If I Had a Dollar

Still not funny to me.

If I had a dollar for every person who said, "You don't sound deaf" to me, I'd be in a financially sound position whereby I could enjoy an early retirement without having to change my champagne tastes.

In pondering this all-to-common occurrence, I am astonished at the number of people who would expect that just because I have profound deafness, that my half century as a "normal" hearing person would be negated as suddenly as my hearing loss, or that my speech would even be affected.

It's an interesting, if perplexing, commentary on our perception of what a "deaf" person should sound like. Or act like. I think the television and movie industry have done a great injustice in perpetuating the less-than-favorable stereotypes of deaf people. And it's even more interesting to me since I've learned that many people with hearing loss are actually late-deafened, like me, and don't fit this stereotype of what we think a deaf person should be at all. Not all of us can sign, or read lips. And most of us have no problems with articulation. We don't "sound deaf."

I have secretly begun to respond to comments like these in my mind... Well, I was going to stop off in the phone booth and don my blue tights, red cape, and super D (for deaf) shirt before I came over, but I was running a little late because of the traffic. You know, I only sound deaf when I'm wearing my superhero costume. The rest of the time, I'm incognito as a normal-hearing person.

Of course, before my hearing loss, I, too, carried the same stereotypes of people with hearing loss deep inside the recesses of my own cultural ignorance.

I didn't have a clue.

When I lost my hearing, I worried about so many things unknown to me. I worried that I would forget what things sound like, or that I would somehow forget how to talk, or that my perception of what "normal" speech sounds like would dissipate and I would regress into sounding "deaf." I worried that my hearing aids would be a visible sign of my aged and decrepit incompetence, and I was fearful that when people knew of my hearing loss, I would become a victim of ageism. I cried when I saw pictures of people wearing cochlear implants because I didn't want to look deaf, and I was fearful and overly sensitive of comments and jokes about getting old and going deaf. I worried that, in the eyes of those around me, my hearing loss would be equated with a loss of intelligence, and I would be relegated to a drooling fool.  I even put the question to my audie. "Will I still be able to talk?" (Hear the angst in my voice?)

She choked back a giggle, much like I do when my first graders say something cute and endearing. Then she reassured me that "at my age" I wouldn't have any speech regression. "You know how to form sounds and words and your knowledge of semantics and syntax are fully developed and ingrained in your speech," she patiently explained. "It won't change."

Whew. In all the things lost with my hearing, at least my speech will remain the same. The problem is that I remember all too well how things sound. And I miss the sounds I can no longer hear.

But I found that my perceptions of the deaf and hard-of-hearing have changed. Those I have met are multi-aged and they are multi-faceted. I am learning to look and hear beyond the stereotype I had formed before I knew better. And I hope that in some simple way, I am helping others to do the same.

It's a daunting task.

So this afternoon, after hearing my dermatologist ask about how things were going with my hearing loss, his nurse said to me, "I would've never guessed that you had any hearing loss. You don't act any different than anyone else" I quietly smiled and secretly calculated another dollar into my early retirement fund. Ka-ching... Maybe I should open another bank account.

Didn't You Hear Me?

"I was ringing the doorbell. I left my house key in the house. Didn't you hear me?"

No. No, I didn't.

The doorbell is in the upstairs hallway. It's a terrible design for a house since most of our waking time is spent in the family room, which is downstairs AND at the back of the house, far removed from the doorbell. The dishwasher was running and the TV was on. I probably would've had a difficult time hearing anyone at my door under those circumstances, even if I weren't almost deaf. But considering I wasn't wearing my hearing aids while I was having my morning coffee, hearing the doorbell has become an impossibility for me.

It was a simple question, and innocent enough in it's intention.  But, I really can't hear you. That's the reality that is so difficult to get used to for those who know me. I have lost that much hearing. I have a German Shepherd dog who does a good job of alerting me to these things when she's inside with me, but she isn't a constant companion. She likes to run in the yard -- she may need to run less and stay in the house more.

I worry a lot about whether I will be able to hear the doorbell. Or the telephone. Or the smoke alarm. Or even an intruder in my house. I am aware that there are many technological and electronic devices that I could wire my house with that would alert me when these things occur, but they are costly to purchase and install, and they tend to be rather institutional in design. Not necessarily what I want in my home decor. And I'm afraid it would serve as a constant, depressing reminder of what I will never have again.

...another thing lost along with my hearing: a certain amount of my sense of security and well-being. And my list continues to grow.

I can't hear the fire alarm at school, and I'm not sure if I am hearing the telephone or being alerted by my students that it is ringing. The intercom is difficult to hear and even harder to understand. I have no directionality, and I cannot tell from where sounds or voices are emanating. (The disorientation can be fierce at times.) I have lost much of the comprehension of my husband's speech, as well as my parents' voices over the phone, and television without captioning is a frustrating experience. I never listen to the radio or CDs. I don't even like to sing anymore. I've noticed I turn my "better" ear towards people who are talking to me now, and I am continually apologizing for asking them to repeat themselves. Last night at dinner, I finally told the waitress that I had no idea what she'd just said, so she said sympathetically, "Let me just point to it on the menu." I don't know if I was embarrassed, angry, or hurt by her response. All I know is that I didn't like how it made me feel.

"You're really sad, Mom," my daughter confided tonight. "You just shake your head and smile and say 'thank you' like you don't know what she is asking."

It's because I don't know what she's asking, I thought to myself. And it's getting harder to pretend that I do. I'm trying to be polite, but people are shaking their heads at me.

Maybe I should wear a sign on my forehead.

I Talk Too Loud

Today, a parent complained that I talk too loud.

Never mind that the 23 little charges in my classroom never, EVER stop talking, and that my classroom reaches deafening levels as children often yell out and make noises with their voices that continually interrupt instruction. Never mind that I tell these noisy, undisciplined children at least 500 times a day to stop talking and do their work. Never mind that they continue to talk, even when I am teaching. Never mind that I have to actually yell over these 23 vociferous voices to get their attention. Never mind that this continual noise level leaves me with an intense headache at the end of every day. Never mind that parents think their little darlings should be able to do whatever they want in the classroom, including ignoring classroom and school rules, with no consequences whatsoever for their behavior.

So when I raise my voice and tell my students to put their heads down so that I can regain some semblance of order in my classroom, a parent complains because their very loud and disruptive child told her that I am too loud and it hurts his ears, and he really doesn't like laying his head down so much. (Grrr. Maybe I should start complaining to the parent that her child talks loud and incessantly, and it hurts MY ears.)

Children today have very little respect for adults. And they have virtually no self-control. It didn't use to be that way.  Lest you think this 23-year career teacher lacks classroom discipline, several teachers in my building have complained to me about the same thing happening in their classrooms. One teacher approached me during dismissal this very afternoon and said she can't believe how rude the children are. "Kids weren't perfect at my old school," she said, "But they were nothing like these." I watched her tell two girls multiple times to turn around in the line and stop talking. They completely disregarded her directions.

Children's disrespectful behavior is reinforced by parents who swoop in to rescue them from the negative consequences of their behavior. They have no incentive to be better. That in itself raises my ire.

But when the parent facilitator told me that she and the administrator "handled it" by explaining to the parent that I am loud because I am hard of hearing, it negated the role of her naughty child in this scenario. I tried not to let it bother me. But I can't stop thinking about it.

It's a put down. And I feel like the sharing of my disability with a parent without my consent is not only unethical, it is completely wrong.

So, I talk too loud in my classroom. It has little to do with my hearing loss.

A Little Unbalanced

This is not me.
I was much prettier when I wore the goggles.

The VNG. Videonystagmography. (Go ahead, try saying THAT three times as quickly as you can!) It is a pre-cochlear implant surgery evaluation to determine if I may have conditions of the inner ear or central nervous system that can cause dizziness or vertigo post surgery-- a common side effect in the early days following implant surgery. The test measures involuntary movements of the eyes through infrared cameras. The cameras are in a pretty-pretty set of goggles that are worn during the test.

The test was rather harmless and didn't take as long as I had been told it would. The worst part was the "Caloric Test" where cold, then warm, air was pumped into my ears to stimulate the inner ear. It was uncomfortable and left me with an earache in my deaf ear. It didn't have much effect on my right ear. My audi said it would go away after a little while. It didn't. And it gave me a very restless sleep that night and a killer headache the next day. I didn't have any dizziness or nausea, though, which is a good sign.

I am fortunate that I haven't had any dizziness or vertigo with my hearing loss, though I had a bout with vertigo in the spring before my sudden hearing loss last August. I had to seek medical attention for it because I kept falling down. I often wonder if that wasn't a forewarning of what was to come and I just didn't realize it then.

The VNG is important, my audi said, because it confirms whether my vestibular system is working and responding, which mine seems to be doing just fine.

I will get the results from my doctor sometime next week. I expect them to be normal and hear that I have good balance -- in my vestibular system, anyway. It's not a psychological evaluation. Those results might tell a different tale... ;)

Surviving. Sort of.

The first full week of school came to a close yesterday. I. Am. Exhausted.

It has been 18 years since I taught first grade. I had forgotten how utterly exhausting first graders can be. I have to teach them EVERYTHING. They don't know how to "do school." They can't do anything on their own. Except talk. And talk they did. Excessively and loudly.

Hearing-wise, I was more prepared for teaching a classroom full of excitable little ones than last year when I was reeling from the hearing loss that had occurred two days before school started. Being more prepared mentally (and having a set of good, if not perfect hearing aids) made the week more bearable than last year, but not without problems. I can hear my students with my hearing aids, almost too well at times, and had to continually tell them to remember to use their indoor voices. First graders are loud, and they don't have the typical filters that older students have that help them self-monitor their volume. The problem that continues to plague me is hearing them well enough to understand what they are saying -- which I don't do well at all.

In regards to my hearing loss, the good thing about having first graders is that they tell stories. Lots and lots and lots of stories. Most aren't really important for me to know, thank goodness. They just want acknowledgement. So nodding and smiling and saying, "Thank you for sharing that with me" is just fine for the majority of the time I can't make heads nor tails out of what they are saying to me.

I've noticed that I've changed the way I teach. I talk a lot more now than before, which is a super powerful feat given that I always talked a lot before I lost my hearing. It makes perfect sense, and I've read that it's a phenomena that occurs quite often in people with hearing loss. If I talk more, I don't have to listen as much, and the focus is off my deafness. Talking is easy. Hearing is hard. Listening is harder.

My new classroom is carpeted and quiet, and with the door closed, it is possible to be blissfully unaware of anything that happens outside my classroom walls. An unexpected fire drill that occurred mid week threw me for a loop. I didn't hear it. The alarms are in the hallways. Thankfully, there was a lull in the noisy din of children preparing for dismissal, and one student asked if that was the fire alarm. I shushed the class and sure enough, it was. (We found out later that a naughty kindergartener had pulled the alarm.) My principal offered to have a strobe installed inside my classroom and my team leader said she would be my fire alarm buddy from now on. "I won't let you burn!" she said. In my old school, I was told I was being demanding when I asked for help during fire drills.

And my school district's audiologist brought a desktop listening device to me. I can set the microphone in the middle of my reading table to amplify the voices of the students in my small groups above the children at their desks. The small, portable speaker can be set on the bookcase behind me so that my hearing aids can pick up the sound better. The system is wireless, so I can have my principal clip the microphone on his shirt during faculty meetings so I can hear him better, too. Technology is a wonderful thing.

I am surviving. Sort of. There are things that I will never regain. I will have to adapt and change and ask for help. But I have found myself in a new school with wonderful people who want me to be successful -- a place so different from the school I left. I am happy again. And that is making all the difference in the world.

I Have a Surgery Date!

Cochlear Nucleus 6

My road to cochlear implant accelerated forward today. I received notice that my CT scan was normal and we are ready to schedule the surgery. It will be November 20.

This timeline makes it possible for me to have the latest technology from Cochlear America -- the state-of-the-art Nucleus 6 (N6) processor -- which recently received FDA approval in the US. The company plans to begin marketing the N6 on September 30. My audiologist will receive and train on the new "mapping" software in October. The nurse also said that my doctor will be taking a vacation sometime in October. Having my surgery in November when he is rested and refreshed seemed a very good idea to me! I can also piggyback my recovery time with a school holiday and save on using sick days.

I'm both excited and nervous. Excited that I will be able to "hear" out of my deaf ear and hopefully improve my speech recognition. Nervous that it's a lot of rehabilitation and hard work. And worried that I won't have good success with it. I'm a worry wart.

The diagnosing ENT doctor (the same one who referred me to my otologist) offered me a piece of really good advice. "It (your ear) is deaf. You can't hear anything out of it anyway. It can't get any worse. But, a cochlear implant could make living better." He said he'd do it in a minute if his ear was deaf. Along with my otologist and audiologist, all three of my hearing experts have recommended an implant for me. I have to trust their expertise and experience.

So, here I go. I ordered a black one.

Who's Amanda?

Learning to cope with my hearing loss has been grueling and depressing, I admit. But on occasion, it has provided moments that remind me not to take myself so seriously. Case in point:

My kitchen and family room are one great room, divided by a breakfast bar. My husband was chopping vegetables recently at the breakfast bar behind me -- I was in the family room where I sat watching television. (Now, he knows I'm not so good at understanding speech when there's a lot of background noise, like TV -- and knives -- especially when the speaker is behind me, but he persists on talking to me in that context quite a lot. It's hard to break a 30-year habit.)

"Is Amanda still mad at you?" he asked.

"Who's Amanda?" I asked back.

"What're you talking about?" he replied. "Amanda who?"

"That's what I asked. Who's Amanda and why would she be mad at me?"

"Amanda?! I wanted to know if you wanted a banana and a salad!" he laughed.

Oh. 

Usually, I'm pretty good at filling in meaning even when I don't hear or understand every spoken word.  But I must say, sometimes even I'm amused at my interpretation.

"He let his PANTS down?! What did you say?" I ask. *erupting laughter from my husband* He's laughing so hard he can't even remember what he was talking about, so I never find out what he really said.

Those of us with moderate to profound hearing loss have not only lost our hearing, we have also lost speech understanding. Our hearing aids amplify sounds, but they amplify all sounds equally. In the presence of background noise, determining words and understanding them becomes an exhausting and tedious undertaking. We can HEAR voices. It's the words that escape us.

This chart shows degrees of hearing loss, and the "speech banana" I have come to know so well. At 55 - 70 dB loss in my better ear, you can clearly see that nearly all speech evades me. 

My audie (this is what we call our audiologists) is wonderfully sympathetic and has adjusted my hearing aids a lot to try to compensate for background noise, bringing forward voice frequencies, and fine tuning my hearing aids for my needs. It helps some, but she reminds me that hearing aids can only do so much, and that speech recognition will always be difficult for me. On the up side, I'm getting much better at speech reading. That's why I prefer face-to-face conversations. I can look at your mouth. It's a little awkward, and I even had someone ask if she had spinach stuck in her teeth! When I explained that I use speech reading to help me hear better, she laughed off her embarrassment. But in the real world, face-to-face doesn't occur as often as I'd like, so I continue to err and ask people to repeat themselves. And sometimes I laugh, because what I think I hear can be really, really funny.

My husband recognizes my struggle, and we giggle about the times "I'm not part of this conversation anymore, am I?", but the frustration is real and often embarrassing.

I still don't know who Amanda is. But whatever I did to make her mad -- I'm sorry. ;)