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.