Another Milestone to Mark

I see that while I have been away, my little blog has reached a milestone: over 10,000 views. I began this blog mostly for myself -- a way of "thinking out loud" as I dealt with my sudden deafness and severe hearing loss. It's been insightful. And cathartic. And enlightening. It helps me remember how devastating it was to me, and how oddly resilient life is.

We learn. We adapt. We change. We compromise. We survive. We live.

Tomorrow, I will mark another milestone -- it's the one year anniversary of my new hearing life. It's the day my cochlear implant was activated. I had waited for the day with bated breath and great anticipation of a hearing miracle that would give me my life back. It was a miracle; it didn't really give me anything back. It was always within me -- that resiliency to make do and move on. My mother would call it stubbornness.

Instead, activation day simply thrust me forward into a different way of living -- much the same in many ways, yet surrealistically different than before. It's not always a smooth road. But that's what makes it incredible.

It's my life. My crazy, curiously odd, hearing-loss/cochlear implant life.

Thanks for being a part of it.

What's That Whistling Noise?

It only takes a minute to remind myself that there are still many sounds that I hear with my cochlear implant that bear little likeness to the "real" sounds they make.

Take, for instance, this morning. A sound unbeknownst to me occurred repeatedly as my husband and I were watching the morning news. As the news anchors were talking, I was inundated by the most annoying, noisy whistle. I couldn't tell if it was coming from the TV, from outside, or from my husband. And I couldn't even listen to the news anymore because I became so obsessed with that damn whistle! Curiosity not only killed the cat; it got the best of me.

"What's that whistling noise?" I finally asked. (And not so calmly at this point.)

The conversation that ensued is one that is all too familiar to me since my hearing loss.

"What noise?" my husband asked innocently.
"That whistling," I said again. "What's whistling?"
"I don't hear a whistle," he said.
"There! There it is again!" I said. "What is it?"
"Oh. That's the jingle bells on TV. Santa has bells on," he explained.
"Well, isn't that irritating," I commented. "Sounds like whistling." And we laughed.

Hearing is good, but it isn't perfect. This first Christmas with a cochlear implant is interesting and new.

There are no bells - or whistles - in my house this Christmas season. That's probably a good thing.

Merry Christmas, ya'll!

Be Patient and Gentle

I've read many humorous accounts of what NOT to say to deaf people on social media lately. They are rather funny in ways that those of us with hearing loss can chuckle at because it's a part of our daily experience. Some of the things people have said to me since I lost my hearing leave me scratching my head. A lot of people just don't understand. It doesn't bother me much. Most of them have no experience with hearing loss in their own circle of family and friends. I used to be one of those people.

These reads usually leave me musing about the times I've had similar situations, but I read a rather bitter (and angry) post this morning on one of the blogs I frequent. It set me back a bit, and I restrained from commenting, though my head was swimming with things I wanted to say to the author. There are so many myths and misconceptions that surround hearing loss that it's a bit difficult to navigate through them to find the truths. Even among the hard-of-hearing "long-timers",  facts are often blurred by personal experiences, and opinions differ from one person to the next. There is also a proud and strongly assertive culture in the Deaf and Hard-of-Hearing community ready to assert those thoughts and opinions. They take their identity very seriously. And sometimes they take offense when others ask those "annoying" questions.

I straddle the fence between the worlds of hearing and hard-of-hearing. Being late-deafened at the age of 51, I clearly identify more with the hearing world than not. Even now -- two years after losing my hearing and one year after receiving my cochlear implant -- I feel little likeness with online cochlear implant friends. Most have been hard-of-hearing for the larger part of their lives, so unlike me, navigating the hearing world is second nature to them. I still feel awkward and lost much of the time. But even with my hearing aid and cochlear implant, I'm not really a "hearing" person either. So I feel a growing distance from that world, as well.

Maybe it's because I haven't lived a lifetime of hearing the same comments or answering the same questions repeatedly that keeps me more lighthearted at others' curiosity. I'm not really offended by your questions or comments when asked innocently, but know that when your curiosity gets the better of you, and you do ask me those questions I deem silly because they are blurred by myth or misconception, I am secretly giggling and adding sarcastic addenda in my head:

1. You can still drive? Yes. I know you are concerned about horns and sirens, but my car is well equipped with mirrors, and emergency vehicles have lights. I can SEE the emergency vehicles before most people can hear them over their radios and iPods. And I don't give a rat's ass about the honkers. Blind people can't drive. Deaf people can drive. It's amazing, I know. Right?!
2. You don't sound deaf. No. And I don't sound German or French or Canadian either. The speech patterns I formed and practiced for a half-century did not disappear because I cannot hear you anymore.
3. My grandpa has hearing aids! Well, isn't that special?! Are you implying that I am old?!
4. Can you hear me now? Haha! That is just too funny for me to even reply...(sigh)
5. CAN YOU HEAR ME NOW? Yeah, because screaming at me always makes it better...(another sigh)
6. Are you lip-reading me? Yes. And I'm reading your mind, too... (eye roll)
7. So you know sign language now? Yes. Because when my ears stopped working, my hands automatically kicked in. Here's one I think you'll know... (hee hee hee)

Kidding aside, there is one thing I do take great offense to -- when people assume I am rude because I don't answer their question or respond back with a return "fine, and you?"

Remember that for those of us with hearing loss, seemingly simple things, like exchanging greetings, answering questions, or even conversing in noisy environments, are extremely difficult, and often impossible. We're doing the best we can.

Be patient and gentle with others this holiday season. The Muzak, cash registers, talking customers, babies crying, children whining, squeaky shopping cart wheels, snack bar blenders, demo TVs and stereos, loud phone talkers, PA announcements, appliance fans, automatic doors, security beeps, cell phone rings, cell phone talkers, text alert signals, Salvation Army bell ringers --- they are all terribly distracting and overwhelming to our senses. Please don't judge, and don't overreact too quickly. Realize that maybe there are a lot more people out there with hearing loss than you could even know.

Now there's a misconception I hope you'll avoid.

My Cochlear Implantiversary

I cannot let this day end without taking a moment to mark this milestone date.

At this moment, one year ago, I was sleeping off the effects of four hours of anesthesia from my cochlear implant surgery. The surgery took a bit longer than expected, but otherwise, it was a mostly routine operation, according to my surgeon.

I awoke from the surgery groggy and nauseated, but the pain and dizziness were minimal. Nothing a few hours (or days) of sleep wouldn't resolve. I nuzzled up with my comfy chenille-covered travel pillow, fuzzy blankets, and pain medications in the upstairs recliner and slept in a semi-upright position until I felt well enough to move about more.

One year later, it's still quite vivid in my mind. It was that impressive. And it's been a year of pretty impressive events as I've learned to adjust and hear with my cochlear implant. It's not perfect, by any standard. But I continue to be amazed at the little and the big hearing accomplishments I have worked so hard to achieve. And I know there are many more milestones to come.

I can hear. Happy Cochlear Implantiversary to me.

People Who Whisper

There is a colleague in my school who is always bending my ear. He has so much to say. I don't know if he talks to everyone like he does to me. But he never misses the opportunity to tell me some pressing news.

The problem isn't so much that he wants to tell me things. The problem lies in the way he tells me.

He whispers in my ear.

Whispers are one of the sounds that evade my cochlear implant. It just sounds like noise in my ear. I don't know the science of whispering, or why I can't perceive them. I'm sure the answer lies somewhere in the frequencies or decibels of speech. It doesn't really matter. I just know that whispered words aren't comprehensible to me. It's that proverbial mosquito buzzing in my ear.

"I'm deaf, you know," I remind him often. But it doesn't make much difference. He continues to pull me aside and speak imperceptible words to me.

I've learned to smile and nod. Mostly out of kindness. And a little sympathy. It's not so much that he needs me to respond back, I suppose, as it is his need to just say what is on his mind. And he has found a safe venue in me for sharing his secrets.

I mean, who better to vent to than a person who is guaranteed not to share and spread those secrets beyond those whispered words? The deaf lady, of course. She never heard a word.

Alliteration

I have noticed that there is a preponderance of bloggers and writers and storytellers today. There's a plethora of blogs available online for our perusal. And for each one, there are as many reasons and purposes for why they write and for whom they write. The sheer volume of self-publishing sites and the progeny of self-proclaimed authors is a bit pretentious to this pragmatic mind of mine.

As a teacher and specialist of reading and language arts, I have learned to be proficient in and perceptive of our written language. I am practiced in reading and writing prose and poetry, essays that teach and inform, stories that entertain, and even the pith of self-reflection.  I dare not pretend that my writing is perfect, nor am I presumptuous that what I write is profound and proper -- or even paramount for most people.

But it is practical for my purpose. 

I am pleased that some follow my story and participate in my professed self-indulgence. I possess a bit of pride for my prowess with the written word -- my love affair with the sounds and words that make our language rich and profound.

I write for myself. I write to purge. I write to practice. I write for pretense. And patience and perseverance and peace. It is my panacea.

I write because it doesn't matter that I am deaf when the words pour from my thoughts. For the written word isn't heard in my ears. It is heard in the promise of my heart.

"STOP HUMMING!!!"

I'd had quite enough of the near constant drone of student voices while trying to finish individual sight word assessments. The noisy buzz of my busy classroom was wreaking havoc on my already frazzled patience as I had continually quieted the children over and over.

It spilled into the very important assessment time. Students were supposed to be writing "My Yesterday Story" in their journals. It wasn't to be. Several students couldn't even remain in their seats for a full minute. And the talking was both excessive and loud.

I couldn't hear the student I was testing. I 'd been interrupted too often, and I was still on the first student!

"Stop talking," I said in a loud voice. (I'm certain I'd said that at least a million times that day.)

But the utterances continued. I could see the culprit, and I stopped the assessment yet again to redirect the student, this time by name.

"Stop talking now, David!"

I continued with the assessment for less than a minute when the monotonous drone resumed.

"I don't know who's humming, but it better stop NOW!" (I think my own voice was at glass-shattering decibels.) "STOP HUMMING!"

It wasn't exactly pin-drop quiet, but it was remarkably improved. Yet the hummer continued to hum  -- softly and steadily.

It was only after I'd dismissed my students and safely put them into their parents' cars or hands that I returned to the room.  I proceeded to the table where I'd left the microphone transmitter of the FM system that I'd used while assessing students today. The district audiologist had only delivered this new FM system for me to try out the day before. The telecoil in my cochlear implant processor activated automatically when the neckloop I was wearing came back into range of the transmitter.

And there it was. The hum. And not a student to be found.

Apparently, the telecoil picks up the hum of the overhead fluorescent lighting. I didn't know.

I owe my students a big apology tomorrow. 

Seeing: An Addendum

That feeling you get when the school district's audiologist sends you an email confirming your concerns about your student -- he has severe to profound hearing loss. It's that feeling of knowing you were right all along and being thankful and happy and grateful that you took a chance -- that even if you'd been wrong, your gut had pushed you to do something to help this child. And you followed those instincts even when it meant seeking an override on a decision made about this child before you even knew him. It's that kind of feeling: a feeling that is satisfying. Deep and full. And frightful.

My heart aches only because he has lived for seven years in a world of virtual silence. Undiagnosed and misunderstood.

And he has survived.

Now, it's time he thrives.

If You Give a Girl a CI...

If you give a girl a CI, she will need rechargeable batteries to keep her processor conveniently working. So she will need a charger.

If she gets a charger, she will need an outlet to plug it into the wall near her bed. But since she has a lamp and her phone plugged in there, she will probably ask for an adapter with extra outlets to accommodate her new charger. So she will go to the store and buy an adapter.

Once she has bought an adapter and sees the extra outlets, she will want to fill it up. So she will probably move her Dry-and-Store box to her bedside so she can dry her processor and hearing aid each night without getting up from her bed.

Now that she has her Dry-and-Store box near her bed, she will notice that she cannot hear her alarm since she sleeps with her hearing devices off, and she will decide to get a Sonic Boom alarm clock with a bed shaker to wake her in the morning.

The Sonic Boom alarm clock with a bed shaker takes up too much space on her bedside table -- along with the Dry-and-Store box and battery charger, so she will need to move her lamp and cool-mist vaporizer to the floor.

When she moves her lamp to the floor, it no longer illuminates her bedside while she is reading, so she will need to get a floor lamp instead. She will steal the one out of her daughter's room and hope she doesn't notice.

Now that she can see to read again, she will probably notice that her nose is stuffy because the cool mist is too far away to help her breathe well, so she will need to move her cool-mist vaporizer back to the table.

If she moves the cool-mist vaporizer back to the table, she will have to make room by moving something off the table and onto the window sill. The Sonic Boom alarm clock with a bed shaker will fit nicely on the window sill.

When she moves the Sonic Boom alarm clock with a bed shaker to the window sill, she will notice how dusty the curtains are, and she will decide to take them down and wash them.

After the curtains are in the washing machine, she will see that the blinds are just as dirty as the curtains, and she will decide she must clean them, too. She will like the look of her windows without the curtains, so she will decide to leave them off.

If she leaves the curtains off, she will notice that she needs to vacuum the carpet behind the curtains, so she will go downstairs to get the vacuum. While she is vacuuming the carpet, she will accidentally sweep up the cord to her phone and ruin it.

Since her cord is ruined, she will need to go to the store to get a new one.

When she gets home, she will plug the new cord into her new adapter and notice that one outlet remains empty, so she will decide to recharge her CI's remote control.

Since she is recharging her remote control by her bedside table, she will need a little basket to store it in. So she will go back to the store to buy one.

While she is at the store, she will spend $55 getting other things she needs, too.

When she is putting away the other things she bought, she will notice the space between her table and the wall, and she will begin to think how nice it would be to have a bigger table.

But if she gets a bigger table, she will want to get more stuff to fill it up.

And if she fills it up with more stuff, she will need another adapter to plug them all in!

Seeing

"Everything happens for a reason. Sometimes good things need to fall apart before better things can fall together."

I really, really, really hate this sentiment. It seems like a cliche phrase that attempts to make people who experience misfortune feel better about their unfortunate circumstance. I don't believe that everything happens for a reason. Sometimes things just happen.

I have searched long and hard for that proverbial "silver lining" in my sudden hearing loss.

• I sleep through thunderstorms. I sleep through pretty much everything now. That can be good. Unless you cannot hear the tornado sirens because you are sleeping so soundly without your hearing devices.
• I can take a hearing break anytime the noisy humdrum of the world becomes too much. Discreetly turning the volume of my cochlear implant down to one or slipping the magnet completely off my head are two of my secret guilts. I can turn the world off if I want to.
• I can even admit that I've purposely ignored the call of my name from the end of the school corridor when I was busily attending to tasks that needed my attention more -- pretty certain that the caller dismisses it because I have a hearing loss.

Honestly, though, these things aren't a silver lining. They are merely consequences of my hearing loss. And consequences can be good, as well as bad. Sometimes, I'm acutely aware of how my hearing loss affects my perception of events and my decisions and actions. And I believe that at times, I may be appointed by a higher power to be in a certain place and time.

I found such an appointment recently while working with a child in my first grade classroom. He came to me from a kindergarten classroom where he had spent two years. His kindergarten teacher had referred him for psychological testing for a learning disability. One of the concerns listed on his paperwork was his poor listening ability and inability to follow simple directions. Because he came from a Spanish-speaking family, his learning problems were attributed to his lack of English understanding. It didn't take me long to notice that he didn't speak in Spanish, either. Clearly, this child was nonverbal in either language. This raised all sorts of red flags for me. I spoke to his father and learned that he had been born prematurely and had a lot of problems at birth. His father confirmed my observation that his son's learning problems were not related to his English learning because he couldn't communicate in Spanish either.

I began to notice that there were distinct patterns in this child's communication. Having taken a beginning sign language class, I had incorporated simple hand signs for bathroom, water, and teacher help in my classroom. He readily learned and used them. While reading, he watched my mouth instead of the printed words, even when I turned his head to the book. He responded to directions when he faced me, but if I was behind him, he was unresponsive. He didn't respond to calls to move from place to place in the classroom or to change activities. He missed verbal cues, but he could follow visual cues. He mimicked speech, but didn't produce his own words. I believed his learning problems were not cognitive. I believed he wasn't learning because he couldn't hear.

The defining moment occurred when I expressed my concern to his speech-language therapist that he might have a hearing loss. She said that she had suspected the same thing, but that he had passed his hearing screening. She told me that he was doing a lot better, however, and proceeded to have him repeat words she spoke, which he did very well. But I told her I believed he was speech-reading her, and I went behind him and repeated the same words she said, "Say, 'apple.'" Nothing. "Say, 'yellow.'" Nothing. Again.

Since this time, we have been able to contact our school district's audiologist and express our concern about this child's hearing. We have requested a full hearing evaluation. I am anxiously awaiting the appointment.

Some people are calling me a hero. "You saved that boy's life," they say. They are saying I noticed because I am deaf, and I am more aware of hearing problems. "Why, of course the deaf lady would notice a hearing problem." Some say it's the reason for my hearing loss. The "better thing" that has come from my misfortune. They say it's God's hand. My silver lining. To be in this time and in this place. My divine appointment.

I like to think they're right, in a way. But maybe it's more than that. Maybe it's just what happens when a teacher's love and experience connects her with her students in ways others cannot understand. And she notices what others miss. Not because she's special or different or even --- deaf. But because she has learned to see.

**You can read more in another post that tells what became of my student following his diagnosis of profound hearing loss: http://bonniestone.blogspot.com/2015/02/monday.html

Whoa

There are times when I almost feel normal in my hearing life. This cochlear implant and hearing aid can be pretty good. And then there are times the sobering realization of just how bad my hearing has gotten slaps me across the face.

My head has been aching where the magnet pulls on my scalp as it connects my external parts to the internal parts. I'd hoped the ingrown hair the doctor removed last week would have taken care of the problem, but it's continued this week. I've been worried the headache might morph into one of those chronic migraines I've had in the past. They're hard to lick. Extra strength Tylenol and ice packs have helped. So last night, as I was watching TV, I decided to take a Tylenol and lay back in the recliner with an ice pack against the side of my head. I'd already retired my hearing aid to its dry box for the night. All I had was the little hearing I have left

Whoa.

My ears suck.

And The Oscar Goes To...

I had my six-month check up with my otologist last week. Because my right ear has hearing loss, too, I've earned a biannual appointment so he can keep tabs on it. It also gives him the opportunity to look at my implanted ear and gloat on his prowess as a cochlear implant surgeon. Some people have called him arrogant. Maybe he is. I like him. If I listen carefully and jump in with questions when he stops to take a breath, I can learn a lot from him. We pack a lot of conversation into those few minutes he schedules for me.

"Your audiogram is stable," he informs me.

That means that my range of hearing loss is unchanged. Within the realm of decibels and frequencies, I remain in the severe hearing loss domain. Though my hearing has slid a bit further down the scale, it remains above the dreaded "profound" range where my hearing aid will no longer be a viable option for hearing.

"It's a typical cookie bite hearing loss," he says, referring to the scoop in the middle of my audiogram that looks as if someone took a little bite right out of it. "It's usually hereditary, you know."

Actually, this is the first I've heard of that. I remind him that no one in my family has hearing loss except me. "But have any of them been checked?" he asks nonchalantly as he looks into my ear. Hmm, not that I know of, I think. "Is my sudden deafness in my other ear related to this cookie bite?" I ask.

"No. That's a completely different thing," he continues as he plucks another infected ingrown hair from my cochlear implant scar. I can't believe I'm still getting these impacted hairs almost 10 months after my surgery. 

"You might not have even noticed a hearing loss for a long while if it [the sudden hearing loss] hadn't happened. There. I think I got them all," he says, putting down his tools.

"Is that what's been making my head ache?" I ask him as he dabs my head. "I thought I needed a lighter magnet."

He takes my processor and proceeds to unscrew the magnet. "You have a lot of play with the magnet," he says. "See, I can unscrew the magnet so it's not so tight against your head. Try that." I reattach the magnet. I'll have to use it a few days before I know if it helps. He explains that the ache usually comes at the end of the day because the skin flap is thinner and less hydrated. It's kind of like how feet and fingers are fuller and puffier in the mornings, but shrink a bit by days end. That's why my scalp aches. I need to remember to turn the magnet as the day goes on.

"It's an amazing piece of technology, isn't it?" he asks, mostly rhetorical. He doesn't really expect an answer. "A few years ago, I'd be holding your hand singing Kum Ba Yah. There'd be nothing I could do for you," he says. "But now you can hear. You have your life back."

He asks if I'm still teaching or if I've retired yet. He remembers that I told him if this cochlear implant wasn't a miracle then I'd have to leave teaching. "It's not a miracle," I confess. "But it is amazing." And I thank him for everything he's done. He smiles smugly. It's a bit awkward for me. I wonder if he knows I'm not as thrilled about it as he is. But then I remember what a great actress I am. His ego is intact.

He shakes my hand and tells me he wants to see me again in six months unless I need him sooner.

I deserve an Oscar.

It's My Life

You may have noticed the change of my blog's title.

I've decided this journey should come to an end. I'm not on a journey.
I've noticed there are so many "journeys" in life and so many people blogging about their particular life journey. We peruse our struggles in life as journeys quite often. But the definition of journey implies that there is a destination to be reached; there is an endpoint; it's a trip that at some point must come to an end. You have to arrive in a new place.

That's not really what my cochlear implant life is. It's not a journey. I'm not on a trip. I'm not traveling from one point to another. I may arrive figuratively at a new place mentally and spiritually, but I'm not really going any place new. I'm moving forward, but I don't anticipate that I will actually "arrive" anywhere. There is no end. No. This is not a journey. 

So, is this particular time in my life an adventure? Most certainly, at times, it seems so. Perilous, unusual, and often hazardous -- I remember the times my magnet finds itself unexpectedly attracted to metallic objects that come close to it. Car doors, umbrella tines, and the metal necklaces of my hugging friends are just some of the times my cochlear implant unexpectedly leaves my head to pursue its own adventure without me. Only last night, I found myself crawling around on the floor next to my nightstand with a flashlight searching for the evasive ear hook that popped off while I was wiping my processor clean of it's daily grime --hoping to find it before the snooping noses of three dogs (who thought they were helping me) could find and devour it. Adventurous?

Yes. It can be an adventure. But an adventure connotes a sense of danger and excitement. And though there is some excitement along the way, I'm not sure that you could call my cochlear implant very dangerous. No. Adventure doesn't describe this walk any more than journey does.

I think what I have is actually an undertaking -- a task that I have taken upon myself, though unwillingly. It's a pursuit, a trial, a job. It's a task I have undertaken. I like this term much better. It delivers a sense of accomplishment; an awareness of overcoming difficulties as I learn and grow. 

It's an undertaking of new life experiences, deeply affected by a hearing loss I am powerless to prevent, but can certainly transcend.

It's my life. It's my cochlear implant life.

It's a Very Good Thing

This is the Phonak Inspiro
that I use in my classroom.

It isn't the first time my students have seen my little FM mic. I use it every day while teaching reading groups. I am trying out a new FM system before I will decide which one my school district will purchase for me as part of my hearing accommodations. I am lucky my district has the resources to help me in this way. I don't think I could continue teaching very much longer if I didn't have this help. The FM delivers my students' tiny voices directly into my cochlear implant and makes it possible for me to hear them reading to me even while the rest of the class is busily engaged in reading and learning activities in my classroom.

But the simple action of pulling the mic out of it's storage bag and clipping it to my make-shift microphone holder in the center of my teaching table brings out an excitement for reading that I don't often see in school anymore. My eager readers were practically giddy -- waiting for their turn to read into the mic. And when I asked my first comprehension question, every hand went up.

And then the thought occurred to me: this little FM mic is not only good for me, it is very good for my students, too.

Denial

There's a little thing called denial that keeps people from confronting real problems. Denial is a psychological defense mechanism that keeps unwanted and oppressing issues at bay.

Denial prevents us from dealing with reality. In our human psyche, we somehow believe that if we deny it, it doesn't exist. If we refuse to acknowledge or believe in something, then it can't possibly hurt us or affect us. We all live with a certain amount of denial. Some more than others.

Denial just postpones the inevitable, I think. Denial is easy. Reality is sobering.

The reality is this: I am losing my hearing. The cochlear implant in my ear is adequate to hear. But it is not adequate for me to continue doing many things I have done before. With my better ear failing, I am faced with obstacles I cannot overcome, even with the best of technology. Adapting and changing the way I do things can only take me so far. And too many times, that is not enough.

Hearing loss is pernicious.

There are those around me who deny the extent of my hearing loss, especially those closest to me. When I speak frankly about my fears and worries and the continuing slide of my natural hearing, they tell me not to worry -- that I am strong and "it's not so bad." You're doing great. You can overcome this. You will do better than you think. You can do this. It'll be all right.

I know the words are meant to encourage me. But they don't really help. They only seem to magnify my daily struggle to "overcome." And when I face disappointment where I wanted success, denial steps in to dissuade me from accepting the truth. Truth is, I'm tired of constantly having to work so hard to be all right. And I know those near me are tired, too.

I'm not all right. And I want others to stop denying how terrible my hearing loss is for me and for them. It sucks. And it's okay to just say so.

Listen to the Quiet

There is a light rain falling on this late summer Saturday. Refreshingly cool, damp, and quiet. I strolled through my garden path, stooping to lift a pepper plant that had fallen to the ground. Laden with jalapenos and rain -- it was too much for the stake to hold. As I gently pulled the stem upright and repositioned the stake into the wet earth, I could faintly hear the chattering of raindrops on the leaves of my oak trees above me. Soft. Unpolluted. And quiet.

It is good to listen to the quiet, I think to myself.

It seems to me that people have forgotten what quiet is. Our world is a world of noise. And when it is quiet, we have conditioned ourselves to fill the quiet with sound. We are uncomfortable with quiet. 

I believe my deafness has restored my friendship with the quiet. It has made me appreciate the smallest sounds that I overlooked before -- or took for granted -- in my attempts to fill the void of quiet with sound. And this bionic ear inside my head is an amazing tool for hearing the quiet.

If you haven't listened to the quiet in a while, maybe you should. There is so much to hear there.

It's Better than Before

Losing my hearing was probably the most devastating thing that has happened to me. And learning to live with one deaf ear and one failing ear has not been easy. Every day has brought new challenges and opportunities to learn, adjust, and adapt to the hearing world around me. I still have a ways to go. But I've come a long way. 

People have been very encouraging and supportive throughout my cochlear implant candidacy, surgery, and rehabilitation -- through my worries and doubts and successes and trials. I admit, though, that some of the catch phrases they've used have irked me more than they encouraged. The one I hated the most was  "It's better than being deaf, though. Right?" 

Is a cochlear implant better than being deaf? I think it is better than before, even though it's hard for me to put a value on exactly what "better" is when what I hear is so -- different than before. It is very different. But there are so many things that indicate how much it has improved my life.

This has been my first start of school with a cochlear implant. It's been good, overall. Colleagues who knew me last year -- post deafness, but pre-cochlear implant -- have all told me that they can tell I am hearing much more now than before. And I don't feel so lost, either. I didn't have to ask for clarification very often during those first days. I think I heard and understood most of what was happening around me this year, and I could hear most of the first staff meetings, even when people were holding side conversations around me. Last year, I had trouble keeping up with the meeting even when everyone was quietly listening! It's not perfect, but, yes, it is better than before.

My principal apologized to me a few days ago because I'd misunderstood an intercom announcement and didn't take my students to recess, but kept them inside for "quiet play" instead. I had thought the morning announcements had said that due to excessive heat, we would have an inside recess.  I totally missed the part about "I'll make an announcement if we need to keep students inside." There isn't any context or visual clue to help me on an intercom announcement. So when he came into my room with an apology for me, I smiled at him, and said, "Mr. H, that's just my life now. No worries." He apologized again later, too.  Last year, I couldn't even hear the intercom until after my cochlear implant surgery. And then I couldn't understand what I was hearing. Now I can understand some of it, at least. I hear and understand more. That's better, yes?

My school district's audiologist and lead deaf education teacher came to my classroom to deliver and set up a new FM system for me to try out during my reading groups and faculty meetings. The FM delivers a speaker's voice directly to my CI to improve my ability to hear and understand. Both of them mentioned how much my hearing had improved and how much more confident I was than when they had seen me last January. I was actively advocating for myself and my students needs. I am determined that my hearing loss will have minimal impact on my pedagogy and classroom. "The difference is remarkable," they said. "You're a new person!" It's true. I was frantic and uncertain and lost when they saw me last. And ready to give up a career I love. Now I can see the proverbial forest because I've climbed those trees! That's certainly better, I think.

I went to a movie with my daughter last week. Because I'm afraid to not have the closed captioning device, I got one from the box office clerk, just in case I needed it. But during the movie, I found that I reached for my cochlear implant's remote control to adjust my processor to a setting that improved the sound quality rather than reading the script scrolling across the box. Only a few months ago, I could understand only a fraction of what was being said in movies, no matter what program my processor was set to. Now that little black captioning box only made me feel secure. I really don't need it anymore. Of course, that's better!

I'm still deaf in one ear. And one ear is failing. A cochlear implant doesn't change that. But the CI is an amazing tool that simulates sound. It's only a tool, though. I am the craftsman that must make it work. Misunderstandings, missing parts of conversations, using the finely tuned settings of my remote, advocating for my needs -- these are all indicators that I am progressing and improving and learning. That is better than before.

I can hear. And I can understand. And I can participate in my life again. Isn't that better than being deaf, you ask?

For me, the answer is "Yes. Yes it is."
 

Carpe diem

Today is the second anniversary of my sudden sensorineural hearing loss. One minute I could hear. And then I could not.

August the fourteenth will always be a day of trepidation for me - marking the day that changed my life forever.  A day of loss and fear. A day that propelled me into unknown territory. It's a day that makes me apprehensive, and stirs emotions I wish it would not.

But these things I've learned:

Nothing is guaranteed in this life. Not your home, your job, your family, or health. And definitely not your hearing. Nothing. Life deals blessings and blows. It knocks you down and builds you up. You make do. Life goes on.

Life is hard. No one ever said living would be easy. So don't expect it to be. You will be continually disappointed if you think your life should be perfect.

It's not your fault. Sometimes things just happen to you. You didn't earn it or deserve it. It's not the consequence of your actions, either good or bad. It's not because you were careless or ignorant or unfortunate. There is no answer to why. It just... is. And the sooner you realize that, the easier it is to accept.

As big as you think your problems are, there's always someone who has it worse. Trust me on this one. One only has to watch the evening news to see that. Don't think you are alone in your suffering. Everyone has a story to tell. We all carry personal burdens. Being deaf may seem pretty challenging and overwhelming. But so can a number of other ailments and conditions. Sometimes you may find yourself saying, "At least I'm not that guy."

You can let your problems define you, or you can define them. Nothing ever gets accomplished when you are absorbed in excessive self-pity. Cry, grieve, and even wallow for a time. Then dust yourself off and move on. There will be days when you are overtaken with emotion again, but time heals, and you know that you still have a lot of life to live. So you do.

More good things happen than bad. Go ahead. Count your blessings. Some people may have to look harder and deeper to find their blessings. But I'm pretty certain that if you are honest with yourself, the good is more than the bad. 

Carpe diem.

Oh No...

...it's August again.

August hasn't proven to be a great month for me.
It seems that if things decide to go bad, they always wait for August. Then all hell seems to break loose.

It was on August 11, 2008 -- the first day of school -- that I had an unfortunate reaction to Coumadin, a medication I had been taking to treat my deep venous thrombosis (DVT) found by my chiropractor only a few weeks before. I had used Coumadin before to treat the same condition, so a reaction to the medication was a bit of a surprise. I was bleeding internally. A lot. Eleven days, three surgical procedures, ten hemoglobin and two plasma transfusions later, my doctors decided to perform a hysterectomy to eliminate the biggest cause of what I now deem "the big bleed". It was a long recovery.

It was on August 3, 2011 that I learned the warty thing on my hand was actually squamous cancer of the skin. It has since recurred three more times in the same place. I sport a smooth, white scar where the cancer once ate away at my skin cells, and I earned a biannual appointment at the dermatologist for the rest of my life. I'd been a religious wearer of sunscreen, SPF 15 or higher, for most of my life. I still got cancer.

It was on August 1, 2012 that my orthopedist confirmed the ER's diagnosis that I had indeed broken the distal fibula on my right leg while attempting to water my garden in my flip-flops. My garden mucks were sitting on the patio, but in my careless haste, I ignored them. I caught the toe of my flip flps on my garden wall and the rest is history. The decision not to slip on my mucks was one I came to regret over and over during my recovery. I wasn't allowed to walk on my leg during the healing period. The little knee scooter I used wasn't much better than the crutches. I blame this carelessness on everything that occurred later...

It was on August 14, 2012 that I suddenly lost 90+ dB flat-line of hearing in my left ear and 60+dB descending line in my right. One minute, I was hearing; the next it was gone. I blamed my allergies and a clogged Eustachian tube. Little did I know.

Two days later, on August 16, 2012, my ENT delivered the bad news that my Eustachian tubes were just fine and that I'd experienced a rare case of Sudden Sensorineural Hearing Loss. My hearing loss was permanent. It was devastating.

On August 21, 2012, I was diagnosed with a complete pelvic thrombosis in my right leg. "There is no blood flowing out of your leg. None. The vein is completely occluded," my doctor told me. This second day of school became my last for six weeks as I was placed on complete bed rest.

The diagnosis of the DVT was a mixed blessing. While laying on my back for six weeks wasn't much fun, it did give me time to come to grips of sorts with my sudden deafness. I used the time to cry and feel sorry for myself, learn as much as I could about sudden deafness, and train my dog to help me with a variety of tasks that requires hearing -- the most important was waking me when she heard the alarm. I also was able to contact and see an adult hearing specialist -- an otologist -- and receive specialized care and treatment. Though I would be unable to get hearing aids until my audiogram stabilized after the weeks of treatment following the SSHL event, I could slowly learn to accept and deal with the changes in my life. Taking time off work allowed me to heal physically, emotionally, and physically.

I still blame the blood clot for my hearing loss. Hearing loss is often attributed to a loss of blood flow to the inner ear and cochlea. My doctors won't say that's the cause, but they don't sound convincing to me when they explain that the cause is unknown. The SSHL and blood clot occurred too close together for me to believe it was just a coincidence. And I blame the blood clot on the broken ankle. And I blame the broken ankle on that careless choice to wear flip flops in the garden. I threw those damn shoes in the trash can.

Forgive me, if August fills my head with dread. I approach it with apprehension.

But August also holds a day that doesn't strike fear in my heart. It's the day I learned that hope was waiting for me.

It was on August 21, 2013, that my otologist's nurse called me to let me know that I had been approved for a cochlear implant. We set the date for my surgery.

It wouldn't be in August.

My Ears

My Ears

I call them "my ears." They are my hearing aids -- my little behind-the ear Phonak Audeo hearing aid and my Nucleus 6 cochlear implant. They are my connection to the hearing world. They are both awesome and fierce. I waver between wanting to show them off to the world or keep them hidden to all but a few. We have a love-hate relationship.

My Phonak Audeo is a mini hearing aid. It is so small and discreet that one would have to know it's there to see it. The taupe color of its case makes it virtually invisible against my hair, and the slim tube feature is barely visible on the front of my ear. All that I have left of my natural hearing is amplified through this hearing aid. Without it, I can hear very little.

It has a tip that fits snugly in the ear canal. Who knew something so small and soft to my fingertips could be a nearly constant source of irritation to the sensitive skin in my ear? I have oily drops I put in my ear canal at night to relieve the irritation, and I have to be sure to wash it away in the morning. Oil is a hearing aid's worst enemy. It may be small and discreet, but don't ask me to hug you unless you are prepared for the feedback. It's set with such tremendous volume that it gives feedback whenever anything comes within close proximity of it, be it my hand or your head. It will whistle at you! When I put it in my ear in the morning, even my dogs cock their heads as my Phonak serenades us with the feedback song.

The behind-the-ear fit often becomes a dangling-from-the-ear fit, as my Phonak is easily knocked from its place behind my ear by the wind, stooping and bending, or anything that brushes near my head -- most often my own hand as I sweep my hair back with my fingers. The tip in the ear canal prevents it from falling off completely. It's a common nuisance among hearing aid wearers, I think, because I saw a young clerk at the grocery store who was wearing his hearing aids in the same dangling-from-the-ear style that I often use. Though it was hard, I resisted the urge to reach up and put it back into its proper position! I did take great satisfaction in knowing that I wasn't the only one stylin' my ear this way!

My N6 processor from Cochlear, Inc. is the thinnest and lightest processor on the market, so they say. It's still pretty big, and it can be cumbersome, especially because I wear glasses. There's only so much room behind the ear! It makes my ear -- and my hair -- stick out in unnatural ways. The coil cable that connects my processor to my coil magnet sticks out at an odd angle, and it gets caught in my fingers when I finger-comb my hair during the day -- usually knocking my coil off my head, and making things worse than they were before.

Being such a vain person, I get a little obsessive with checking to make sure my hair is lying smoothly against my processor and coil. Some days I find myself patting the side of my head for no reason at all. Then there are those days when I come home from school and glance in the mirror and shudder. That's it! I'm cutting all of my hair off right now! (Stepping away from the scissors.)

The magnet on my cochlear implant makes my scalp sore after wearing it all day. Massaging the magnet area at night has become a welcome bedtime ritual. I've even taken the magnet off for a few minutes and indulged myself with a little scalp rub during the day. A student once saw me scratching my head and asked, "You got head lice, Miz Stone?" !!!!!


The coil magnet is a fickle bugger and has a tendency to fly off my head when it is near anything metal that has a stronger attraction than the one in my head. Car doors are especially dangerous. One car door has already caught my magnet and sent my processor flying through the air! I had to get down on my hands and knees - in the rain -  to find my processor lying on the pavement under the car. I'm still thankful pictures of that haven't surfaced on YouTube or Facebook.

They're my ears. They're part of who I am now. Perfect and flawed at the same time. This is an imperfect journey I am on. Keeping my tongue firmly planted in my cheek, I will continue to walk the roads that lie ahead of me. And I will take my ears along for the ride. The ending has not been written yet. If you see us, give us a little wave or a nod. Better yet, walk along and have a little chat with us! Because we will be able to hear you. It's just the way it is.

I Can Hear the Sea

The roar of the ocean is a mighty thing.

The rumble of the waves as they gather their strength

To crash upon the shore,

Thundering fiercely, then ebbing away,

Only to repeat itself again and again.

It's mesmerizing to watch,

But better to hear.

I can hear the sea.

There are so many things I no longer hear. My Borg parts help me get some of that back, but much is still lost to indiscernible noise clutter. I find myself relying on those near me for help far more often than I'd like. While passing through customs, I had to repeatedly ask the agent to repeat herself. She was sitting in a glass cubicle with only a slit of space for her voice to come through. Other agents and travelers were talking, as well, and the noisy drone of a busy airport engulfed my ears, blurring the line between hearing and listening. It made hearing, let alone understanding my agent a huge undertaking, if not a near impossibility. I finally looked at my husband with that all-too-familiar look of exasperation, and cried to him for help. "I have no idea what she said! I can't hear anything in this place!" It happened again in a restaurant. And again on a tour of the island. And again while trying to get a pool towel. I never know when I'll find myself staring blankly and uttering those dreaded words, "I'm sorry. What did you say?"

Since losing my hearing, I've found myself withdrawing from conversations and situations where I might find myself in potentially frustrating and embarrassing positions -- declining invitations to go to parties and events, busying myself with reading or online pursuits, letting others order for me at restaurants, waiting for them to speak for me - or instead of me... I've heard it's a common side effect of hearing loss. I'd promised myself I wouldn't let that happen; that I'd rise above the temptation to do that. But truth be told, avoidance is just easier.

So I retreated for a few days of my vacation to a chaise lounge by the beach with my nose in my Nook and the audio narration in my CI processor. For all intents and purposes, I appeared fully occupied and unapproachable. But I listened. No, I strained to hear.

And there it was. The sea -- the waves, the breeze, the gulls, the music from the beach bar, the voices of people near -- and far. And the annoying buzz of the paraglider that jolted me from my thoughts and reminded me that I can indeed hear. Not always so well, but sometimes just well enough to surprise myself at how good it can be with this cochlear implant. And how bad it would be without it.

The ocean is healing and rejuvenating and forgiving.

I can hear the sea. And I never, ever have to ask it to repeat itself. That's a very good thing.

Unexpected Emotions

"Sometimes our emotions surprise us."

These were the words I posted on a friend's Facebook status today. She had faced an important decision, and upon finalizing that decision today, she found that it had made her sadder than she had expected. It was a little prophetic.

I uploaded my second audiobook onto my iPod tonight. It's part of my focused listening rehabilitation to improve my cochlear implanted ear this summer while I am off from school. It was a twelve disc set of Earth Awakens, the prequel to Ender's Game, which I just finished a week ago. It took most of the evening to copy the disks into a computer folder and just a minute to upload it to my iPod. The script of the book is loaded onto my Nook. I'm ready to go.

But then, sometimes our emotions surprise us. I began to take those familiar, deep breaths again -- those deep breaths that are meant to calm you when you feel that little quiver in your heart. Those breaths that you know are meant to squelch the tears that brim just under the surface. Tears that are unnoticeable to others, but threaten to expose the deep sentiments that only you know. Why would having this book ready for listening suddenly make me sad?

It's a reminder of things lost. And when I least expect it, I am suddenly sad.

A Little Help From Your Friends

It doesn't take long after losing a "friend" to realize that person was never really your friend. True friends are there for you no matter what -- through thick and thin; through agreements or not; through joys and heartache; through flaws and strengths. They seek you out in times of trouble and restore relationships that might've been lost.

It doesn't take long after losing a "friend" to figure out the relationship really wasn't so good for you. That little voice inside of you that kept gnawing at your conscience previously begins to comfort you with reminders that the problem is not yours. The guilt of loss is not a burden you need to bear. You can move on and be a better person because of it.

It doesn't take long after losing a "friend" to know that you can trust people again. The hurt and betrayal are only temporary, and you know you will continue to let others into your life because that's just who you are. Maybe you'll be a little more cautious. Maybe you'll watch from afar a little longer. Maybe you'll listen better than you had before to that little voice that tells you to run.

It doesn't take long after losing a "friend" to find yourself again. Mostly because you've been there before and you know you'll be there again. Life is full of people who use you to build themselves up by putting you down. You know that relationships that tear souls apart are meaningless and hollow. You are better than that.

It doesn't take long to recognize that loss is a part of life -- though it be friends, property, health, or hearing. Some things happen by no fault of your own. That's just the way it is. Some things are better lost than found. You can hold your head high, count the many blessings you have, and thank your God that you are who you are, and that is good. 

And you can bear your burdens with grace and dignity and perseverance... sometimes with a little help from your friends.

Happy in My Heartache

The CI was developed for speech. That's why the ear piece behind my ear is called a speech processor. Music, in all its richness and subtle nuances of tones and undertones, is distinctly different through the speech processor -- noisy and tinny, the speech processor is essentially unable to reproduce much of the tonal qualities that makes music what it is. Or at least what it is to me.

At the risk of igniting a firestorm of disagreement from other cochlear implant recipients who swear that music is a great source of enjoyment for them, I have to say that being late deafened and having been classically trained as a vocalist, and still pretty new at this whole CI thing, I have found music to be unequivocally..., well..... it's plain awful.

I've been told that it will get better with ear training and music listening exercises. My audiologist even suggested that I should begin listening to music and bearing with it even if it sounded terrible. So I subscribed to music therapy to try to improve my music experience. Contrary to much of the lay advice I've heard, my music therapy involves "fresh" listening instead of listening to known songs twenty or thirty times until my brain recognizes it -- music with strong melodies sung by solo artists with instrumentals that are not amplified (my apologies to the electric guitar aficionados out there), and listening without regard to lyrics. One tip is to listen to various art songs in foreign languages so that I would focus on the melody of the song and not be distracted trying to figure out the words. So far, it hasn't worked miracles for me.

So, this afternoon, I cranked up the volume on my car's CD player and took a road trip. With my better ear plugged and my windows rattling, I listened to Josh Groban's CD "All That Echoes" as I careened down the highway. I am a fan of all things Josh Groban, and I knew he was a soloist with lush orchestration accompanying his voice. Nothing Van Halen-ish.

It was mostly non-descript. Not as bad as listening has been in the past, but certainly not great. I didn't think anything could ruin Josh Groban, but, let's just say, my CI wasn't doing him any favors.

Then it happened. Just as it had been when I heard my husband's voice yesterday, it was a sudden revelation. I could hear the song. Not just the words and the voice, but the melody and the instruments. The whole song. (Now mind you, it's not like hearing it through a normal ear, but it was most certainly  an enormous improvement from the clutter of noise that music has been since my CI.)

I became engulfed in "Happy in My Heartache" and found my head bee-bopping and my voice humming along. Here's that little ditty, my first CI song: Happy in My Heartache (click to listen, and see if you bee-bop, too.)

Though Josh Groban is singing of love lost, this little song will have a deeper meaning for me. My hearing loss has been a heartache. But unlike the song, I can find happy in it. It's the first song I've heard post cochlear implant that actually sounded like, well, like music. And it makes me happy.

And All of a Sudden...

CI Boot Camp hasn't been much fun. I really can't hear as well with only my cochlear implant as I do with both my CI and hearing aid. Last week, I began going without my hearing aid to strengthen my CI ear. It isn't easy. My other ear has severe to profound hearing loss, so without the hearing aid, it's really bad at best. Being one-sided "deaf" again has been a struggle, and straining to hear and understand speech is an even bigger challenge. I had a migraine with aura on the fourth day and a tension headache by the end of the week.

During this second week of camp, I've been putting a plug in my other ear. It doesn't block all sound from my ear, but it greatly diminishes what little hearing I have left in it. It's been interesting hearing the world only through the implant. It's hard to describe to people who've never experienced it. The best description I can come up with is that it sounds somewhat like I'm listening to an old portable, AM transistor radio -- you know, the one you begged for when it was 1969 and you were eight years old and your parents finally got it for you for Christmas. Static-y and distant. It took a lot of effort to hear and understand that little radio box, but you were so happy to finally have one, you played it constantly and thought it was the Best. Radio. Ever.

On this 13th day of boot camp, I accompanied my husband to the hardware store. Along the way -- and in the middle of a conversation -- I suddenly became aware that he didn't sound so mechanical. I thought the earplug had fallen out of my other ear. But upon checking, I found the plug tucked securely in my ear. I even pressed my finger against it to block as much sound as I could from that ear.

It was true.

My husband's voice sounded almost completely normal. 

Almost.

I know there will come a day when listening through this cochlear implant will be routine and normal. But for now, these little revelations are amazing and noteworthy.

It's an incredible journey that I am on.

I Love the Rain

This morning, I sat on my covered patio during a rain shower. It was that kind of rain that gently soaks the earth and makes everything smell fresh and clean. It's the kind of rain that whispers in the air and ebbs and flows as the clouds roll across the sky -- softly falling on the earth like sparkling jewels, trickling from the eaves and sprinkling through the leaves of my sturdy oak trees and sometimes sweeping a light mist across the patio to dampen my cheek.  The deep gurgling of the swimming pool across the yard joined nature's orchestra and filled my senses with a symphony of sound: the sound of this rain-gift caressing the earth with her drip-drop song.


Curiously, I slipped the cochlear implant coil from my head -- that odd little magnet that connects my Borg parts -- and I listened intently for the sounds of the rain -- the depth of sound that had flooded my ears was gone. My natural hearing is slipping away.

Then I touched the magnet back to my head and marveled again at the miracle of technology that hears for me when my ears cannot.

I love the rain.

Noise

It's been 6 days since I wore my hearing aid. My audi said I should go for extended times without it -- like a week or two at a time to strengthen my cochlear implanted ear. It's my summer of CI boot camp.

It's making me very grumpy. 

I can hear too many things I really don't want to hear. There's an incessant bird outside my house that chirps from sunrise to whenever I take my CI off for the night. My dog barks at the wind. My husband insists on talking to me from behind while the TV is on. People call instead of texting me. I am inundated with noise. My world is a cringe-worthy, overpowering cacophony of noise. It's driving me crazy.

But I can't hear the things I want to hear. Correction - I don't understand the things I want to hear. I've found myself apologizing to people again. "I'm sorry. What did you say?"

I'm grumpy. And I have a headache. So I yelled at the dog for getting in my way while I was watering my garden. I ignored the clerk in the store when I think she asked if I needed help. I snapped at my husband when he asked me what I was going to do for dinner. I turned off the blaring TV. And I put my CI in its case.

Virtual silence. (My good ear is very bad.) No one said this road would be easy. But I wish it were a little smoother.

This world is too noisy. I want to hear. But I don't like the noise.

Boot Camp, Day 1

I saw my audiologist again yesterday for an adjustment. She is very patient with me and I can tell she is doing the very best she can to help make this cochlear implant successful for me. We talked in length about my frustration and what I can do to make things better.

She called me a perfectionist. Not in a bad way, but in a way that means I'm hard on myself. I expect and demand the best possible outcome for myself.

It's true. I am a perfectionist. In my heart, I know this is just a technological substitute for the real deal. CI hearing will never be as good as natural hearing. But the logic in my brain keeps telling me that I can overcome this. If I just work hard enough, it'll come much closer to being a replacement for my hearing loss. I don't really believe that, though. I fear my heart will win.

I need to stop comparing myself with CI recipients who have no natural hearing left, she cautioned. Listening to others tout their success and telling me their CI is the best thing that ever happened to them and how naturally everything sounds and how much they love listening to music through their CI, and so many other things "they" say, can be counterproductive for perfectionists like me. I'm not like most CI recipients.

One of the things I have to keep in mind, she explained, is that I still have an ear that can hear naturally, albeit pretty poorly, it can still hear. I can compare the CI to natural hearing easily and readily -- something most recipients cannot do. They may say they remember how things sounded before they became deaf, but it's only a memory, and memory can be deceptive based upon our immediate perception and circumstances. My hearing isn't a memory.

Learning to hear with a cochlear implant is a process, she said. I'm only 5 months into that process. "It takes a year, or two, or three for some people," she said. It just takes time.

My fear is and always has been that my other ear will go as suddenly as my deaf ear went. I don't feel like I can hear well enough through the CI to make it. It's just not good enough, I thought aloud. "I think you would be surprised," she said. Then she reminded me that when she put me in the booth several weeks ago, I had done as well as anyone with "perfect" hearing could do. I just need to give myself a break -- and a chance. Stop being such a perfectionist. She didn't say it out loud, thank goodness.

She suggested that while I am away from my classroom this summer that I use the time as a sort of rehabilitative "boot camp". Since I am still fully dependent on my dominant, hearing-aided ear, I am to go for increasingly longer periods of time without it. That will force me to listen more with my cochlear implant. She acknowledged that it would be really hard at first. "It'll make you crazy," she laughed. But I'll adapt and find that I can hear well enough through my CI to do just fine. She even gave me ear plugs for my other ear.

So today, I began boot camp. So far, so good. But I've only had my coffee.

The Proverbial Horse

For Christmas, my daughter gave me the audio book, Ender's Game, to practice listening with my new cochlear implant. I didn't jump right into it, though, being all new with the whole listening rehabilitation thing and wanting to practice easier tasks before I attempted an entire audio book. I'm not sure what I was saving it for, except that I love reading so much, I didn't want my enjoyment of the book to be overwhelmed by my struggle to listen and understand.

The night before I left on a trip, I had my husband help me transfer all of the CDs to my iPod so that I could listen to the book while I was traveling. I could use my personal audio cable (PAC) to listen to the iPod through my cochlear implant rather than using regular earbuds.

I have learned that listening through the PAC is actually better than listening through the processor microphones. One of the deaf education teachers in my school district explained that using the cable eliminates extraneous background noise and makes the sounds easier to discern, thus making listening easier. It's the same circumstance that makes using the FM system to hear my students read so much better than listening without it.

I have to admit that listening to Ender's Game was better than I had expected. I had to resist my urge to read ahead and I had to concentrate on actually staying with the narrator, reminding myself that this was as much an exercise in rehabilitation as it was for entertainment. But once I began, I was happy that I could understand words very well and could even detect changes in pitch, volume, and character voices. The narration still sounded somewhat artificial and robotic, but not nearly as much as I worried it would. I was feeling pretty good about how well I was doing with my CI.

But as I listened to the narration, I began to wonder what the narrator's voice actually sounded like.  I decided to listen with an earbud in my impaired ear to compare how well my CI ear was doing. Without my hearing aid, I had to increase the volume quite a bit, but was able to hear well enough through the earbud to understand the narrator easily.

Maybe it wasn't such a good idea.

The narrator's voice was entirely different from what my CI perceived. As well as I thought I was doing, it's still not the same. And I thought I was going to cry from the disappointment that gripped me at this revelation.

I need to listen to the book with my CI again -- jump back on the proverbial horse and all. Perhaps my cortical reorganization will be helped by knowing what the narrator really sounds like. 

Or maybe not. This cochlear implant thing is really hard.

The Strobe

One of the things that worried me most when I lost my hearing was how I would be able to hear my morning alarm. Without my hearing aids, I am virtually deaf, and I had panic attacks about how I would wake up in time to get to work. Initially, the solution involved my husband waking me at an ungodly hour before he left for work in the early (early-early) morning. I used the extra time to watch the morning news, drink my coffee, and catch up on Facebook. But it meant having to go to bed after supper!

I knew this solution was only temporary -- my husband goes on trips for work, and he had a big hunting trip coming in November.  I began to fret over what I would do when he wasn't there. Having two German Shepherds, I wondered if I could train them to wake me when they heard my phone alarm. I picked a tune that they naturally howled at and reinforced them with doggie biscuits to wake me when they heard it. My female, Penny, had it down the first morning!

They love sleeping indoors with us (They love the biscuits, too!), and they are faithful to wake me, sometimes jumping up to put their paws on the bed beside me. (It is interesting that my husband changed his alarm tune to the same one as mine for a time. The dogs knew it wasn't my alarm and didn't howl at all! So smart!) As a backup plan, I ordered a Sonic Boom alarm clock with a bed shaker. I set it to go off a minute after the phone alarm, but I seldom need it. The dogs are that good! I haven't overslept since I lost my hearing!

I recently learned that my iPhone also has accessibility features for the hard-of-hearing. There is a strobe that can be used with the alarm. I turned it on, but it hasn't been much of a factor in waking me. It's not bright enough to wake me from a dead sleep.

Until Monday morning, that is.

Being the first Monday of my summer vacation, I was a little annoyed that the strobe chose this day to wake me. I thought I had turned the alarm off.

As I rolled over to turn it off, I noticed Penny asleep on the floor beside me. She wasn't howling. And my phone wasn't flashing.

It was Mother Nature's strobe. I'd been roused from my sleep by lightning.

Oh the Joy

I had to leave a professional development meeting this week to change my cochlear implant battery. Those little low battery tones are often a nuisance, but sometimes they're a little like Ode to Joy -- like when you must leave a presentation you've had the pleasure of sitting through at least four times -- for a legitimate reason... I had left my batteries in my spare parts kit locked safely in my classroom.

Upon returning to the meeting, the low battery warning in my hearing aid went off, as well.

Joyful, joyful, we adore thee...

I had to leave the meeting again. I should learn to carry spare batteries with me at all times, but I'm appreciative that this day was not the day I had done so! The bliss of getting to change my second set of batteries was immense.

I will have to remember to ask my audi if she can change my low battery tone to Ode to Joy.

Oh the joy of being battery-powered.

Suffer the Children

Oklahoma has failed it's children.

The state of Oklahoma enacted a pathetic, punitive law that seeks to retain any third grade student who doesn't pass the reading portion of the state-mandated reading test. The law was passed, disregarding the wishes of the thousands of citizens in this state who opposed and lobbied their state legislators to vote against it. To add insult to injury, an amended version of the law that would restore the decision to retain students based on a portfolio of student work, multiple assessment, and determined by parents, teachers, and reading specialists, passed solidly in both legislative houses, but was vetoed by a governor who is playing politics with our children's futures. This law is discriminatory. It punishes children because of their disabilities and differences. It forces all children into a "one-size-fits-all" assessment of their "abilities."

The fallout of this law is huge, and it is only the beginning. Parents and citizens are joining educators across our state in expressing outrage over the compulsory retention of students based on a single, high-stakes test score. They are furious that the stakeholders closest to our students -- the parents and educators who know these children and their abilities -- have been indiscriminately replaced by arrogant legislators who think they know best. It's government intrusion at its worst.

Today I read an article in our local newspaper that extolled the tragic results of this law on our children. All of the stories of "failing" children are heart-wrenching. But one story hit a personal chord with me. All ten of the deaf children being served in my district's deaf education program were deemed "unsatisfactory" and will not be able to go to the fourth grade. They received unsatisfactory scores on a test in reading that is largely based on phonological knowledge of words and language. Now remember, these are children who are deaf and cannot HEAR those phonemes upon which our language is based, and who have limited knowledge of what our language sounds like. Their primary means of communication is American Sign Language. They could be held in the third grade for two more years. That would mean they would be 20 when -- or if -- they graduate from high school.

Imagine yourself as a nine year-old child, sitting in a classroom, and being subjected to your first ever standardized test; a test that is taken for two days, for approximately two hours each day, and knowing that your future career as a student is dependent upon this single test score, no matter who you are or what you have done up to this time, or what you will do after this time. It is a single score on a one-time, high-stakes standardized reading test --regardless of your individual disabilities, learning differences, native language, or extenuating life circumstances --that will make or break you.

Now imagine that you have never heard a single word, or even a sound, in the language of the test you are being subjected to take. You are deaf. Alone. Without modifications. Without help.

And now, you will be forced to endure it all over again next year. Because you have been deemed unworthy. You are unsatisfactory.

What have we done to our children?

Elections have consequences. And we are paying sorely for the decisions we, as citizens, made in the voting booth. It is time for things to change.

While We're on the Topic...

...of hearing aid batteries --

I let myself run out of them. Can you believe it? As one who is completely dependent on this tiny piece of technology, one would think that I would be more judicious about making sure my stash was well stocked, right?

Apparently not. There are no half-used packs lying around on my nightstand, in my purse, or in my hearing aid case. Not one, single, lonely, and almost forgotten battery cell to be found anywhere! Nada. Zip. None.

And having put my only battery into the Dry-and-Store last night with my hearing aid, I awoke to find that sole remaining battery has vanished!

It's a mystery. It is not on the floor where I may have inadvertently dropped it before putting it to rest. It is not trapped in my bosom where things of lesser value have fallen. It is not under the bed, nor is it on the nightstand beside my bed. It is not here; it is not there. I cannot find it anywhere!

I am confounded. Was it mysteriously raptured in the night by an unknown and super-sneaky battery thief? Is it hiding beneath a cloak of invisibility and snickering at me whilst I search high and low? Self-combusted? Abducted by aliens?

It is a puzzlement.

Therefore,  I will don my cochlear implant in a few minutes and trek to the drugstore on this Saturday morning to purchase batteries once again. Two, three, maybe even four packs to replenish my stash. And I think I'll get a latte while I'm out. And maybe a donut, too. I deserve it.

Damn You, Little Orange Sticker

While brushing my hair this evening before going to bed, I came across something shiny and sticky attached to my hair. In plain sight, it shone in the vanity light like the Star of Bethlehem. What on earth? Carefully reaching up to pull it off, I quickly realized it's one of those pesky orange stickers that I peel off my zinc air hearing aid batteries.

I've written about these little buggers before in this blog. They must be peeled away from the battery to activate them. They manage to make their way into the most innocuous places. They can be quite a nuisance.

Upon freeing my tresses of this sticky annoyance, I think to myself... I changed that battery this morning -- most certainly a full 16 hours ago! Did no one notice it? Not even one of my uber-observant first graders who look at me all day long?  Or did everyone politely ignore it and giggle to themselves about seeing yet another orange sticker in their silly teacher's hair?

Damn you, little orange hearing aid battery sticker.

Of All the Things I Love the Most...

...visiting my audiologist for an adjustment to my cochlear implant program is at the bottom of that list.

I want to have the very best "mapping", as it is called among CI recipients, but getting the perfect map is pretty hard for me to achieve. The pristine, clinical environment of the audiology office is a far cry from the real world of hearing. It's hard to explain to my audiologist exactly what I'm hearing or not hearing. And often, when she makes an adjustment, I can't tell if she's made it better or worse until I've tried it out for a few days. We are cautioned that with each new programming comes a week or two of adjustment as our brain adapts to the new map, so her best advice for me is to be patient. These are frustrating days for me. I'm not a patient person.

Since I am bimodal -- a cochlear implant in one ear and a hearing aid in the other -- it's important that the two devices work in tandem, balanced equally in sound and quality. My cochlear implant had begun to overpower the hearing aid, which resulted in my other ear feeling dead. It was getting really hard to hear even normal speech in quiet settings. She found that I'd had an obscure "resonance" program on my hearing aid turned on, which muted low tones and made higher tones more severe. That was part of the problem. Turning it off helped, but it didn't totally correct it. Turning its volume up another notch delivered more feedback, but restored some balance between my two ears. It's always a compromise.

My CI hearing is not so good right now. Hoping to correct some harshness and echoing I was experiencing, my new map seems to have made it worse for the time being. What sounded great in my audi's office isn't so good out here. Sounds are still quite sharp, though I'm not cringing as much. I'm having a hard time understanding speech, which had been getting better. I'm having a period of adjustment, clearly. Be patient, I tell myself.

I'm afraid that if my other ear goes deaf as suddenly as my left one did that I will be at the mercy of my cochlear implant. I explained my fear to my audi --that even though I've gotten much better, if I had to rely solely on it, I'm not sure I can hear well enough with it to get by very well, especially at work. She assured me that I would do better than I think. But I'm still apprehensive.

I know I've improved a lot in my cochlear implant hearing. Though voices and sound are not completely like my better ear, when I plug it and listen only through my CI, I can distinguish voices, pitch, and volume much better than before. And I can nail my vowels almost every time. Some consonant sounds continue to evade me -- /m/ and /n/ sound exactly the same, and I must rely on speech reading to help me know if someone says ma'am or Nan. I mistake /r/ for /l/ every time. [It reminds me of A Christmas Story when the family listens to the Chinese waiters sing "Deck the hars with boughs of horry..."] 

Click here to enjoy that scene again! (My life, haha!)
https://www.youtube.com/watch?v=46WcFObgYhI

So we practiced these sounds a bit more during our programming session. "Ride," I repeated. My audiologist giggled at me. "Lied," she said. Damn.

As we ended this appointment, she told me to be patient and give this program a try for a few weeks, and let her know if it doesn't improve. I can always come back... Ah. Not that I don't love my audi, but of all the things I love the most, going back for more isn't one of them.

Status Quo

Today I turned 53. It's my 2nd birthday since I lost my hearing.

I don't feel any different than yesterday. Certainly no different than being 52. Birthdays are just days that mark the day you were born, but the business of living isn't all that different from day to day - the present circumstances of life change slowly. Barely noticeable. Routine. Even mundane.

No different, that is, until something randomly and unexpectedly changes your status quo.

"Hmm," I said, mostly to myself as I reached up and ran my finger along the microphone of my hearing aid. "No wonder I can't hear anything. My battery's gone out. I don't seem to be getting the warning tones anymore."

"Or ---- maybe you're just not hearing them anymore," my daughter adds nonchalantly.

BAM. My status quo just changed again. I guess my new status quo is that my status quo is anything but status quo.

It had been such a nice day until then.

When you can't hear...

...you smile a lot. Not a cool, sexy, confident, "I'm-enjoying-life" smile.

It's a doofus smile. 

You smile because you can't really think of anything else to do or say. You totally missed the conversation, not just once, but several times. And when the hairdresser looks you in the eye and raises her eyebrows at you, you cannot help but smile that silly, dimwitted smile. And, as if that's not enough, you add that goofy nod of your head. Yep. You're a doofus.

"I'm almost totally deaf without my cochlear implant," you tell her, and the almost-conversation ends abruptly. Sitting in near silence for an hour and a half while she colors and cuts your hair is an exercise in patience. You know she wants to talk because she awkwardly converses with the client in the next chair. Then she comes to stand in front of you and asks a question of you --- perhaps for the first, or maybe the fourth time.

And what do you do?

You smile. And you nod your head.

Never Mind

The most frustrating part of being hard-of-hearing for me is having to ask people to repeat themselves. It's a nuisance, I know, for others to have to repeat their words over again and even again before I can understand what they are trying to tell me. It's not easy holding a conversation with me.

I'm accused of not listening. I'm criticized for tuning out. I'm chastised for not paying close enough attention.Truth is, I'm listening very hard. I just can't make sense of everything like I used to.

But the worst thing you could ever say to me is "never mind." Two little words that cut me to the core.

I understand that people get frustrated with me. And you may think that what you've said "isn't that important anyway", but if it was important enough to say once, it should be important enough to say again.

Please. Don't leave me out. Understand my frustration with hearing and listening. This cochlear implant hearing is really hard. Tell me what you said again. And again, if need be. I want to be a part of the conversation. Really, I do.

For hearing people, here are tips for speaking with someone who is hard-of-hearing: 

--Whenever possible, face the hard-of-hearing person directly, and on the same level. 
--Your speech will be more easily understood when you are not eating, chewing, smoking, etc. 
--Reduce background noises when carrying on conversations -- turn off the radio or TV. 
--Keep your hands away from your face while talking. 
--If it's difficult for a person to understand, find another way of saying the same thing, rather than repeating the original words. Move to a quieter location. 
--Recognize that hard-of-hearing people hear and understand less well when they are tired or ill.
--Do not talk to a hard-of-hearing person from another room. Be sure to get the attention of the person to whom you will speak before you start talking. 
--Speak in a normal fashion without shouting or showing impatience. Speaking too loudly often distorts words more.
--A woman's voice is often harder to hear than a man's, because of its pitch. A woman might try to lower the pitch of her voice when talking to the hard-of-hearing to see if that helps. 
--Speak slowly and clearly. Enunciate your words. Don't mumble.
--If you know from which side the person hears best, talk to that side. 
--It is better to speak directly face-to-face in situations where relatively diffuse lighting is adequate and lights the speaker's face. This allows the hard-of-hearing listener to observe the speaker's facial expressions, as well as lip movements to "speech read". 
--Persons with hearing impairment can also benefit from seating themselves at a table where they can best see all parties (e.g. from the *end* of a rectangular table). 
--Clue the hard-of-hearing listener in when you are going to change the subject of conversation. Doing so might avoid an unfortunate "faux pas" by them.. 
--Avoid abrupt changes of subject or interjecting small talk into your conversation, as hard-of-hearing listeners often use context to understand what you are saying.     
--If you are around a corner, or turn away, you become much harder to understand. 
--Don't walk away leaving the hearing-impaired listener puzzling over what you said and thinking you don't care. 

Many hard-of-hearing are embarrassed that they can't hear. Many avoid crowds or situations that make hearing difficult. Certain environments, such as radios, TVs, and ventilation systems are also a problem for the hearing impaired – especially for those that wear hearing aids.

Reposted from http://growinguphardofhearing.blogspot.com/