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.