Sunday, April 1, 2012

A new blog, a new truth, a new chapter

It was five years ago when my son, Colin, then a toddler, described my ears as “broken.”  It was heartbreaking for me; I didn’t want him (or anyone for that matter) to see me as limited or different, and the word “broken” suggested an appearance of weakness I’ve been avoiding my whole life.  Still, I understood that for him, this was a simple explanation of my degenerative hearing impairment, a permanent loss that is rare and not easily improved by hearing aids. 

When I became a mother,  I desperately fought to show I was competent.  Not only was I hearing impaired and trying to act as if I wasn’t, but I was fresh out of college when I became (SURPRISE!) a young mother.  Of course I wanted to be a good mom for the sake of Colin, but at 23 years old, I also cared a lot about what others thought of me.   I wanted them to see me not only as a good mom but as a good future wife of my fiancé- now husband, Jeff, and also a good employee, a good friend, a good writer, a good cook, a good dancer… I could go on and on.  Anyhow, whatever I was doing at a given moment, and because of the high (and often unattainable) expectations I set for myself, I wanted others to think I was great.   If I sensed they felt I was anything less than that, I found a way to blame my hearing loss for holding me back.  To cope, I have often pretended to hear when I can’t, and frankly, it’s EXHAUSTING.

I have wasted so much time and energy to communicate as a hearing person when if I were to just admit the truth to people, life would be so much easier.  I know this intellectually, but emotionally, it’s difficult.  I wish I could declare that I don’t have any shame or embarrassment associated with being hearing impaired (I know I can’t help it, after all), but it would not be the truth.  I wish I enjoyed being alone more, but that doesn’t work for me either.  Even in the noisiest, most difficult-to-hear situations, I am an extraverted person energized by large groups of people.  To be away from that, even when I can’t hear a single word that is being said,  is too much to bear.  As a result, I am perpetually at odds with my ears.

When I turned 30, after 21 years of knowing I was hearing impaired, I felt the most broken I had in my entire life.  My hearing had grown worse, and parenting, socializing, and working became increasingly more challenging.  Something had changed, and it became excruciatingly difficult to understand the world around me.  There were times when I didn’t hear my name in a waiting room, or I couldn’t enjoy a movie, and I would get in my car and cry- literally sob -for hours.  I was so angry and defeated.  I felt hopeless.

In 2012, at the age of 31, I was struggling more than ever to hear and decided to have my hearing tested again.  I learned I was able to lip read with 98% accuracy.  Without people facing me, however, I tested 20% for speech recognition.

The truth?  My hearing sucks.  IT.  SUCKS.  Though I hear low tones normally, when tones reach moderate to high frequencies (think cell phones, sirens, oven timers), I don’t hear much at all.  If I do, I am confused as to where the sound is coming from, and I imagine I hear a distorted version of the "normal" sound.  Considering that speech is a combination of all frequencies, when someone talks, I often hear a chaotic, static-like bunch of sounds, as if the person speaking is under water.   I struggle with clarity, and if there is any background noise-and there often is- forget it.  This is not a hearing loss where I can turn up the volume on the TV and suddenly hear better.  Naturally, with the ears God has given me, my hearing is poor and steadily declining—that is, unless drastic measures are taken. 

At the age of 31, I’ve decided I don’t want to feel broken anymore.

After trying five- yes, FIVE!- very powerful versions of state-of-the art hearing aids, and after “successfully failing” my 2012 audiogram, I have qualified… finally…  for a cochlear implant.

My surgery is on April 18th. SO SOON.  It is anticipated that my life will change dramatically.

In the time leading up to the surgery, I will write more explaining the procedure, my thoughts about it, and what is expected regarding recovery.  For now, I will say that I have been told that in time, I could eventually recognize 85 to 100% of sounds around me.  I can not even imagine what this will be like.

I realize this blog will reach many who know I am hearing impaired.  I also know there is a good chance that whoever you are, we have never talked about it before.  To my family, my friends, my classmates, my teachers, my colleagues, my bosses, my babysitters- heck, even the nice workers at Dunkin' Donuts who have to deal with me not understanding them at the drive thru about 95% of the time, I sincerely thank you.  Thanks for repeating yourself, for speaking to me face to face, for taking whatever extra step it might have been so that I understand you better.  I appreciate it.  More so, I thank you for letting me be me, even if it meant allowing me to pretend for all this time.  But the truth is out now, and a new chapter begins.

20 comments:

  1. This is one of the most honest, beautiful pieces of writing I have ever had the honor of reading. The most important pieces of writing, the most moving text are the ones that come from bravery and the heart. You have done exactly that with this blog post. So well done, Pam. So amazingly well done.

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    1. Your comment means so much to me because YOU are such an amazing writer. Thank you. It felt brave to share my story, but I'm not sure if I would have if it wasn't for something that happened to me on Friday. A few months ago, when I was extremely frustrated, I found an online support group for people with hearing impairments. One of the site's mentors and I became friends on Facebook. So on Friday, I wrote to her and admitted I was scared about the upcoming surgery. She inspired about 50 or so CI recipients to write me with testimonials of their experiences (all good), and it meant the WORLD to me. I realized sharing your story can really help people. It's helping me a lot too!

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    2. Hi Pam, can i please get to know the group that helped you?

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  2. Awesome, powerful writing. Best of luck!

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    1. Thank you so much. That means a lot to me.

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  3. Wow! What a powerful piece. As someone that has known you for twenty-some odd it is so disheartening to read this revelation. While our contact has lessened over the years I am certain you remain the upbeat, optimistic, confident person I knew many years ago. These attributes are what makes the struggle you detail in your blog that much more surprising. The courage you've mustered to share your story is inspirational. I wish you the best of luck and look forward to following your journey.

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    1. Thank you so for writing that.

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  4. We are all broken in a variety of ways, but broken still...all of us. Thank you for sharing your life here. Thank you for the encouragement you display in your writing, to forge ahead into yet another victory. I will keep you in prayer.

    Deb (Donato) Schander - friend of mom's

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    1. Thank you Deb. That is much appreciated.

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  5. Pam you are truly an inspiration to all. Having known you since you were a little girl, and aware of your hearing loss, I was always so impressed with your love of life. I wish you much good luck on this next part of your life journey. Your writing is so darn good. Keep us all posted on what I know will be yet another success for you. With all good thoughts and prayers,
    Nathalie Hillman xoxo

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    1. I love you, Mrs. Hillman. Thank you so much.

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  6. Pam,
    You don't know me, but I am a distant cousin of yours. I'm sure you've heard the stories of Archie Richard. Well, I am his oldest grand child. Karen's daughter. I am also a licensed hearing instrument specialist, working at a hospital with a group of ENT doctors and an AuD, who all do CIs, and very successfully, I might add. I am so impressed with your blog and I recognize so many of my patients, as well as so many of our mutual family members, in your writing. I always thought that the Richard family yelled at each other because there were so many of them that they needed to yell to be heard above the other yelling. Now I wonder if they all had hereditary hearing loss! My mother, Karen, has severe mixed loss. Archie wore 2 hearing instruments. I am probably well on my way to them, myself:)
    In any case, I am proud to be related to such a brave and talented writer and I will be following your blog closely. I wish you a speedy recovery!!
    Kim Pawliger Milner

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    1. Wow... this is so neat. Thanks for writing.

      As far as I remember, it has not been mentioned to me that there was hearing loss on the Richard side of the family. My grandmother and great aunt on my mother's side, however, were both hearing impaired, but I'm pretty sure they developed their hearing impairments later in life. In any case, the origins of my hearing loss are somewhat of a mystery, though my sister, Mandy, has almost an identical situation.

      I am looking forward to a successful surgery, and I am happy that you are following me in the journey. Thank you!

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  7. Pam,
    I am so happy for you and the journey you're embarking on. I cannot imagine it is an easy one but the right ones rarely, if ever, are!

    You are successful in all you do, can you just imagine what you'll conquer after the procedure!?!

    I have to say, I've always been amazed, and totally jealous, of your rhythm on the dance floor :) that I can't wait to see what you've got when your hearing is improved!
    Good luck with everything...I hope to see you soon!

    I'll be thinking of you on the 18th.

    Love, Julie

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    1. Thank you, Julie. That is a really nice note.

      Funny- there have been several comments about my dancing. My hearing has always puzzled me when it comes to music. I can be at a very loud restaurant, for example, and know EXACTLY what song is being played in the the "background music." This has always amazed Jeff as I won't be able to hear HIM sitting right next to me, but I'll be like, "Jeff! Listen! I love this song!" He usually has no idea what I'm talking about but my song recognition is very accurate. I've always thought I would be a good contestant on Name That Tune, if it was still a game show.

      From what I have heard from other recipients, music appreciation will be tricky following the surgery and I will really have to work hard to train my brain to understand the complexity of music. I will have to write about it!

      But I will never, ever give up dancing. :)

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  8. I am so excited for you, Pam! I cried when I read your heart in this post. You have been set free, my beautiful friend. Take a deep breath in and know you are surrounded by love, support, and encouragement.

    There is NOTHING "wrong" with you. You are strong, you are amazing, you are passionate, you are determined, and you ARE good at all the things you outlined above.

    You set an example for everyone around you how to be someone who embraces life despite what it throws at you. The fact that you've been doing it all as you've suffered silently just makes the rest of us want to hold you close and affirm just you how cherished you are. Your hearing loss is not "you", Pam -- YOU are you.

    It's not that often someone is willing to bare their soul and expose the inner workings of their heart to the extent you have. What a gift you have given not only to yourself, but to each of us as well. THANK YOU!

    The shackles of judgment (perceived and real) have now been decisively, deliberately kicked aside and I, along with the rest of your cheering section, am so proud of you and happy for you.

    I am grateful to call you, Friend.

    Love, Donna
    xo

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  9. Well, the ugly cry sobs have started once again. What a week this has been... my heart is just filled with happiness, and also an acceptance and peace that I've been lacking for so long. This response, Donna, is such a gift to me-- yes, it's beautifully written (Are you capable of writing anything that is NOT beautiful?), but aside from the writing, you know how much I love and admire you. This means the world to me. In fact, I have decided to call this my "bad day pick me up" letter; even in the crappiest of days, how can I possibly feel bad if I read THIS? I am so grateful you are part of this journey with me. Thank you Donna. You are beautiful.

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  10. Hi Pam, Thanks for sharing your story. I am excited for you and your decision to have the surgery. May God bless you on the rest of your journey and I am anxious to read more as you continue to share. This is also another opportunity to thank you for being so kind to me when I first moved here 4 years ago.
    Love Carrie Sullivan

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    1. Thank you so much Carrie. Was that REALLY 4 years ago? Wow... I was happy to help.

      Thanks for your support and for following me on my journey. I appreciate it!

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  11. Hi Pam. I love your story. Thank you for sharing so openly and honestly. Your hearing loss sounds eerily familiar. Identical really, to my own. Interesting to note that your sister has hearing loss too. It runs in my family as well. As a recent first time CI recipient I can so relate to what you're experiencing. Feel free to stay in touch.
    Barbara

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