Monday, April 9, 2012

Fears, tears and a final song

A very fast week has passed since my first post, and at this point, my surgery is nine days away.  NINE DAYS.  The initial high I experienced after sharing my story  is quickly transitioning into a feeling of sheer terror.  This is really happening. 

I am currently dealing with a mixture of bittersweet emotions.   One moment, I picture myself going on vacation in June, hearing the whole sound of the ocean with my family, and feeling a sense of joy and gratitude I didn't know existed.  Another thrilling idea is that I won't have to turn my head to look at people... how amazing to cook dinner, and not have to stop chopping in order to look and understand what my child is asking me!  Thoughts like these make me want to drop everything to get the surgery RIGHT NOW.

Then there are other situations I visualize that leave me incredibly anxious and worried.  One of the scenarios I keep running through my mind is when I first wake up from the surgery.  I'm preparing myself to hear silence, as there is a good chance I will officially be deaf in my right ear post-surgery.  It is not a guarantee that this will happen (some of my residual hearing might remain), but there is no way to know for sure. 

Let me explain the reality of the surgery.  When I currently hear through my right ear, sound travels via hair cells in my cochlea.   Since I don't hear well,  I imagine most of those cells are already damaged and/or nonexistent. Still, some must be healthy and functioning which explains how I can hear about 20% of sounds.  For the implant to work,  the surgeon must swirl a wire through my cochlea, all the while, potentially damaging the good hair cells, and possibly eliminating my ability to hear any sounds naturally through that ear. Of course, with the implant, after recovery,  I should be able to hear much more than 20%, but the reality is that I will be dependent on the implant and processor for quite possibly the rest of my life.  It is a terrifying concept.

Another scary question: What will the world sound like with the implant?

After my surgery, and a few days of recovery,  the implant will then be "turned on" or "activated" by my audiologist.  I've read several accounts of how other implant recipients describe the activation process, and I've learned it is a very individualized experience.  Some people hear right away; others have to work weeks, or even months to really hear well.   Some recipients describe the activation process as a series of loud beeps and static, maybe a few pops here and there, with voices initially sounding like robots or Mickey Mouse.

The Mickey Mouse voice description is tough for me.  I've cried a lot over that. 

I can't help but to choke up thinking of my children's sweet voices suddenly turning into robotics-- the thought alone was enough to make me question going through the surgery at all.  Right now, I can recognize Colin and Claire's distinct voices;  they are precious to me, even if I don't usually make out the words my kids are saying.  Other recipients have assured me that while it is hard to explain, my brain will adjust, and Colin and Claire's voices will become "normal" in time.  Still, I feel like I'm saying a final goodbye to those voices next week.  I keep questioning if my brain will remember the pre-surgery versions of them calling me Mommy.  It's tough to think about.

I also fear how I will make sense of music.  So many people have expressed excitement that I will be able to enjoy music with the CI, which is a strange concept to me because I have TRULY enjoyed music as a hearing impaired person.  For example, I've been dancing for as long as I can remember... probably since I could walk.  Some of my best performances include competing as a hula dancer at the age of 5, an epic solo performance to Janet Jackson's Rhythm Nation in fifth grade, choreographing a huge group routine to Debbie Gibson's Electric Youth, and several age-inappropriate routines during my middle school years (Giving Him Something He Can Feel at a Bat Mitzfah?  Yes, that was me.  I'm so sorry, Mrs. Leviner.)  As an adult, I'm still dancing.  I consider myself quite skilled at Zumba, for example, and when a tipsy lady at a wedding wants someone to join her on the empty dance floor, my hand is the one that she grabs.   I am totally cool with this; I love to dance.

Me and my happy place: The dance floor


If you haven't seen me dance, then maybe you've seen me sing...   Give Me One Reason by Tracy Chapman, Melissa Etheridge's Come To My Window, What's Up by Four Non Blondes... I  have my karaoke performance favorites and I am not at all hesitant to share my vocals with the world.  I am also very good at recognizing songs, strangely enough.  I am constantly identifying background music in noisy restaurants- much to the surprise of my husband who usually has to really focus to hear the song- and yet,  I can't hear a person talking directly in front of me.  It makes so sense, but I've always been thankful that I am able to enjoy music no matter what.

When I was initially considering the surgery, I just assumed my understanding of music would become even better.  I would be able to hear better, after all, so music must become clearer, right?

A few weeks ago, I talked with several recipients and they shared with me some not-so-good news.

"Music appreciation," the one lady stated, "is probably the most difficult part of hearing with a cochlear implant.  Music is so complex that it takes a long time before the brain can make sense of songs."

This thought has been difficult to accept.  Much like not being able to hear the natural version of my kids' voices, I mourn that songs might sound different to me after surgery.  I have faith I will adjust, but it's frightening, nonetheless, to possibly lose something so precious to me.

I'll end this post with a final fear and an interesting question.  I was recently reading about a recipient's experience, and she wrote how she still "hears" a drilling sound  (FYI: The surgeon will drill a hole in my head during surgery.   You would think I'd be scared of that, but it's the next thought that really bothers me).  So anyway, this woman wrote how she still hears the drilling noise, probably because it was the last sound she  heard before losing what was left of her natural hearing.  I am PRAYING that this does not happen to me.

I was just telling someone this story and she thought up a unique solution. She suggested  I ask the surgeon to play a song next to my ear while drilling, increasing the chances that if I must hear a ghost-sound following surgery, it will be music, and not a drill.

So my question:  What song would YOU pick?

8 comments:

  1. Beautiful Pam, thank you for sharing your fears and tears with us. Both, which are very real -- I understand.

    A certain amount of "fear" or "doubt" is healthy -- invigorating even. The tough part is not allowing that fear to unbalance the scales. You are not making some impetuous, impulsive decision here. You are making one for the betterment of your life. And I applaud you.

    Colin and Claire will ALWAYS be your faved wee ones, commandeering a place in your heart. Nothing (and I mean nothing) can rob you of that -- ever. Not ever.

    As for your "last song" -- I think it should be one that YOU pick. However I would also like to say this: no matter what happens, you will never lose the songs already in your head. They are there only in part because of the "noise" they make -- but more fully because of the meaning they have to your life. No drilling sound can take that away from you. Ever.

    Love, Donna

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    1. Thank you, Donna. Your writing is so beautiful. I haven't thought about "never losing the songs in my head," but your comment made me recognize that for as long as I can remember, I've gone about my life with a private soundtrack going through my mind. Those invisible songs make me feel strong, they help me cry when I need to... they make me laugh... and thankfully, I haven't had to walk around with a boombox on my shoulder to "hear" them. They are always there when I need them. As always, thank you Donna.

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  2. Hi Pam...
    As time grows closer, it all falls into place. I have always been apprehensive with all of my surgeries, all 15 (or so) of them. It seems to have a way of working itself out, especially when you are a good person, and do your best to live by 'The Golden Rule', and I truly believe you do, as many of us around here do. After saying that, now my answer to your question... which I would not expect to be the same as yours....I have had some wonderful experiences with my daughter, son and wife, at concerts by a band called Steven Kellogg and the Sixers (sk6ers.com). A few months ago, (shortly before this illness bout),I flew into Albany from Indianapolis around 5:30 pm. Kerri and I had tickets to go see the guys at 7, at The Egg. A few days before, she was informed that she had a mandatory exam at 7 pm...That night...So, she took it (the exam), and was to meet me at The Egg, where there is no parking by the way, In downtown Albany...Really??...Well, all the things that happened next are as she described in a wonderful letter to me at Christmas, "A scene from a horror movie"....That is a story in itself, as I tried to find her, in a parking garage, downtown, she could not find her way out of....Anyhow, in her letter she also says, It was a great way to listen to some awesome music, (and we actually sat down 5 minutes before our band went on, as the openers took the perfect amount of time, ...opening). She also said whenever she listens to these songs, she immediately thinks of me. She quotes one of the new songs we heard that night, which yes, finally, I am getting to the point...."All the places I go, I always know, home is wherever you are"....As I was rolled into surgery from ICU, where everyone waited all night for my blood to thicken enough for surgery, I sang to my son and daughter, "This is not my favorite place"...I was heavily sedated due to my pain, and apparently not always coherent....but that would be my song. It is called "Favorie Place". I play it often, and it will always be one of a handful of really special songs. I hope I get to play it for you at The Club one night when this is all done. As you probably know, that is also one of my "Favorite Place"(s).

    LYRICS:
    I gotta get back to the city where the sound is the subway at night
    All the people I see on the crowded streets, it helps me to feel more alive

    I gotta get back to the country, where the sound is the song of the spring
    The kids in the town and their running around, it helps me to fell like I’m free

    This is my favorite place, my worry slips away
    I could stay here for days and days and days and days and days
    This is my favorite place, my worry slips away

    It’s time I was getting back home, where the sound is the song in my heart
    All the places I go, I always know that home is wherever you are

    This is my favorite place, my worry slips away
    I could stay here for days and days and days and days and days
    This is my favorite place, my worry slips away

    All the places I go, I always know that home is wherever you are.

    Quotes copyright Stephen Kellogg and the Sixers.

    My suggestion for your song, is one that you and your family have a connection with. Record it, put it in your I phone, I pad, or whatever you use, and enjoy it now, and have it available for one of your first "sounds" after your succesful procedure. The "Last Song" theory is not an option, as I think by now, hundreds of people are pulling for you. If you get a chance, check out the song I mentioned, you may find it suitable as a # 2.....Thanks For Sharing........Our Thoughts Are With You !!!

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  3. Tim, this is beautiful and it made me cry. Though I don't know Stephen Kellogg and the Sixers (I'll check them out though), I identify with your sentiments and also the parallels in our family structure. Claire is my affectionate sweetheart of a person, always looking to help others (and she also has quite an endearing bond with her Daddy). In fact, I've compared Colin and Claire to Cory and Kerri before, hoping my children as adults develop a bond as strong as theirs seems to be. This process has certainly helped me to realize how wonderful my family is. Your comment reminds me too. Thanks.

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  4. Pam, I really like your writing as it is quite emotional and poetic. It sounds like you are going on an adventure, which I guess you are. My prayers are with you from the bottom of my Christian conservative heart. Song? How about "Don't Think Twice, It's Alright" by Bob Dylan. Moving forward, no regrets. Good luck.

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  5. Thank you for reading and commenting, Dave. It's fitting to see your comment on this particular post since we've had such great discussions about music. And yes, this IS quite an adventure, and often, it's as frightening as it is exciting. I will try to use your words as a personal mantra: Moving forward, no regrets. Thanks!

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  6. Hi Pam, I am so glad I found your blog, and realise I am not alone with these thoughts of terror that I am feeling. This would have to be the best blog I have came across online outlining your deepest thoughts. I too shall be losing my residual hearing in my right ear (hopefully I avoid the pumpkin head lol) . I guess I shall soon find out on 10th December. I've never before the last few weeks experienced such a roller coaster of emotions. If only people truly understood how hard this decision we make to try and better our lives. Maybe once I get over the fear of my head drilled into I'll be fine. There aren't enough words to thank you for sharing your journey.

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