Sunday, July 1, 2012

Beware: I'm back.

Moving forward during my recent family vacation.

I have just returned from vacation.  Hours ago, I arrived to my home after a week at the beach with my family.  That was one vacation.  The other break, I realize, is the one I’ve allowed myself from the blog.  I feel like I’ve had a lot to say, but sometimes when there is so much going on, it is difficult to focus on a single topic.  Instead, I’ve kept my feelings to myself, a decision that has probably stifled my healing as I come to terms with life with the cochlear implant. 

Much has happened since I’ve last written.  I’m now a contributing writer for two business newspapers and loving it.  I’ve also started another job, working three days a week as a community outreach coordinator for a nonprofit organization.  The professional opportunities that have come following my surgery not only allow me to do what I love,  but I also have much more flexibility than ever before, enabling a greater balance between family and work.  Life should be good, and often, I’m stubborn and don’t want to admit that life isn’t as great as I thought it would be at this point post-surgery.  My hearing should be improving day by day, little by little. 

The truth: I don’t see much improvement, and I’m disappointed by my inability to provide a happy ending to my journey.    

I had a week or so when my optimism was growing.  A few friends told me they noticed a difference in interacting with me.  I felt as though I was getting closer to my goal of understanding noises around me, even if I was slowly crawling to get there.

I’m not sure what has changed in the last three weeks or so, but I feel like a failure.  I’ve met with the audiologist, and she knows my concerns.  I can hear the sounds, but I still can’t make sense of them.

This past week, my family rented a condo in Ocean City, Maryland with my husband’s siblings and parents; at most, we had a total of fifteen people in the house at one time. This vacation had been planned for months, so I knew prior to surgery that two months after, I’d be at the beach.  With so many recipients telling me that they had seen such drastic improvements in three weeks to a month to two months, I was certain this vacation would be amazing. 

All my life, I had struggled at the beach.  While the ocean breeze and the waves crashing is relaxing background noise for most people, for me it was always the only noise I could hear, masking the speech of those around me and prohibiting me from participating in casual conversation unless I gave my utmost concentration, which of course, I always did, leaving me exhausted and completely un-relaxed.

I had envisioned this vacation at the beach to be different—easy and breezy, for once in my life not having to think about hearing. 

Unfortunately, I knew on the first day that I was overwhelmed with all the voices under one roof.  I would turn down the volume but it was still loud, and the cacophony of noise remained chaotic and unclear.  Hearing-wise, it wasn’t what I had hoped, but also comfort-wise, I was having difficulty.  We were fortunate to have beautiful beach weather, but it was HOT, and the processor sat on my sweaty head uncomfortably, leaving me itchy and annoyed, and since I’m unable to get the processor wet, I had to be particularly careful around water.  Additionally, my ability to put my hair up in a casual beachy ponytail was not so easy; besides worrying about my physique in a bathing suit, I felt insecure about the mini-computer connected to my head.  Not exactly the summer look I was going for.

Bitter emotions bottled up inside me until Day 3 of the vacation when midday I started to feel sick.  My stomach hurt and my head ached, and I excused myself to lie down in my dark, air-conditioned bedroom.  Jeff came to check on me, questioning if I had “too much sun.”  I realized my body was responding to the bitterness I’d been holding in. 

Quietly, I admitted what I had been thinking for awhile: “I shouldn’t have got the surgery.”  There.  I had said it.

Jeff rubbed my back for a minute as I drifted to sleep, actually feeling relieved that I had finally vocalized my fleeting thought, hoping that it would now go away, allowing gratitude and perseverance to guide my thinking from that point forward. 

After the declaration to Jeff, I  was able to enjoy the trip, even with my crappy hearing and the itchy processor.  I decided not to focus on it, and just do the best I can.  Most of the time, that meant avoiding conversations and just relaxing on my own—not such a terrible thing at the beach.  And sometimes, I didn’t wear the processor at all (I know fellow recipients and my audiologist will not agree with that move, but briefly, ON VACATION, I wanted to forget it existed).  Temporarily, I coped.

We arrived back home from Ocean City late Sunday afternoon.  Though I had worn the processor most of the day, my batteries had died, so I had taken it off.  After dinner, I was talking with my son, Colin.  With no warning, there stood my husband, the telephone in his hand (I hadn’t heard it ring).

“It’s for you,” Jeff said.

He was holding the cordless phone.  I have a captioned telephone (not great, but it’s better than nothing), but if the cordless phone is picked up first for an incoming call, the captioned telephone won’t work.  I looked up at Jeff, panic enveloping me.  I mouthed to him while pointing to the phone, “I can’t.”

Jeff looked at me with a “What the heck am I supposed to do now?” look on his face, and I realized that I was putting Jeff in an uncomfortable position.  But I was pissed—what was he doing?  He KNOWS I can’t talk on the phone.   The fact that he even told a person to “hold on” so I could come to the phone... I was enraged to be put in such a position.  I scanned my brain for all the possibilities of who might be calling… will it be my boss?  A professional call of some kind?  A mom calling for a play date?  Maybe the college alumni association?  A writing assignment?

I say hello and someone- a young girl, I think- says, “Hi Pamela” and then a few more seconds of monologue.  I’m able to understand nothing.  Not a name, not where she’s calling from.  And Jeff is watching me… looking at me as once again, even with a bionic bump in my head… I stand there, completely lost, and totally failing at a task almost anyone can do.

I ask the girl to repeat herself, while the anger, sadness, and pity that started on Day 3 in Ocean City returns and consumes me deep inside my rib cage and I know I’m going to cry.  She repeats herself, I still get nothing, I probably apologize, and eventually Miss Mystery Caller realizes this isn’t going to work.  She says she’ll call back another time, and I reluctantly agree, wondering what kind of message or opportunity I just missed.

I feel the hot, fast tears about to spill and I look at Jeff, all the more furious that he put me in that vulnerable position. 

“Don’t ever do that to me again,” I say while walking past him to go to the bathroom, away from the phone, away from my husband and kids, so I can sit and cry, alone.  No one understands this, not even Jeff.  I. Am. Alone. 

I cry, sobs heaving out of me, and the more I cry, I’m realizing the more my right ear- the implanted side- is ringing its loud, squeaky post-surgery squeal.   According to my audiologist, tinnitus (ringing of the ears) is a common side effect for cochlear implant recipients, and is usually stronger during times of stress.  Surely, I’m stressed now, the “Why me?” feeling clouding every other reasonable thought that enters into my consciousness.  Why me? I hate this.  I hate you, stupid implanted ear and your loud ringing.  I hate you, Brain.  Why can’t you figure this out?  WHY ME?  Why do I deserve this? 

As I write about it, I realize my reaction is over-dramatic.  It seems a bit silly that one phone call could make me feel so stupid and so inadequate. 

But I was due for a sob-fest.  The truth is I’ve been disappointed since the first time I heard with the implant, now over two months ago. I'm tired of saying, "It will get better."  When?  When will it get better?   It doesn’t help that at my last appointment, my audiologist informed me of a new procedure likely to be approved in the next year known as the “hybrid” implant.  This implant retains low frequency normal hearing (so if I had it, I wouldn’t be deaf on one side), but aids in the mid to high frequencies; in fact, I was informed, I would be the perfect candidate for such a procedure. 

I tried not to let this comment sink in very deep, maybe because instinctively I knew that if I focused on it, bitterness and anger would surface.  I knew of the hybrid possibility before I opted for implant surgery, but when I inquired about it early this year, I had been told it might not become a reality for five years or more. In the position I was in, I wasn’t ready to go five more years not hearing.   The week after my surgery was when my audiologist went to a conference, learned of the success of hybrid recipients during the device’s trial period, and was informed the procedure was likely to be approved much quicker than she realized. 

I’ve kept my disappointment silent in the two weeks following this conversation because honestly, what can I do?  Who knows if the hybrid would even work for me?  Second, if I scream and cry and mourn the fact that I didn’t wait for the hybrid, my natural hearing isn’t going to magically reappear in my right ear.  It’s GONE, leaving my right side eternally dependent on a processing device hooked to a damn wire to my ringing head. 


And this post, folks, is why I haven’t blogged in so long.  If I provide readers with a “glass half full” optimism, I feel as though I’m being a big phony baloney.  Second, I have a loving family, a roof over my head, I’m healthy, and I’m still NOT DEAF…  there are greater worries in the world, after all!  A big part of me wants to slap me in the face and say, “Girl.  Get over yourself!”

Maybe sharing with you will allow me to do just that.  Thanks for listening.


  1. You are very brave. You are brutally honest. I so wanted this to work for you.

    1. Thank you. The truth is, sometimes I have to get the bitterness out of my system to recognize the implant WILL work for me someday. Writing an angry post was exactly what I needed to do to pick myself up and continue to plug on. The bitterness I felt yesterday is mostly gone, and I am planning a gentler follow up post. Thanks for commenting!

    2. Dear Pam,
      Life is messy, complicated and unfair, and doesn't always give us the happy ending that we so wish for with all of our hearts. I'm so sorry that you are struggling so much. You have every right to these feelings. I hope they don't consume you and rob you of your beautiful joy for your life and family. There are peaks and valleys, and you are in a valley, but you have the love and support of your family and friends to help you through this. Lean on them. Everyone is rooting for you. Love, Diana Wms

    3. Thank you Diana. When I wrote this post, I was deep in the valley. I'm slowly climbing out. Thanks for your encouraging comment!

    4. Keep climbing Pam, keep climbing! {Hugs} - Diana

  2. I wish I could write the correct words that will set you to smiling. All I can say is everyone has a bumpy road. It is quite okay to be sad, upset, angry and bitchy. So now, you are here, this is now and you are moving on. That is brave too! Some folks just stay in one place and don't realize that they are actually moving backwards...remember the Red Queen (Alice In Wonderland).

    1. You're right-- I am definitely not staying in one place. Thanks for the uplifting words!

  3. Pam, I love that you are brave enough to write this. It has been a little disheartening that everybody talks about how much their CI has changed their lives when my experience has been mediocre so far. You've written the truth about your experience and that is every bit as important as reading about all the people who have had nothing but good experiences. Thank you for posting this and I hope that your audiologist can figure out how to help you hear better very soon. Thinking of you!

    1. Teresa, my friend,
      Maybe you can relate-- I don't deal well with MEDIOCRE. I admit I am a perfectionist and overachiever, so the fact that I haven't aced this whole CI thing continues to irritate me. Looking forward to sharing our experiences soon! Thanks for reading and commenting!

  4. Hi Pamela,

    I came across your blog completely by chance. I volunteer with the local deaf community here in Singapore from time to time and I know a number of people with cochlear implants, but never really understood how they worked! I've thoroughly enjoyed reading about your experience. All the best with the rest of your CI journey! :)

    1. I'm glad you stopped by, Celine! Your volunteer work must be very rewarding and appreciated by many. Please feel free to share the blog with your CI friends. I'm always learning from other recipients. Thanks for commenting!

  5. Hmmm...I probably shouldn't be commenting, but am browsing blogs for activation experiences. I just got my bilateral implant 2 and a half weeks ago on my better ear, and am really anxious about how it will go (my better ear was at 50dB loss all across, until 4 years ago it progressed to a 90dB loss)

    However, I wanted to share the experience of my implant on my worse ear. I have been deaf in my left ear (120dB loss on all frequencies) since I was six. After 18 years of deafness I got a CI. I heard nothing on the activation date. In fact, all I heard were buzzes and beeps for the first few months. I didn't notice improvement until months later. However, now at 2 years, I realized how much I have improved. My better ear has been shadowing my left CI ear for too long. Since the surgery, I've only been wearing my CI and I am surprised how much I can understand -- I can communicate with those around me, I can talk on the phone (well, with my grandmother and my long-term boyfriend...but *still*). I didn't have any milestones. I never wore my CI alone prior to having the bilateral surgery.

    I just wanted to emphasize that it will get better, excruciatingly slowly for some people (I was despairing a year ago that this was a mistake, and now I'm rejoicing that its the best thing I've ever done and that it is a miracle). :)

    I hope things get better for you!

  6. Hi Julia,
    I DEFINITELY think you should be commenting and I'm glad you stopped by! Thanks for sharing your story.

    Prior to my surgery, I spoke with 2 CI recipients. One was easily chatting on the phone- I kid you not- ONE WEEK after her activation! The other person claimed it took her a month-- still not a very long time after a lifetime of not hearing. So I had two models of remarkable CI success I was looking to for guidance, and I was STILL hearing nonsensical noise two months post-surgery.

    Everyone's journey is different, I've learned, but the good news is CI users keep moving forward even if it's at an excruciatingly slow pace.

    Thanks for the encouragement and be sure to read my other posts! Things are improving slowly but surely. Best of luck to you!