Rock Star

Those in the cochlear community have told me of the elusive rock star activation -- an occasional phenomenon whereby the cochlear implant recipient has an amazingly successful activation. They cautioned me, however, to keep my expectations low and my hopes high. Rock stars are extremely rare.

I anticipated the worst and approached my activation day with nervous anxiety. Both my surgeon and audiologist  had told me that I was an excellent candidate for success. The fact that my auditory nerve had only gone a short time without stimulation and the hearing I have left in my better ear were both prime factors in expecting my cochlear implant to be even more successful. But I was worried. The road to success is long and difficult for the majority of recipients.

They were right, though. I'm a rock star.

Click here to view Bonnie's Activation Video

My activation was less than stellar to the eye, as you can see in my activation video.
"Maybe you should've cried or something, " my husband said, "to make it more exciting." But the emotional relief and excitement inside my head was extraordinary -- speaking as the pragmatic that I am.

Not only did I instantly recognize the digital, electronic sounds as words, I understood them. Clearly an extraordinary feat. They are robotic-sounding, and distant -- as if I am listening through a long, hollow tube. It will get better, my audi told me. "You've only just begun and your program is still in 'simple' mode. It will get more advanced with each programming." I go back next week for more.

Until then, I have listening practice, and an entire suitcase of accessories to learn about and users' manuals to read. It'll take some time to absorb everything. I'm still a little overwhelmed.

Following my activation, I met with a group of very dear friends who have shared my trials and tribulations this last year - friends who've encouraged me and cried with me and laughed with me. It was a wonderful time for me and their expressions of joy and love will be a part of my story forever.

I am happy. And grateful. And excited. Excited that today has brought me restored hope and the prospect that this imperfect and oddly miscalculated journey I am on is what I choose to make of it.

"It takes courage to make a bold step, to risk the little that you have in the hope that you will find a better life. Its always easy to stay in the backwater of the pond and watch life go by and complain that you are misunderstood, mistreated or unlucky. Fly well my friend, you are a Star!!" 

(from Nancy, whom I have grown to love. She is wiser than she may know and a deep encourager of my soul.)

Cheated

A recent inquiry on an online chat site for cochlear implant recipients asked if anyone ever wished they could hear like a normal person. Usually in these forums, the Hard-of-Hearing (HOH) and Deaf culture purists resoundingly blast away at how we should be feeling proud of our deafness and stop whining and wishing to be "normal" because being deaf IS normal. The purists were there, of course, but the tone of this commentary was vastly different from what I've read in the past.

Instead of the vocal minority dominating this thread, chastising the rest of us for not embracing our deafness, a few brave souls (myself included) expressed a despondent and very real response about hearing loss and the impact it has had on our lives. It touched me deeply.

"It was a HUGE struggle for me emotionally to adapt to this, especially not knowing anyone who had any hearing impairment to talk to or who could understand what I was going through."

"To lose one sense causes one to lose part of life - you can't function 100 percent being deaf, you can adapt as best as you can, but relying on an aid is cumbersome and difficult. It would be wonderful to just hear again."

"I live in a hearing world. I struggle daily not being able to hear things. I'm lost in conversations. My kids get upset with me. I struggle teaching, and it gets exhausting trying to hear. I don't have any deaf friends, so I'm disconnected from that world. I don't know enough sign language, and neither do my family and friends, to communicate through sign. I feel lost between both worlds. So, yes, I wish I could hear."

"I lost my hearing suddenly last year. Deaf in one ear, severe in the other in a wink! Not a day goes by that I don't wish that hadn't happened. But the reality is that I cannot hear "normally" anymore. And as good as hearing technology is today, it will never be as good as my God-given hearing was."

"There are too many struggles and downfall challenges that have even caused major depression....went from a social butterfly to a fly without wings...yep, they were clipped.... And trying to accept and adapt to that is the hardest thing in my whole life I've ever had to do."

"I am glad for technology, but would give anything to hear normally again. Nothing wrong with feeling a bit cheated from time to time."

Cheated. Yes. I feel cheated. Cheated of all the things that should have been, but will never be for me -- things lost forever with my hearing. Cheated of children's voices and spontaneous laughter and music sung. Cheated of casual conversation and secrets whispered and jokes shared. Cheated of kittens' purring and birds' chirping and leaves rustling. Cheated of so many things taken for granted and not understood by those whose hearing is "normal".

On Monday, this cochlear implant inside my head will be activated. It will not be perfect, I've been told, but it's the best technology we have. It will be better than being deaf.

Better than being deaf... 

You have no idea.

Christmas Blessings

It is said that blessings come when you least expect them. I didn't expect this one.

It is Sunday. I hadn't checked the mailbox yesterday, so I looked inside today. It was chock full of cards and bills and Christmas junk mail. In the midst of all those envelopes was one from my college roommate. She had emailed me earlier this week asking for my address. She said she had something for me that she thought I would like.

That was an understatement.

Inside this particular envelope was a Christmas card beautifully drawn and colored by one Ethan Smith, one of her kindergarten students.

Inside was a note -- scrawled in pencil.

In all that I have lost, I have found unexpected kindness.  I'm honored to have a friend whose act of compassion connected me to this precious little boy. I will cherish his simple words of encouragement and his faith in things to come. God bless you, Ethan Smith. You blessed my heart. You are my Christmas miracle. 

Merry Christmas to each of us. God bless us every one.

I'm No Hero

Heroism: heroic conduct especially as exhibited in fulfilling a high purpose or attaining a noble end; showing great courage or ability; admired for brave deeds and qualities.

I'm no hero.

Though a few of my friends have called me so. They've been privy to some of my most innermost thoughts about my hearing loss. But I have a confession.

Living with hearing loss is not heroic. It's not brave or courageous or noble to wake each day, slap on my hearing aids, and duke it out in the hearing world. It is nothing to be admired. It is not a brave deed I do. It is simply what I must do.

My front is stoic -- seemingly unnerved by the day-to-day. Most people aren't even aware that I have profound hearing loss, and are surprised when they find me out.

But my behind is beaten. Weary, weakened emotions brimming just under the cool surface. Fear of the unknown. Tired and trodden. Seeking escape from conversation, company, and commitment.

That's not heroic.

I think if I am to be applauded, it should be for my resilience -- because I am neither brave, nor heroic. But I am resilient. And that is a good thing.

The Hearing Thief

Whatever is attacking my ears is unremitting. Apparently it will not stop until it has sucked all the viable hearing from them. What I had thought was an after-effect of my implant surgery is not.

My better ear is worse.

                                      The muffled, garbled sound trapped inside my head.

                                      Missing conversation, even in a quiet room. 

                                      Having to ask everyone to repeat everything. 

It is not a result of swelling or pressure or blockage. 

It is the result of loss -- persistently gnawing away at me.

I have gone down this road before. Sitting in that little chair in the sound booth while my audiologist sounds tones in my ears -- and knowing.

Knowing that it isn't a malfunction of my hearing aids. Knowing that what precious little hearing I have left is slowly slipping away. Knowing that I am powerless to stop it. Knowing that my doctor will be sitting before me in a few minutes, delivering the news that more of my hearing has been stolen from me by an unknown and invisible adversary.  And feeling hopeless. And fearful of what is to come.

We cannot stop the onslaught. We cannot throw in the towel or cry uncle. This hearing thief is a tenacious and relentless beast. It is hungry, and it cannot be sated. 

The implant will be activated in a couple of weeks. It will bring about the perception that I can hear. But it won't be the same. What's lost is gone forever.

My Mantra

I have been surprised at just how difficult recovering from this surgery has been. Other CI recipients have bragged online about how easy their surgery and recovery was. Even my surgeon's nurse said most of their patients take 5-10 days off work to recover. I took 12.

Being a veteran of many surgeries, I know that each one is unique and presents its own set of challenges. But I thought this one would be much easier than it's been. I am completing my 18th day, and it still feels somewhat like I've been run over by a Mack truck.

The lingering headache is probably the most significant thing. And the tenderness at the incision site. I still have to be careful about moving my head too quickly -- and averting the ensuing dizziness that accompanies it.  And the fatigue at the end of each day completely wipes me out. I carry Tylenol in my purse. And I take it on schedule.

I can't let it get me down, though. I have things to do, and I'm not so down-and-out that I need to take more sick leave from work. I just need to move slower than usual and give myself a little more time to heal. It'll be worth it, I know.


This is probably why my surgeon told my audiologist to schedule my programming for the 6th week, instead of the 4th week, when most CI recipients have theirs. Placing the external coil magnet on my tender head at this point doesn't sound too appealing.

I ventured out to do some Christmas shopping this afternoon. The roads were relatively clear after Thursday and Friday's ice and snow storms. But the absurdly cold temperatures stung my surgery site and gave me an achy headache. I'm not well yet.

I should have worn a hat.

Programmed

Today I had my post-op check-up with my surgeon. "Not bad for my first time!" he chuckled. (He's done over 200 cochlear implants, silly man.) The nurse removed the staples and cleaned the incision area. Then the doctor gave it a final check and handed my chart to me.  "Let's get an appointment to get you programmed," he said.

That's a strange way to say it, I think to myself. But it's true. I will be programmed. That's what you do to computers. You program them.

This little computer inside my head will be activated on December 30 at 9:00 am. The external processor will be attached to the internal component and turned on. Then my audiologist will hook me up to her computer and --- program me.

Sounds easy, yes? Certainly. Most people think that when the cochlear implant is turned on that my hearing will be miraculously restored and I will be able to hear again. Business as usual. "Can you hear me now?" (People have already been asking me if I can hear better since I had my surgery -- unbeknownst to them that the implant is in me, but it isn't on yet.)

In reality, however, activation day will begin a long process of learning to hear with the cochlear implant. I will certainly be able to "hear." It's the comprehension of those sounds that will take time to learn. For a while, the digital sounds delivered to my auditory nerve will be much like Charlie Brown's teacher's "Whaa-whaaa-whan." Slowly, over time, with many programming sessions and with much practice, I understand that my brain will learn to interpret those noisy digital impulses and turn them into comprehensible words and sounds. The brain is an amazing organ.

My post-op visit was cheerful and promising, and it gave me hope. Hope that with the healing of my surgical scar will come a healing of my spirit -- weary and worn from the past year's travails.

And to think -- I almost chickened-out on this surgery.

Blame It On Mom

It really is Mom's fault. She drummed it into my head. "Make sure you wear clean underwear when you leave the house -- just in case you're in an accident."

Depending upon how you look at it, she either ruined me or prepared me.

My fear of being in an accident and rendered unconscious and needing a paramedic and wearing torn or dirty undies is on my list of personal phobias. It warrants my need to warn potential caregivers of my medical needs should I be unable to tell them on my own. I wore a medic alert bracelet temporarily while taking blood thinners. Now I'll wear a forever bracelet telling of my cochlear implant and my desire not to have my brain fried by an MRI.

 A friend designed my very stylish and beautiful beaded bracelet. (No ugly ID bracelet for me!) I ordered a new medic alert charm online. The engraving on the back clearly states: Cochlear Implant. No MRI. 

Mom would be proud. It's a good thing.

Grief

Quiet

Muted noise

My ears just cannot hear

Unrelenting, never ending

Silence

My doctor explained that cochlear implant surgery would render my profoundly deaf ear completely and irreversibly deaf. I didn't expect it to be so extreme. The difference between profoundly deaf and totally deaf is overwhelming.

There is too much time for thinking during this recovery. Idle mind and idle hands... I find myself grieving once again.

Staples

Staples: a u-shaped piece of metal used to fasten layers of easily-penetrable material (usually paper) together.

Staples are so commonly useful in everyday applications, we don't even give them a second thought. "Hey, hand me the stapler, please. I need to staple these papers together."

However, staples take on new meaning in the surgical-recovery realm. Especially when a dozen or more of them are in the side of your head. I counted fourteen little u-shaped staples in the photograph my daughter took of my implant wound. Fourteen shiny miracles of medical technology closing the incision that holds my future inside my incredible skin-organ.

They hurt. And my glasses clank against them.

I wonder who first thought of using staples instead of stitching. I tend to think it may have been one whose sewing skill was lacking.

Significance: (I looked this up.) Surgical staples are quicker and more accurate than hand suturing and are less likely to leak blood than other suture lines. Staples carry a lower association of infection and tissue reaction than sutures. Staples are frequently used to close wounds on the scalp.  Well, now. That makes sense, doesn't it?

They may be good, but they just seem a little on the weird side to me. And in that odd, strange, Frankenstein-ian way, I feel a bit like I've woken from a drunken coma to find that someone went a bit overboard on the body piercing.

I hope it doesn't hurt when I get them out.

I Am Borg

Locutus

I know who I am. I belong to a collective of individuals who have been implanted with an advanced bionic ear. I have a miniaturized computer inside my head. It's a technological miracle.

We jokingly refer to ourselves as Borg or Cyborg, but an occasional Dr. Who fan will happen among us calling out to be recognized as Dalek. Unlike the Borg, it doesn't connect me to the Hive Mind, but it does connect me in a unique way to those who have experienced it or who will experience it for themselves as a solution to their hearing loss. I am connected to them -- I am and forever will be a member of the cochlear implant community -- a community that boasts about 200,000 members worldwide.

I came through surgery yesterday dazed and sick from the anesthesia. The surgery took longer than expected as the surgeon encountered bony structures that were in the way -- an individual anomaly he was forced to route around. He assured my husband that he has encountered anomalies before in his 200+ implant surgeries and was able to insert the implant with precision. The extra time increased the amount of drugs in my system, though, and upon waking, I found myself coughing, vomiting, and having trouble breathing. This increased my time in the outpatient recovery as well. But as the effects of the anesthesia dissipated, I found the pain from the surgery to be tolerable, sleeping in an upright position in the recliner uncomfortable, and walking to and from the bathroom labored. I ate some chicken broth and drank some tea. I only saw it once, thank goodness.

Mini-Locutus

I can take the bandages off in a few more hours, and I'll take a mirror to see how the surgery has disfigured me. It's a mix of anticipation and dread. I expect a train wreck. But like a train wreck, it is something I am drawn to look at as I try to accept what I have become. And I know from past surgeries that scars calm with time, so I will be strong and hold my tears for something more worthy of my angst.

I am not Locutus of Borg. But in a weird, strange way -- in my bandages -- I might pass as his doppleganger.

Who Am I?

This morning, I am nursing sore muscles from an injury to my chest and ribs. I've no idea what I did to hurt myself. My doctor said it's not an infection or illness, thank goodness. It won't affect my surgery on Wednesday. If I'd had to reschedule the surgery, I'm not entirely sure I would've followed through and done it.  Because of their contraindication to surgery, I am unable to take medication that would ease the inflammation that is causing the pain -- pain that is gripping much of my physical and mental strength. I have pain pills, but they make me sleepy. I can't be bothered with it right now, and I've way too much to do to sleep away my Saturday.

I have substitute plans to make for my class while I am away. And I need to clean my house and shop for groceries. Thanksgiving is coming, and though my family will be helping, I can't shake the ingrained notion that our Thanksgiving meal is primarily my responsibility -- surgery or not. I'm tired. The pain in my chest is physical, but it is affecting me emotionally, as well.  I would like to rest. But with rest comes too much time to think and dwell on what is to come. That is not always a good thing.

I am a fervid ball of stress and anxiety.

I have to admit that I am dreading this cochlear implant that my doctor says will improve my quality of hearing life. I really am. My intellect tells me it is a good thing. But my heart betrays me with a disparate sentiment.

I've been praying for something else. Not that I believe I have been forsaken by God. The cochlear implant is a technological miracle for those like me. It's just not the miracle I wanted. It's not what I desire deep within myself. I was raised to believe that God would give us the desires of our hearts. And this isn't it. It's a compromise -- a contradiction of faith. And somehow it feels like a contradiction of who I thought I was.

I know what I want. I want to hear. But who I am seems to be lost in the flurry of emotions I bear.

Wednesday can't come soon enough.

Order for Monty

"What is your first name?" the young man behind the counter asked after I ordered my lunch today.

"Bonnie, " I said.

"M-O-N-T-Y?" he asked as he typed the letters into his register.

"No, Bonnie. As in 'my bonnie lies over the ocean," I said.

"Oh. Sorry. It's already in as 'Monty' so that's the name they'll call," he said.

...I'm not the only one who can't hear.

You Should Be Worried

One of the things people tell me is that my hearing loss has made them acutely aware of their own hearing. This is a very good thing, I think.

Hearing is a precious thing-- taken for granted until it isn't there.

And even though I am a mere novice in the hard-of-hearing world, friends and family and even acquaintances ask my opinion and advice for their own hearing travails.

"I never worried about my ears popping until I heard you say that's what happened with your hearing loss," they say.

"My ears have been stopped up for a few days. I never thought much of it before because it's usually sinus, but now I'm a little paranoid, so I made an appointment with the ENT," they say.

"I've noticed that I don't hear conversation as well in restaurants, either. Maybe I should get my hearing checked, ya' think?" they ask.

"I have this whooshing sound in my ears. Do you think I should be worried?" they ask.

Yes. Yes, you should be worried.

It may be nothing, I tell them. But then again...look at me. I'm not an expert. But why risk it? It's as simple as an appointment with those who are.

Hearing is a precious thing. Cherish it. Protect it. Don't take it for granted.

I Have Tinnitus

I just found out that the whooshing-like-a-fan sound inside my ear is actually a form of tinnitus. Interesting, as I thought I had none. I have no bells or ringing inside my head, which is what I thought tinnitus was, just occasional clicking. And lots of rushing wind.

It's exacerbated by loud noise. It can become deafening (excuse the pun) in my classroom, the school cafeteria, and even in my family room if the TV is up too loud and my family is talking. It's relieved by silence --- now that's something I have plenty of.

Don't judge me. I copied this from Wikipedia: "Tinnitus can be perceived in one or both ears or in the head. It is usually described as a ringing noise, but in some patients, it takes the form of a high-pitched whining, electric buzzing, hissing, humming, tinging or whistling sound, or as ticking, clicking, roaring, or "crickets," tunes, songs, beeping, sizzling, sounds that slightly resemble human voices or even a pure steady tone like that heard during a hearing test." It is multi-faceted.

Tinnitus is an interesting, if tenacious beast.

And apparently, it's all too common for those of us with hearing loss. In the absence of sound, the brain tricks us into thinking we are hearing -- a compensation for the loss of hearing -- even if it is inside our head. It's not "real" sound. It's a phantom. [The brain is an amazing organ.]

I'm fortunate my tinnitus isn't so bad. Sometimes annoying, but mostly a non-issue. Others are not so lucky. 

What's that you say?

If you'll excuse me now, I need to kill some crickets.

A Paradox

"We have determined that the treatment is medically necessary and is eligible for coverage."

Wow.

Another insurance company wielding its power over a voiceless and faceless patient. I am held captive by a for-profit insurance company who I voluntarily submit myself to -- a board of unknown and anonymous authority that I allow to make decisions about my health care and well-being. A supremacy who I actually PAY to exert their will on me -- and the medical experts who know and care for me -- a human soul. A real person.

It's a racket, I tell you. A racket.

But if I am so paralyzingly dismayed at the gall of my insurance company, why did their determination of acceptance make my heart leap for joy?

That, my friends, is a paradox. Both absolutely absurd and absolutely true.,

Demons

Scapegoat

Mercury is in retrograde. The Old World Farmers' Almanac says we are all affected by the retrograde. What's normal becomes the opposite. Mercury's retrograde periods can cause our plans to go awry. It is often attributed to a time of loss. However, it can be an excellent time to reflect on our past. Intuition is high during retrograde, and coincidences can be extraordinary. When Mercury is in retrograde, we must remain flexible, but avoid making decisions until it is over.

Damn Mercury.

As my implant surgery draws near, past reflection is useless. My mind is forward set. And my emotions are high. My demons lie just below -- in the darkness -- where Mercury rises.

To submit myself to cochlear implant surgery feels like a resignation of the inevitable. There will be no miracle for me. The surgery will render my cochlea permanently and irrevocably damaged. I am not a hearing person anymore, and I never will be again. As "good" as current hearing aid technology is, it will never be as good as God-given hearing is. Or was. I am and will forever be  -- deaf.

Some people would say to me, "But a cochlear implant will be your miracle." I'm not sure I can agree with that. In some ways, I think it will be like a gift -- a restitution of sorts --  a reparation of something lost; equivalent, but not equal. It's a matter of "perspective" -- a term I've heard thrown around a lot lately. That perspective depends on which side of the line you stand on, however. And I stand on the deaf side.

There are well-meaning friends who try to encourage and understand what I am going through. But they have no idea what it's like from my perspective. I hate advice from people who don't know, especially when they're telling me how I should feel. But I hate the "my [insert any name of any random acquaintance here] who [wears hearing aids/has a cochlear implant] and they LOVE it" people more than anything else.

I usually just smile and nod, but I really want to punt them out the window.

It's Mercury, I know. When Mercury is in retrograde the human psyche is dark, so other senses are heightened. We feel extra sensitive here. We notice things overlooked before. We slip-up, make mistakes, and misread others' words.  And we shine a light on our demons.

Mercury retrograde is a scapegoat, I think, for our human frailty.

I don't believe in astrology. But I sure am glad my surgery is scheduled when retrograde is over.

I Ordered My Cochlear Kit Today

...and it felt a little like Christmas.

"You can pick six things to go in your kit." My audiologist was explaining the procedure and recommending the things I should probably get -- a good thing since I have no clue whatsoever.

"You will get a second processor, so you will have a back-up -- one will have the accessory port and one won't." The N6 has wireless capability, but it is still under development and hasn't been released to the public yet, so having a port to plug in the sundry cables is important right now, even if I don't think I'll use it -- I may change my mind later. The processor with the port will be wireless, too, when the technology is ready, but the one without the port is a little bit smaller and lighter. I might prefer wearing it when I am not using the accessories. It's important to have a back-up processor, too, in case one fails or gets damaged or lost. I won't have to walk around deaf while waiting for it to be repaired or replaced.

"You will get two remote controls. The full capacity one and the pocket-sized one." Both make changing programs and settings convenient and simple. They're also important for doing something called "synching." (I have sooooo much to learn!)

"You should get the accessory cable" to listen to things like my phone and iPod though my processor.

"And snug fits" for times when I am doing things that could cause my processor to fall off. Like hiking. Or dancing. Or bending over to tie first graders' shoelaces.

"And I think the lapel mic is important for those one-on-one listening times with your students." I will be able to hear my students directly in my processor while I am testing them or when they are reading to me. Could be cool, I think. I can use it on dinner dates, too, if I can talk my husband into wearing it. Hearing his voice in noisy restaurants has become quite a challenge.

"That's six," she finished. Other things can be nice and fun to have (like the colorful processor covers if I want to pimp my CI), but they are usually less expensive and I can purchase them through the Cochlear Store if I want them. So many things. So many, many things.

Then she adjusted my hearing aids for the higher frequencies of 6- and 7-year old voices that have been giving me grief, and added, "When I turn on your implant, I'll make your BiCROS hearing aid just a regular, old hearing aid for your right ear." I got a screeching feedback in my right hearing aid at that exact moment.

I think its feelings were hurt at the prospect of being regular. And old.

Thank Goodness for Little Ears

"Here, Mrs. Stone," a student said nonchalantly as she handed me the telephone handset. (It was the office calling.)

I had divided my students into reading partners to reread this week's story selection together while I sat with 3 students to provide extra help and instruction. The indistinct murmuring of 23 little reading voices easily drowned out the telephone's ring. And even the satellite handset which I placed near my reading table was inaudible to me.

My first instinct was to ask her why she had brought the telephone to me. Then I heard it ring. I've no idea how long the caller had waited.

Teaching is full of challenges every day -- under any circumstance. To those of us with hearing loss, those challenges can seem larger-than-life. But sometimes, they're hardly noticeable, if at all -- like the telephone.

It used to be so simple.

Thank goodness for little ears whose perfect hearing can hear when my ears cannot.

You Can't Lip Read a Puppet

No matter how hard you try. No matter how hard you concentrate. You can't lip read a puppet.

That's the truth.

My first graders watched a puppet show about bullying today. They laughed and giggled and yelled, "STOP! I don't like that!" Their smiles and laughter were unrestrained and enthusiastic. To say they enjoyed the show would be an understatement. They drank it in. It was intoxicating.

But I discovered that puppets are poor subjects for lip reading. To my weary, hard-of-hearing ears, the voices of the puppeteers were not only muffled, they were pretty near impossible to comprehend at all through the backdrop of children's laughter, the puppet stage, and the black hoods the puppeteers wore to hide themselves while they acted in their puppet persona. You can't lip read a puppet. It's impossible. They don't have lips.

So I chose to watch my students instead. What joy it must be to be 6. And to hear. And to watch a puppet show.

Resistance is Futile

I have come to the realization that my life revolves around a little zinc air battery. Size 312 to be specific. No bigger than a chocolate chip.

It's true. I count the little fuel cells in my battery pack nearly every day. I check and double check my battery stash before I leave for school each day. I have stashes everywhere, too. I keep a pack in my wallet. I keep a pack in my desk  at school. I have spares in my car's console. I have more on my nightstand. I buy them in bulk.

It's an obsession, I think. I live in fear that the low battery tones will sound in my hearing aids and there will be nary a cell to be found.

Oh, the dreaded tones that startle me from my daily business and routine with their long, descending "bing, bing, bing" that alert me to change my batteries. It's a tenacious beast, it is. If I don't drop everything I am doing and change them, it will continue to nag me every half hour until I do, or until they die from neglect. And the beast rears its head every other day.

But it's not the batteries that are most annoying. It's the little orange stickers that must be peeled away to activate them. Somehow, some way, they manage to stick themselves to everything but the inside of my trash can liner. It's rather like those little orthodontic rubber bands that used to shoot out of your mouth at the most inopportune times as a braces-wearing teen and got lost in the neverlands of your room, only to resurface stuck to the bottom of your foot as you were dressing for school.

I find those pesky little orange tabs everywhere. On my car seat. Stuck to my bed pillow. On the seat of my pants. On the cat's tail. Seriously. How DO those little buggers bug me so much?

They are winning, I can tell. And they are consuming my time and attention. We, the hearing-aided, are battery-operated people. Yes, we are Borg. Resistance is futile.

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. ;)

Happy Anniversary to Me

It's been a year since I lost my hearing.

August 14, 2012. Just before 9 am.

One minute I was leading a group of teachers in a training for the common core curriculum. The next, the hearing in my left ear was gone. Just like that. No warning. No cause. Just gone.

I thought my ears had stopped up - a common side effect of my chronic sinus infections. Nope. It was far worse than that.

"Your ears are not 'stopped up'. You have sudden sensorineural hearing loss. Your left ear is profoundly deaf, and your right ear has sustained moderate-severe loss. They are completely normal except they cannot hear, " my ENT doctor told me as I sat speechless in that chair. "It is permanent. Your hearing will not come back." I'll never forget those words.

It's been a year of regrets and what-ifs and why me's -- a year of finding new ways to do things I had taken for granted; tears of deep anguish and determination; utter defeat and the stark realization that my life has forever changed. It's been a year of discovering how strong I can be through adversity...and how weak.

I am a new person, different than before. Stronger in many ways, I think, and yet I am weak. I still cry when that fragility surfaces unexpectedly and I find myself lost, frustrated, and confused. I'm learning not to be so vulnerable to what the hearing world throws at me. I am deaf in one ear. I am hard-of-hearing in the other. I am hearing-impaired. I can acknowledge that, if not accept it; a resignation that what I have lost will never be found again.

But I am not powerless. I will find my way in this, as I have found my way before. I continue to trod into unfamiliar territory.

I'm making sense of my hearing loss and I'm seeking peace with it. Happy anniversary to me.

I Still Feel Like Crying

My school district has adopted a new phonics program and has required all of us to attend an inservice this summer to learn about it. I went today.

I have to tell you - I hate programs. To me, it's a vote of no confidence in my expertise as an education professional and a reading specialist. So the district hands me a commercially prepared, "teacher-proof" program and mandates that I use it. I hate that. And I hate that our district adopts a new and shiny program every two or three years, so we have to learn and learn programs again and again. It's a grand money-making scheme for the developers and vendors of these "programs". So I'm already unhappy about taking an afternoon of my summer to attend a mandated and uncompensated training to learn about something I could have figured out myself by looking at the teachers' manual.

The training began rather harmlessly with one of those "tell me about yourself" introduction activities. I hate those, too. People never speak loud enough, and when you are almost deaf, it's pretty much an exercise in futility. If I'm giving you my afternoon for free, please cut the fluff and let's get on with it. I really don't know who designed the current and accepted format of teacher in-service, but I think that person should be punished severely for developing such a lame and tiresome model.

Then the demo of the computer software began. This is what we really came for. "What will our students be doing in this "new" program?" We fired up our laptops and keyed in the username and password to begin the demo. I knew I was in trouble when I couldn't hear anything with the headphones. They were a pretty cheap, little headset that sat on the ear, far away from my hearing aid microphone that sits behind my ear. So I took them out and opted for the laptop microphone. The trainer nearly tripped over herself to get to my place and plug my headphones back in. I explained that the headphones were't equipped for use with my hearing aids and that I had unplugged them on purpose so I could hear the demo. She apologized for her assumption of my computer ignorance and gave me one of those goofy embarrassed looks I've become so accustomed to since I lost my hearing.

People really don't know how to respond to me.

Then it began. Not all at once. But as the demo continued, I began to realize that the headphones were the least of my problems. The barrage of phonetic sounds were blasting from the speakers at what I perceived to be a rapid-fire pace. My response to this assessment would determine my placement in the "program."

The first sound I was given was "ch." So I quickly and confidently clicked on the little square marked "ch." Wrong. (It chastised me with a buzzer and highlighted the correct sound of "th.") What? While I'm adjusting to my surprise at missing the first sound, I missed the second one for not responding quickly enough. So on to the third sound, which I wasn't sure if I heard or not, so I began looking for a "repeat" button. BZZZZ! (There was none.) I got the next one. "Th." Nope. BZZZZZ!  Now I wasn't confident about anything I was hearing.

I stopped and raised my hand to inquire about what the company was doing to make their shiny, new program accessible to students who wear hearing aids, are hard-of-hearing or deaf, or who may have processing problems that would make discriminating isolated sounds as difficult for them as it was for me. "There really isn't anything for them in this program." Phonics is based on hearing and sound discrimination, after all, I thought. I am a reading specialist. I knew the answer.

I faked an important text message so I could make a graceful exit before I burst into tears.

My knowledge of how children acquire reading did little to prepare me for this experience. I had learned in my reading master's classes that only about a third of our students can learn to read using phonics. The rest require an eclectic approach that uses many different approaches.  Had I completed the demo, I would have been placed in the beginning reading level and forced to endure lessons specifically designed for "my level" -- lessons that would supposedly teach me things it thought I didn't know. Mind you, I can understand those sounds in words and even in sentences using meaningful context, it was the isolation of the sounds that was the problem, and those sounds are missing from my ears because of my hearing loss, not because I don't know them. THIS assessment was neither meaningful nor representative of my knowledge of words and sounds. I would be labeled: BELOW-LEVEL. The words screamed inside my head.

It hit home how frustrating it must be for those two-thirds of my students who are forced to learn to read through these "programs." They will be labeled failure to thrive and forced into dull remedial reading programs based on more and more phonics simply because their brains aren't wired for isolated sound discrimination. It is wrong. And it marginalizes who they are, not only as readers, but as human beings.

It's been four hours since the training ended. I still feel like crying. I'll remember this feeling. And I'll use it to make myself a better teacher...and a more compassionate being.

As Normal As It Can Get

"You are definitely a candidate for cochlear implant."

I had been waiting to hear those words. But when my doctor said them to me yesterday, my heart skipped two beats. I qualified for candidacy. It was determined that I need a cochlear implant and would benefit from its use. I can begin the process of getting an implant for my deaf ear. Now begins the back and forth negotiations with my insurance company, the countless appeals, and the necessary medical tests before my surgery date is finalized.  I'm hoping it will come sooner than later.

"It'll be like learning a new language," my doctor told me. "And it won't be easy. It won't be hearing as you are used to hearing. It is digital. It is electronic. You'll have to teach your brain to understand it. But I think you are highly motivated to learn and will be able to do this." 

He explained it would be a little like dropping me in the middle of France, where I didn't know the customs or language, and asking me a few days later how things were going. I'd be a mess, I'm sure. But after a few weeks, I would have learned how to navigate my neighborhood and probably learned some important phrases to help me get around. "If I checked on you after 6 months," he continued, "you will probably have learned some social language and have friends who you speak casually with every day. After a couple of years, I wouldn't be able to tell you from a native." That's what using a cochlear implant is like.

I admit, I'm a little giddy about it. I came home and tore open the information packet he gave me. It came with a little plastic model of the external speech processor for me to "try on for size and fit." I put it on. It was BIG. And it was a big deal. I was consumed by emotions of nervousness and excitement while being completely aware of an enormous sense of apprehension. It's permanent. There won't be any turning back or changing my mind once it's done. I couldn't shake the dread of how the magnet inside my skull would attract the undead to me when the zombie apocalypse occurs!

I will still be deaf. It is not a cure for my deafness; it is only a tool to connect me to the hearing world -- a tool that will require many hours of practice and rehabilitation. But it is steady and consistent, my doctor had told me, unlike my own hearing, which seems determined to keep me guessing. 

Most people think the implant restores hearing. Turn it on and "click!" You can hear again. It's not quite that easy, I've learned. Without the processor, I will hear nothing. With the processor, I will hear this:

https://www.youtube.com/watch?v=SpKKYBkJ9Hw&feature=player_embedded#at=56

Nope, it won't be easy. But with time, it will improve, and I will have a restored sense of normalcy in my hearing world. As normal as it can get.

Ten Little Decibels

Ten little, measly decibels. That's what I lost in June. It doesn't sound like much, does it? But it has sent me reeling.

Ten decibels means that conversation in a restaurant must be twice as loud as before for me to hear and understand. It means that conversation at home must be four times as loud for me to hear about your day. It means that birds must chirp eight times as loud for me to enjoy their song. It means that leaves must rustle sixteen times as loud for me to know they've blown past me.

I knew I hadn't recovered all of the hearing I'd lost from my latest SSHL event because I was struggling to understand my husband and daughter at home, but I'd thought it was better than that. Ignorance was bliss. Knowing now about those ten little decibels is blowing me away.

Before I knew about decibels and cochleas and speech bananas, ten little decibels would have sounded negligible to me; but now it makes all the difference in the world.

I'm Stronger Than That, Right?

If it's not depressing enough to miss a third of casual conversation, my evaluations for cochlear implant approval were not "bad enough". Last week I scored 66% in speech recognition with both aided ears -- too high for the criteria set forth by Cochlear for cochlear implant candidacy. They asked to reevaluate me with two more tests. One was a test of my "deaf" ear with a hearing aid that amplifies. My BiCROS hearing aid only transmits sounds to my better ear's hearing aid. The second evaluation was to be performed at the end of the day to determine if aural fatigue played a role in how well I hear and comprehend speech.

I was a doubter, I must admit. I couldn't see how taking the test a mere 4 hours later than before could make much difference. I'm stronger than that, right? So I plunged into it head-long.

"Don't sit at home quietly waiting for the test," my audiologist instructed me. "Get out into some noisy places."

If it were not summer vacation, my classroom would've been the perfect place, especially if I spent a few minutes in the cafeteria during lunch. But I had to come up with some creative alternatives to my work routine. I enlisted the help of a friend, who took it as her challenge to help me fail my tests.

It felt a little like being taken hostage. She didn't warn me about any part of her agenda. She just told me to remember that everything she'd planned was for my own good. During the car ride, I was inundated with an open sun roof, a blaring radio, and quiet conversation. I had to strain to hear. We arrived for lunch in a noisy restaurant just before peak lunch time. Since this has always been one of my listening challenges, it was the perfect starting point.

Our second stop was a movie and pet companionship at her house. Added to the extra loud, action movie was romping time with three large dogs in a room with tiled floors and high ceilings. (No closed captioning on the movie!) She turned on her clothes dryer for added ambiance. We talked through the movie, which was really only on for background noise. The dogs were perfectly behaved, though -- better than normal, she said, and didn't bark much at all, dang-it. I tried not to use lip reading to help me. I'm not sure, but I think the windows were rattling!

The coup de grace was our final trip to a place called Bounce U, an indoor play place for children that features all manner of inflatables for kids to play in. It was deafening, for sure. (We had to borrow her friend's kids to get in!) I could tell my comprehension during conversation was suffering.

Arriving at the doctor's office with an almost-migraine headache and feeling aptly overstimulated, I scored an expected 0% in my deaf ear, even with amplification, and a mere 48% using both ears.

"This is good, even if it seems bad," my audi said. "They like it when it's below 50."

I was pretty amazed. During the school year, I came home exhausted every day - flopping onto the couch where I often fell asleep for two or more hours and then regularly slept another 7 -8 hours each night, only to wake the next morning to the same repeating and grueling routine.  I plugged on day-in-day-out, though,  not wanting to be a wimp, and not wanting to admit to my stubborn self that my hearing loss was kicking my butt. I'm stronger than that, right?

Nope.

Listening is seriously hard work when you must listen through one ear that only has about a third of its capacity intact. Aural fatigue is real and affecting. And today I learned how much it is impacting me. And I decided I should give myself a break. It's okay to give in to the fatigue and admit that I am not as strong as I wish I were --and to retreat into quiet solitude to rest. But it does help to keep a bottle of Tylenol close, and to take a couple...or three.

Hey! I'm Still Here!

Today I felt depressed. It's been coming, I knew, and I've been trying to ward it off. But some days, it just gets the better part of me. It was one of "those" days for me.

I could tell that the depression was about to rear its ugly head. Last week, I attended the NEA Representative Assembly. Being in a noisy, crowded assembly hall with over 10,000 delegates, staff, and guests was pretty overwhelming. I had to rely on the closed captioning on the jumbotron across the convention hall. Our delegation was seated behind an aisle, so there was a continual stream of people walking between me and the screen, not to mention the people who stopped to greet our association officers or those who just stood to stretch their tired legs in the aisle. I never complained.

It was exhausting.

Trying to listen and maintain attention on those little words that scrolled across the screen took an incredible amount of brain power. I wasn't mentally prepared for how hard it would be. Side conversations among the crowd made it even more difficult to focus. When the people seated next to me asked me questions or made comments about the business, I had to lean in and have them talk into my better ear. And I had to ask them for clarification many times myself.

Four of the nights, I ventured out to dinner with others. I've become adept at smiling politely and nodding during dinner conversations. I actually hoped that no one would talk to me or ask me anything for fear that I would misunderstand or have to ask them to repeat themselves multiple times. It's embarrassing. And it's tiring. Hell, I even laughed appropriately when others did. For all accounts, everyone at the table assumed I was enjoying their stories and jokes. I'm that good.

But I was lost. 

Last week felt a bit like treading water in a roaring river -- struggling to keep myself afloat, but being swept uncontrollably downstream where I knew I would eventually be hurled over the waterfall. 

The quiet of being home again is a mixture of relief and regret. My weary senses can rest. And I can over think the emotional grief of things lost along with my hearing. 

I'm tired of being present in body, yet being totally alone.

It is Time.

This new business item from the National Education Association Representative Assembly's New Business makes me very happy. Not only because it addresses an important and forgotten aspect of deaf and hard-of-hearing medical care, but because it helps the many students, friends, and coworkers I know who could improve their quality of learning and living if only they could have afforded the exorbitant cost of hearing aids.

Many insurance companies have for-purchase policies that provide coverage for eyeglasses and contacts, but have neglected adding coverage for hearing aids. This is an all too common problem for the millions of people --in our country alone-- who suffer from some form of hearing loss and who continue to suffer the effects of hearing loss because of poverty or other financial burden.

I am fortunate that the insurance plan my husband's company provides paid for 80% of my hearing aids. If I had been on the state insurance plan provided by my school district, the entire $6800 price tag would have come out of my own pocket -- a cost that would have placed a large financial burden on my family and me -- simply because I suffered a medical condition that made it necessary for me to have them in order to work and survive in a hearing world. It isn't a luxury item for me. It is a necessity, just as my eyeglasses are a necessity for my near-sightedness.

That insurance companies have chosen not to pay for hearing aids is a tragedy. I am proud to be a part of a collective body of individuals who believe it is important to correct this misaligned policy. It is time for change.