a stronger aid. That’s not the case. I’m getting about a week and half with my right. I plan to bring this up with my audiologist, just to verify it’s normal, rather than let any potential problems grow into bigger ones.

In the meanwhile, I’m continuing as I am. I’ll wait another week or so to schedule a checkup, especially as I know my audiologist is on vacation. Overall at this point I am happy with my aids.

Another person may take longer or shorter to adjust. Each experience is not the same, and should not be an exact copy of mine. I hope those reading are willing to give their hearing aids a chance. It takes time, and patience, and some back and forth. It won’t be perfect but it can help.

I’ve got at least one more trip until I get the tweaking stage settled. And if that doesn’t handle all my concerns I’ll schedule another visit. Adjusting to new hearing aids is a process. Without going through this process the maximum benefit of the aids cannot be achieved.

Adjusting to New Hearing Aids: Part II

Click Here For Part I

While talking with my audiologist, I learned new hearing aids have levels on them up to four. I’m not clear on what these levels are, just that they are there. And the hearing aid industry pushes for level four. My audiologist—and I love her so—doesn’t believe in the four and set mine at level two.

Level two is loud. As in I turned down my car radio to the point where my son had to tell me to turn it up. I don’t even want to consider what level four would be! For some reason everyone thinks we need it to be loud, loud, loud!

No, no, no! When I put in a hearing aid my aid decides what I hear. Not me. It will pick up something dropping to the ground over the person I’m talking to. It will pick up the music in the background more than what I’m trying to focus on. It will pick up person B when I’m listening to person A. I’m using hearing aids to function. Yes, I love music. But I’ll listen to music with my hearing aids off. When I have my aids on I want to understand my son, listen to the television, and be alerted to important environmental sounds. I don’t need to hear a mechanical clanking from my keyboard.

And yes, I’m hearing my keyboard. And as a writer, I type a lot. I’m used to typing being this quiet thing. But now all I hear is “click, click, clack” in a high pitch. It was cool for the first ten minutes, now it’s annoying and I’ve removed my hearing aids specifically for quiet writing time.

There’s another point: people with hearing loss know quiet. We enjoy quiet. It’s nice and cozy to us. I have never been hearing. I don’t know what sounds are truly like. All I know is the mechanical sounds filtered through my hearing aids. Make no mistake: hearing aids don’t correct hearing. They amplify with mechanical sounds. I don’t hear what you do. I will never hear what you do. And frankly, I’m okay with that.

So the thought that the hearing aid industry is pushing loudness makes me shudder. So many people who are needing hearing aids the first time struggle. Making the sound uncomfortable will just make it worse. No one wants to spend thousands of dollars on a device(s) they don’t use. But it happens all the time.

Back to me, Ms. Experienced getting her latest aids. From the time I sat in the audiologist’s office, I knew my left ear felt blocked. We tweaked a few levels but at this point I knew it might be me adjust to the hearing aid. The tinny sound remained. These are not things I fixed while with my audiologist.

Adjusting to hearing aids take time. I always tell people to give it two weeks. Wear the hearing aids. Study the sounds. Figure out what works and what doesn’t. With my previous set of aids I had trouble listening to Bon Jovi, my favorite band. When his voice got high and shrill, I closed my eyes from pain. But John doesn’t have a high voice, so I had to continue listening to make sure I knew what wasn’t working.

Therefore I left my audiologist with plans to call her once I figured out what needed tweaking. I got to work and discovered that my left hearing aid was reacting to one of the phones. This phone is portable with a flat surface, so the flat surface is pressed up against my ear. This phone is also quiet for me, so I have to hold it close. Only holding it close had my hearing aid whistling. I have to hold the phone away from my ear.

Mental note: I need that fixed.

When I went to take off my hearing aids that night I had to adjust my routine. My old right hearing aid had the ability to turn the hearing aid off before removing it from the ear, thus saving me the whistling the process demands. My new ones don’t. I tried popping the battery door open, but the position is different and is not easily accessible.

My left hearing aid, I discovered, is smaller than my old ones. I have young hands, no arthritis. I almost dropped it. Hearing aids are wet and messy and coated with wax when they are removed. My tiny little aid slipped in my hands as I tried to clean it off before setting it in a dehumidifying container for the night.

I’m getting used to the slippery hearing aid. But the blocked sensation in my left ear lingers. And some sounds are not right, but I’m not sure exactly what, beyond “tinny.” I know things that crinkle, like paper or foil, are not comfortable to listen to.

On the plus, I’m having a much easier transition than some of my friends. And I think the level two has a lot to do with that. I can’t imagine a higher level. I’m understanding my young son better. And as far as I’m concerned, that’s what I need out of a hearing aid.

Click here for Part III

Adjusting to New Hearing Aids: Part I

I wanted to make this post for two reasons, the first to help anyone getting hearing aids for the first time and give them something realistic to reference. The second for anyone who’s interested in knowing what it’s like to wear hearing aids.

New hearing aids are a process, even for someone who’s worn them for almost three decades. I’ve worn and adjusted to many different types. Different hearing losses respond differently to hearing aids and technology. For the record, I have a mild loss in my left ear, and am (now) moderate to profound in my right. Simply put: I listen with my left, always have, always will.

I wear two different types of hearing aids, an in-the-ear for my left, and a behind-the-ear for my right. My decision to do this has nothing to do with appearance, but rather to do with sound. For my left ear I wanted the sound to come from the entrance of my ear, rather than from behind my ear. It makes it easier to talk on the phone and allows the sound to be a little more natural. It’s also more comfortable when I’m wearing my glasses and a headband.

My right ear I have no choice. Because of my hearing loss I can only benefit from the behind-the-ear model. This has never bothered me. I started off wearing two behind-the-ears. And since I talk on the phone with my left ear only, this is what works best for me.

Getting new hearing aids is a process. I know this, I’m aware of this. I’ve been through the drill many times before. My old hearing aids were nine years old, with the way technology advances these days, I had a lot to adjust to.

First things first: I wanted fun new hearing aids. I had no fun options for my small, in-the-ear hearing aid, but I went with color for my right. Here are my new aids:

WP_20151007_005

They are both from the same manufacturer. My left, the small gal, I could have gotten smaller, but this was already small enough. My right, on the other hand, is the most powerful aid they provide. This doesn’t surprise me at all, in fact, I found it comical how powerful an aid I needed (and the model name does include “power” in it).

When I picked up my new hearing aids we started with my left ear. I put the hearing aid in and was hooked up to my audiologist’s computer system. She adjusted the aid to my audiogram, then we talked and I let her know what sounded off so she could tweak some more. At one point I noticed an uncomfortable tinny sound. My audiologist asked if it was a high sound. It wasn’t. But I had no other words to describe it.

I did complain about some background noise, which we discovered was a fan blowing in the room. Just goes to show how much we really don’t hear, even with hearing aids. There will always be something new to my ears. And the older I get, this “something new” is harder and harder to identify and process correctly. Now it gets lumped into “sound,” at times “annoying sound,” and the only thing I can do is turn my hearing aid off to avoid it.

Once my left ear was set, we put in my right hearing aid. The very first thing we did with each ear was a feedback test, a series of beeps getting higher and higher as the hearing aid and program communicated. My right ear is profound in high sounds, and I expected this testing to be quieter than in my left ear. I was wrong. This told me immediately just how powerful my new “power” hearing aid was.

(Side note before anyone gets emotional: I don’t care about hearing. Truly. Honestly. I don’t want to better my hearing. But I do function in the hearing world most of the time, so it is important for me to hear. While it’s fascinating how much sound my right is able to receive, I would be perfectly happy with the previous level of sound I had.)

Click here for Part II

The Representation of Hearing Aids

I’m in the process of getting new hearing aids. My current aids are about nine years old, which is pretty OMG ancient as far as hearing aids go. Seeing as I’m comfortable with my hearing loss, I wanted to get some colors and have been hemming and hawing over what to choose.

Originally I chose black, nice and sleek. But black against black hair…it would be hidden. I don’t want to hide my hearing aids. Quite the opposite. I want them visible so people understand why I don’t always respond (or respond appropriately) to spoken words.

I went to the website to check out the colors. As I clicked around I noticed something: all the human models were a good twenty years older than me and considered senior citizens. Every. Single. One.*

(For the record, they were white, affluent looking, so ageism is clearly not the only problem here.)

Now, I understand most people with hearing loss are older and suffer from late onset loss. I get that, truly I do. But I’ve worn hearing aids since I was six years old, I’m getting close to three decades with the devices. And considering most last about five years on average (hence my current ancient ones), I’ve had quite a few in my time, and will continue to have quite a few.

So let’s throw me into the equation: I’m looking up hearing aids, checking out the cool colors they finally, finally, have, and struggling to find my color of choice since they don’t have purple (side note: we need purple!). And then I check out the models, the people that are supposed to represent me: fail.

What about me back when I was six? Because this has always been my problem: my supposed role models were elders. Not younger people with hearing loss. In fact, the representation of hearing loss is so vastly focused on the elderly, us youngins get very little notice. And by the time I am old enough to fit the demographic I still won’t be part of the demographic due to my lifelong hearing loss and use of hearing aids.

Back to the representation on a popular hearing aid manufacturers site. I would fully expect many of the pictures to be of older models. This is the main demographic and where the money is coming from. I get it, make it look sexy for the person who would much rather say “what” and blame others for not talking loud enough. But what’s the harm in having a picture or two of someone younger? Be it a kid or a young adult? What’s the harm in showing a bright blue hearing aid on someone young, smiling, proud to wear aids?

Because it’s not out there. I’ll gladly take a picture of my blue hearing aid once I get it, but I’m not a model. We need to change how we view hearing loss in general and take the stigma out of it. So another little girl like me is able to be proud of her hearing aids. So another young adult dealing with loss doesn’t feel alienated and older than s/he should be.

Bottom line: THERE IS NOTHING WRONG WITH HEARING LOSS. Sure, it poses some communication issues, but it can be worked around. The more positive information that is out there, the more we can help comfort those stepping into our world.

It’s not about a microscopic aid for an older person who doesn’t want to admit to hearing loss. It’s about needing all different kinds of aids and being comfortable with them. My blue hearing aid heading my way? That is the largest and most powerful option, because that is what my ear needs. My other ear could wear those tiny hearing aids. I don’t want it. I’m comfortable with bigger sizes. Size isn’t an issue, getting the sound I need is.

And, having a little fun with it while I’m at it. I’ve always joked I need hearing aids with red flashing lights, because no one expects a young female to have a hearing loss. One day, that will change, but my history will not.

Take a look at my bio picture. That’s me. I may have taken off my glasses for the shoot, but both hearing aids are in my ears. And if I liked my hair up that day, I would have shown them off for all to see.

*Note: I went back after I wrote this and did a more thorough exploration of the pictures on the site. There is a kids section, with one child with a hearing aid. There is also a model younger than the two I mention, but still representing an older demographic. The only picture of any sort of color was a link to someplace else. The fact that I had to search for other kinds of representation is a red flag, the diversity should be front and center for all to see.

Where My Imperfect Ears Have Taken Me

I have a disability. I don’t consider myself disabled. To me, my disability is my identity, a positive part of who I am. This is a very foreign concept to most people. You couldn’t pay me to change my ears, to become hearing.

To many I’m pitied. How can I be happy to have a hearing loss? I stumble over how to explain this, how to show this. Really, how does one show they are comfortable in their own skin? Just by being themselves.

How about a listing of positive parts of my life that came to be because of my ears:

  • My acceptance to college: I went to a college for younger scholars. Halfway through my interview I mentioned my hearing loss. My interviewer was impressed, having had no clue I struggled to hear. This is how I went from my sophomore year of high school directly to my freshman year of college.
  • My journey into Social Work: I graduated with a degree in Deaf Studies and began searching for a job with individuals with a hearing loss. I stumbled across social work and my next two jobs were based, in part, on my own ears.
  • My bridal party: Out of the two ladies who stood with me when I got married, I could hear the most. Some of my best friends have hearing loss, people I wouldn’t have met with “normal” ears.
  • My writing: I made a promise to myself years ago that all my novels would have at least one character with a hearing loss, and I’ve held up my end of that promise so far, with no desire to go against the grain. This lends a unique attribute to my writing and has become my niche.

Have my ears made my life more difficult? Definitely. Am I stronger because of those struggles? Hell yes. Would I change my ears if I had the power to do so? No. I’m perfect with my imperfection.

Hearing Loss, Hearing Aids, and Swimming

As a kid, I loved going to the pool or the beach. I remember having a blast at water parks. Hearing aids are not water proof, so each time I went the hearing aids stayed at home or locked up some place dry.

My hearing for my childhood was mild/moderate. So I heard less without my hearing aids on, but I was still able to communicate in spoken English.

As an adult, however, things have changed. I feel hesitant going to the pool or the beach with my son and I struggle to communicate in spoken words at these locations more than I remembered. I chalked it up to the loss of innocence and being more aware of things. The addition of wearing glasses and not always wearing my contacts helped.

A few weeks ago a light bulb flashed over my head. I suddenly realized why I no longer enjoyed water like I used to. While my left ear still has a mild hearing loss, my right ear is now moderate to profound. Without my hearing aid on I don’t hear spoken English unless it’s really loud. Even then the sound is off, consonants missing. I listen with my left ear and, in many ways, always have.

So the reason I don’t enjoy the beach and pool like I used to is because my hearing is different. My good ear remains the same, but the change in my bad ear is enough to force me to struggle. My family and friends understand, but a stranger? Forget it. And even though I’m comfortable with my hearing loss, it doesn’t also flow in a conversation.

I know ASL, but at home I speak most of the time. I’ve known my husband since before I knew ASL, so it’s natural for us to communicate in English. He took a few ASL classes for me, and we’ve tried to implement SimCom (simultaneous communication in both languages) at home. But English is the language I use on instinct and since I understand him most of the time, our attempts slid away.

When my son was born I was determined to make him bilingual. First problem: my son is hearing. I have a tendency to sign to those who need it, not just because. But I tried with him. Second problem: he doesn’t hold eye contact well. It’s hard to sign to someone who isn’t paying attention. To be fair, he did pick up some ASL. He counts in ASL, he knows the alphabet, and he signed a few words before his English picked up. He’ll sign “please” to butter me up with an angelic face. So even though I had the best intentions, I stopped signing.

The only person I can blame is myself. A social worker by nature, I put others communication needs before mine. I match my communication style to those I talk with. I don’t put what I need first. And because I don’t put my own needs first, because I fall back on what is easy and simple, I can’t go to the beach and switch to ASL with my family.

My fault.

I’m trying to change my ways, force my hands to move more at home, expose my son to signs again and hope my family will follow suit. I haven’t mentioned this to my husband yet, so I hope he a) will see what I’m doing and b) read this and understand where I’m coming from.

English is my native language. I’m comfortable communicating in spoken language. But it comes with its own trial and tribulations. I’ve spent my life dependent on my left ear. In the back of my mind, I’ve had a little voice whispering, “What happens when it changes?” My hearing loss is stable, everything that has happened to my right ear stems back to surgery and blows to the head (I’ve fainted a few times, I don’t recommend it). Yet older adults can have late onset hearing loss and I suspect I’m not immune, even if I’m already used to it.

Instead of being frustrated and not enjoying the times when my hearing aids are off, I need to make changes. I need to sign more often. I need to push past the ease of English, when I like to talk a mile a minute, and slow down enough so my hands can follow. Above all, I need to put my communication needs first. It won’t be easy, I’m sure there will be ups and downs until new habits are formed. But if I don’t make those changes I’ll continue to find myself in situations where my hearing loss frustrates me. And as an ASL user this shouldn’t happen.

The Story of My Hearing Loss: Part 4—The Accident

A year after my surgery (click here for the story) an event occurred that changed my hearing permanently.

It was the first day of third grade. A nice, warm, sunny day. At recess I ran around with my friends, being a normal, typical, kid. For reasons I don’t remember, I stopped short and turned my head. A friend was right behind me and we collided, her nose pushed my hearing aid into my ear. I don’t remember pain, however the force of the impact caused my ear to bleed.

Needless to say, I ended up at the nurse’s office. She called my mom and sent me back to class. I walked down the squeaky clean and empty corridor to my classroom and drip, drip, drip. Tiny drops of blood landed on the off-white linoleum from my ear. Now, I was a bit of a goody-two-shoes. I tilted my head, to keep the blood inside (remember, I was a third grader) and walked the rest of the way to my classroom, head cocked, to ask if I could go back to the nurse’s office.

Of course, I was given permission. My mom was called and took me home. I don’t know if I went to my primary doctor or my ENT right away. What I do know is the next time my hearing was tested my hearing had gone down.

Way down, but I didn’t know this at the time.

My hearing was tested every six months at that point, as the doctors tried to establish if the change in hearing would continue. It didn’t. That surgery? Null and void. My right ear was now worse than when I was born.

Again, no one talked numbers to me. I only knew my right ear had gotten worse. My hearing aids were adjusted, my tinnitus continued. I can’t stress enough how normal everything was to me. This was me, this was my ear. Maybe more was explained and I just didn’t care. Because this was me, this was my ear. It wasn’t changing and I never for one minute believed it would change to become more hearing. My left ear was the good ear. I listened with my left. End of story.

I was nineteen when I finally began to understand all that had happened to my hearing. This wasn’t a small change. Yet it didn’t matter. Sometimes a number on a chart is just a number.

In retrospect would I opt for the surgery again? I don’t know. The surgery wasn’t necessary. It didn’t help my hearing. And more importantly: I didn’t want my hearing fixed, not at that point in my life. What the surgery has done for me is taught me about hearing loss. The changes in my right ear (yes, there’s more to come) have allowed me to understand loss. Without the surgery, I would have been someone with a mild/moderate hearing loss. It wouldn’t have affected me as much as it does today.

Furthermore I wouldn’t be able to relate to others the same way, as my hearing would have been stable from birth to now. The bumps along the road, in regards to my hearing loss, have been an incredible learning tool for me. While I have, at some points in my life, wished to be hearing, the vast majority I’ve spent enjoying myself. As is.

Part 1
Part 2
Part 3